Very sad mom! 9 months with Thyroid disease!

[AnnaBerg]

Hello!

Please anyone, I am in need to talk with someone who understands this problem. We just found out that our 9 months old son have very high TSH value, TSH: 11.

He is very late with everything and Thats why doctors started to check him up, I can add that he doesnt eat that much and he has poor weight gain.

I have been on Tyroxin Since three years ago and They changed My dose several times during My pregnancy.

My sons doctor Will call me after two weeks to discuss this TSH result. She is on vaccation. I am so worried, he is 9 months old and already late with everything. Does this mean that he Will not be normal when he grows up? What is very high baby TSH value? Is TSH 11 very high???? Has this caused lifelong problem to My son?? I am so SAD and no one can help me with any experience Since this is so rare.

[Heloise]

I thought they tested infants earlier because it is very important to the growth and development. I have a friend who doctors would not believe she had hypothyroidism and waited too long. She is still bright but is disabled in other ways. I would get someone else who is not on vacation immediately.

[Taytaydarz in reply to Heloise]

Probably not what she wants to read 😬

[Heloise in reply to Taytaydarz]

Maybe it's an iodine deficiency or something simple. As it turns out, a tsh of 11 is about 2 points above the highest in a range of 1.7 to 9.0. But if she is noticing developmental delays it should be investigated now.

[Treepie]

You should not worry,children develop very differently .My granddaughter had awful problems reading up to being over 7 and is dsylexic but with some help she reads very well at 9.

11 is high but not not very high ,I was 101. The GP will probably want to test again as it can fluctuate . I know nothing about childhood hypothyroidism but it is not uncommon.

[Heloise]

When the mother has been given iron supplements during pregnancy, along with unsaturated oils in the diet, the baby is likely to be born with a vitamin E deficiency and suppressed thyroid function, increasing the probability that it will be jaundiced, leading to treatment of the jaundice with exposure to very bright light.

youtube.com/watch?v=2XGh88w...(Not working as expected?)

[Hillwoman in reply to Heloise]

Very interesting, Heloise. I was jaundiced at birth and was hypo from childhood.

AnnaBerg, try not to worry too much until the specialist sees your baby, but if it will put your mind at rest perhaps ask to be referred to someone else. The good thing is that the problem has been detected now, and doctors are likely to be more concerned about high TSH in an infant and treat accordingly.

[Heloise in reply to Hillwoman]

I just realized my last child was jaundiced and I was probably becoming hypothyroid. We should always ask why.

[Hillwoman in reply to Heloise]

Absolutely!

[Heloise]

True, there can be fluctuation but the initial screening at one day old is within the PKU screening for metabolism. They should have done another at one month. Can you find out if this was done and what the results were then? I just read that if it were congenital the TSH would be above 40 so yours is far from that. You could look into foods or chemicals that might be slowing the hormone environmentally.

[AnnaBerg in reply to Heloise]

Thank you for all your answers. Where Did you find that information about TSH 40? I read his blodtest result and all above 8,4 is not ok at 9 months. I guess it is other reference interval for newborns. You are absolutely right, they should check once more when he was one month. But the problem is I live in Sweden and our healthcare system is disaster. I went to Norway to get help to get pregnant when I had problem with TSH and couldnt get pregnant. We dont have private doctors, because even private doctors are Since 2014 under the goverment control and are not allowed to take money...... when I called yesterday I said please please I want this fixed before two weeks, But nope no one could call me before Since they have so much to do. It is so disaster system, Me and My husband have been thinking of coming to London to find a specialist Who can help our son.

[SilverAvocado in reply to AnnaBerg]

2 weeks is a long time to wait!

[Heloise in reply to AnnaBerg]

Oh my. Do you have emergency rooms or would that also be a dead end. Are you looking at his food intake. Anything that would undermine thyroid activity. I'd be afraid to try any supplements without knowing infant metabolism. I don't know if I can find the article again but I'll try.

[Heloise in reply to AnnaBerg]

Paragraph "High Levels" livestrong.com/article/2301...

[trelemorele]

If your baby has high TSH he needs to be on medication ASAP.

Don't wait two weeks for a doctor to come back from holiday. See another one and insist on prescription and immediate treatment.

It's crucial with babies to act quick as they mental development may be delayed.

Don't wait, act. If needed go to private doctor ASAP.

Google hypothyroid in infants and you'll get pretty decent info on this and treatment.

Good luck with your little boy.

[AnnaBerg]

Hello everyone,

Thanks for your replies. Yes they Did the check up when he was newborn, they said that if something with the tests are wrong we Will contact you immediately. No one Did call us so I guess the result wasnt that high by then...... But I have always felt that something is wrong Since he was newborn, He took around 200ml formula during 24hours until he was around six months and I started feeding him food. Now he always refuse food. He has been very shaky Since day one. He doesnt sit, turn or crawl. His weightgain is very poor. I have discussed all this with doctor serveral Times But they always said everything is normal, dont worry its your first kid and Therefor you overreact...........

I am worried that he has taken lifelong braindamage Since he has not been on medication in 9 months, which are very important months for babies Brain development.

Does anyone have baby with same problem? Or does anyone know anyone with this problem? I want to know How their babies development was? I only fins people who get diagnos at birth, I dont find anyone who get it at 9 months.

[trelemorele in reply to AnnaBerg]

Go to a&e and demand immediate treatment for your boy if local doctors failed you.

Your health system is 100% better thank UK. And even then children are always treated as priority.

Your little one is very ill with TSH so high and I can tell you he must feel very sick.

Waiting two weeks to get simple treatment and medication for him is inhumane and endangering his future full development.

Whoever you speak to trying to fob you off tell them you will sue for health damage and long life disability to your boy.

I would move mountains, this can have long term consequences.

[Hidden]

I don't know where you live but most countries test for this earlier.

[helvella in reply to Hidden]

Bunnyjean,

There is some discussion about exactly when to test - too soon and mother's thyroid hormone might still be significant. Also, whether Free T4 might be a better test. And that a second test perhaps would be sensible.

Trouble is, we all rely on the medical establishment doing what they say they are doing - checking and looking after us. We don't think that we have to research every intervention, every test, and try to understand the latest research. So we end up being let down.

[Hidden in reply to helvella]

Yes, quite I have been let down several times but the medical profession, nothing to do with the thyroid, it's so sad especially for a new mother.

[AnnaBerg]

Hello everyone,

Once more, thanks for your replies. We went to the emergency today, either me or My husband couldnt sleep yesterday. They took new blodtest, the TSH resultat this time was 8. So it feels much better but we will meet an endocronologist next week to follow up this. Sometimes it helps to not give up. My husband said either you help us today or sign a paper that you Will take responsibility for this two weeks while he is waiting. I have read so much about TSH first when I had difficult to become pregnant because of high TSH and now I read about baby TSH that much that the doctor was suprised today and asked me if I am docotrand in TSH haha. But What to do, I was forced I couldnt become pregnant and doctors unfortunately cant much about TSH.

[trelemorele in reply to AnnaBerg]

He still have high TSH.

I'm glad it all sounds better but you need to make sure he is medicated and very often bloods checked.

He is at his most fragile development stage. He is precious to you and I know you want him to be healthy and happy.

Make sure you do full thyroid levels check:

TSH

T4

T3

And ask them to run Hashimoto and graves antibodies.

Also check his vitamins and minerals levels.

Lots of hugs to your previous one 😃 and keep us posted

[AnnaBerg in reply to trelemorele]

Hi,

I want to share My pain with someone.... My son maid a new test and his TSH is 11 again. I cried and tried all I could to tell the doctor to give him medication But they refuse. We have went to emergency we called our house doctor. All of them sais that Since his T4 is normal we Will not give medication. But his TSH is not normal he suffers in many way because of this. How can I solve this? I am afraid to go abroad and not get help in other countries. I want to silver this here so they can have regular checkup. I have been crying in two days. Can I give him My own medicin? What can I do?

[trelemorele in reply to AnnaBerg]

Hey there

Have a look at this thyroidmanager.org/chapter/...

I think you should do further tests why his TSH is high and t4 is within the range.

Can you open a new post with the same information so more people can see it and be able to advise.

Can you also add his latest results for TSH, t4, t3 with the reference ranges.

If it was me I'd want comprehensive explanation from doctors why his levels are like that, why he is not treated further and that he is at risk. Write formal complaint asking all those questions so you have it for future reference.

Also can you get another opinion?

Do you have in writing, that they refuse treatment and why? If not, request it now.

Have a look online and try to find and learn as much as possible about thyroid levels in infancy and when and how it's treated.

[Saggyuk]

Hi there, just to add, If he really eats so little, I would imagine this is the root of the problem as will cause massive problems with development. He will be very low in vitamins so should get them tested. Maybe a referral to find out why he's not eating would be the best thing to do. Could be dairy/lactose intolerance/gluten/coeliacs etc. I would think dairy/lactose would be the best place to start considering he wouldn't drink much milk first. However, some parents of those with coeliacs do also swear that they had issues with the milk too so don't rule it out.