What is my next step for underactive thyroid services?

[KimE1]

Hi, I've been steadily gaining weight and was diagnosed with underactive thyroid. I've been taking the tablets (levothyroxine) since December but I'm still gaining weight. I have seen a series of doctors in my medical centre but none of them have been particularly helpful. I'm glad to be finally diagnosed but I want to know if there are any next steps I can take in terms of seeing someone who might be able to help me. I have thought of seeing an endocrinologist or going to a private doctor. Any other ideas?

I live in Birmingham, has anyone had any luck with any services in this area or the surrounding areas?

[shaws Administrator]

There was a wonderful doctor in Birmingham but he died due to a stroke. People travelled from all over the UK to consult him.

If you can get a print-out of your most recent blood test results, with the ranges, members will respond. Put them on a new question if you don't have them today.

Unfortunately, it takes some time to get to an optimum dose of levothyroxine. Has your dose been increased every six weeks or thereabouts until your TSH is 1 or lower?

The procedure for blood tests is to have the earliest appointment, fasting (you can drink water) and allow a gap of 24 hours between your last dose and the test and take afterwards.

This helps the TSH to remain higher as it drops throughout the day and may mean a reduction in dose as doctors think a TSH below 1 is harmful, when in fact we need it to be around 1 or lower.

When next test is due ask also for B12, Vit D, iron, ferritin and folate to be tested. Deficiencies can cause symptoms.

Always get a print-out of your resuts for your own records. If you have a query you can post them.

[KimE1 in reply to shaws]

Thanks so much, I'll definitely get a print out and post it. The doctor just said I had the right dose but didn't explain much else. I take 50 but I think I might need more.

[shaws Administrator in reply to KimE1]

Your dose is too low. 50mcg is a starting dose and should be increased by 25mcg every six weeks until we are symptom-free. Unfortunately doctors seem to only think that if the TSH get somewhere in the 'range' - even the highest point there job is done. No it isn't and that's why we have to read, learn and ask questions in order to recover our health.

Normal doses of NDT (the original thyroid hormone) used to be about 200 to 400mcg.

As levothyroxine is the only thyroid hormone replacement nowadays, it has to be an optimum dose in order to convert to T3. Levothyroxine, T4, is inactive. It has to convert to T3. Our body has millions of T3 receptor cells which need T3 (the only Active thyroid hormone).

Blood tests have to be at the earliest (TSH is highest then), fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. This helps TSH to be at its highest as it drops throughout the day and may mean a reduction in dose rather than an increase. Levo should be taken on an empty stomach with one full glass of water and wait about an hour before eating. Food interferes with the uptake of the hormones.

Always get a print-out of your results with the ranges. Ranges are important as labs differ and it makes it easier for members to respond.

Some surgeries charge a nominal sum for paper/ink but many I believe are doing results online.

If you've not had B12, Vit D, iron, ferritin and folate tested, request at your next blood test.

[KimE1 in reply to shaws]

I did think it might be low. I know I have low vitamin D now as they checked it but as for everything else I'm not sure. I feel a bit in the dark about everything. I'm so glad I found this forum because otherwise I'd remain in the dark.

[SeasideSusie Remembering]

First thing to do is to post your late thyroid test results, with reference ranges, for members to comment. Also, say how much Levo you are taking. Members will comment.

If possible, the tests we need to see are

TSH

FT4

FT3

Thyroid antibodies

If you are in the UK we are legally entitled to our test results under the Data Protection Act so if you haven't already got them just pop along to your surgery and ask at reception for a print out. Don't accept hand written or verbal results, mistakes can be made, you need a print out.

And because optimal levels of vitamins and minerals are important for us Hypos then

Vit D

B12

Folate

Ferritin

PS - oops, sorry to repeat what Shaws has said, I replied without checking whether anyone else else had!

[KimE1]

Thanks for responding, I'll get my test results and put them up. It will be really helpful to get advice on them.