Congenital hypothyroidism is the most common preventable cause of neurodevelopmental delay, with an incidence of approximately 1 in 1,000-2,000 live births in India. Universal newborn screening using cord blood TSH testing (cutoff >40 mIU/L) or day-3 TSH testing (cutoff >20 mIU/L) is essential for early detection, as clinical screening alone identifies only 15-20% of affected infants. Treatment with levothyroxine (10-15 mcg/kg/day) should begin within 14 days of life, with FT4 as the primary target in the first two years and TSH as the primary target thereafter. The key message is that doing something is always better than nothing, and cord blood screening at minimal cost (20 rupees) can achieve 97-98% coverage, making it the most practical approach for universal implementation in resource-limited settings.
World Thyroid dayAdded:
Dr. Nila moan President-elect Dr. Singrausa the past president Dr. Wasant Kaladka all the five vice presidents the treasurer the joint secretaries and uh uh the pre the chairperson of Indian society of pediatric and adolescent endocrinology Dr. Andra Bajpe and the secretary Dr. Dr. Rameindra Kumar Sa and the panelist for today's sessions uh Dr. uh Vijay Kumar and uh Dr. Ankita.
In addition, a very good evening to all of you. As uh we all know is always committed for its um mission of uh spreading awareness on important on the diseases which are of public health importance and today keeping that view in mind this uh world uh thyroid day is being celebrated.
We all understand that it is a public health problem despite uh a great reduction uh in thyroid disorders uh preiodine supplementation era visav post iodine supplementation era. uh though this uh supplementation national iodine supplementation has uh spoken a big big big success story despite that it still is a problem and still lot of cases get undiagnosed uh thereby affecting the overall health of children and adults and even young women and adults. So with this uh background it is our pleasure today to have this kind of awareness program on the occasion though it was celebrate it is celebrated on 25th of May but uh for the ease we have we are celebrating it today so I request our president Dr. Dr. Nila Muan madam to kindly share u your uh your vision on this particular topic.
Uh thank you so much Roa respect to Dr. Singh Relo past president Dr. Vasinda Halok and all the uh office bearers of the endocrine chapter we have Anurag Graindra and the faculty who've joined it's pleasure um uh to me I think when I say thyroid the first few things that come in my mind is that probably something like opposite of so being such a small organ in the size in size. The amount of impact this organ has right from you know the development of the brain the growth uh the well-being uh the emotional well-being and the metabolism effects cognition etc. So it is really a very influential organs and probably one of the most uh common preventable neurodedevelopmental issue that we can talk about and wearing the hat of a leadership today. I think to me one of the most important thing would be uh to talk about uh how to strengthen the neonatal screening across the country and I'm sure we going to get into debate as we uh get whether it is the cot blood whether it's a prick what is better but what is easy and these arguments keep on and are we in the country uh isn't it time for universal um by the government and the sectors these issues we talk and then we are also realizing it's not only uh the pediatricians are extremely responsible community who should understand that uh uh it is their responsibility to uh identify this issues not only the newborn screening but also to detect these issues that come later on. uh and we are seeing that there is an increasing uh disorders of uh especially autoimmune thyroiditis and autoimmune associated thyroid for dysfunction which is probably related to the changes in you know like obesity environment etc. uh with that and still there is no uniformity of uh there is a lot of confusion myths when it comes to uh conditions like sick u thyroid and uh subclinical thyroid and the information that is disseminated among the pediatrician is much less than it should be. uh these are my thoughts uh when I speak and I hope this collaboration between uh you know the pediatricians and the pediatric specialists like today we ensured we could collaborate with the endocrine and lluji forum and subsequently we should be collaborating with the you knowologist the public health experts etc policy makers and soon you will see we're working on a policy we uh strongly working on how to strengthen the screening and let's see uh what best we at the leadership is able to do about it and I congratulate uh the ASP team for taking this step forward for Anorag and uh uh Raindra to connect us for this and wishing you all the best uh in the forum. Thank you so much for having >> Thank you. Thank you president. Madam, your vision is uh definitely going to take all of us uh give us a direction especially in uh in uh in the direction of uh newborn screening a much needed uh action for all of us to take. Uh now it's again my proud privilege to request um to welcome uh our president-elect Dr. Singravelu and I request uh sir to kindly say a few words on this occasion of world thyroid day.
>> Thank you HSA ma'am and our dynamic president Hilam and our immediate past president Dr. Wasenth and it is a great uh evening that we are collaborating with our adolescent endocrine and pediatric endocrine chapter led by Dr. Ranurag and Rabindran and expert palist but definitely as madam told it is a very much need of the hour where still whatever we are talking about it which is one of the preventable mental retardation is neonal thyroid it can be only be prevented by proper screening and appropriate institution of treatment as our president already explained and we are going to hear from the experts And definitely it is a very good move that IAP collaborating with our own people so that we will dissipate the knowledge through the not only through zoom through our DG app so that more than it will be stored and more than 50,000 members of we'll be able to definitely what are the reason developments and all that as still confusions are there whether to take blood immediately after birth or 24 hours or 48 hours still lot of things are there I am sure that today panel will be able to clear all our doubts give our uniform guideline that which could be followed throughout our country with this I wish you all the best and a happy learning that AP has taken this very good initiative today collaborating with the chapter thank you ma'am over to you ma'am >> thank you very much sir and I now u my privilege again to invite uh our past president Dr. V was Kalatkar sir sir kindly bless us with your few words of wisdom >> evening respected Dr. Nam our president Dr. Sigaru our preced Dr. uh and all today's esteem faculty it's really today we are celebrating a day which is definitely going to improve mental health of our children those who are really sufferer from thyroid 35 years 35 years before when we took example of a thyroid it was like a go the only word we were knowing but now it's beyond people like our faculties like Anuras and Gita and all these really they're doing the great work and now there is a lot of importance to pediatric endocrinology. Last year our one of our module was endocrine module where Dr. Anur Dr. Raindra um these all people help lot and it was really good mod there is a need of such module in future also and let's hope we will be after the government for screening of thyroid that to be mandatory I know uh since last three year she was for that screening module and uh Dr. Nam is doing really hard work for this that government is insisting taking this issue to government. I think with the help of this faculties and our endocrinologist pediatric endocrinologist let's go ahead and it should get done then it will be a success of thank you once again wish you happy learning.
>> Thank you very much sir. Thank you. Now uh now let me hand over this uh uh whole uh proceeding to the person who had uh envised this whole program under the guidance of our president Dr. Nila moan madam none other than Dr. Raindra the secretary general the secretary of endocrinology chapter so over to Dr. Ravindra please. Uh thank you Richard ma'am uh for your kind words and it was all because of your vision and ma'am vision. So thank you ma'am. Thank you president sing and seen you after a lot of time in a different shape. Uh on the first instance I couldn't recognize you. I thought someone else was you know speaking then I realized no it's you only and I'll I'll not waste much of time and straight over to our president Dr. >> uh thanks a lot Dr. Raindra for this uh wonderful initiative and to bringing forward two important stakeholders in terms of children health, children's health in the country especially on a disorder which affects every part of the body right from growth to development to puberty to bone to heart and everything.
I'll really express my heartfelt gratitude to Dr. Nila Moan for kindly allowing us to interact on this session.
Dr. Ruchira for taking a lead in this regards Dr. Shangaru and the entire central IP team who has been participating in that. Dr. Vasant has always been involved in encouraging us with regards to these aspects. Now thyroid is one group of disorder which really is something which Dr. Nam really said that so this is something which can really have a huge impact and it does have an impact on every part of the body. most important of course is on neurode development in the very early age group and it is clearly the most important preventable form of neurodedevelopmental dealer. We'll try to use this uh panel discussion to go through all the aspects of thyroid disorders and uh this is something which is going to be interesting case based and interactive and we'll try to get a lot of inputs from various experts and try to see how we can improve the lives of children with the endocrine pedi the thyroid disorders in particular. So uh I hope the slides are now visible and uh so this uh case is something which I'll always like to start off with with regards to the overall aspect of thyroid screening and the importance of congenital hypothyroidism identification. This was a 20 yearear-old girl who presented to a pediatrician at the age of four years with all the classical features of hypothyroidism core skin TSH being more than 100. She was started at a homeopathic dose of thyroid that was only 6.25 micrograms and then as Murphy's law puts it was lost to followup resulting in devastating consequences. So when she presented to us at 20 years we know what can be done and what's really happened sadly in that perspective. So whenever I ask about what are the common pointers of congenital hypothyroidism, people do talk about things like hypothermia, prolonged jaundice, bradicardia, talk about scores skin, umbilical hernia and all the other features. But the most important sign of congenital hypothyroidism is that there is no sign.
The most well-trained pediatric endocrinologist can identify only around 15 to 20% of infants who have complete congenital hypothyroidism at day seven and day 14 of life. Meaning thereby is that clinical screening is something which is very very uh counterintuitive and what we need to do is to go for screening and this is the biggest message we at Indian society for pediatric and endocrinology like to do that congenital hypothyroidism screening is clearly something which we should do whatever option we are using whether we using a cord blood whether we are using a day three sample we should go ahead and do that that is the most important thing and then interpret and manage accordingly I'm really honored to have an esteemed panel comprising of Dr. Nilam, Professor Vijay Kumar from Calikat, Professor Raindra Kumar who is also my secretary of Indian society of pediatric and neurosinocrinology and Dr. Ankita Maheshwari from Indor. So just to touch base basically about the physiology we all know that the hypothalamic thyotropin releasing hormone controls the production of TSH from the pituitary which acts on the thyroid to produce the act they form T4 which actually is a pro hormone. This T4 is activated into moniase uh uh activity to T3 and most of it is bound to the thyroxine binding global over 99.7% is bound to TBG. Therefore, it is the free portion of the hormone which is actually active from that perspective.
Now what we need to remember is that whenever there is increased thyroid activity, it suppresses TSH level. So in individuals who have deficiency of thyroid function because of a thyroid problem quote unquote primary hypothyroidism we would expect the first change to happen would be to increase in TSH level followed by a decline in T4 level while T3 will be conserved because of moni activity is hyperactive. So if we want to conclude that if you want to evaluate for primary hypothyroidism look for TSH first, T4 will be second and T3 will have no value at all and often we get confusing reports with T3 and referrals are done which does not require any evaluation from that regards. However, if there is a problem in the hypothalamus or the peditary which is the central hypothyroidism, we would expect a scenario where the T4 will decrease where the T4 levels will be decreased and uh the TSH levels are normal from that perspective. So this is known as central hypothyroidism. Very importantly we expect that anybody who has got a low free T4 we expect the TSH to be skyhigh. So if the T4 is low and TSH is less than 20 this is indicative of central hypothyroidism from that perspective. In thyroidosis on the other hand the first thing to go down will be TSH followed by a increase in T4 followed by a rise in T3. certain group of individuals may have elevated T3 levels which is known as a T3 toxicosis.
So the only role of doing T3 in a pediatric age group is in the setting of thyrotoxyosis from that perspective. So if just to summarize in terms of what thyroid function test should we do is that if you have somebody who has got primary hypothyroidism the TSH level should be high the T4 should be low T3 is unreliable. So in this scenario get a free T4 and a TSH level. While in thyrotoxyosis the TSH will be low, T4 will be high and T3 may be higher in iodine deficiency. So there you need to do T3, FT4 and TSH. So if you just remember this much in terms of what sort of test you want to do when you are evaluating would be sufficient. very important understanding of perinatal thyroid physiology is essential because the fetus is essentially staying in a quote unquote hypomabolic or hypothyroid state. So this is basically a state which is anabolic.
They don't need thyroid hormone for temperature. They only need it for brain function. So even if we have 30 to 40% of actual thyroid activity which is there in the fetus, this is enough to sustain them. So they do have a high level of expression of monodiins 3 which is inactivating the thyroid from that perspective but as soon as a child is born there will be a sudden thermogenesis which is there. So there will be a catabolic state activation of the monode one resulting in increased production of T3. So if you look at it the TSH levels remain low they are absolutely developing first of all around 15 weeks of life. they continuously increase at 40 weeks and as soon as the birth happens there is a rapid search which happens the T4 levels follow a bit later and T3 even later from that perspective. So if we have a infant who is born at the age of 28 weeks of gestation or beyond there would be a tendency of having some form of hypothyroidism which we call as transient hypothyroidemia of prematurity. So this is one condition wherein you do not need to treat and in fact treatment may cause more adverse effects. So avoid treating in the pre-term infants. The other characteristics of preterms is a short and blunted TSH rise which happens in that perspective. Now placenta is a big se for TSH. It doesn't allow TSH to cross from the mother. But 40% of T3 and T4 will cross the placenta and reach the fetus. This is sufficient for the fetus to have enough neurodedevelopmental. So even if the fetus doesn't have any thyroid and mother is u thyroid we will have a good neurodedevelopmental outcome giving us a 14 days window in the postnatal period to allow thyroid supplementation and to achieve a good outcome in that regard. So this is something which is extremely important to remember. However, if the mother is hypothyroid and is not treated properly, there would of course be impact on the risk of miscarriage, risk of premature delivery, complications and very importantly it will also have a impact subtle impact I would say in terms of neurodedevelopmental outcome of the baby. So thyroid function normalization and mother and fetus both is important.
This is already alluded by me that we have our significant surge at birth because of cold stress. the TSH goes up.
So if you want to really assess TSH levels, the best time to do is at cod blood and at day three. Now there is a lot of problems in terms of day three because most children are discharged by that time. So cord blood would remain a reasonable option in the Indian setting providing us with an opportunity. There are alternate cutoffs which have been suggested by individual individual centers as well at earlier sampling of DSH may be done. However, the most important thing to remember is that the action should be specific for the gestational ages. So best to remember is 40 2010. So individuals in the first week we say 40, second week we say 20 and around day 21 becomes 10. The European guidelines talk about a figure of six. And this is something which is important. So what I'm trying to say is that isolated TSH elevation beyond 3 weeks of life requires treatment in the first two week use a higher cutoff in that perspective just to finally come back in terms of thyroid interpretation.
So if the FT4 levels is low we expect TSH to be more than 20 this is primary hypothyroidism. If the TSH is below 20 this is central hypothyroidism. If FT4 is high, the TSH should be undetectable.
This is thyrotoxyosis. Detectable TSH in this setting is a very rare situation of TSH adenoma. So always look at FT4 and TSH together in that regards. How do we interpret neonatal screening? So as I said, we can do a cord blood sample or a day three TSH. If the TSH is more than 40, confirm it using a FT4, consider starting treatment. Levels less than 20 and different cutoffs have been suggested at different ages. Treatment may not be there. This is from the Indian Society for Pediatric and Endocrinology Guidelines published in Indian Journal of Pediatrics. I'm really uh pleased and honored to mention that the IAP and the ISP are developing combined guidelines of congenital hypothyroidism which hopefully should come in with new evidences coming from India and abroad about these screening criteria in the end of this year. Now if TSH is between 20 to 40 we should retest at 14 days and if the levels go are still about 20 we should confirm and treat. If it's less than 10, no treatment is required. Between 10 to 20, the level should be repeated at 21 days where a cutoff of 20 and six becomes important in 6 to 20. We should consider looking for possible causes like iodine deficiency, iodine excess, amiodarone treatment or hemioenesis. So 40 2010 or 40 26 is what we should look at from that regards. Individuals who are premature tisome 21 samesex twin because of the possibility of twinto- twin transfusion and hospitalization require a rescreen after 2 weeks. What about pre-terms? Here the TSH rise is less and delayed. So if TSH is less than 10, repeat it again at 2 to 4 weeks. If the TSH is more than 10, we should look at FT4 and TSH. If FT4 is low and TSH is high, this requires treatment. If the FT4 NTSH is normal, then followup. While if you have low FT4 with a TSH less than 10, this could either be a multiple pitary hormone deficiency or transient hypothyroid prematurity. So look for MPHD features.
If they are present, treat alternatively look for FT4. So very importantly use a cutff of 10 in the pre-term neonates.
Very importantly if the TSH is less than 10 and FT4 is low may not need treatment and always repeat at 2 to 4 weeks from that perspective and that becomes important in evaluation. Thyroid scan gives us information about sight and function. Mostly we use technesium scan after feeding. We should do it ideally before treatment. We can also do it if the TSH is more than 30. This gives us information about structure and function like absent thyroid, ectopic thyroid the most common form, hemioenesis on one side and dysomesis.
Remember while thyroid scan is desirable, it is not essential. It should not avoid treatment. We can always reassess at 3 years of life to identify the scenario. Another option is to look for thyroid ultrasound. Remember that thyroid is a large gland in the newborn period. So if the radiologist is saying that there is no thyroid, it usually will mean aesis. Very importantly in scenario where there is a problem of TSH receptor antibodies, TSH receptor problem, sodium iodine simporter defect the scan may show absent thyroid but the ultrasound will pick up the thyroid and this is known as a case a typical case of apparent athyrosis from that perspective. So if thyroid scan shows ectopic that is ectopic increase uptake means droenesis.
If it's absent look at thyroid ultrasound to confirm a genenesis if it is present and TSH receptor antibbody is present this is maternal antibodies it will improve in couple of months if it's absent these are the rare disorders so again this approach becomes important always start with thyroxine in very severe cases we may consider LT3 we should give it 4 hours after feed which may be difficult but this is something to look at we always should prefer a FT FT4 base dose. So if the FT4 level is very low, use a higher dose of 12.5 to 15. Between 5 to 10, use 10 to 12.5 and more than 10, we start with a lower dose in that regards. So having said the background, we'll start off with the first case, a 3-day old girl with no family history of hypothyroidism, no features of hypothyroidism. Do we really need to screen that in that perspective? Um Dr. Raindra maybe we'll have your input.
>> Thank you Dr. Nuran. Uh thank you for setting the ball rolling already. You have told all of us great deal about you know hypothyroidism and that's a very important question which is very very pertinent in today's scenario that there is no family history of hypothyroidism there is no feature of hypothyroidism should be screened. So yes definitely and there is a definite reason for that and why because this is a very common neonal penital hypothadism and if you look at the incidents from the various across the country I mean incidence is somewhere one in500 even people have reported less than that if you look at the scattered uh incidence and if you look at the impact and clinically as you said just 1 in 6700 and the the patient may have severe mental retardation if the patient has not been treated within the first two weeks. So and that's an sort of medical emergency because you have to treat immediately and we just have a two weeks and yes we have a definitive diagnostic test which are available with us and we have number of tests for that and easily diagnosis can be made and this is a very good slide which is clearly depicting the incidence and prevalence of congenital hypothyroidism across India and if you look at that very carefully somewhere Delhi depicting one in 1,600 and Chandigar went in in 1,400. But we look at the just one in 735 live bone baby. So out of that one is having congenital apathism. Look at the incidence of cob somewhere close one in 800. So incidence is so high and if they are not being diagnosed at the right time and not being treated at the right time it will be a huge burden for the family for the society and this is you know how much the human and economic cost which has been just published in the journal and by Dr. information you look at the incident some of that we have not treated by just a simple newborn screening test then the severity of CH 52 maybe somewhere 14,000 and you see the cost is very huge when the screening cost and treatment cost is far far less than that so >> I think this is extremely important in this single message which Dr. Raindas said that we should do screening in everybody. Now there may be debate about cold blood versus day three TSH FT4 TSH alone and all that. The first message is screening should be done in that regards and both options are good enough and doing something is always better than not doing something. So I think this is a very very important thing to remember.
Now we have a case to 20year-old girl TSH is 28. What is the plan Dr. Vijay?
What do you think we should do here?
Shall we start treatment right away?
>> Okay. Once uh once again uh my sincere gratitude for including me in this discussion. Kerala is one of the state in which newborn screening is being practiced. Actually we started our newborn screening from 2013 onwards.
Initially we started cod blood then gradually moved away to uh the uh filter paper screening after 3 days. In this case the TSS screening was done at 20th hour that is that at the time of TSS surge actually just immediately after birth the TSS is uh just if you take cord blood there is no TSS that is a good time to do a thyroid screening and main advantage of cord blood screening is is very easy and almost 100 case 100% of the cases we can take the cord blood TSH we can send it by the time that child is getting discharged we'll get the diagnosis and we can start treatment that is the most important thing then we will do after 48 hours then cold blood screening you can do then this filter paper screening we can dried blood spot we can do if you are planning to combine with other other testes like c and here it was done at at the time when the tss is very high and the elevated ts is normal in that age so we have to repeat so after 48 hours then we can repeat both FT4 and TSSH. So you can see that uh after that TSS search TSS has come to normal. So this child is doesn't require treatment that is a normal TSS search and we can follow up the child. This child doesn't require any treatment. So when to screen is very important and whenever TSH is high we have to confirm it by combining FT4 and TSH.
So again these issues about cord blood versus D3 there's a lot of debate but I would say any strategy is definitely better than no strategy at all and many centers actually start off with cod blood only and when they find the benefits the politicians and the other decision makers get pressurized and they understand the importance and then they will move more towards a day three screening using a filter paper because codb blood is much more simpler much more likely to be composite and beneficial from that perspective. So what is the prevalence professor Vijay Kumar from your areas? Yeah, the pre prevalence we have studied actually we are about to send it to for publication in our state the prevalence is very high actually that is almost one in 900 children we have started in calette on 2013 our prevalence is 1 in 8 890 that is very high prevalence so that indicates that >> the thyroid screening is the birth rate of all children so you have to screen whether it is cord blood or whether it is filter Cord blood is very easy and we can start treatment at an earlier date also. I think in in country like India I think we can start with C blood screening and we have to give importance of cord blood screening in our country.
I think that's a very very important message and the figure that we used to read was 1 in 5,000 before the screening era 1 in 25 4,000 after screening but those numbers even in western countries have come down to 1 in 2500 in India as Dr. Ravindra and Dr. Vijay I talked about we're talking about figures close to one in thousand although many of them may also be 20 30% may be transient but that's important to identify them at this point of time so now we have a day four child with TSH of 22 and this point of time this was borderline so at day 14 it was repeated it was 12 at day 21 it stickked to that persistent mark of between 6 to 20 FT4 is normal Dr. Rabindra what do you think should be done here shall we carry on monitoring till eternity or we should do something here now >> yeah that that's a very interesting scenario if you look at this uh I mean case this is TS is 22 so more than 20 obviously we have to recall we have to take a confirmatory sample but if you look at day 21 sample it is less than 10 so less than 10 is somewhere this is a very borderline and it been more than 10 obviously we would have thought that this patient is having a congenital hypothism so This patient require monitoring look at the thyroid scan uh we we have to look what is the site of the this thyroid gland uh and all of these already Dr. Ra has said told us and thyroid scan if possible can be done within either starting the treatment of within the 3 days but in this case because we are not sure about the diagnosis I mean still it is uh close to 10 but not up to the 10 we can have a thyroid ultrasound by some very experienced person then look at the thyroid scan if it is optopic obviously the treatment has to be started and as per the screening result already has been stacked and in this uh slide on the top it has been written that if it is a serum sample uh because we whatever the level of TSH is there it has to be serum sample couple of lab if they are doing from newborn screening they may report in the whole blood because it is what we are taking up in the newborn screening is the whole blood so it has to be multiplied by 2.2 to this this has to be taken care of. So if we look from this algorithm this is a fall in somewhere 6 into 20. So look at the free T4 level look at the scan if there is a ectopic gland or if there is heenosis then it should be treated as per this result of the scan. So I think this is a very very important case because now we are also seeing if people are doing more screening these sort of ambiguous scenarios come in but don't ignore anybody who has a high TSH beyond 3 weeks I would say so 402010 or 4026 criteria will help out and this case with hemogenesis would require treatment very clearly in that regards now we have another interesting scenario day 10 child whose TSH is more than 100 FT4 is 11 which is uh not very low scan shows no thyroid tissue. What would be your plan Dr. Ankita? So this is a genesis requiring lifelong treatment.
>> Uh yes sir. So now we have talked about uh uh the screening everything. So uh here it is a clearcut case of congenital hypothyroidism as you talked in your second slide only. So we have low free T4 with high TS. So definitely primary hypothyroidism because of thyroid agenesis which is the most common cause.
So we should directly start on treatment here as we have confirmed the diagnosis and add as you had mentioned in uh some of your previous slides as well that uh severity usually depends on the free T4.
So if the free T4 is really very very low we can start on a little bit higher dose say 12 to 15 microgram per kg per day. uh if the free T4 is more than8 uh nanog per dl or more than 10 uh pog per pom mole per liter we can start at a bit lower dose but the general consensus is to start treatment at a average dose of 10 to 15 microgram per kg per day as soon as you have the diagnosis preferably within 14 days of life >> I think that's the biggest message and there is also now T3 which is available now what we need to remember From a pediatrician perspective is that T4 is the only preparation to use. I have used T3 in some cases where there is very severe hypothyroidism to bring it up quickly but otherwise I think we should use only LT4 from that perspective. How do you give it to the child? Dr. Ankita.
>> So uh usually uh we say that you can mix it in half curio of breast milk because it goes well with breast milk. Sometimes it doesn't dissolve with water and we generally avoid water in newborns less than 6 months. Uh there is no syrup preparation available because it's very unstable. So we do have uh tablets which goes well with breast milk. So we can ask the mother to give it in breast milk and she should uh give it usually 1 hour post feed. And uh when they give the tablet they should not give any supplements like iron or calcium and even the feeds should be avoided post medicine because anything iron calcium any nutrient supplement or even the breastfeeding can interfere with the absorption. Suppose we are giving 25 uh the child might absorb only 15 microgram. So these are the general instructions we should give it to the mother. So give it with breast milk avoid supplements. Avoid feeds at least 1 hour post the tablet.
>> So now uh the child was started on treatment was found to have dysphorogenesis.
LT4 was started a high dose. At 4 weeks what we are seeing is that FT4 level has gone up and TSH is still up. So this is a very very common scenario which happens. So uh Dr. Ravidra what do you suggest in this perspective in terms of how do we titrate the dose in that regards?
Because because I mean these pretur should be normal as early as possible within 2 weeks. So if we are delaying the followup of the patient obviously I mean then we will be probably may not be rightly treating these patients. So within first month it has to be two weekly then first to three months it may be four weekly and whenever we are adjusting the dose because TSS takes four to six weeks to change in the parameters so 6 weeks after dose adjustment our target is that 3T4 should be in upper half of the normal level which is somewhere 1.4 4 to 2.3 g as has been rightly said and TSH should be in the global app. This should be our aim and these are the couple of interpretation many times because if TSH is high and 3T4 is still low we should increase the dose. If TSH is high but 3T4 is somewhere normal or high it means that probably this patient is having normalization of the value then maybe continue the same treatment.
If TSH is normal and PT4 is normal again continue the same. If if TSH is normal but PT4 is high still continue the same because probably it will come to the normal side and if TSS is low this is one thing and freeT4 is high or normal then it is the situation where one has to reduce the dose. However, one has to be very very careful when reducing the dose because you know it is a growing brain brain in first especially 3 years.
So uh reducing the dose is a very specialized uh domain so should be consulted first with some pediatric uh not attempting itself.
>> I think that's a very big message and very important message by Dr. Raindra that clearly we want to heir in the side of over treatment and not under treatment that is a very important part if suppose the benefit of doubt goes the dose is high it's okay low dose may be worse that is number one second point clearly is to remember that TSH will take much longer to stabilize and somebody who has a severe congenital hypothyroidism it may take months also to stabilize so go for FT4 in the first two years of life that is very very important and After that TSH becomes important. So now what is happening is that this child had disomogenesis LT4 or 50. We already discussed about that that in this scenario we should continue the same dose from that regards. Now what happened at 3 years of age the child was found to have delayed speech. So Dr. Vijay what do you think we should have assessed in this point of time or what was missed in this case?
This uh usually the whenever a child is having child is diagnosed as having congenital hypothyroidism and we if you start treatment we have to investigate some other things. One is hearing many cases of congenital hypothism especially dysphorogenesis will be having associated hearing defects. So we have to look for hearing abnormality and another thing is not related to the speech delay heart disease also at least 10% of congenital hypothyroidism will be having heart diseases and the thyroid hormone is one thing that will produce deficiency can produce delayed in the brain maturation also. So whenever a child is having speech defect so always we have to look for any case of cenator hypothyroidism important thing is we have to look for hearing defect and hearing assessment is very important and as a part of now as a part of newborn screening hearing assessment is done in all children using uh techniques also we have to use see the hearing assessment also especially in the thyroid cases >> I think that's very very important message. So your work is not stopping if just by doing the thyroid screening also look for the cardiac examination carefully. You may not need to do eco but a cardiac examination is important and hearing developmental assessment is very very important in that regards. Now we have a 2-year-old child who was diagnosed based upon neonatal screening with a TSH of 28 which was borderline already on thyroxine. Scan was not done at that time as many of these cases scan is not done. Now the child has been on 25 micrograms of thyroxine since then and never had a high TSH level. The big question now which comes with the parents are raising that they want to stop the treatment now. What would be our plan in that perspective? Professor Vijay.
>> Okay. So whenever you diagnose hypothyroidism and start treatment there are two cases. One is that requires treatment lifelong that is a permanent cases of hypothyroidism. That is one is a genesis of hypo aenesis of thyroid gland and ectopic thyroid gland. They require treatment for lifelong and majority of the dysphorogenesis also will require treatment for lifelong. But there is another group of that is called as transial hypothyroidism. Suppose mother is having autoimmune thyroiditis that can block and that can initially TSS level may be high. We will start treatment but gradually we can stop the treatment at around 3 years. There are now some reports even if you are very confident you can even stop before 3 years but 3 years is an ideal time because brain maturation is best by 3 years and after 3 years you can just relax and try to tape or stop the treatment. So what we are doing in our institute is we will do ultrasound of all children with congenital hypothesism that is a very easy test.
All institute will be having at least an ultrasound machine and if the obser observer is and the person doing ultrasound is a good person then we he can detect aenesis but ectopic is little bit difficult but a genesis for ectopic then we can tell that this child may require lifelong treatment but unfortunately we have we didn't do radionucleate study only we we could do in only 10% of the cases but if you are not doing at birth because problem is sometimes it may not be available and the treatment is more important than doing radionucleid study.
So we have to start treatment and if you are not doing that imaging we can do at 3 years. So in this child if you are looking if you think that this is a transient requires because child may require less and less amount of thyroxine maybe less than 3 micror kg per day by around 3 years and the child's ultrasound shows a thyroid gland in situ we can try stopping thyroxine at 3 years but remember that we have to follow off the children all these children and if you stop what we are doing is stop on one month and see what what the thyroid function test if the thyroid function test shows that TSH is getting elevated then you can do the thyroid scan and many many cases we have to restart the treatment in some cases if the thyroid scan is normal and the thyroid function test even after 1 month is normal then you can you need not restart the treatment you can follow up the child for few years you can repeat after 3 months then repeat after 3 months and you can follow up the children so in Our study at least one/ird of the children are having transient hypothyroidism and we could stop by 3 years but there is some notion that all cases we have to stop at 3 years and look for that it is not like that permanent hypotherctopy we have to give treatment for lifelong and you have to tell the parent that we have to give treatment for the lifelong.
So only if your TSH was not very high to begin with, if the dose was stable, the TSH never went up on followup, there's a utopic thyroid, these are the scenarios, you should try that. But yes, we are seeing 30% it may be able to stop. One of the entities is TSH receptor antibbody in mother where there could be a rapid decrease also from that perspective. So outcome we already know that there is a worsening if you are delaying by more than 30 days there is a 15 point IQ loss. hearing problem can be there and age at treatment is the single most important factor. So treat before 14 days and adherence becomes important from that perspective. Now we are moving towards more nuance situations. We have a 32 week neonate found on neurotin screening. TSH is 7 FT4 is normal. So Dr. Rabindra what would you like to do in this scenario of a pre-term neonate?
Yeah. And so uh if you look at this catch five Dr. has given us that it's a pre-term unit and we all know he has already shown in the previous slide that in three-term units there is a delayed rise of the PSH. So initial TSH may be low maybe you know maybe less than 20 and we will we may be thinking that probably this is normal no but there has to be repeat screening has to be done because there is a delayed rise and the time of the repeat screening is the two weeks. So if in these neonates you need two to four TSH is less than 10 as has been shown in this uh flow diagram algorithms then repeat has to be done somewhere after 2 weeks after 14 days.
However, if in this had been more than 10, although in our case it was just seven, then look for the PT4 and TSH and if the PT4 is normal, TSH is less than 10, then again you have to repeat it.
And if it is more than 10 which we are talking about and if it is more than 10 but 3T4 is low, TSS is less than 10, then this is again a very uh peculiar scenario. We have to be very careful because in this scenario TSH is low and PT4 also low. So something problem is above the thyroid gland. It is somewhere either in the epical or in the pituitary it may be a sign of multiple pituitary harbound deficiency features. So look at the PT4. If it is normal okay if it is low then obviously we have to screen for other pri hormone also and then it will be known as central hypothadism. Look at the cortisone level, look at the GH level and other hormones may be amazing.
Study of the brain is required especially pituitary protocol and if T4 is low but TS is more than 10 then we know it is a clearcut case of primary hypothardism has to be treated. In this case at the day 14 PS has risen to 14.
So there was a delayed rise and obviously 34 must be low. So treatments has to be given so that patient would have a normal introduction later on in life.
>> I think that's a very very important message of repeating at day 14 otherwise we would have missed out on this case.
Another 28 week of neonate who has a TSH of 22 free T4 level is reported as low.
So we have a high TSH and FT4 which is low. Dr. Ankita how would you like to approach this neonate? So uh I think sir the is guidelines had made it very clear that if you have a low free T4 then you need to consider primary hypothyroidism and in our case in this case although the baby is a pre-term but the free T4 is really low and the TSH is again more than 10 what is the cutff so we definitely need to start treatment in this baby although it's a preterm still we cannot waste time if the baby is stable yes we can have the liberty to do the scan But as Dr. Vijay had mentioned that if scan is not available the treatment should not wait. So if the facility of scan is there we should do a scan confirm the diagnosis.
As you had mentioned that the scan is showing an ectopic thyroid. So we definitely need to start treatment as per the protocol and as per the dose.
>> So I think this is again a message that pre-term we expect TSH to be low. So if you have a high TSH don't worry this requires treatment. And I think that becomes really important in that regards. Another interesting scenario, the 29 week old girl in the ICU, TSH is 14. FT4 on repeat occasion was found to be low and TSH was found to be eight. So the TSH was repeated and we found it to be on the lower side. There were no features of any midline defects or any of the features of hypoglycemia indicating a multiple predatory hormone deficiency. Uh Dr. Vijay, what do you think about this case?
this child this this maybe suppose a child uh is having some illness so that can produce some amount of disturbances his thyroid function that is called non-thyroid illness so in in such children see this child is having non-thyroid illness so this we have to repeat so when once the child improves we can repeat and then we can confirm whether the child is having congenital hypothyroidism like that. So here the problem is TSH is 40, freeT4 is less.
>> Yeah. So I think freeT4 was less but what we know is that in many scenarios in sick children also FT4 may be low because the testing is inadequate. So I think your message is very very important that if your TSH is high as Ankita said treatment is definitely required. If TSH is low and FT4 is low, start thinking of other causes before you think of MPHD in this scenario because often treatment may be harmful in this setting. So I think just to conclude congenital hypothyroidism is a race against time. We should everybody agrees we should go for a universal screening whether it's cod blood day three TSH is the best strategy. We should use age specific cutoffs of 7 14 21 40 20 10 40 26 whatever there are some variations there. There is a need to start with FT4 titrated dosing of 10 to 15 micrograms per kg per day and treat to target where FT4 is the predominant target and keep it at the high normal range. I think these are the key messages which we like to give and I think this is something which is what the our game goal basically is to have specific issues in terms of messages which are there for congenital hypothyroidism and that's the prime aim of this discussion was that we ensure that neonatal screening is happening across all board and we achieve a good outcome. So I think we will have some questions which are there in the chat box and we'll take up those questions from that uh perspective.
So I if is there any questions u third day u so I is there any questions we can take up uh from the chat? I don't see any specific questions uh at the moment from that perspective. Uh >> I think our president ma'am wants to ask something something about public health.
Uh Dr. Nilam ma'am please.
>> Hi thanks. Sorry I've been disturbing uh the our group in that. No, I think uh what uh uh we will have you from the endo team also because the plan is uh talking not only about thyroid but about the others. So we are in the process of making those guidelines but I still see a little difference in uh why we are not able to ask everybody if it is so cheap. So my question to you is that you all think that for 48 to 72 hours is ideal and uh everybody do come for vaccination. It is >> nam can I >> to in a one second so we do have 92% uh uh coverage of vaccination and uh I have read all the papers which Aju tries is talked about and so we feel that there is only a 3% people are being done so I also understand that we should do the cod blood and she has also said that it's going to be 50 rupees if we do the C blood and subsequently those who come at normal we should try to recheck them with the other method before proceeding. So there are four experts here and I want to know your thoughts.
Number one is this that should we insist for cotlet for all and those who commit normal we should then ask to do uh go in for the other test for confirmation. If yes what is the level cut off you would like to take because there are different lines which are given in WH and also what you would want in India. Number three, if you have 92% vaccine coverage, why unanimously, I mean all private pediatricians and government, why are we not able to impress onto them uh to do this test? I feel every baby born in India should have thyroid and CH and uh uh berubinometer for berubin. I mean these are something which have neurodedevelopmental issues.
So I would go step by step. I would take opinion from Anurra, Raindra, Anju, Vijay like that. So over to you. I think that's a very very important question and the reasons are multiple in terms of logistical issues, economic issue and probably a bit of the mindset issue in terms of the importance of a screening strategy from that regards. So clearly what we have discussed here is that there are various ways of going around it and the options clearly both options there's no option which is wrong in this setting. So no screening is the worst scenario. Of course, cord blood screening is probably an approach if it is feasible and can be done would be a very welcome approach to do that. Day three screening will be the ideal one but practical issues may be there. So definitely cord blood screening is there. There are study protocols which are available and the cut offs are also there. In terms of those who are likely to be elevated, we have to confirm them.
So that becomes a easier.
>> No. Do you want to take 20? because I was reading this guideline I think was the WH if I'm not mistaken it said 20 but today when you all presented your slides you all wrote 40 >> so 40 is the point at which action is to be taken if the levels are more than 20 we should reconfirm that now that would land up a re call rate of somewhere around I think 1% that will be a typical recall rate which will happen in the setting if we use a TSH more than 20 as a cutff because sensitivity in that setting is going up specificity is coming down. So that would mean that one in 100 may have to be retested which may not be a unfair scenario because in this scenario if you're able to get all the 100% on cord blood and then one in 100 have to be recalled that is something will be there. Day three strategy will be more specific and there the cut off will be more clearer from that perspective. So more than 40 we have to really confirm and start treatment in most considerations. 20 to 40 would be a a gray zone where we have to recall them. So I would say recall percentage will go down if we use the day three one but the actual number of people getting it done may be reduced because most people are discharged by day three. I think that's the biggest limitation which is there. So >> can't we say at discharge >> uh >> because our institutional delivery in India >> has reached to close to 90 if I'm not mistaken. Am I right?
>> Yeah. So I think there is a change in the mindset uh because there is difference in the thoughts of people. So therefore you know I would urge you to be with me when I'm talking about this to them. Uh I feel I mean right from the beginning. So I've heard you let me see how Anju is able to impress to me why she wants a card blood.
>> So Nina >> yeah can you hear me?
>> Yeah d we can. Right. So N what we have to understand is what is feasible and what has changed over the last 20 years.
Number one when I was training TSH used to take 2 days for the report to come.
Today the report comes in 2 hours 3 hours in a hospital and even if it's a remote area which has to send the sample across it will the the sample will go across in 24 hours and the report can come back on the phone. You know you don't have to bring the report back.
communication is good. So the days of recall would be over. We don't have to get into recall at all because you'll understand that getting an Indian mother to come back all of that is not going to be so easy and that's why we've got actually a decline in our screening rates. We were close to 15 20%, we've declined to 3%.
Which is a complete disgrace. Now the model that we are proposing which is the international pediatric association is proposing is that you test at cord and within 6 to 8 hours you're likely to get the report and the baby is very much under your nose right now. If the TSH is more than 20 but less than 40 you do the T4 in the same sample. The lab does it automatically. It doesn't have to be told. And because this is cord blood, you're not worried about sample insufficient filter paper.
Anybody and everybody can collect the sample, send it off to the lab. You get the TSH done. TSH is borderline. You do a T4. If the TSH is already more than 40, the baby is still sitting under your nose. You do a confirmatory sample and if the confirmatory sample shows, so the aim of congenital hypothyroid screening in the first place was to pick up the severe cases. Now if I'm picking up a TSH of 100, I'm picking up a TSH of 80, I'm not in any great doubt. The 15s and the 20s can come much later. But at least let us not miss the 97% babies in whom one in a,000 or one in 800 is going to be severe hypothyroidism. And now this baby is not recalled. The baby is sitting under your >> se one in thousand. And how many are severe?
1 in 700 is the whole gamut and close to one in a,000 to one in 1200 is severe.
That's a large number. And the point I'm trying to make is with cord blood you completely eliminate the whole jamela of calling the baby back. Now Rainda's made a very important point which is that RB uh ne is doing five tests. You want those five tests. They are not unimportant but they are done at a somewhat later stage. So what you're saying is do one or the other. And what I'm saying is when you got a 15 20 rupee test do both.
Do the cord blood which is very easy to make universal and then do as many as possible of the later test. So if you're doing it at 24 or 48 hours at discharge or whatever strategy is working for you by all means do that. The two are not mutually exclusive.
You know, if I'm wearing earrings, I don't have to wear a ring. It doesn't it follow like that. I can wear earrings and a ring. So, let us do the practical thing which can be scaled up to 97 98% very very quickly and start with that and do as many as possible of the multiple tests at discharge. The multiple tests cost something like a,000 to 2,000 rupees. This cost 20 bucks. In a country which can't afford 20 bucks for its newborns. I think it's a disease.
>> What multiple test you said is,000 2,000 chonia.
>> Oh that is TMS. You mean >> those are very important tests.
>> So TMS TMS one drop will give you 30 to 50 test that you're going to do. that is the TMS which at least should come in all the private uh setups. I'm sure everybody can spend uh that much on uh delivery.
So like India is no more that poor but our attitude is poor. That's what I hear. But yes if you have to spend you can spend even the mindset of people to write uh uh TMS is lacking and forget that how many are doing even the clinical thing how many are doing the red eye how many are doing the uh OTAA and these are all a big thing which I'm going to really make a noise about and uh I don't know how much but you know I think I will be uh because it's going to be important but I want to know from Raindra now and Vijay so give me 30 seconds >> give me 30 seconds more I'm saying >> I'm simply saying cord has to be cut is going to be thrown away cord sample don't get into sending it to the central lab send it locally you can scale it up to 98% very very quickly over to you raind >> can I just tell something actually we have Our in our newborn screening program for the past 10 years we have tried both actually initially we started with c blood. The advantage of c blood is we can take the blood we can take we can send it to our own lab we'll get the results in the evening and then we can confirm it after 48 hours child will be there in the hospital and after 48 hours or whatever it is 72 hours we can confirm by doing >> question is you yourself are saying that the child is there in the hospital for 48 hours you yourself are sick if yourself are saying the child is ill for 48 hours why don't you grew at 48 hours my question. I I'll tell I will tell the reason and >> so now you have to give me statistics that what is the percentage of institutional delivery and what is the average time of discharge is it one or two days I don't think I mean you tell >> the problem I I I'll just complete it the problem of this DBS is we cannot do in our hospital because that is a dry blood spot we have to send it what we are doing is we are sending it to a public lab so we will be they'll be sending after 48 hours they will be they will send it by the time the child will be discharged actually and so you have to collect the child we have to ask the child to come back that is what we are doing and the main thing is we have to start treatment within 14 days so if you are doing a cord blood that may be feasible in India then within 14 days I think we can start treatment if you're doing DBS there will be some lag will be there but we are doing this DBS because we are doing Cah we are doing phenile keonora We are doing galactosemia all these things we can do all these things but problem is sometimes it will be little bit delayed that is >> so you are doing the bride blood for all the TMS as well as the thyroid am I right that is why you said and how much does it cost >> so the we are not doing TMS we are using only these four the ch >> thyroid >> adrenal phenal keonoria galactomia for this four for this filter paper our uh government cost is 400 rupees per patient.
>> Okay.
>> Uh over to Raind.
>> Uh thank you ma'am. Actually it depends upon the which state we are talking about. There are many state because now you know blood is a very unent stage. It is a very starting stage. If you look at the daily scenario, we have gone far above that because now most of the government hospital under the coverage of NEV we are doing CH and Calal hypothyroidism in all and now we have started we have added D6D galactomia and beta deficiency also. So if we are seeing all these uh five parameters which is not possible in you know cord blood and doing double is not possible you know cord blood then what is happening but if you look at a daily I will talk about daily scenario first because in Delhi if you look at there is incidence of CH also and if they are not being diagnosed they end up in the emergency at the you know at the second week of life and it becomes difficult to make diagnosis especially if it is a male because there will not be any realization.
And ultimately there may be chances that mortality may be there because you know you know no one knows the presentation is will be like saymia for acute diarrhea which is much more common scenario in our country. So my message is that >> what is the incident?
What? If you look at the incident then incidents if you look at the Delhi scenario in Delhi approximately close to five lakh babies newborn have been screened and incident is somewhere one >> it is 15 lakhs I read the information actually >> about I think it was ne what I read is 15 lakhs >> actually in I'm telling about Delhi that is only >> Delhi I read >> yeah Delhi Delhi is somewhere because I'm CH is 1 in 15,000 and hypothyroidism 15,000.
>> Yeah. So in Canada the incidence of C >> and who according to you all a national uh I mean various state experts in neonatal screening who I can connect to who are doing a lot of work at the state level. Vijay would you be the right person to connect for the neonatal screening for the state or would you recommend somebody else? Yeah, in Kerala I think myself and Rias we are a part of this technical committee we can >> right so you can be a part of this okay and who do you think nationally like are doing good work in various states can be a part of the neonal screening comm uh project that I'm work I'm saying that we're going to form a a committee and come out with a position paper to give it to the uh national government >> not state one second I'm not sure why Rainda you're saying two things can't be done together >> why can't >> it will be double ma'am it will be double expenditure when you're saying you're spending 400 rupees on ch and multiple screening and you're spending v rupe more on cord blood which has no logistical issues what's the harm >> ma'am it is only taste blood in the cord blood you can do TSH you can't do galactomia you can't do phenile but when something is costing 204 but the point is the blood requires TSH cost 15 to 20 rupees. Uh T4 will cost you another 20 or 30. So and the corn is right there. Would you No, no. My question to you nationally would you want only TSH or you want both TSH and T4?
>> If you start you should do T4 and TSH but in the cord blood and in the filter paper T4 is very difficult to do. So in the filter paper you won't have much of a choice. You'll have to do TSH.
But in the liquid I do how many deliveries in the country do we have as opposed to four or two? But to 400 400 rupees versus 2000 justify 25,000 delivery. You have 25,000 deliveries >> 20 you have 25 million 25 million or some such thing or something like that. We can say somewhere around it is cr.
That's what 25 million deliveries a year.
T4 information >> the main I like to just add Dr. Anju in that regard is >> that if I do TSH will I be UTI or TSH 3 T4 will it add on to my knowledge and will it add on to efficacy that's the question about 20% MORE EFFICACY >> WE CAN'T HEAR YOU are you muted >> 20% more efficacy >> can you all hear her >> yes yes she's Dr. Anju is saying 20% >> I can't hear anybody >> uh 20% >> she's audible ma'am she's audible >> so Dr. Anju I think if we combined both TSH and T4 that may cause more confusions because of the cord blood T4 levels and there are different ways of going and it may lead to more complexities.
>> TSH alone.
>> I think that is what we should go forward first to TSH alone and T4 as a backup as you said is a good strategy so that we can we have more specificity. So first should be TSH and if TSH is above this particular level a T4 is done. I think that will be the clearest from that perspective.
>> So even in the cod blood sorry I got unmuted and now >> yes Dr. So what we were discussing is that most strategies globally are talking about TSH alone strategies and TSH if it is on the higher side then do a reflex T4 strategy >> not for TSH so I think that's the best way to go forward if you're thinking in that regards my question to you all is >> what is the brunt theoretically like I said uh that hypothyroidism is the commonest cause of neurodedevelopmental delay Okay. Am I right or wrong?
>> Yeah.
>> True. Yeah.
>> It's also one of the common also one of the commonest screening disorders because the others are one in 30,000 one in 15,000. This is one in a thousand. It is the communist fault also.
>> H no it doesn't matter communist right I if they are even one in 15,000 but the impact is worse than you know it is like that because if you ask me I would say everybody should do a stool card. Why are you all not doing just because you're an endo? Why don't you see a stool color at two weeks even if it is 1 in 15,000 but the beriatric have run the common cost of transplant then the cognous cost of millions of rupees in the country is that so everybody in their specialtity loves that so but as you said it is the outcome raindra is right and I think we've reached a state in the >> one second I'm not saying because of endocrinology I'm saying galactomia PKU are important But they can't be done in the court of your own.
>> So that is what they are saying. But galactosmia incidents blow I think vindra since you're doing in Delhi what is the incidence >> ma'am galaxyia we don't have that much of patient because we have >> I mean I specialist trust me I've not seen in 30 years or 25 years of speciality 8 whatever 20 you can call 99 to how many not even doesn't mean So it is hide galactosemia. What is your name? CH ma'am what we are we are much worried it is CH because we are losing I think is higher CH in 15,000 ma'am sir somewhere it is 1 in 12,000 in Delhi in Kerala >> 1 in 12,000 almost >> to 20,000 1 in 18 to 20,000 Chandigar they are saying one in 6,000 So it is a variable as you see in so we need a team from India. So uh uh uh we we should gather people like Vijay can I give you this responsibility uh to be finding out like just now you said Chandigar so who is the right person in Chandigar who's the right if we can find out statewise people who are actually involved in unit I shall be more obliged than you all because we need this in the next couple of weeks.
and we're trying to find out who are the right people to suggest in you know the various things that we should and I feel like we can I agree with you that basic but I also agree that if we are going for something then it should be it's not that I mean anybody is paying for it but since it's a state subject uh we can insist the state government to pay for the four test like or the five test which are especially impactful like CH is very uh what is the uh mobility what is the mortality of CH can you tell me Vijay in Kerala >> mortality I don't know actually but they are still they are okay >> the main thing is Actually in our it is not screen cases we have a good number good good number of CH patient at least 90% are girls only 10% are boys that that tells you that many boys are missed in the initial case and getting that there are they there is high mortality among boys because it's difficult to diagnose in generalia and we can diagnose it with early I think 90 is to 10 that at 9 is to1 is the female male ratio in our non-screen all cases of CH. So many male CH are dying.
So that is that gives the importance of screening for CH also at least we can save some male some boys.
I think even others Anurat >> no I think if you go by the western figures already also the ratio between girl and boys was 3 to1 girls were 3 to1 so even in the western countries >> one question is in the chat box will ask of course if you start two weeks but I think there's a point in what Anju is saying no it's not about the treatment two weeks What they are saying Anju and Vijay is will you get back the patient at day three.
Either you do this test at day three. I mean everybody gets discharged but when they get discharged I mean should the country talk about uh two things both that ideal you stick to doing the day three but wherever you think I mean should we say like that for rural how should we frame it if we have to come with a policy how should you how would you like to frame it >> I I think that's a very important thing because I think we cannot have one sizefits-all approach for everybody. So we need to have that this is the desirable or the ideal scenario and this is the minimum scenario which should be available for every child's right would be the minimum if we give you both then you're happy I mean Anju is happy and you're happy.
>> Yes. Yes. So I think >> what you is saying is >> can't make out what you're saying nam I couldn't hear a word of what you said if you can just repeat it.
>> Uh other could hear it >> now it's better not able to listen.
>> Okay.
>> No this is fine now. No, no, this is fine. But you switch off your camera now. You're audible.
>> Yeah. Yeah. So, uh what I was saying is that would you like to frame it that we should do uh C blood for all? Would you want to frame it like that? that and only uh those who come at normal then you do I mean how would you want to would you want to say that because if you come out with two statements you know like this is ideal this is feasible nothing is happening you all are feeling like that because all states are not able to but how many in the country are private why are all they not doing screening why why are the pediatricians not screening Why are we dependent on the government for 20 rupees? Why are we not able to keep?
>> You want you want me to tell you the truth?
>> Yes.
>> You may not like the answer.
uh if it is uh uh if it is being incriminating to someone I may not like but uh uh we all give answers which are genuine without so let me see what you mean I don't like I'm here to listen to you >> most very most people don't like blunt truths now that's why I'm asking you if you're willing to listen to the blunt the the the truth is that most people assume what they think is the truth and what the they are not open. So I think probably I'm one of those few people who open to listening to the opposite person but there are some helmet people who you know like think only one way. So I'm not like that who thinks but I'm happy to know what you think that you think will hurt me. I'm excited to know it.
Right. So the reason I think that we've been so far back is because our rates of screening are dropping and that is because in the desire to do everything perfection is the enemy of good. In our desire to do multiple conditions, we've stopped doing cord blood screening and so something which could have been offered at 20 rupees and could have escalated now to 80 or 90% has dropped from about 15% to 3%. there is active opposition to the cord blood. If the active opposition to the cord blood is stopped, then every private sector person who is encouraged to do it will happily do it if there is a very strong recommendation because as I said the cost is so minimal that it doesn't really matter. No uh hospital if it's given a strong recommendation by will say if they can bill it, they will happily bill it. they can't bill it. It can really easily be absorbed in the cost but that active opposition has to stop >> because I remember when I was a student we did the c blood and I also remember when I became senior resident we stopped the c blood >> that's what I'm saying there is active opposition to it once the active opposition stops it is not difficult to off take it and it is not difficult >> the active opposition is from policy >> 20% >> no But active opposition comes from policy or evidence.
Policy. No. So policy comes from evidence. No. Not here. No. No. No. No.
Nam don't tell me that policy is always equal to evidence. There are lots of decisions which are taken with or without evidence. There is absolutely nothing to say cod blood is a bad strategy.
But the moment you say that we want perfection, you won't get good either.
And you have a perfect example in front of you what you said yourself that we used to do it and we stopped doing it and that is the tragedy of India and I don't think the families who have to suffer 70 years with a mentally family member will forgive us doctors for that uh absence of our vision.
If I have to jail 70 years of a mentally person for something which cost 20 rupees at the birth of that child that's a very hard knock to give.
>> So the question to you next is if you do the cod blood would you want to take the level 20 or 40?
That's what we've been talking about all along. Now if you take 20 40 >> you don't confuse.
>> Not confusing.
>> There's no confusing at all. If it is above 40, you repeat it immediately and confirm. It has to be confirmed. Let's get that very clear. You can't take a clinical decision for 3 years on cord blood. You have a cord blood TSH above 40, you will please repeat it immediately.
>> And how many TSH between 20 and let me finish between 20 and 40, you do the T4.
If the T4 is low and the TSH is 20 to 40, you do the confirmation immediately.
If the cord blood TSH is between 20 and 40 and the T4 is normal then wait for 48 hours. This is what CMCO does. They wait for 48 hours. So out of a 100 babies, one baby is held back for 48 hours.
Otherwise they discharge it 24 hours and sooner. But that one baby out of 100 who has a cord blood TSH between 20 and 40 and a T4 which is normal will be told up. At 48 hours it will be repeated.
Within two hours the report is ready and then the baby's told yes no and then they're sent home with a decision.
It's a very clear flowchart which has been following.
>> You need a flowchart of money. Now that means you first write 20 rupees. That is what you are saying and you've checked this rate I'm assuming right? You've checked it right?
>> Am I right?
>> Multiple places multiple places. So you write 20 rupees then you write one in 100. So you take first the entire country births and say key 2.45 crores into 20 rupees 5 cr rupee which is spinners. Then you say that out of this one in 100 you will do what? T4 and TSSH both you will do by the other method you put that cost in 100 and you divide that 2.5 cr into 100 >> remember this is 1% of the babies >> yeah so that's what I'm saying so 1% you write that cost 1% extra cost then you are so you write pa and just give a char that will be very useful to get and I think it is not going to be high. And I think it makes sense to me also that if we uh the states who are not wanting to do the entire panel, they must at least uh do this and the states who have the capability of doing further test uh like Delhi did and that state should be allowed to do the other. So we need to have a very clearcut uh flow and as you rightly said that it is the mindset it is on both the sides right like we need to have the mindset to say that these are the states which should do this these are the states and that is why it is very important if uh we can have actually a one day and discussion what you can call a consultative meet just like I did it in vaccine I think I'm going to do a national consultative meet on the newborn screening where we call everybody we go digital we talk about the issues and then understand what uh they are everybody's thought is in different states so I give the responsibility to Vijay to Anura to Anju raindra all of of you to come down with the names of whom you think are really you know in your mind you think that you know are going to be useful to deliberate and then at least in the position paper we should be able to tell this is our way and then I can able to take it to the government.
>> Thank you. Thank you very much. Right.
>> I think that's because there is a point everybody is right in their own way because the way you everybody does and is in comfort zone it is that's why somebody uh so if we are able to get something in states like maybe Dharkand is poor UP is poor or east is poor or you we might have to come out with a different strategy and say everybody should do thy so it's like that depending on the state we me and we should say I want to say that let's do for everybody like maybe card blood is a basic I mean nothing beyond the it should go basic that's what we will insist those who are going for this this but this is a priority and in that it makes sense what you all have been talking and this is something which was very close and I wanted to discuss with you all I took the opportunity of the thyroid day as you can see sadly it's like we all but it was useful to talk to just you know 30 of you all but you're the one who can plan the uh the policy for the country >> thank you thank you very much >> thank you >> thank you thank you Dr. These are your concluding remarks and we'll check and conclude that.
>> Hi sir, it was uh now president madam has taken this into a full final. Ma'am, this is a beginning of a consultative meet. I mean the >> ab raindra is very lazy. So raindra this time you don't be lazy. We will have to get the names. In a week's time, you will connect all the people here. Try to pull out the names and then maybe within the next two weeks we should try to tell them the agenda and then come to talk.
We are here to listen and see what best we can do.
>> The foundation has been laid >> very active.
>> Only thing is I don't like criticism.
That's all. I I I in the in the sense I always like to put the shoes of the opposite person and see that's all. So I appreciate all of you have your own thoughts and what I said hit the nail to that is the truth.
So it was so lovely over to and consultative that's a it's a I think this consultative meet is a must because anything related to newborn screening anything I mean as vasans had told like I'm also very proam and then as a team we can definitely come up with the best possible will uh position paper as you are and as your you are vision is basically so a foundation >> everybody I have my EB's permission to come out with the paper so we won't waste time but I have to identify the right people I'm also pretty headstrong and identify people who don't come for name but who can actually contribute uh generously and with their time those who are very busy and just want their names may not be the right person to propose for >> because the foundation a responsible thing to do so I don't want to be compared to the past or the future uh uh like rightly nu was saying will it hurt so it's I mean what people did in the past have got nothing to do but being in a responsible role I hate to I hate to incriminate anybody in the past because uh I believe in positivity I believe that we need to just forget what the pasttors think about the present and future just do it.
>> Thank you. And you I'm glad that we were able to discuss because I think you know even if you make that cost I should be able to talk to any any anybody that's a commitment you're absolutely right we'll do and I want to see IPA paper because uh who were the other countries where they very smart enough. They had a voice or you were the strongest voice. Let me see the paper because that makes a difference.
Then qa was it only Africa who were doing nothing? Was it only uh developing countries who were there? Because this uh will not be accepted by uh the west.
West will not accept it.
>> What will not what will the west not accept?
>> That we should do cot blood for all.
They've gone much ahead of it. So they won't go back. the west.
>> No, no, no, no, no, no. The west is very clearly saying that is what they're saying.
>> I urge you all to read the president's page this month. I've written it you know 15th after 25th but please read the paper of that month ma and I've given my thoughts about screen see that and I'm open to suggestions read it and talk nam the strongest voices for TSH cord blood may are coming from Amsterdam and from Berlin >> anet has been saying for 40 years please blood as you said I have the paper which came from uh the paper which said that in the 50th year of cord blood of of neonatal screening Steven Lafranchi said I wrote a paper in at the 40th anniversary and that the 40th and the 50th anniversary the rate of screening internationally is exactly the same 29.4% has moved from 29.4 to 25 29.6%.
in 10 years for newborn screening has not budged and Europe is crying over it saying you have all the births and you have none of the screening. The west will be very happy to promote this because at least somebody does something and the worst part is India has the highest birth rate. We have the most babies and we have one of the lowest rates.
So ma'am let's uh uh I it's time to conclude and I think u waiting for you please over thank you ma'am and today the foundation of uh foundation is laid down for definitely uh having a newborn screening mission in a mission mode and uh as madam has said then I will definitely be after president madam to have a national consultative meet and soon we will share the dates and the when logistics and all and today discussion was very fruitful the contribution of um um our president Dr. Nam and uh the experts uh Dr. Andra, Dr. Anju, madam, Dr. Raindor and uh Dr. Vijay and Ankit were real very meaningful and I think today's discussion is going to uh form or make a shape in a very different way for our country as a whole especially for the pediatricians practicing in the private sector. Thank you very much and a group photograph please.
>> I have already taken ma'am.
>> Oh smile.
>> Okay.
Okay.
>> Thank you.
>> Okay. So dear friends please uh >> please please keep connected for another upcoming sessions on APG app from central AP along with our other sub specialty chapters. Thank you very much Shubraatri. Good night. Namaskar.
>> Good night.
>> Good night. Thank you.
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