TSH 50.5

[Porcelet]

I was diagnosed with Graves hyperthyroidism in April and put on carbimazole. I have now developed hypothyroidism with TSH of 50.5 and T 3&4 just over 3. I am putting on weight, have fatigue, anxiety, poor sleep, headaches, tingling hands and depression. I have congenital haemolytic anaemia ( pyruvate kinase deficiency) with associated iron overload. I am 68 years old. Should I be having antibody tests? Which medication shoul I be on? Is there anything I can do to assist myself?

[PurpleNails Administrator]

Welcome to forum.

How was your Graves confirmed?

What dose of carbimazole were you taking. Has it been stopped?

When starting carbimazole you need regular blood tests & dose tweaked until you are in range. TSH can remain falsely low after being hyper, you need to know what FT4 & FT4. Add them if you have them & the lab range.

[Porcelet in reply to PurpleNails]

I had the antibody test to confirm Graves - that was in the hyper stage. I stopped taking carbimazole a few weeks ago.

[PurpleNails Administrator in reply to Porcelet]

Which antibodies were tested? there are several.

Unless on a very inappropriately high dose of carbimazole for far too long, your TSH should not have been able to rise over 50.

Most with Graves need to stay on carbimazole for 18 months, many do better staying on low dose for much longer term.

Suspect you have high TPO & TG and TSI / TRab not tested. Graves causes continuous hyper, Hashimoto’s causes transient hyper & gradually functions lowers until replacement required.

So important to know of TRab or TSI confirms Graves.

[SlowDragon Administrator]

Iron overload (hemochromatosis ) is associated with Hashimoto’s (autoimmune HYPOthyroid)

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

Before starting on Carbimazole GP/endo should have tested TSI or Trab antibodies to confirm Graves’ disease

Hashimoto’s and hemochromatosis

redriverhealthandwellness.c...

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Request GP test TPO and TG antibodies for autoimmune hypothyroidism

Plus vitamin D, folate and B12

Plus coeliac blood test too

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[humanbean]

Do you have copies of the results from the tests carried out when you first became hyperthyroid and any blood tests carried out by your GP since you were first discovered to have Graves?

If you don't already have results that include the tests that were actually carried out, the results, and the reference ranges you need to ask your surgery for them. You can ask for them to be supplied on paper, and say that you will collect them two days later. Or you could ask for access to your results and reference ranges for historic and recent results online, but you need to have a smartphone and the appropriate app to see results.

I would also suggest that you ask for the antibody results of any antibody tests carried out.

[serenfach]

To put it simply, you are now hypothyroid and need to go back to your GP and demand to be treated as such. Dont let them start you on anything less than 50 Levothyroxine, they try to start us elderly on 25 Levo, but with a TSH that high, you will need the higher dose.

I hope you feel better soon.