New to site

[Bate]

Hi my story starts 2 yrs ago when I was diagnosed with an aggressive leukaemia for which I needed a stem cell transplant to survive,a year after transplant it was found that my thyroid had stopped working due to effects of chemotherapy,not sure if damage is permanent but the last year has been nearly as tough as the first year of recovery! TSH levels still unstable,I’ve put on 2 stone which is debilitating and impossible to shift,my poor body has been battered so much but I’m still here 😊

[fuchsia-pink]

Welcome to the forum.

Are you on thyroid meds? Do you have any recent blood results to share? - ideally you need TSH, free T4, free T3, thyroid antibodies and key nutrients - ferritin, folate, vit D and B12.

If you are on meds, you need your key nutrients nice and high for your levo to work best. And in my experience it's pretty well impossible to lose weight until your meds are optimal [by which I do NOT mean "in range" or "normal" but right for you - which usually means TSH less than 1 and free T4 and free T3 balanced and nice and high in range.

This is a nice, supportive place, so if you share your story and your results, you will get lots of helpful, positive advice.

[Bate in reply to fuchsia-pink]

Hi there,my last TSH was 6.1 and T4 13.6 on may 12th,I was quite symptomatic so they upped thyroxine to 175,next test due in 3wks,I don’t know T3 as they don’t seem to measure it at GPs.when all this started back in April 19 my TSH was0.007 so hyperthyroid and I actually felt really good ! It then all went the other way and I’ve felt dreadful since.

[fuchsia-pink in reply to Bate]

I'm a bit confused. How long have you been taking levo? It's quite a high dose. Seems likely you were NOT hyper last April - you can't "switch" between being hypo and hyper ... instead, if you are hypo, you can become over-medicated - if your free T3 goes over-range. But if the GP doesn't test free T3, you won't know ...

There's a HUGE difference between having an over-active thyroid (ie being hyper) and having a suppressed TSH, which is quite normal once you take thyroid meds for being hypo.

Sounds like you need to treat yourself to full blood tests, to find out what's really happening. You will see lots of lots here about private blood tests - one of the companies, Medichecks, usually does discounts on a Thursday, and SeasideSusie gives lots of helpful advice on how best to do a home blood test [click on her name and look at her replies to other people]

My guess is that you are under-medicated - ie you may well have a suppressed TSH but your free T3 and free T4 aren't high enough, and possibly you need to wok on nutrients.

[LuluCops]

You need to ask for a referral to an endocrinologist and as well as the tests already mentioned I would also ask them to test your antibodies, the ones you need are TPOAB and TGAB.

So sorry for what you’ve been through, hopefully they will agree to refer you and order the tests

Shelley

[Bate in reply to LuluCops]

Hi lulu yes I’ve spoken to endocrinologist,they seem to think I don’t need antibodies doing as the cause was a certain chemotherapy drug they used to treat my cancer which is known to damage the thyroid,all other tests are covered with 4monthly haematology check ups so all normal as of last week,I really am grateful to be here but would love to enjoy recovery without this added complication 😊

[SlowDragon Administrator]

You need thyroid antibodies tested for Hashimoto’s

pubmed.ncbi.nlm.nih.gov/155...

There is an increased association of autoimmune thyroid disease and acute leukemia. Since thyroid hormones are important regulators of hematopoiesis and utilize receptors similar to those of differentiating factors such as retinoids, the association may be important for further study of mechanisms of growth regulations in leukemia.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Bloods should be retested 6-8 weeks after each dose increase in levothyroxine

Do you always get same brand of levothyroxine?

Which brand.

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...