Congenital Hypothyroidism

wiltshirelass · 2003-03-17T16:55:09+00:00

I'd be really interested in knowing if there is anyone else out there with a child with congenital hypothyroidism. My second child, a boy, was diagnosed shortly after birth and is now two and a half. We have had what I assume is very good care first at Chelsea and Westminster, and now in Wiltshire, but it would be great to swap experiences with someone else as I don't know anyone else in the same situation. For example, he broke his arm aged 18months - has anyone done regular bone density scans or got any experience of retarded bone age? Just those kinds of things. He seems to be extremely well, bfight, growing nicely, no complaints etc - but I don't feel particularly informed about what I should be looking for both developmentally and in terms of the care we are getting. Sorry for the ramble!

Original poster

wiltshirelass · 02/04/2003 14:55

No one else out there at all? It isn't THAT rare, one in 4000 babies, I can't be all alone out here, can I?!

OP posts:

SueW · 02/04/2003 17:34

I think my brother-in-law had it as a baby but I'm not sure and forgot to check with DH. BIL is now in 40's and as far as I know, has had no treatment other than daily medication.

I'll ask DH and try to come back to you but won't be around for a couple of days as DD is going into hospital.

SueW · 02/04/2003 18:38

Sorry - DH useless lack of information and could only come up with the answer that he really doesn't know.

Lindy · 02/04/2003 18:43

wiltshirelass - don't give up hope - my DS was also born with a rare one in 4000 'abnormality' and I found a fellow mumsnetter ...... there might be someone out there.

Sorry not to offer more specific help!

Caroline5 · 02/04/2003 20:58

wiltshirelass, one of dd1's friends has this and is on thyroxine (?) for life. I don't know much more than this, but I know they had trouble getting the dose right and now the girl is much bigger than all the other children her age (she towers over dd who is small!) If you like I could ask her Mum some specific questions - like what tests they have done etc??

robinw · 02/04/2003 21:58

message withdrawn

Original poster

wiltshirelass · 03/04/2003 16:32

Hi everyone, thanks for your responses. SueW, sorry about your daughter, hope her hospital treatment went well. Quite nice to know that your DH hasn't got a clue about his brother, seems to suggest that there are no major problems with him!
Carolin5, thanks as well - probably wouldn't really work having a three way conversation as there isn't really a specific question that I need answering, just wanted to swap experiences really. But you could persuade your friend to become a mumsnetter so we could talk directly?!!

OP posts:

muminlondon · 03/05/2004 15:32

Hi wiltshirelass,

Wish we'd seen your message last March when our daughter was born - she was also born with congenital hypothyroidism and has been on thyroxine ever since (now 50mcg daily). would love to swap experiences - hope you come back to this board.

Libra · 04/05/2004 15:05

It's not the same, because it's not congenital, but I did develop hypothyroidism after the birth of my first baby and am doomed to be on thyroxine for the rest of my life (although at least it means that all my prescriptions are free!). Can at least give you the adult point of view.

princesspeahead · 04/05/2004 22:22

muminlondon - hello! finally another mother! as you can see I changed my name after that initial posting. I'd love to chat... so your daughter is 1 now? Where is she getting her care? How often is she monitored? Ooooh, so many questions.... would LOVE to talk, do contact me through contact another talker if you'd like....

muminlondon · 10/05/2004 12:54

Hi princesspeahead

So glad to hear from you! I will try and contact you separately because it would be great to find out what kind of care you got, what dose your son is on, etc. and how he developed.

Libra, a good friend of mine also developed hypothryoidism after her second child - she said the baby was absolutely fine but she is on thyroxine now. She was incredibly tired in her pregnancy and only put on 2 pounds by 7 months. How's your baby now? And do you feel generally on the dose that you are on - did it take a while to get to the right level?

muminlondon · 10/05/2004 13:06

Hi princesspeahead

So glad to hear from you! I will try and contact you separately because it would be great to find out what kind of care you got, what dose your son is on, etc. and how he developed.

Libra, a good friend of mine also developed hypothryoidism after her second child - she said the baby was absolutely fine but she is on thyroxine now. She was incredibly tired in her pregnancy and only put on 2 pounds by 7 months. How's your baby now? And do you feel generally on the dose that you are on - did it take a while to get to the right level?

muminlondon · 10/05/2004 13:06

Hi princesspeahead

So glad to hear from you! I will try and contact you separately because it would be great to find out what kind of care you got, what dose your son is on, etc. and how he developed.

Libra, a good friend of mine also developed hypothryoidism after her second child - she said the baby was absolutely fine but she is on thyroxine now. She was incredibly tired in her pregnancy and only put on 2 pounds by 7 months. How's your baby now? And do you feel generally on the dose that you are on - did it take a while to get to the right level?

Libra · 10/05/2004 14:47

I have to go to the hospital once a year at the moment to be monitored and if I forget to take my thyroxine for a couple of days I get very tired and also depressed. Before I was on the thyroxine I had put on an incredible amount of weight and it was only once I started taking it that I was able to lose it. It is a pain to have to remember to keep taking it and also the perpetual re-ordering of a prescription, which I always leave to the last moment and have to cope for about a week without any!

muminlondon · 18/05/2004 17:42

(just tried to post a message but I think it got lost, and my previous message got posted three times. How annoying!)

Just wanted to say that DD (14 months) seems fine, last blood test was good and she is walking and pointing out cats, dogs and doors with great enthusiasm.

princesspeahead · 18/05/2004 21:39

Hi muminlondon, I sent you an epic email last week, did you get it? Saw the paed today, everything fine thank goodness.

muminlondon · 19/05/2004 00:16

Hi princesspeahead,
Oh no! didn't get an email and was feeling disappointed you hadn't got in touch! I can try contacting you one more time with a different email address in case I gave you the wrong one - if that comes through maybe you could resend the other message.

Anyway, your son must be three and a half now and I'd love to know how he is getting on. We haven't had any bone scans or anything, just the blood tests - 6 so far, next one due in 3 months. I got myself a bit worked up before the last one because I'd been looking up research on the internet on a higher dose approach but was a bit more reassured the last time we saw the paediatrician.

muminlondon · 19/05/2004 11:05

princesspeahead, just realised that you wouldn't see my email address if messages go via the site so I'll post a few questions here.

what dose is your son on now (DD is on 50 mcg now, started on 25 at birth)? at your hospital do they measure free T4 (range11-22.7) or total T4, or some other measurement? any problems keeping TSH down?

princesspeahead · 19/05/2004 15:11

And I thought I'd scared you off by the length of my email when you didn't reply! Funny.
My ds started on 25, then they faffed around with 37.5, then eventually 50 in the first 18 mths or so. It took ages for them to stabilise him actually, his TSH stayed on the higher end of the range, or too high, for a while. It sounds good that your dd is on 50. He was on 75 for a while but 4 months ago his bloods showed that that was a bit high, so he is now on 75 four times a week and 50 three times a week. he had his bloods and checks this week and it seems to be great - tsh low and t4 at the high end of normal. Paed was very happy with that and says it shows that he has "room for growth" in his dose - ie he is unlikely to need to go up with his dose in the next 6 months. we measure free t4.
He had a bone scan when he was just 2, which told us pretty much nothing (as there is very little data to compare it with - not many 2 year olds get scanned!) but will be a good baseline to check how he is developing going forward. he'll have another one in 6 months, so basically every 2 years. The paed yesterday said this will show us when he is lkely to be going through puberty, which is apparently helpful to know for doseages etc. But I must say it is me asking for the bone scans, she says she finds growth the best indicator, and after a massive start (was yours a very heavy, late baby?) he found his level on the 25% percentile and has tracked it pretty exactly which is what they like to see.
Would also add that your dd seems to be doing everything right - speech, walking etc. My ds was v late with walking but is very bright and pretty indistinguishable in that respect from his older sister, which is very reassuring. In fact he is probably a bit brighter and certainly has better concentration! He has great co-ordination and is very good at ball games, does good running kicks, can hit a tennis ball with a cricket bat etc so I have no worries there. I suppose the thing that worries me is that I feel I should be doing more, asking more questions, etc etc. It seems a bit easy to do a blood test once every 5 months, give a pill or two a day and twice a year have a paed look at him and say "yup, he seems fine"! Does that make sense?!!!

princesspeahead · 19/05/2004 15:18

just sent the email again. I've got the address [email protected] - should there be a dot between first name and last name maybe? let me know if you don't get it.

muminlondon · 20/05/2004 00:40

no dot, and email has arrived! hurray! have sent a reply which I hope you got.

I don't know whether our paed does bone scans - must bear that in mind. I got some welcome reassurance early on when my mum's next door neighbour (a paediatric nurse) said she'd come across lots of cases and they all seemed to develop well. In fact, she thought they seemed brighter than normal - interesting, if you also say your DS has good concentration and seems bright. DD seems to be particularly keen on looking at books and can play on her own for quite a long time now.

what about the blood tests, though? when do we start using the Ametop?

princesspeahead · 20/05/2004 12:55

I've replied. You should come tonight!

Both my parents are doctors - my mum a gp, my dad an ob/gyn. when we were in hospital trying to find out what was wrong with him after birth, and they finally told us, I phoned my mum to tell her. "Its congenital hypothyroidism..." "Really! How interesting! Well that's alright then...". Then I phoned my dad to tell him... "Really? How interesting? Well that's completely maneageable". They both sounded interested from an acaedemic point of view and not at all concerned, and it was wonderful, really calmed me down.

What's ametop?!

muminlondon · 20/05/2004 13:20

can't get into hotmail as usual but came here first. How satisfying to have medical advice so close to hand - I rely on my mum's witchy old-fashioned wisdom over the phone, but have to sift through and select the advice that appeals.

Ametop is the magic cream that numbs your hand. do you get that? I see all the other kids in the waiting room and this big build up to their blood being taken and am quite thankful that so far DD's hands are chubby enough not to feel any pain (I hope). Mind you, last time we had 4 people in there - two to take the blood, a trainee and a qualified 'play specialist' who was distracting her with a teddy. Even the blood test nurses have a special name so it must be quite an art.

princesspeahead · 20/05/2004 14:37

ahhh. our magic cream is called something different. we don't use it - it takes ages to work, and gives him eczema on the inside of his elbows. We use a quick blast of the numbing spray instead which I think is just as effective. I thought it would get worse when they were older and could object to the whole process more, but actually he is much better now. he understands that it isn't particularly nice, but they are much faster at getting the blood out now that it is easier to find a vein (because he isn't baby chubby any more) and he knows that after bloods he gets to go to the chocolate vending machine and have whatever he likes.... something that NEVER happens any other time!

muminlondon · 20/05/2004 16:51

sounds like the best approach - get it done as quickly as possible but make it a treat. At the moment DD thinks it's great - toys, people, fish on the walls, crayons to stick in her mouth, etc. Although she's still got a bruise from two weeks ago so they must have been squeezing her quite hard. You said in your original posting here that he broke his arm at 18 months - I thought their bones were very soft at this age?