Advice please!

[hcmoss68]

Hi, I am feeling rather unwell, but my blood tests are 'ok' so just wondering if anyone has any suggestions. I'm also very down in the dumps about it.

I had Hashimotos 25 years ago, and after a long and difficult fight, managed to get my dose of Levothyroxine to 150/175mcg alternate days. Twice when moving house and GP, they go through the routine of trying to get me on a lower dose because...well, no idea. I also have Ehler Danlos syndrome and Fibromyalgia, which are connective tissue disorders, and the original consultant said I should have a dose that 'feels' right, as the EDS can inhibit the uptake of thyroxine a bit. This has been a long battle, as we know - GPs have to prescribe to the numbers on the bit of paper, despite what the consultants might say.

So I moved here two years ago, first annual test ok with them. Then the next one was too high TSH and they told me (via text message, good grief) that they were reducing to 150 and then another test and reducing to 125 over the course of a 5 or 6 months. Despite reminders from me via email, they 'forgot' to test the last change for nearly 6 months and then when they tested they only did TSH, despite promises otherwise. It is usually the T4 that goes out of whack but they didn't do it. They are saying now they won't test again for another 3 months, and it is now a year of feeling so cross and powerless, and more recently - unwell.

They insist it is the right dose and are happy that the TSH is ok so I must be ok. I do not feel ok, and they say it is because of the menopause (I am 57) but that seems like an excuse, and I didn't feel unwell on the menpause before they started this. This has all been conducted either via text messages or emails, I had one conversation with a male doctor on the phone who I hung up on when he suggested the menopause, it feels like rank sexism and nonsense to me. I also have Aspergers and don't feel that I can go and see them, as they are so defensive and unwilling to listen to my concerns, and I don't think I can advocate for myself without getting very upset. I've written letters and asked them to look at my notes, I don't think they have or if they have, do not care or understand about the EDS uptake problem.

How can I get back up to at least 150mcg a day, if all they prescribe for is the bit of paper rather than the person? I am trying very hard to get another blood test including T4 and hope that might do it, but they refuse at the moment. I have no agency or influence, and I am being handled like a very difficult customer that they would rather not speak with.

Here are the test results:

23rd Feb 2023 TSH:0.12 T4:16.2 T3: Not done (dose was 150/175mcg)

1st June 2023 TSH:0.04 T4:16.9 T3:4.73 (dose dropped at this point to 150mcg)

2nd Oct 2023 TSH:0.05 T4:17.6 T3:4.89

end of Dec 2023 TSH:0.41 T4:18.2 T3: Not done (dose dropped at this point to 125mg)

30th May 2024 TSH:0.16 T4 and T3 not done

Next blood is not allowed until the end of August.

Any suggestions welcome, thank you.

Helen

[SlowDragon Administrator]

Never agree to dose reduction based on low TSH

You need FULL thyroid and vitamin testing

Thousands of U.K. patients forced to test privately to make progress

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Do you always get same brand levothyroxine at each prescription

Exactly what vitamin supplements are you taking

As you have Hashimoto’s and EDS are you on gluten free diet

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

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)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG 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

support.medichecks.com/hc/e...

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

[SlowDragon Administrator]

Absolutely essential to maintain GOOD vitamin levels

Always test thyroid early morning

Never agree to dose reduction on just low TSH

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Get bloods retested now

Likely low vitamin levels after inappropriate dose reduction in levothyroxine

Come back with new post once you get results

Then work on improving low vitamin levels

Make an appointment and politely insist on increase back to 150mcg daily

Retest 6-8 weeks later

[hcmoss68 in reply to SlowDragon]

Thank you so much, that is really helpful reply. The GP is insisting on following the NICE guidelines, so I assumed there was no negotiation, I shall take that along to my next appointment. Cheers.