Subclinical hypothyroidism, autoimmune thyroid ... - Thyroid UK

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Subclinical hypothyroidism, autoimmune thyroid disease - what to do next? Vitamins?

Vegan3 profile image
16 Replies

Hello,

I'm a newbie and this is my first post.

In June last year, my GP tested my thyroid function whilst doing a HRT review. I wasn't really aware that this was part of the blood tests or that some symptoms overlap with perimenopause.

June 2024 results: T4: 11 (11-22), TSH: 15.7 (0.27-4.2).

I was told I had subclinical hypothyroidism, due to the high TSH but normal T4 levels and a repeat test was recommended 3 months later. Test was done in the afternoon (as I didn't know this affected things).

Oct 2024 results: TSH: 4.8 (0.27-4.2)

TSH lower but still elevated. Test done on empty stomach, first thing. Repeat test recommended 3 months later.

Jan 2025 results: TSH 4.8 (0.27-4.2), TPO Ab: 600 kU/L (no range given, just says positive)

TSH still elevated. TPO antibodies are positive so I am at a high risk of progressing to overt hypothyroidism. Test done on empty stomach, first thing. Repeat test recommended annually (by text, I haven't been able to discuss it with my GP).

In the meantime I've been reading about the link between vitamins and thyroid function. I've just put a request into my GP to test my vitamin D, folate, ferritin and B12 levels, but I don't know if they will do this. I suspect they will be low as I'm vegan (for the last 7 years and was 30 years vegetarian before that). I've order some supplements but ideally I'd like to know what they are now before I start taking them. I've also read stress is a factor - there are things that I've been dealing with in the last 12 months and although I think I'm pretty resilient perhaps my body is reacting. So I'm also considering what adaptations I can do to reduce stress and increase resilience. Interestingly, in this same time period I've developed rosacea (which on reading also points to gut health/nutrition and stress).

My questions are:

Would vitamin testing/supplementing be the correct next step?

What else would you do?

Many thanks for anyone willing to share advice and for reading all of this!

Bernie 😀

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16 Replies
helvella profile image
helvellaAdministrator

Unfortunately, that first test was (in my view) misclassified.

Just imagine the test had come back with a result of 10.999, or the bottom of the FT4 reference interval had been 11.001. Either infinitesimal difference would have had you out of range! Hence overt hypothyroidism.

I think you are right to look at iron (hopefully not just ferritin but a full set of iron investigation tests), B12, folate, D. And a Full Blood Count.

Further, you are right to test (at least, draw the blood) before commencing anything.

Vegan3 profile image
Vegan3 in reply tohelvella

Thank you - this is really helpful. I'm kicking myself for not posting last year, but I thought I should wait to get more info. I found it odd that they didn't look at T4 on the second round of tests and the TSH being dismissed as it's only a bit out of range. I'll add the other tests to my request and I feel more confident it was the right thing to do. The suggested response rate from the GP is 4-6 weeks, so I won't know for a while. If they won't do it, I'll look into private testing.

helvella profile image
helvellaAdministrator in reply toVegan3

I wish it weren't the case, but you might have to do a private test to get the full set, and to get them within a short enough time to make decisions without further delay.

Obviously, this does depend on you being able to afford them. And I think to do the full set, you are going to have to have phlebotomy - not just a finger-prick.

Vegan3 profile image
Vegan3 in reply tohelvella

Thank you - I'll have a look at the forum posts re: private testing and costs. It is an additional expense, but if I can cover it I will. Health is wealth and it probably is better to get sorted sooner rather than later! Thank you so much!

SlowDragon profile image
SlowDragonAmbassador

Yes get these tested BEFORE starting any supplements

Full iron panel including ferritin

B12 and folate

Vitamin D

What supplements have you been taking up till now?

Anything at all?

Vegan diet is extremely low in iodine

If not been taking anything you also need iodine levels tested. But even if low you should NOT start any iodine supplements

Once you get started on Levo this contains iodine

Your high thyroid antibodies confirms autoimmune thyroid disease

June 2024 results:

T4: 11 (11-22),

TSH: 15.7 (0.27-4.2)

With TSH well over 10 and Ft4 0% through range GP should have immediately tested thyroid antibodies and vitamin levels retested

And started you on 50mcg levothyroxine

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

TSH should always be below 2 on levothyroxine

gponline.com/endocrinology-...

Vegan3 profile image
Vegan3 in reply toSlowDragon

Thank you so much for this detailed response! I'm not taking any supplements at the minute, although I've known that vitamin D and B12 are really important, especially on a vegan diet. I'm regretting that I've not been more proactive now.

I'll add the Iodine to my request. The suggested response rate from the GP is 4-6 weeks, so I won't know their response for a while. If they won't do it, I'll look into private testing. I've not ordered any iodine supplements because I read that it can make things worse. I'll hold off taking anything until I know what my baseline is.

There is no suggestion by the GP of starting me on levothyroxine at the minute. I weigh ~70kg. Perhaps I need to re-emphasise the symptoms I was attributing to perimenopause that are likely to be down to poor thyroid health: brain fog, fatigue, poor motivation and dry skin (which was the reason for starting the thyroid tests). I've always had cold hands and feet since I was a child. I've also always had a relatively low resting heart rate (~50-55bpm). Some of the other symptoms I don't have, e.g. I've not put on weight recently and I'm in an OK range for 5'8". From the flow chart you shared (which is ace BTW, thank you) I think they are putting me in an asymptomatic category. Should I be advocating for levo now, or should I wait for the additional tests?

greygoose profile image
greygoose

Hi Vegan3, Welcome to the forum. :)

T4: 11 (11-22), TSH: 15.7 (0.27-4.2).

I was told I had subclinical hypothyroidism, due to the high TSH but normal T4 levels

You already have overt hypothyroidism with a TSH that high and an FT4 that low. And if your doctor thinks that is subclinical and your FT4 is 'normal' then you need a new doctor because this one knows nothing about it.

A 'normal' (euthyroid) TSH would be around 1; over 2 means that your thyroid is struggling. And over 3 is hypo. It's just that the NHS wants to diagnose as few people as possible so insistes the TSH has to be over 10 to get a diagnosis.

Your TPO antibodies are pretty high so you do have Autoimmune Thyroid Disease - aka Hashi's. And one of the problems with Hashi's is that levels tend to jump around a lot, as you have seen. But waiting a full year for your next test is too long. Insist on having one after three months, that's quite long enough.

I've order some supplements but ideally I'd like to know what they are now before I start taking them.

Yes, you really ought to know the levels before you start. For one thing, you need a base line to measure your progress by. But also you need to know if you need them. Taking things you don't need is of absolutely no use, and possibly dangerous. What have you ordered?

But be aware, whilst vitamin and mineral levels are vitally important, they are unlikely to do much for your thyroid. Your failing thyroid is not due to low nutrients, it is due to being attacked by your immune system due to the Hashi's. Your thyroid is being slowly destroyed. No amount of nutrients will stop that.

And whilst stress can make your Hashi's worse, it is unlikely to be the cause. And, frankly, you need to be very wary of adaptogens. They don't suit everybody. And whilst they are reputed for balancing hormone levels, they rarely do exactly that. They either increase your levels or decrease them, willy-nilly, whether you need them increased or decreased. They don't tend to do both.

Rosacea can be a hypo symptoms.

Would vitamin testing/supplementing be the correct next step?

Taking the right nutrients in the right quantities would be a good idea, yes.

What else would you do?

Change doctors. Find one that knows something about thyroid who will put you on thyroid hormone replacement before things get too bad.

There's not a lot else you can do. You cannot cure, or stop Hashi's. The disease will take its course whatever you do. Get plenty of rest, of course. Make sure you eat enough good food. No low-calorie or other fad diets. Avoid unfermented soy, artificial sweeteners and highly processed seed oils. Get as much exercise as you can tolerate but don't push it.

And learn as much as you possibly can about your disease. :)

Vegan3 profile image
Vegan3 in reply togreygoose

Thank you for all this information. It's helped me see a bit clearer what is cause and effect. I have to admit I was thinking if I could improve my nutrition perhaps I wouldn't need medication, but that's also because I thought I didn't have overt hypothyroidism. I see now that I need to get onboard with acceptance and learning more - which everyone is generously helping me with!

I'll definitely request testing after 3 months (assuming I can get the vitamin tests and if not, it's time to change doctors!)

I've ordered:

For thyroid: vegan-vitality.co.uk/collec... (which seemed to cover the main things I thought I might be missing)

and naturesbest.co.uk/vitamins/...

For rosacea: naturesbest.co.uk/herbs-spi...

For perimenopause support: vegan-vitality.co.uk/collec... (but perhaps not after what you've said.

Re: stress adaptations I meant things like doing meditation, yoga etc.

I do eat tofu, so I'll swap it out for fermented options like tempeh. I don't use artificial sweeteners and I'll swap out seed oils too. I was thinking of reducing/excluding gluten for a month (due to the rosacea) to see what might happen. I used to be much more active than I am currently, but struggle to motivate myself if I'm honest. I walk the dog every day and do yoga once a week, but I'd like to start weight training to ensure I'm still mobile in my 60s/70s/80s!

I've been lucky to have had no health issues until my mid-late 40s, so it's a bit of an adjustment having all these issues arrive at once and trying to figure out what helps/to do. Really appreciate the advice!

SlowDragon profile image
SlowDragonAmbassador in reply toVegan3

If you can cancel those supplements suggest you do so

Multivitamins are at best a waste of money

And definitely not the peri menopause one as it’s adrenal adaptogen

Never mess with adrenals unless tested and found to be low or high

Get vitamin D, folate, ferritin and B12 tested yourself now

As a vegan/vegetarian you should be taking B12 daily and daily vitamin B complex

But test FIRST …may be so low as to need B12 loading injections

Same with iron …..could be extremely low

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

Or use Medichecks and get FULL iron panel test as well

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...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

greygoose profile image
greygoose in reply toVegan3

Totally agree with SlowDragon those supplements are not going to help you an the ashwagandha might actually do you harm. Multi-vits are just not the way to do it. They contain so many things you're unlikely to need and not enough of those you do need. They are wrong on so many levels. And the one rosacea is unlikely to help if your rosacea is caused by being hypo. You're just wasting your money.

You probably will need the vit D. Most peopel are deficient and being hypo will make it worse. But just taking vit D without it's cofactors won't do you much good. It would have been better to buy one that has vit K2-MK7 with it, because taking vit D increases absorption of calcium from food, and the K2 makes sure the extra calcium goes into the teeth and bones, and doesn't build up in the soft tissues and the arteries. And you also need magnesium with vit D, because the two work together.

If you're going to try gluten-free - which is a good idea - it has to be 100% or nothing. Just reducing won't help. And you need to do it for at least three months to see if it helps. And if it helps, then you should do it for life. Gluten intolerance doesn't cure itself.

Walking the dog and yoga once a week is quite sufficient for the time being, given how low your FT4 is. You mustn't over-do it. Leave the weight-training for later. It won't help your present situation and could make it worse.

Vegan3 profile image
Vegan3 in reply togreygoose

Thanks so much for your replies - apologies for the delay I was waiting until after the blood test.

I've done the Monitor My Health Full Health test and these were my results:

TSH: 7.29 (0.27-4.2)

FT3: 4.7 (3.1-6.8)

FT4: 15.7 (12-22)

Vit D: 28nmol/L - very low/deficient. Wasn't surprised, I did think it would be. I think I should be aiming for >75nmol/L (optimal), is that right?

They have said the results below are all 'normal', however I'm aware there is a difference between normal and optimal. They also said they don't have reference ranges for the tests below, just cut off points which I've added below:

Haemoglobin: 124g/L (<120 suggests anaemia)

Ferritin: 89ug/L (<15 suggests iron deficiency) I found something which suggested low is 15-29 ug/L, indeterminate is 30-99 ug/L, normal is 100-310 ug/L and high is >310 ug/L. So is this a bit low?

Transferrin saturation (TSAT): 37% (<16% suggests iron deficiency)

Folate: 5.4 ug/L (<3 suggests folate deficiency) I found something which suggested indeterminate zone is 3-4.5 ug/L. I can't find an optimal. So is this OK?

Active B12: 58pmol/L (<38 suggests deficiency). I'm vegan, so I thought it would be low. Is optimal >70? I found something which suggested average female levels are 114pmol/L?

So I'm going to supplement vitamin D and B12, but I'm not sure about iron. If you could confirm that I've understood this properly I'd appreciate it! Any suggestions of good supplements or other next steps would be welcomed too. I'm hoping that when my GP appointment comes through I'll be better informed and able to advocate!

greygoose profile image
greygoose in reply toVegan3

I think you really ought to put these results in a new post so that more people will see them and respond. I'm not well up on vit D or ferritin. :)

Vegan3 profile image
Vegan3 in reply togreygoose

Thanks will do. Wasn't 100% sure how this all works and whether to start a new thread.

greygoose profile image
greygoose in reply toVegan3

Best to, yes. Not many people look at old threads unless they're searching for something. :)

serenfach profile image
serenfach

If you think of your thyroid as being the engine that drives the rest of the body, it may help. Your engine is showing very low oil levels, the lights are flashing, but your mechanic cannot be bothered until there is damage to the whole car.

Your tests prove you have Hashi's. By delaying things, it wll take a lot longer to feel better, and get the oil levels right. See another GP as soon as possible. The thyroid tries its best to keep you going, and your results show it is working hard, but not making the right noises for the rest of you. Also, by not testing T3, your GP did not follow protocol, as it was your first test they should have done the whole range.

Taking the correct vits etc will help, but until your thyroid has the attention it needs, things wont get better. Just as we ask around for a good mechanic, ask around for a GP who knows something about the thyroid and I hope you find a good one who can actually give your thyroid the help it needs. Sending a hug.

Vegan3 profile image
Vegan3 in reply toserenfach

Thanks so much for this really useful analogy - it's really helped me! I've done a private blood test now so I've got a bit more info about all my thyroid hormones now and some of the key nutrients. The next step is supplementing and the GP I think!

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