Struggling teenager

[bobbobing]

My son - almost 16 has had his TSH varying between about 4 and 5 so near top of scale (5.5). T3 and T4 normal. Suffering hypo symptoms. None of the antibodies nhs tests for. Anyone know an endo that might give him a trial of T4 and see if it helps? He isn't attending school due to health so want help fast. Thanks. Probably need private endo that can do paediatric to speed things up.

[shaws Administrator]

I am sorry your son is unwell. You can get a private blood test (if GP wont do all of the following). In some countries we'd be diagnosed if TSH was above 3 with symptoms.

It is called a Full Thyroid Function Test but can be done privately if GP wont do all of them. FT4, FT3, Free T4, Free T3, and thyroid antibodies.

B12, Vit D, iron, ferritin and folate.

All blood draw tests have to be at the very earliest possible, fasting (he can drink water) as the TSH is highest early a.m. and that seems to be all doctors look at whilst ignoring patients' clinical symptoms and prescribing another medication instead of the thyroid hormones we need to live.

If GP wont do all of the following I shall give a link. If doing a home blood draw, make sure his arms/hands are warm and he had plenty of fluids the day before.

He needs a Full Thyroid Function Test which is :-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

B12, Vit D, iron, ferritin and folate (GP should do vits/minerals but he may not do all of the thyroid ones)

TSH is highest early a.m. and drops throughout the day and also food causes it to drop also and it may be below the guidelines (which is a ridiculous TSH has to reach 10 before being diagnosed (in other countries it is 3+).

On this forum we may have to do our own diagnosing or if not given an adequate dose of levothyroxine (also known as T4) we will not feel well at all. Some people have to source their own thyroid hThyroid hormones drive our whole metabolism from head to toe and heart and brain need the most. There are two important thyroid hormones i.e. T4 (levothyroxine) and T3 (liothyronine). T4 is an inactive hormone and has to convert to T3 (liothyronine) and T3 is the Active hormone and is needed in our millions of T3 receptor cells, heart and brain contain the most.

The aim, once diagnosed, is relief of all clinical symptoms and thank goodness we don't get all of them.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/testin...

Always get a print-out of blood test results and make sure the ranges are stated. Ranges are in brackets after the result. Ranges are important for members to comment upon them.

Your family can do without all of this stress when we expect the professionals to be professional and know how to enable us to recover our health.

[bobbobing in reply to shaws]

Thank you for that. GP is sympathetic but can't help against advice of Addenbrookes consultant who didnt want to hear the research at all. So need a consultant who can propose a trial. Any ideas? No idea who might be good.

[SlowDragon Administrator in reply to bobbobing]

Have you had TSH, FT3 and FT4 tested and both TPO and TG antibodies?

Also essential to test vitamin D, folate, ferritin and B12

Add results and ranges if you have them

Members can advise on next steps

Very important to test thyroid as early as possible in morning and fasting to get highest TSH

Thousands on here forced to test privately

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Blue Horizon allow testing of a minor

[bobbobing in reply to SlowDragon]

I think he had TPO but not TG. He didn't have autoimmune TPO which is why they won't treat till TSH higher but he isn't managing to go to school now.

[bobbobing in reply to bobbobing]

Sorry was a bit unclear. He was only tested for TPO but it wasn't positive

[SlowDragon Administrator in reply to bobbobing]

So you need to get both TPO and TG thyroid antibodies tested plus vitamin D, folate, ferritin and B12

Medichecks don't allow testing of anyone under 18

So The cheapest option is Blue Horizon Thyroid plus eleven

Paying extra for private blood draw better than DIY finger prick option

[NWA6]

I am so sorry to hear your family is going through this. I’m in the same boat with my 17yr old daughter and it’s very hard to get any treatment. We also need to wait 2mths before the next test. I’m doing private testing in the meantime do that we can start to build up a history that will hopefully give us a full picture.

Have you had any history of thyroid problems within your family?

[bobbobing in reply to NWA6]

Yes daughter on T4 but she had antibodies. Same symptoms though.

[NWA6 in reply to bobbobing]

😩 So you know the score. I don’t know if that makes things better or worse 🙁

[shaws Administrator in reply to bobbobing]

Having thyroid antibodies in our blood means we have an Autoimmune Thyroid Disease commonly called hashimoto's and is the commonest form of hypothyroidism. Going gluten-free can help reduce the antibodies as they attack the thyroid gland until we're hypothyroid.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

If people aren't diagnosed if TSH is not high enough doctors wont prescribe, but if antibodies are present in the blood they should be prescribed, despite the TSH. If you need evidence, email Dionne at Thyroiduk and request a copy of Dr Toft's paper re prescribing if antibodies are present.

email for Dionne : [e-mail]

NWA6

[NWA6 in reply to shaws]

Did you mean to Tag me? 🤷‍♀️ 😬

[bobbobing in reply to NWA6]

I don't know what tagging is!

[NWA6 in reply to bobbobing]

😂 I meant Shaws 😂 She tagged me at the end of her response ⬆️ with the ‘paula6’ at the end

[shaws Administrator in reply to bobbobing]

If someone posts and there may be other responses within the post which might also be helpful to others. Instead of repeating, we put an @ before the members' name(s) and a selection pops up, we then select a name and it turns to blue which means that - or those - members will be alerted.

[KS69]

My dr would not treat despite me having 2 abnormal TSH tests albeit being under 10 but when I went to A&E it was flagged in red and they asked me why I wasn't being treated! A&E told me to go back to my dr and get treatment. I then went back and got a referral to an Endo who straight away prescribed thyroxine due to symptoms and TSH level, much as the guidelines say.

[bobbobing in reply to KS69]

Can you recommend a good endo that we can see?

[KS69 in reply to bobbobing]

I'm in London, not sure where you are, not sure mine was particularly good as such but they did at least treat me immediately. Have you got the guidelines mentioning a trial of thyroxine? I would just ask you dr for a referral to an endo, if you haven't already seen one. Thyroid UK do have a list you could ask to see specifically but if you haven't seen one at all I would just ask for a referral to any endo for starters.