Should everyone diagnosed with thyroid condition see an endocrinologist

[Cherri161220]

Should everyone diagnosed with thyroid condition see an endocrinologist, or just except medication from GP. I understand that some people may feel better on medication prescribed by their GP and feel no need to see anyone else. But thyroid conditions seem complex so just wondering if the medical pathway should be a referral.

[SlowDragon Administrator]

Are you in the U.K.

Before considering booking any consultation with thyroid specialist endocrinologist we ALWAYS Recommend getting FULL thyroid and vitamin testing done BEFORE consultation

Looking at previous post you have been left on ludicrously low dose 62.5mcg levothyroxine

Did you get increase in dose to 75mcg

Which brand of levothyroxine are you currently taking

Do you always get same brand at each prescription

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

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Low vitamin levels common as we get older too or if been left on inadequate dose levothyroxine

Low vitamin levels tend to lower TSH

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 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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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 down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Come back with new post once you get results

Meanwhile

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

[e-mail]

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one.

Most important results are ALWAYS Ft3 followed by Ft4.

When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

[helvella Administrator]

Hypothyroidism is regarded as a primary care (GP) managed disorder. Many who have been referred have had that referral rejected either somewhere in the system or by the consultant. And even those who get to see endocrinologists all too often feel there was little point.

However, that is not to say that GP care is adequate. You are right, it is a complex disorder shoehorned into a trivialised approach delivered by doctors who, all too often, have not been adequately trained.

[fuchsia-pink]

I'd say no, for two reasons

First, 80%+ of people on levo only are happy enough - this forum necessarily concentrates on the other 20%, so it seems that everyone struggles, but that's distorted

Second, the vast majority of endos are diabetes men and don't know much (anything?) more about thyroid than a GP

I'd say that if you are in the "unlucky" 20% camp, the key thing is much more blood testing than the NH routinely gives you, so you can see for yourself how you are doing - and "taking back control" (to use a phrase) and really pushing for a proper level of medication. And forums like this are a god-send x

[DippyDame in reply to fuchsia-pink]

"the vast majority of endos are diabetes men"

.....or women!!

Isn't it shocking in the 21st century that we find ourselves advising patients to learn about thyroid function/treatment, to take control of their healthcare and, in some cases, to self medicate.

This forum in particular is absolutely "a god-send", without it I may not be functioning ( alive even) and given to ranting frequently on the issue - but it should not be thus!!

For every suffering thyroid patient here there are no doubt many more who continue to suffer because of no/wrong diagnoses and /or wrong medication.

The fortunate amongst us are able to pay for tests and treatments and with luck to recover, but how many are left suffering and dying behind closed doors. And suicide amongst thyroid patients is not unknown. It beggars belief!

To Cherri161220

I would suggest that those, who do not respond to LT4, should be referred to an endo who has the knowledge to treat them appropriately.

The cohort who do not respond to LT4 are frequently suffering from very complex issues of varying degrees which need specialist thyroid treatment...not that of a diabetic specialist

We can dream!!

The current "medical pathway" is full of potholes. It needs to be dug up and reinstated with much improved material!

[Hidden in reply to fuchsia-pink]

Is there reliable statistics to prove that 80+% of hypothyroid patients are happy on levo only?I am asking as the general assumption in the medical community has always been that T4 to T3 conversion takes place outside the thyroid gland, and that conversion is normal in hypothyroid patients - hence the need to take levo only. However, newer evidence suggests around 1/3 of the conversion actually happens in the thyroid gland itself, which means that people who have no thyroid - either due to RAI, surgery, or end-stage Hashimoto´s - have decreased T4 to T3 conversion which levo cannot make up for. And, since the overwhelming majority of hypothyroid patients either have had RAI, surgery, or have Hashimoto´s, I find it surprising that over 80% would do absolutely fine on levo only...

[tattybogle in reply to Hidden]

Must admit i've always been suspicious the 'majority do OK' concept is not as true as it's made out to be .

Even if there are reliable statistics showing 80% /or even 'a majority' do fine on levo ... i would still be a bit dubious about them unless this data was gathered by asking patients themselves the proper questions.

I'm absolutely certain that nobody would find any evidence of me being anything other than 'OK on Levo' if they were :

gathering data from my medical notes,

or asking my GP's opinion of how many of his patients are 'well on Levo',

or looking at various tick box health questionnaires i have been asked to fill in over the years

I have NOT being 'OK on Levo' .... for 20yrs.

but all of those sources would indicate i had "adequately treated hypothyroidism + ? chronic fatigue problem that coincidentally started a year or two after the hypo diagnosis "

I do know a couple of people who really are 'OK on Levo '.. they do clearly exist.

(mind you one of them was first treated in the early 1950's and used to take 225mcg Levo and never go for blood tests from one decade to the next.)

[Hidden in reply to tattybogle]

Yes I think that many doctors conclude that patients are OK on levo once their TSH is in range, and remaining symptoms are often dismissed as not thyroid-related.

[DippyDame in reply to Hidden]

They don't seem to know the difference between glandular and tissue hypothyroidism and refuse to contemplate any form of thyroid hormone resistance.A GP I saw a number of years ago had never heard of T3 and thought all thyroid issues were treated by GPs

Better stop....I feel another rant coming on!!

[Mugs19 in reply to tattybogle]

I think you have hit the nail on the head. I was phoned recently by a committee member of the choir I have been in formore than 15 years, to find out why I haven’t returned yet. I know she has an under active thyroid and asked if she was still ok and still only on levothyroxine. She said yes, she was still ok. The only thing was that she doesn’t sleep. How on earth can anyone who doesn’t sleep feel o.k.? It is one of the most debilitating problems that lead to further complications. I think she has just conformed to the general expectation that she must accept her condition and get on with it. Anyway, wasn’t there a huge survey in the USA conducted by Mary Shomon years ago in which 50per cent of respondents said they weren’t satisfied with their treatment?

[humanbean in reply to tattybogle]

Another consideration when talking about "80% of patients on Levo are absolutely fine" is that if patients don't go to see their doctor the doctor assumes that the patient is absolutely fine and the doctor's treatment of "whatever problem the patient last saw them about" has been absolutely wonderful and the patient is well.

In reality, I pay for my own blood tests and decide for myself what to do about results that are out of range, and for things I do decide to treat e.g. my nutrient levels, my tendency to low iron, my dodgy thyroid etc I learn how to do it myself as safely as possible.

Whereas, if I go to see a doctor all they will want to treat is my high cholesterol because everything else will be considered to be "normal".

[fuchsia-pink in reply to Hidden]

I don't have a source but have seen it quoted in various places. I don't disagree that part of the issue here may well be people who self-medicate and so don't get included in any stats; and probably a far larger number who don't realise just how little their GP knows, what alternative treatments (or higher doses of levo) they ought to be getting, or that they don't need to settle for feeling ok - they should be feeling WELL.

And also agree that the assumption that "conversion is normal in hypothyroid patients" is clearly misplaced when you see the results people here post. They may "only" be part of the 20% [or whatever] that aren't properly medicated or thriving on levo-only - but they often show shocking conversion [as I can attest to personally]

[helvella Administrator in reply to fuchsia-pink]

First, 80%+ of people on levo only are happy enough - this forum necessarily concentrates on the other 20%, so it seems that everyone struggles, but that's distorted.

I think the point you are making is completely right to be made. But there has been increasing recognition that someone on T4 monotherapy is on an inherently unphysiological regimen. They will have blood test results which do not reflect healthy people (otherwise matched).

It will take at least decades for the idea that all hypothyroid patients might need at least a touch of T3 (or some other approach) to become widely accepted. And methods of management and delivery require deep consideration.

[tattybogle]

No...... not unless we first have endocrinologists who are properly trained with up to date knowledge in the art of thyroid hormone replacement, in ALL aspects of autoimmune thyroid disease including the effects of both stimulating AND blocking TSH Receptor antibodies , (also the gut , and nutrition etc etc)...... and most importantly are actually interested in the subject.

I think they'd then be called 'Thyroidologists'

Then i think everyone might benefit including those who seem to do fairly well on levo, and it might be worth the cost of referring all thyroid patients to them ...

but refer everyone to the bunch we currently have ? ... no thanks.

[NWA6]

Endos are about as useful as a chocolate teapot! 😂 Better to educate yourself and become a top sleuth! Find those Dr’s that really know what they’re talking about, you’ll know if they know, cause you’ll know. 😉

[Cherri161220 in reply to NWA6]

Should we have to educate ourselves...? It's crazy...feels like we beg for help...but difficult to find someone who can...!

[NWA6]

Oh my goodness 😱 Yes, a thousands times yes we should educate ourselves. Autonomy is everything. So with or without a ‘specialist’, we should always have an understanding of our condition(s). Unfortunately this is forced upon us and can be incredibly draining and traumatic because the very people who should be our educators, do not even know what they’re talking about and we are forced into this weird parallel universe where the ones who have the qualifications to treat us, won’t, and we’re gaslighted into thinking we have some kind of munchausens, hypochondria, mental illness that’ll magically disappear if go to counselling (only 6 sessions mind you cause, again, if we don’t sort our shit out in that time, we didn’t fully engage and it’s our fault), diet, exercise.

[Rocky]

I definitely think we all should and that they should start out by doing full thyroid testing TSH, T4 and T3. I have been put on a trial of T3 by my private Endocrinologist and am now under an NHS Endocrinologist after waiting 8 months for a referral. I know I was lucky to get seen, but I think it was only because my neck kept swelling up. My NHS was very knowledgeable about T3 and the thyroid and she told me that I was a very complex case because of my other autoimmune conditions, and I thought at that point that we should get referred if our GP's don't know how to manage our conditions. I seemed to do ok on Levothyroxine for about 13 years and then started having problems. I didn't realise it was because of my low T3 and having the faulty DIO2 gene. It's thanks to everyone on here that I have finally got sorted out and put on T3 now. I know it's down to funding and also know that I was very lucky who I saw on the day for my NHS Endocrinologist. We all know it's pot luck and she could have just been a diabetes specialist

[Mugs19 in reply to Rocky]

I was lucky to get the endo I first saw and he IS a diabetes specialist but he knows ten times more than the thyroid specialist on the team who is an absolute prat.

[Hidden]

In the ideal world that would be a good idea. However, you are not more likely to get the right treatment from an endo. Most are specialists in Diabetes