Mystery Illness worsening

[juliekat]

Hi People,

I posted on here a few years ago with various possible problems which may or may not have been related to the thyroid.

This unfortunately came to nothing. I seemed to get a little better and was able to do a limited amount of walking. Also because my TSH never got much above the NHS limit low thyroid was never considered, despite me mentioning it frequently. (See the last year or so's tests below)

Unfortunately, I have now become quite ill in the last year or so. I have almost permanent variations of fatigue (no walking at all now), either on the sofa all day, or on a good day I will be able to do some light weeding in the garden or cooking in the kitchen, but not on the same day.

I also have bad muscle aches (mainly upper arms & shoulders for some reason), mad ectopics, horrendous depression (had to double my antidepressant dose), memory problems, and worsened vertigo. I put on 20 lb in 5 months last year, and have now put on more, which is soul destroying as I had managed to lose 3.5 stone in 2019 and kept most of it off for 4 years.

I have had countless blood tests, urine tests etc. all coming back normal (except the inevitable high cholesterol - "want some statins with that madam?").

The only things I have a clear diagnosis on are IBSD, and also I have now developed a fast heart arrhythmia, which appears to be completely random (and very scary). No one can find anything that is setting it off. It mostly happens in the early morning between 3am and 6am (although in the past month I have now had 2 in the evening), and sleep has now become very difficult. The cardiologist has done various tests and there is nothing structurally wrong with my heart, so he has dismissed me now as the "mystery woman".

I first got the heart thing badly in about December 2023, and had to go to hospital twice within a couple of weeks. Here they carried out numerous blood tests, ecgs, blood pressure etc. I was kept in for 12 hours the first time and about 8 the second.

Everything was normal except that my thyroid was quite problematic, TSH being 12.9 the first time and 7.42 the second, FT4 was 13.6 and FT3 5.3 the first time (both not taken the second time).

(Strangely a consultant had written on my test notes under the thyroid result - "either non compliance with medication or it needs increasing" - so presumably they thought I was taking T4 already?)

I was sent away with some Flecainide which I now have to take twice a day (with 1 or 2 extra if I have an arrhythmia, although they still last 5 - 8 hours). I still have had countless episodes of this since, although so far only in autumn/winter??

So I am now in a limbo situation where I don't really have much of a life and the doctors are throwing their hands up in the air. Because my last TSH test was 3, there is still no hypothyroid consideration, although I now have a new doctor who has conceded (under provocation) that I may possibly have subclinical hypothyroid, and, wonder of wonders, has agreed to refer me to an endocrinologist (months away of course). Although she is still veering towards the (catch all?) diagnosis of fibromyalgia/chronic fatigue syndrome.

Because this is an NHS endo I am not holding my breath, and am considering whether I should try and see a private one. However I am in the middle of nowhere on Anglesey, so none of the ones on your own list are very near.

Advice on endo appointments, whether to get tested before etc., would be helpful. Also if anyone knows a good private endo in North Wales that would also be good.

I have even tried the controversial temperature test - before I rise in the morning (using the word "morning" loosely), which was an average of 36.06 C over 5 days, but this is either relevant or not depending on who you ask.

Anyway, my results over the past couple of years are below. All vitamins/minerals etc. were always fine, only high ferritin sometimes, although when iron was tested as well this seems to be in range. (hscrp always very low).

It seems that whatever my FT3 and TSH are, my FT4 is always below or low in the range. I would like to know whether FT4 has any relevance to thyroid problems as this is the only thing that doesn't move much. My lowest TSH was 1.99 (briefly) and highest 12.9, and T3 3.57 to 5.3, whereas the highest my T4 has been is 13.6 and lowest 7.6 (mostly seems to hover around 11 - 13).

Tests -

6/2/23 Medichecks

TSH 2.81 mU/L (.27 - 4.2 mU/L)

Free T4 13.4 pmol/L (12.0 - 22.0)

Free T3 4.13 pmol/L (3.1 - 6.8)

Anti-Thyroidperoxidase abs <9.0 IU/mL (<34)

Anti-Thyroglobulin Abs 11 IU/mL (<115)

19/11/23 Hospital Thyroid B Satisfactory[?]

! Serum TSH 12.9 mU/L (0.25 - 4.20 mU/L) High

Serum Free T4 13.6 pmol/L (11.00 - 25.00 pmol/L)

" " T3 5.3 pmol/L (3.10 - 6.80 pmol/L) A Normal

5/12/23 Hospital

Serum TSH 7.42 mU/L (0.25 - 4.20 mU/L) ! and B Satisfactory[?]

Dr Commentary underneath -

"Increased TSH suggestive of poor compliance/inadequate dose. Consider review of levothyroxine therapy taking account of patient's clinical status. Allow 8 weeks post change in levo dose before retesting: aim for a TSH within reference range." (seems to be assuming I'm taking levo?)

18/10/24 Doctor

Thyroid - (BRE375) A normal no action

Serum TSH 3.05 mU/L (0.25 - 4.20 mU/L)

Serum free T4 11.9 pmol/L (11.00-25.00 pmol/L)

Lowest to Highest & Averages 2019 - 2024 -

Lowest to Highest - tests over the past 5 or so years -

TSH (Lowest) 1.99 (.35-5.50 mU/L) - (Highest) 12.9 (0.25 - 4.20 mU/L)

FT4 ( " ) 7.6 (7-17 pmol/L) - ( " ) 13.6 (11.00 - 25.00 pmol/L)

FT3 ( " ) 3.57 (3.1 - 6.8 pmol/L) - ( " ) 5.3 (3.1 - 6.8 pmol/L)

Averages - tests over the past 5 or so years -

TSH 2019 - 2024 11 tests = 4.96 average

FT4 2020 - 2024 9 tests = 11.72 average

FT3 2020 - 2023 4 tests = 4.26 average

As I said I would like to know whether FT4 has any relevance itself as mine is always below range or low. Is it not just a substance that active thyroid hormone is made from? or does it have any use of its own?

(I have taken a couple of online conversion tests. and it seems I do not have a conversion problem - "poor converters 29 nmol/s deiodinase activity" (mine was 39)

Also I am worried that because I ostensibly have 2 symptoms (IBSD and the fast heart arrhythmia) which might be considered more hyper, if I took T4 would this do more harm than good? Are these symptoms something that could also be seen as hypo? I wouldn't want to make the arrhythmia worse than it already is.

Hope you lovely people can assist me. I am getting very down about my life now. I have been used to being very active, and can't stand this inertia.

It may end up that I do have chronic fatigue syndrome or fibromyalgia (although I am wondering how many of these actually have an undiagnosed thyroid problem anyway?). I just want to know what is wrong so I can get treatment and maybe get my life back.

I apologise profusely for the long rambling post, but I wanted to make sure I didn't forget anything (happens a lot recently).

[greygoose]

So, you haven't had a thyroid test since 6/2/23? That's rather a long time ago in thyroid terms. But if we have a close look at those results...

TSH 2.81 mU/L (.27 - 4.2 mU/L) Too high. A 'norma' (euthyroid) TSH would be around 1. Over 2 suggests that the thyroid is struggling.

Free T4 13.4 pmol/L (12.0 - 22.0) Only 13% though the range. Much too low.

T4 is basically a storage hormone that doesn't do much until it is converted into T3, the active hormone. But that doesn't mean it doesn't do anything, although no-one seems very sure exactly what it does do. And people's need for T4 varyies from person to person. Some people would be ok with a low level, others need it quite high, even when T3 is good. And some people, like me, don't need any at all and feel better off without it. BUT the thyroid should be making a lot more of it than that! A euthyroid person would have an FT4 about 50% through the range. So, that certainly suggests there's something wrong.

Free T3 4.13 pmol/L (3.1 - 6.8) 27.84% Also much too low. A euthyroid FT3 would be around 50% just slightly lower than the FT4. The fact that it is higher in-range than the FT4 also suggests that the thyroid is failing.

So, why is the thyroid failing, that is the question. And the answer is that stupid TSH! It is just not corresponding to your low Free levels. And this suggests a pituitary or hypothalamuse problem, rather than a thyroid problem. One or the other is not reacting correctly to your low Frees levels, so not enough TSH is being secreted to stimulate the thyroid to make more hormone. The thyroid cannot make hormone without that stimulus. This is what we call Central Hypo. Doctors consider it so rare that they don't even learn about it in med school, so are incapable of recognising it when they see it. And the fact that they are obsessed by the TSH means that they don't recognise when there is a problem.

The fact is: you are very hypo - mystery solved? Probably. The heart needs a lot of T3 and you just don't have it. Being hypo is not just about having a high TSH, despite what doctors think. It's more about having low thyroid hormone levels - but try and tell them that!

So, what can you do about it? Firstly, read up on Central Hypo so that when you confront your doctor, you know what you're talking about. Secondly, write a new post here asking those with diagnosed Central Hypo who diagnosed them. There are some doctors out there that know about it because quite a few people on here have been diagnose with CH. I realise that most of them will be too far away for you to see in person, but more and more doctors are willing to have telephone or on-line appointments, so that could be a possibility. But whatever you do, do it quickly, because your thyroid will not be able to continue making that small amount of hormone it was making in 2023 - levels have probably fallen already. And it's going to make you more and more ill. There is a solution, but you're going to have to work for it, I'm afraid. Good luck!

[juliekat in reply to greygoose]

Hi Greygoose

I tried to put the tests I have had in the past few years on the post, but it didn't come out too clearly - the last test I had was actually at the doctors 18/10/24. I have reproduced them again below.

6/2/23 Medichecks

TSH 2.81 mU/L (.27 - 4.2 mU/L)

Free T4 13.4 pmol/L (12.0 - 22.0)

Free T3 4.13 pmol/L (3.1 - 6.8)

Anti-Thyroidperoxidase abs <9.0 IU/mL (<34)

Anti-Thyroglobulin Abs 11 IU/mL (<115)

19/11/23 Hospital Thyroid (said B Satisfactory[?])

! Serum TSH 12.9 mU/L (0.25 - 4.20 mU/L)

Serum Free T4 13.6 pmol/L (11.00 - 25.00 pmol/L)

" " T3 5.3 pmol/L (3.10 - 6.80 pmol/L)

5/12/23 Hospital

Serum TSH 7.42 mU/L (0.25 - 4.20 mU/L) ! and B Satisfactory[?] (no T3 or T$ this time)

18/10/24 Doctor

Thyroid - (BRE375) A normal no action

Serum TSH 3.05 mU/L (0.25 - 4.20 mU/L)

Serum free T4 11.9 pmol/L (11.00-25.00 pmol/L)

So the most recent test was at the doctors 18/10/24, although there was no T3 on this (as per usual!).

I am fine with trying the T4, but as you can see my TSH was within the "normal" range in October 2024 and so was deemed fine by the doctor. They didn't seem concerned that it had been 12.9 and 7.42 previously in the hospital.

As I said whatever my FT3 and TSH are, my FT4 is always below or low in the range. The highest it has ever been is 13.6, and in Oct 2024 it was 11.6. Whereas my T3 does not seem to ever get very low (in Nov 2023 it was 5.3 which was about 59.46% through the range I think).

Is the low T4, high or slightly high TSH and okayish T3 the thing that suggests Central Hypo? This seems to be what it is saying on the BMJ link given me by DippyDame & SlowDragon.

The main thing I am concerned about is the couple of symptoms I have which don't seem to fit the hypo theory possibly - ie the fast arrhythmia and the IBSD.

Can these be connected to hypo in anyway, or would they be more hyper symptoms, does anyone know, as I am worried that if I take T4 the heart arrhythmia especially, might get stimulated and become worse? That is the only thing giving me reservations.

[greygoose in reply to juliekat]

Is the low T4, high or slightly high TSH and okayish T3 the thing that suggests Central Hypo?

Yes, exactly. The thyroid senses there is a problems so greatly reduces production of T4 and makes more T3 to keep you going. But, without adequate TSH, it cannot keep that up forever and sooner or later the FT3 is going to drop low, too. The TSH is just not high enough compared to the FT4 level so that means a problem with the pituitary/hypothalamus which control TSH production. That is what Central Hypo is.

The main thing I am concerned about is the couple of symptoms I have which don't seem to fit the hypo theory possibly - ie the fast arrhythmia and the IBSD.Can these be connected to hypo in anyway, or would they be more hyper symptoms,

Anyone that tell you your symptoms 'don't fit' knows nothing about thyroid. Hypos symptoms can be anything, anywhere because thyroid hormone is needed by every single cell in your body to function correctly. And there is no rigid dividing line between hypo and hyper symptoms, a lot of them are the same. And you could not possibly be hyper with those results!

I am worried that if I take T4 the heart arrhythmia especially, might get stimulated and become worse

No, not going to happen. Not unless you over-dose on T4. But if you did that, you'd feel so ill that you'd reduce it long before it affected your heart. Your FT4 absolutely needs to be higher - something like 70% through the range - for you to be well. And you're a long way off that at the moment!

[juliekat in reply to greygoose]

Thanks very much for answering those questions greygoose. That has put my at rest.

I am going to write a new post about Central Hypo as suggested.

[greygoose in reply to juliekat]

You're welcome.

[juliekat in reply to greygoose]

Hi Greygoose

I wrote a new post as suggested about Central Hypo.

I had explained to them that my TSH was briefly 12.9 and then 7.4 a year ago, but apart from that it did not normally get higher than about 3 or 4. The FT4 was never higher than 13.6 (12-22 range) & last time (Oct last year) it was only 11.6, and it doesn't matter what my FT3 or TSH are, the T4 is always below or low in the range.

I did get a couple of replies, but one of them said it was unlikely to be Central as it was extremely rare & my TSH would need to be 1-2 and both T3 & T4 below range. They said that they had been told Central was due to the hypothalamus and you would be in hospital & not functioning with this. Secondary Hypo they said, is the pituitary gland & you can still functon.

I am now very confused. I thought Central & Secondary Hypo were the same thing?

What are your thoughts?

[greygoose in reply to juliekat]

Yes, I think you'd be better off forgetting the 12.9 and 7.4 results because they were one-offs and pretty much irrelevant. Possibly just part of the failing process of the pituitary/hypothalamus, just as cortisol will go high before adrenals crash. I don't know, I'm not a doctor, but the main thing is your TSH is not that high anymore and does not correspond to your Free levels.

Central and Secondary hypo are not exactly the same thing, it goes as follows:

Primary hypo = thyroid problem = high TSH plus low FT4/3

Secondary hypo = pituitary problem = low in-range TSH plus low FT4/3

Tertiary hypo = hypothalamus problem = low in-range TSH plus low FT4/3

But as it's not always possible to know which is responsible for the low TSH, pituitary or hypothalamus, we use the term Central Hypo to cover the two of them.

But she was wrong to say that Central Hypo is extremely rare, because it isn't. You only have to read on here for a while to see it isn't. And quite a few people on here have been diagnosed with it. The problem is that doctors are taught in med school that it is extremely rare so I suppose they pass that idea on to their patients. Doesn't mean it's true.

And it's certainly not true that the TSH has to be 1 or 2 and both Frees below range! Depends on the stage at which you catch it, because it's obviously going to get worse with time. There are no exact numbers that you need to qualify. What is important is that the TSH level does not correspond to the Free levels because the pituitary/hypothalamus are sick/damaged and incapable of responding to the low Frees.

They said that they had been told Central was due to the hypothalamus and you would be in hospital & not functioning with this. Secondary Hypo they said, is the pituitary gland & you can still functon.

You see, this person is a bit muddles because it's Tertiary hypo that is due to the hypothalamus, as I explained above. And no, you wouldn't necessarily be in hospital and not functioning. Secondary hypo is the pituitary and you can still function, yes, but badly. Because the pituitary makes a lot of other hormones apart from TSH. If the pituitary is failing, not only the thyroid but also the adrenals will fail because they both need stimulation from the pituitary. Then there is human growth hormone - and if that is low it will have all sorts of effects plus it will also affect conversion of T4 to T3 - and quite a few other hormones. So, you wouldn't function for long.

There are quite a few misconceptions on the subject in the medical world, where thyroid is concerned, and doctors tell their patients all sorts of weird things. To be sure, you really have to check out everything they say because saying it doesn't make it true!

I'll give you an example: one doctor (who liked to keep my TSH at 9 because that was 'near enough') explained to me, with diagrams, how Hashi's works: he said that the antibodies form a hard coating round the thyroid so that the hormones can't get out and you end up hypo. You would also end up dead, if that were the case, because you can't live without thyroid hormones. But that is typical of the weird ideas they get for lord knows where. Good job I knew better! lol

[juliekat in reply to greygoose]

Thanks for your help greygoose. It is nice to be able to discuss these things with somebody. It looks like I need to explore getting some Levo from somebody, whatever I have. I will see what the NHS Endo says (whenever it happens - it could be months), and go from there.

Thanks again to everyone

[greygoose in reply to juliekat]

You're welcome.

[Obsdian]

Sounds like a lot of similar problems that I have. Just adding to the existing comment. It sounds like your thyroid instability might be causing some autonomic issues as well.

[Hedgeree]

Hi juliekat,

Not sure if I've misread this on your post but with a Serum TSH 12.9 mU/L (0.25 - 4.20 mU/L) did they not discuss you having a thyroid problem at that point? Were you offered Levothyroxine?

[juliekat in reply to Hedgeree]

Hi Hedgeree

I didn't get to see the test results at the time, only when I asked the doctor to print them out for me later. No one mentioned it in the hospital, except that as I said, one of the hospital doctors had actually commented on the test paper under the thyroid result -

"Increased TSH suggestive of poor compliance/inadequate dose. Consider review of levothyroxine therapy taking account of patient's clinical status. Allow 8 weeks post change in levo dose before retesting: aim for a TSH within reference range."

So they seemed to be assuming I was already taking Levo? Also I don't know whether they thought I was already on Levo because my T3 was fairly high (5.3)? It might have been helpful if they had asked me at the time though, I might have got properly diagnosed??

Obviously no one took any notice of this and because when my TSH was last tested it was only 3 nothing was done (even though the T4 was only 11.6 at the time).

[pennyannie]

Hello Juliekat :

I would think your mystery would be mostly solved by the doctor in the consulting room with a prescription pad - for T4 - Levothyroxine - thyroid hormone replacement- aided and abetted by a nurse being allowed to tick box and action TSH + T3 + T4 blood test result and range.

I'm afraid most doctors in the UK know very little about hypothyroidism and simply refer to a very restricted, limited, TSH blood test result which in itself is meant to tell them everything they need to know about all things thyroid.

NHS doctors are paid to follow the computer reading and prompt and do not check further than their nose - as to what is going on even when a patient presents with hypothyroidism.

Too low a T4 reading = too low a ' natural ' T3 reading -

A euthyroid - a well thyroid and on no medication - would see a TSH at around 1.20-1.50 top :

T4 would be sitting at around 50% through it's range and easily and freely converting to a good level of T3 which sits tucked in behind the T4 at around 45% through its range -

The body runs on T3 not T4 - but we need sufficient T4 circulating in the blood to enable enough T3 to circulate within the body - in order for the thyroid to fully synchronise your needs throughout your body -

Your brain takes a large ' chunk ' of the T3 to enable critical thinking, and psychological, emotional and cognitive functions -

with your body having the ' left overs ' with which to supply your energy and physical ability and stamina to get you through the day without those aches and pains, digest and metabolise your food well - and repair and replenish your body of core strength vitamins and minerals when you sleep - ready for whatever the next day throws at you - and something we all take for granted until something happens and we find ourselves loosing our ' selves ' :

When blood tests are inverted and the T3 higher in % terms than the T4 in % terms -this yet another alarm bell that the body struggling and under extreme stress -

and running on empty of thyroid hormones -

though for some people this doesn't register with a high over range TSH which is when the computer has been programmed to ' track and follow up again over a period of months ' before be allowed to action a prescription for T4 - and / or referring the patient to an endocrinologist - if s/he feels your issues to complex for their own skill set :

[pennyannie in reply to pennyannie]

As you have been struggling with a too low a level thyroid hormones for some time -

a lower metabolism also likely means stomach issues and poor digestion and absorption of core strength vitamins and minerals and this alone will compound your ill health further than necessary -

Please get your ferritin, folate, B12 and vitamin D vitamins and minerals run as well as a TSH + Free T3 + Free T4 as no thyroid hormone replacement works well until these co-factors are up and maintained at optimal levels - which we can advise on - once we have some facts to work up from -

if taking any supplements stop all and anything containing biotin for around a week before you arrange an early morning fasting blood test by around a 9.00am - so we measure what your body is holding and trying to work with rather than that just ingested.

as just being in a NHS range somewhere is not conducive to good health, which unfortunately is what you keep coming up against with mainstream medical and feeling ignored despite tolerating worsening symptoms.

[DippyDame]

So, mystery solved for    juliekat

Central Hypothyroidism is causing your thyroid to fail!

See explanations from   greygoose and pennyannie

Treatment required asap.....levothyroxine!

bestpractice.bmj.com/topics....

"Treatment of central hypothyroidism is by thyroid hormone replacement (levothyroxine)."

Build your case and persuade your GP to initiate hormone replacement treatment. You can also use the BMJ link above as evidence ....which they cannot dispute!

Have you ever had a head injury including whiplash, that may have damaged the hypothalmus or pituitary.....just a thought

You need levothyroxine now before you become more hypothyroid and therefore more unwell

Book a GP appointment now.

Good luck!

[juliekat in reply to DippyDame]

Hi DippyDame

Thanks for the BMJ link. It seems as though this may be a possibility. Obviously my T4 is always low whatever the T3 or TSH numbers. And the TSH has been anywhere from 1.99 to 12.9 over the past few years, so that makes it confusing.

As I said to greygoose the only thing worrying me is the fast heart arrhythmia. If it is not a hypo symptom, might it get overstimulated by the T4 - does this sound silly? I know that hypo is usually associated with slow heartbeats (although when mine is not going mad it is usually in the low 60s), and constipation, and I have the opposite.

As I said I have now been referred to an endo by my new doctor (although she still thinks I probably have chronic fatigue syndrome), but I am not sure how you would broach the subject of Central Hypo with them. I will probably do as says greygoose says and write a new post asking those with Central Hypo how they got diagnosed.

Do you think I should get a new test done before I go to the Endo? Would they do a test themselves?

[DippyDame in reply to juliekat]

Firstly....don't apologise! You are unwell and are sensibly giving us the info we need to help you!

Your lab results only partly do the "talking"....your symptoms are a vital tool too....and yours shout hypothyroidism.

Medics are wrongly fixated on TSH which is causing a lot of problems for patients.

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

.........

thyroidpatients.ca/2021/07/...

TSH is only a useful marker before medication and if the system is functioning correctly....yours is not doing that. The most important result is FT3 followed by FT4.

6/2/23 Medichecks

Free T3 4.13 pmol/L (3.1 - 6.8)

So FT3 is an abysmally low at 27.84% through the ref range.....we aim for a %age roughly approaching 75%.....this result indicates hypothyroidism!!

The bottom line is that, for good health every cell in the body MUST be flooded with T3 by way of an adequate and constant supply...your body is not receiving adequate T3!

Symptoms are important but it is also important to remember that they can sometimes suggest both over or under hormone supply....it's tricky!

thyroiduk.org/signs-and-sym...

Given your labs I'd suggest your arrhythmia is the consequence of low thyroid hormone!

You need to test again and I suspect your results may have dropped since the 2013 test

Initially you need Levothyroxine to raise your FT4 if that does not help (e.g if T4 to T3 conversion is poor) then you may need to add some T3.

I'd suggest that when you are adequately medicated with replacement hormone(s) your heart will settle down

The heart needs a huge amount of T3 which is not available to it right now!....hopefully the conversion of adequate T4/ levo will solve your mystery.

We're all here to help.....just ask!

Good luck!

)

[juliekat in reply to DippyDame]

Thanks DippyDame and everyone else for all your help.

[DippyDame in reply to juliekat]

You're welcome......that's why we're here.

Hope it has helped.

[SlowDragon Administrator]

19/11/23

! Serum TSH 12.9 mU/L (0.25 - 4.20 mU/L) High

Serum Free T4 13.6 pmol/L (11.00 - 25.00 pmol/L)

With TSH over 10 you should have immediately been started on levothyroxine

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

You need FULL thyroid and vitamin testing

what vitamin supplements are you taking

When were vitamin levels last tested

Test thyroid early morning, ideally just before 9am, only drink water between waking and 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...

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

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

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

[SlowDragon Administrator]

once you have up to date test results see that thyroid specialist endocrinologist

Roughly where in U.K. are you

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS

thyroiduk.org/contact-us/ge...

Low thyroid levels results in low vitamin levels

Low vitamin levels results in low TSH

Getting vitamin levels tested and improving to OPTIMAL Levels is essential

Vitamin D at least over 80nmol

Serum B12 over 500

Active B12 over 70

Folate towards top of range

Ferritin at least over 70

Are you vegetarian or vegan

Gluten intolerant or dairy intolerant

Central hypothyroidism

bestpractice.bmj.com/topics...

ncbi.nlm.nih.gov/pmc/articl...

endocrinologyadvisor.com/ho...

academic.oup.com/jcem/artic...

ec.bioscientifica.com/view/...

academic.oup.com/jcem/artic...

[juliekat in reply to SlowDragon]

Hi SlowDragon

I am in Anglesey North Wales. None of the specialists is very near unfortunately. I may have to take a long trip to Chester.

My vitamin levels are always fine. I take vit D, sublingual B12 and good quality B vits. Vit D over 80 nmols; B12 well over these numbers, and folate also. My ferritin is always highish - anywhere from 250 to 320 ug/L (13 - 150). However my iron itself is always in range (although sometimes high in range). My hs-CRP is always very low - below 0.5 (<5.0 mg/L).

I am not vegetarian or vegan, or dairy intolerant. I had tests at the doctors (because of persistent diarrhoea) for IBD and coeliacs etc. All were negative which led to IBSD diagnosis (by elimination).

[SlowDragon Administrator in reply to juliekat]

Have you actually tried gluten free diet

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

[juliekat in reply to SlowDragon]

Hi

Yes I tried one for about 4 months. It didn't make any difference, but I try to stay away from too mch gluten anyway.

[SlowDragon Administrator in reply to juliekat]

Have you also tried dairy free

[juliekat in reply to SlowDragon]

Yes I also tried dairy free for some months but this didn't make any difference either. But I don't drink a lot of milk anyway.

[sparkly]

My heart goes out to you. I have been in the exact same position before being being diagnosed. I was housebound often bedridden at times over a few years. It took 8 years before I was finally diagnosed as my tsh had finally gone over range at 4.27. As no one before had ever bothered to physically examine me, I was just sent all over the show round hospitals.

Finally, I saw a private endocrinologist who physically examined me and was surprised how bad I was compared to my blood results.

You sound very much like I was with absolutely no quality of life.

I so hope you find a good endocrinologist who looks beyond blood results.

[juliekat in reply to sparkly]

Hi sparkly,

Thanks for that. I am really pleased you managed to get diagnosed. Hopefully I will get sorted out also soon.