Endocrinology appointment - what to expect?

[Gladys73]

I've just had an online (zoom) appointment and I have to say I'm a bit disappointed. I'm not here to complain about the appointment, but to ask if I was expecting too much of this appointment? My TSH has been yo-yoing for the last 5 years. My GP/Trust only test TSH (not FT3 or 4). The GP has been adjusting my dosage over time, but don't seem to be able to even out the condition - I don't think I've had a normal reading in the whole 5 years. I saved up to make a private appointment to see an endocrinologist, but I don't feel I've got anywhere nearer any answers. They have asked me to adjust when I take my dose and to do a home testing kit - talking again in 6 weeks. I wasn't expecting a magic bullet, but I was expecting more than the same advice that my GP has given me (adjusting the amount and time of day) for the last 5 years without any improvement. Am I being unrealistic to have expected something more?

[SlowDragon Administrator]

Welcome to the forum

Sorry you didn’t feel that consultation went well

For this reason we always recommend getting FULL thyroid and vitamin testing BEFORE booking any consultation

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

The fact your levels are hoping about suggests Hashimoto’s

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)

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 vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists

[e-mail]

Vast majority of endocrinologists are diabetes specialists

[SlowDragon Administrator]

Do you always get same brand of levothyroxine

Many people find different brands are not interchangeable

Have you had coeliac blood test done?

How much levothyroxine are you currently taking

Extremely important to take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

Many people find taking levothyroxine at bedtime is more effective

No other medication within 2 hours

Many, like iron, calcium, HRT, vitamin D or magnesium at least four hours away

[Gladys73 in reply to SlowDragon]

Thanks, lots to think about, but really appreciate you taking the time to give me all this information. I've ignored my condition (just plugging away with the levothyroxine) for so long that I've realised that haven't really got any good understanding of my condition at all.

I did have the antibody test though, and it looks like a no to Hashimoto's

Thanks again

[SlowDragon Administrator in reply to Gladys73]

Please add actual results and ranges

Important to test BOTH TPO and TG thyroid antibodies. NHS refuses to test TG antibodies unless TPO antibodies are high

Significant minority of Hashimoto’s patients only have high TG thyroid antibodies, obviously struggle to get diagnosed

Also 20% of Hashimoto’s patients never have high thyroid antibodies at all

Have you had ultrasound scan of thyroid done?

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

[SlowDragon Administrator in reply to Gladys73]

When adequately treated, especially if taking any T3 or NDT alongside levothyroxine then TSH is almost always suppressed ...as long as Ft3 is not over range you’re not over treated

Even on levothyroxine, in order to get high enough Ft3, Ft4 is frequently above range and TSH suppressed. Obviously many GP’s freak out if TSH drops under one

Constant changing of dose levothyroxine frequently results in extremely low vitamin levels

[DoodleMoo in reply to SlowDragon]

SlowDragon, when you suggest not taking HRT within 4 hours of taking Levo, is that just in tablet form? I am on HRT but use Oestrogel (gel you run on your skin) in the mornings. Should I change when I apply it? Thank you.

[SlowDragon Administrator in reply to DoodleMoo]

I don’t think anything topical on skin would affect absorption of levothyroxine in the gut

But being on any HRT may mean you need higher dose levothyroxine.

[DoodleMoo in reply to SlowDragon]

OK, thank you very much.

[greygoose]

In an ideal world, you'd have every right to be disappointed with that 'consultation' - anybody would be! But, this world is far from ideal - especially where thyroid is concerned. The trouble is that very, very few doctors - private or otherwise - have any understanding of thyroid. They just don't learn about it in med school. And, they're not interested enough to take it seriously and do their own research. They were taught in med school that it's 'easily diagnosed and easily treated'. And, if that's what they told them in med school, that is what they are going to believe, come hell, high water, and all proof to the contrary.

Your GP, for example, has no idea that if he doses by the TSH, he's never going to get your dose right. It's impossible, because you'r now on the hypo-seesaw. TSH rises, increase the dose, so TSH decreases, so reduce the dose, so TSH rises, so decrease the dose, and so on, and so on, and so on, ad infinitum. That's the way it works, that's how nature intended it to work. But, he doesn't know enough about thyroid to understand that. Dosing should be done by the FT3 - in an ideal world - but they won't even test that! Failing that, by the FT4. But never by the TSH.

This is why so many hypos get their own private tests done, learn about their disease and, if necessary, self-treat. What else are you going to do? Stay sick all your life just to please your doctor with a nice high TSH? Not me, anyway.

[Gladys73]

Wow, thank you so much everyone - been busy at work, so only just catching up on your thoughts. I've had loads of blood tests and it's hard to make head or tail of them to be honest. I had an appointment last year with a rheumatologist and although I (thankfully) don't have rheumatoid arthritis, some of my auto-immune tests were a little high (borderline, so not high enough to raise any red flags). My feeling (acknowledging that I am not a medic) is that Hashimoto's is a good fit for my condition, so it's good to know that it cannot be entirely ruled out with the blood tests I had. In answer to your question SlowDragon , the TPO was checked in 2018, and was < 20 kU/L, though I've not had it checked since. Definitely something to investigate more. Thank you for the links - will definitely be chasing this up.

[SlowDragon Administrator in reply to Gladys73]

Come back with new post once you get full thyroid and vitamin results and ranges

Plus thyroid ultrasound possibly if both TPO and TG thyroid antibodies are negative