Advice on my non-existent TSH Please

[Stanleydoggy]

I had radio iodine treatment 5 years ago after having Graves. I am on 75 and 100 Levothyroxine on alternate days (a low dose I know). I was given additional T3 med lythothyronine 18 months ago, 5 mg twice daily which improved my quality of life no end. My thyroid levels have been fairly steady over time.

I've recently had shingles really badly and still quite poorly five months on with post herpetic neuralgia. I requested a thyroid test due to having worrying thyroid type symptoms. My TSH is now 0.01. The GP won't order further tests and has left me on my current meds. I am confused because I've been refused FT4 and FT3 tests so I can't compare with previous test results and what is 'normal' for me. I am looking for reassurance as I am basically left wondering what is going on with my levels. It's exasperated my anxiety. The GP wants to put me on antidepressants. 'No thank you' I just need to know I am OK. Can anyone please advise me? Do I go private for tests, ask to see the consultant or just pretend I am feeling ok about this? I am very upset. Thank you. ☺️

[Sparklingsunshine]

If you are taking T3 it very often suppresses TSH. The NHS is becoming more and more reluctant to test FT4 and FT3, this is due to cost and because they view TSH as the gold standard, even though we patients know it isnt.

Best thing is to get your own tests done. Monitor My Health do a reasonably priced thyroid test including FT4 and FT3. Its about £31. But the Thyroid UK website/private testing page has discount codes you apply at checkout saving you about 10%. MMH are the cheapest but there is also Medichecks, Randox and Blue Horizon.

Hold off on the antidepressants until you've tested yourself. They can be helpful for some, but in my view they are handed out far too readily.

[Stanleydoggy in reply to Sparklingsunshine]

Thank you sparkling sunshine. I did read somewhere T3 could suppress TSH so that's reassuring. I will get a private test as I think all I need is to see it's OK. I still don't get why they can rely on TSH for people who don't actually have a thyroid. Thank you.

[pennyannie in reply to Stanleydoggy]

By just running a TSH - the NHS will have saved 2/3rds of the cost of running a TSH + Free T3+ Free T4 - which last time it was looked into - some years ago - cost just under £1.00 to process each analysis -

Sadly - no matter how you get there - there are no different guidelines for those without a thyroid -

Without a thyroid - it's physically impossible to become hyper again -

though you could be wrongly / over medicated - but you'll not know unless you D I Yourself and run your own blood tests.

The TSH is the least reliable measure of anything especially if with Graves -

but it seems the NHS believe the TSH is the gold standard of all thyroid blood tests and able to identify all those patients struggling with poor conversion and who deserve a trial of T3 or possibly switching to the most complete thyroid hormone replacement option - Natural Desiccated Thyroid -

But since T3 and NDT have been withdrawn from primary care doctors remit to prescribe - I guess we don't matter -

as we can all afford to go privately for blood tests and buy the ' missing ' treatment options which the NHS has systematically removed from guidelines in the past 20 odd years.

[Stanleydoggy in reply to pennyannie]

Thank you Pennyannie. It's reassuring to know that my scepticism is reasonably justified. It was a real struggle to get referred for T3 trial after never feeling well for over three years post radio iodine treatment. I guess it got me off the consultant's list on which there must have been many more 'interesting' or urgent cases. I've had a few times since when I've been made to feel that being on T3 is an unnecessary privilege. The way whole thing is set up makes vulnerable people feel bad, which ultimately contributes to damaging their mental health. Many thanks. 🙏

[pennyannie in reply to Stanleydoggy]

Well yes - the whole system is such that you have to be well in order to negotiate and get heard.

I was too ill from RAI longer term consequences and I couldn't continue fighting for myself as it simply exacerbated my symptoms so started self medicating and have stayed away these past 8 years and am much improved looking after myself.

[Stanleydoggy in reply to pennyannie]

Yes me too. Only finally got heard once I'd gathered the strength.

[pennyannie in reply to Stanleydoggy]

We do now have some research that at least validates what many Graves patients live through and with -

but quite why RAI thyroid ablation is still even offered in what we understand to be a health care setting is beyond my understanding :

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

Now we just have to wait for mainstream medical to read the research and change the treatment guidelines and acknowledge what is now known - but I'll not hold my breath and shall stay away and Do It for Myself.

All things Graves Disease - books and website - elaine-moore.com

Barbara S Lougheed 's book - Tired Thyroid - From Hyper to Hypo to Healing - Breaking the TSH rules.

Both the above women went through RAI thyroid ablation for Graves Disease :

[Sparklingsunshine in reply to Stanleydoggy]

No its ridiculous isnt it? , but then so many decisions that the NHS makes regarding rationing care are mind boggling.

[Stanleydoggy in reply to Sparklingsunshine]

I reckon if they push a sick person into drastic and brutal therapies the ethical thing they could do is provide decent after care. But it seems that's not logical.

[Ashupan in reply to Stanleydoggy]

Stanleydoggy

I hope u get meds sorted. Hv question for u please. I am wait to have RAI treatment. 2 days isolation in hospital etc.

Did u go ok?

Did your salivary glands get damaged?

I am so scared and worried of side effects

[arTistapple]

Medics think they know best. Well even their slight knowledge will be better than that of the average overly trusting patient! However I have found them mainly to be very superficial in their knowledge and ‘stick to their field’, even although thyroid has an effect on almost every bodily function. This means that whatever their ‘field’ is, knowledge of thyroid issues should be near the top of their concerns. It’s an ‘wholistic’ disease picture. Medics don’t/can’t grasp this at all. I do wonder what we are really teaching these mostly inadequate medics. Seems to me we are all treated as if we were on a factory line. AI - nothing new here in medicine.