Vitamins: Hi I'm just starting this journey of... - Thyroid UK

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Vitamins

Meash profile image
33 Replies

Hi

I'm just starting this journey of information. I am subclinical hypo - last test TSH 6.83. I've got a lot of symptoms and i'm unsure whether it's all down to thyroid, or if I am vitamin deficient, or if I am starting another fun journey of perimenopause.

I'm vegetarian, my periods are regular and although I take suppliments, I seem to still be lacking in b12, folate and ferritin.

I am wondering if the vitamins I take are bogus. Can I ask for recommendations of good brands?

I've got a blood test next week and as well as the TSH, they will test for vitamins and thyroid antibodies. I'm actually excited about this, as if the vits are still low, maybe I will get some support on how to fix this.

I'm really struggling through life at the moment. The bare minimum is a chore! I'm missing out on all the fun stuff I like to do. Everything is on hold for when I feel awake enough to want to do anything. I'm lucky that I know how to do my job well, as half the time, I am feeling so spaced out and unable to use my brain.

Last year, I had 3 months of horrendous diarrhoea. That's what got me on the blood tests and to know that I have a raised TSH.

I hope I can gather some useful information on this site. Many thanks :)

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Meash profile image
Meash
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33 Replies
greygoose profile image
greygoose

Hi Meash, welcome to the forum. :)

Don't be taken in by this 'subclinical' hypo lark. It's just a ruse on behalf of the NHS to diagnose as few people as possible with hypo. The TSH of someone with no thyroid problems (euthyroid) is around 1. Over 2 it means your thyroid is struggling. And over 3 you are hypo. And, in some countries you would be treated at that level. Over 6 is well hypo!

And, if you're hypo you're almost certain to have suboptimal nutrient levels, which will also cause symptoms. So perimenopausal or not, you already have plenty of problems as it is.

although I take suppliments, I seem to still be lacking in b12, folate and ferritin.

Being hypo and vegetarian that's not surprising. Could just be that you're not taking enough.

And just taking B12 and folate is not going to do much good. The B vits all work together so need to be kept balanced. So you should be taking a B complex with them. One that contains methylcobalamin and methylfolate, rather than cyanocobalamin and folic acid. Thorne Basic B is a good one, or Igennus.

I've no idea what a good iron supplement is, but you do need to take vit C with it.

When you have your blood tests, do you have the blood draw before 9 am and fasting? Because that's when the TSH is highest.

Not sure what else you want to know, but if you have any other questions, don't hestitate to ask. :)

in reply togreygoose

It's reassuring to read this as a 'subclinical' person myself. I'm still struggling to find the right meds and regime for me but it's interesting as based on what you say here my thyroid has been struggling for 11 years :( TSH crept up to 2.5 in 2012 and continued to climb since. It makes me feel so let down by the NHS...

greygoose profile image
greygoose in reply to

I know what you mean! The NHS never even tested me despite all my symptoms.

in reply togreygoose

Unbelievable!

Meash profile image
Meash in reply to

Let down by the NHS - Me too! I didn’t even know what TSH was till the end of last year. Turns out my bloods had been showing subclinical a few visits and they never explained to me what it meant. It was me who went through the blood results and spotted vitamin deficiencies and pled my case for additional tests. It was me who advocated for the antibody test to determine whether it’s an autoimmune problem or a viral problem. It’s me who’s looking at the research that suggests foods you should avoid.

Emaych61 profile image
Emaych61 in reply toMeash

Join the club! I’d never heard of TSH until last year either, and that wasn’t as a result of an NHS blood test it was as a result of a private annual health check. I’ve had them for the past three years and their blood tests have to be done on a fasting basis. As I invariably go for an early morning appointment it’s always been between 8.30-9am which, by pure chance, meant the blood tests were done at exactly the right time and conditions for checking for problems with thyroid. I’ve had these health checks for the past three years. Having looked back at the records for previous years every single one of them has come back with a TSH of over 3. Last year it was 5.6 (and unlike the previous two that was above the 4.2 upper limit on the reference range). I was told to get T3 and T4 checked by the GP I saw at the time. Those blood tests were done by the NHS. It’s been a steep learning curve since then, the vast majority of which is down to this site.

Meash profile image
Meash in reply toEmaych61

Are you taking medication or are you just ploughing through? I've had my T4 checked but as it's fine, they say they don't need to check T3..

I've got my next blood test at 12:15pm. Too late to change that now.. Unless I book again for a week later at 10. Can I sleep as late as I can on the day to help the fact that the test is booked for midday, or would you suggest rebooking for the later test? I've been waiting ages for this test - I will then have more info to go in to advocate for myself.

Emaych61 profile image
Emaych61 in reply toMeash

At the moment just keeping on going. As things turned out two weeks after I was found with a raised TSH a second check was done as a part of a raft of blood tests for another problem which had cropped up unexpectedly. The request for T3 and T4 were added to the list. Amongst the others, unknown to me at the time, was another check for TSH. Again the tests were done 8.30-9am on a fasting basis. That came back in the reference range (by a whisker - although the range was different and the upper limit was 5.5). The T3 and T4 also came back in the reference range but at the low end, so “no further action” was deemed necessary.

At the end of last year I was checked for coeliac disease. You mentioned you had three months of diarrhoea, that’s really interesting as at the time of the coeliac test I’d had a similar problem for five months. When that test was done, again unknown to me, another check was done on my TSH but on this occasion, because of the coeliac test, it was not done on a fasting basis (though it was done between 8.30-9am). Unsurprisingly that result came back in the reference range again, lower than before but still high; coeliac came back as OK. Having spoken to the GP about it he’s agreed to re check the TSH; that’s due to happen next week.

Symptoms: dry eyes (mind you, I was found to have those about seven years ago and was checked for sjogren’s because they were so dry), dry skin, dry hair (it never used to be like that). For the past eighteen months I’ve also had a lot of muscle pain and stiffness currently diagnosed as fibromyalgia (though my physio has doubts about that), but I also have Hypermobility spectrum disorder/Hypermobility Ehlers Danlos. As a result it’s very difficult to say whether the pain is connected to the thyroid or not though as it began within a year of the raised TSH level the timing might be considered suggestive. I also have digestive issues but unless I’ve had thyroid issues for over a decade again they might be nothing to do with it.

So at the moment I’m not even what the medics like to call subclinical - or not as far as they are concerned - though at least they are keeping an eye on things. Mind you, the reason they are is because I’m requesting they do. Certainly they are not even considering medication at the moment.

Meash profile image
Meash in reply toEmaych61

The diarrhea was dismissed as a symptom of thyroid as with hypo you are meant to be the opposite way- constipated.. But I have read that this isn’t always the case.

Have you looked into cortisol levels, adrenal and/or mitochondria problems? Perimenopause? It’s all so similar..

Emaych61 profile image
Emaych61 in reply toMeash

As is so often the case with so many medical conditions there can be considerable variation when it comes to symptoms. I’m actually quite slim (BMI on the line between 19 and 20) which has caused some querying looks when I’ve mentioned the word Hypothyroidism: “Don’t you mean Hyperthyroidism..?” No, I don’t! No doctor has said it - yet. If they do they’ll get a quick answer. I happen to have a friend, a year or so younger than me, who was diagnosed with hypothyroidism around ten years ago. She was slimmer than I am at the time; last time I saw her (two and a half years ago) she still was.

I naturally tend towards constipation, have done all my life, so going to the other extreme set alarm bells off with all the medics, particularly as my mother died as a result of colorectal cancer. I was fitted in for a colonoscopy- that, for once, came back clear; usually they find a polyp to remove.

I did wonder whether I might have adrenal insufficiency last year. The unexpected problem that resulted in a second TSH test two weeks after the first one, was unexpected and non characteristic breathing issues. I’m asthmatic and having been on steroid inhalers for over thirty five years (and quite a powerful one for over twenty five) I did wonder whether adrenal insufficiency might be the cause: the breathing problem certainly didn’t feel like asthma, nor did it feel silent reflux related (which I’ve also had). But no, tests for that came back negative.

I’m actually eight years post menopausal. It’s not impossible that a sharp spike in digestive issues may have been peri mesopause related, but we’re talking well over a decade ago (I had a long and difficult peri menopause time) so very hard to say.

Meash profile image
Meash in reply toEmaych61

Well that is one positive- you can take menopause out of the confusion pot.

Emaych61 profile image
Emaych61 in reply toMeash

Difficult to know what to suggest about whether to rebook. I don’t know whether a test at 10am would be affected to the same extent though there are people on this site who will do.

Meash profile image
Meash in reply toEmaych61

I rebooked and was able to get an appointment for 8:30am 😀

Emaych61 profile image
Emaych61 in reply toMeash

Brilliant! As you’ve probably picked up from on here (‘cause I’ll be very surprised if you get told it by your GP) it’s best to do the test on a fasting basis (other than water to drink) too.

Meash profile image
Meash in reply toEmaych61

Got it!

Meash profile image
Meash in reply togreygoose

Hullo and thanks for your reply.

I had a choice of 5pm or 12:15pm for my bloods, so I took 12. This may be a silly question next.. if I stay in bed till 11am, will that be better to optimise the test?

Thank you for your vitamin advice also I will check out Thorne.

I feel heard with your reply- I’ve been to the doctors for a few years saying I’m tired, unexplained fatigue that didn’t match to when I was exercising.. They made me feel like I had a psychological problem trying to persistently bring up an issue that they didn’t want to address.

meash

greygoose profile image
greygoose in reply toMeash

if I stay in bed till 11am, will that be better to optimise the test?

No. It won't have any effect on your circadian rythme. Your TSH will still be at its lowest.

They made me feel like I had a psychological problem trying to persistently bring up an issue that they didn’t want to address.

Oh, they always do that. Their motto is: when you don't know what's wrong, blame the patient! It's the easiest way out and saves you a lot of work.

And, no, they don't want to address it because they know nothing about it. And you might ask questions they're incapable of answering! And that would never do. lol They're just covering up their ignorance, that's all.

Meash profile image
Meash in reply togreygoose

Whilst I am bothering you.. I have been feeling really tired and weak the last few weeks. My head isn’t working properly. I can’t retain short term info at all. I noticed that my heart rate is pretty low. And what I can see, this to do with the thyroid too? Is this a concern or should I pile it up with my appointment I have when I go in to discuss my results- which now would probably be in a months time at least.

greygoose profile image
greygoose in reply toMeash

More than likely that all that is to do with your thyroid. Low heart rate is a well-known hypo symptom - even a GP should know that - along with fatigue and poor memory. So, pile it up with the rest and hit your doctor over the head with it when you see him/her. You really sound very hypo.

Meash profile image
Meash in reply togreygoose

Ok. I’ll pile it on! I’m actually scared for them to consider medicating me, as if they can’t lead the way in investigation and spotting symptoms- how can I trust them to decide how to treat me..

greygoose profile image
greygoose in reply toMeash

Good question. And, I'm afraid the answer is: you can't. That is why we've all had to learn as much as we can about our disease to either guide doctors in our treatment, or treat ourselves. They just don't learn much about thyroid in med school.

mstp profile image
mstp

Have a straight talk with your GP. Tell him or her you want to try out levothyroxine to see if you feel any better because you can't go on like this. Tell them about what you've read. Work out what you will say beforehand. Good luck. I was like this for years. I was hyoer and had 2 bsbies. It was terrible. Three years before I was diagnosed I read about thyroid probs in the GPs waiting room and told the GP. My blood test apparently came back negative so another 3 years of hell ensued.

Meash profile image
Meash in reply tomstp

How do you feel nowadays? The doc I spoke to last time said they don’t medicate without symptoms. It made me feel like he had been occupied with something else whilst I had been speaking to him. I have loads of symptoms. I don’t just want to sit back and expect medication to fix all though. I have read that there are other issues that may cause a high TSH and symptoms of thyroid. So I will try to improve things for a few months before I say enough is enough. I used to have so many hobbies and interests. Now all I can do is drag my way through work then sit spaced out at home till bed.

mstp profile image
mstp in reply toMeash

Why wait? Remind the GP that he wouldn't medicate without symptoms then give him a list youve prepared beforehand. Once I was on thyroxine my health was fine for many years. About 15 years later the thyroxine stopped working efficiently so, following advice from this forum, I went to see Dr Peatfield who told me take liothyronine. That was twelve years ago and now I lead an active life regularly looking after my grandchildren, doing lots of cooking (having changed our diet to follow the Zoe way) and generally enjoying time spent with friends and family. The difficulty with thyroid problems is that there is always a reason why you feel bad. When mine began I had just had a baby and we had just moved to an old house that needed renovating. We tend to not to want to bother our GPs so we often blame other things. Unfortunately you will need to become your own best advocate.

Meash profile image
Meash

Thanks for your reply! I have also been looking at the Zoe package - due to energy levels. I've been looking at all angles really.. I've got my first consultation with a dietician next week. I will wait till my bloods are done and then go in asking for no more delays. My T4 was fine 15.8 (11.5-22.7) so I worry about medicating in case it causes problems for T4?

SlowDragon profile image
SlowDragonAdministrator

last test TSH 6.83

Graph showing median TSH in healthy population is 1-1.5

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

2 tests with TSH over 5, and symptoms…..and especially if you have high thyroid antibodies….

You should be started on levothyroxine

So GP should be testing you 6-8 weeks after abnormal test

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

What are your most recent vitamin D, folate, ferritin and B12

What vitamin supplements are you taking

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests 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

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...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

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

Tips on how to do DIY finger prick test

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

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

Meash profile image
Meash in reply toSlowDragon

I’ve just changed my blood test date so I can get an earlier appointment following everyone’s advice. Thanks!

I haven’t had my vitamins checked before, but in my last blood test results, I noticed RDW (Red Cell Distribution Width) was just above the recommended level @ 14.1 (range 11.6-14). On googling this levels, I read it equals Iron, B12 or folate deficiency. Or kidney disease.

Chloride was at the top end of the range @ 108 (range 95-108) which could be dehydration, kidney disease or metabolic acidosis (too much acid in blood which could explain the frequent spells of nausea and why coffee is now a no no for me in the mornings).

My white blood cells were in the low range. And I read to increase WBC we should take B9 or B12. So reading between the lines I believe I have deficiencies. Fortunately the doc I spoke to the other day listened to me and will approve my vit levels getting checked.

SlowDragon profile image
SlowDragonAdministrator in reply toMeash

Great

Come back with new post once you get results

Meash profile image
Meash in reply toSlowDragon

Thank you! Will do 👍

Meash profile image
Meash

Hi. I got my antibodies tested and they came back negative. The secretary gave me my negative results and nothing else was said. I’ve spent a few months taking loads of vitamins, trying restrictive diets, taking probiotics, started HRT just in case it was my age that was the problem. I’m still a mess. Some days I can do nothing. I can’t even have a good conversation as my brain takes too long to interpret what’s being said and I’m too slow to reply. It’s like I’m drugged. I’ve still got high TSH and symptoms are horrid. What do I do now? I’ve got my routine blood test coming up soon again (every 4 months).

Jaydee1507 profile image
Jaydee1507Administrator in reply toMeash

Suggest you start a new post as few people will see this tagged onto an older post.

The NHS only test TPO antibodies but privately you can also test Tg type.

How many TSH results have you had that are above range?

Meash profile image
Meash in reply toJaydee1507

Ok- thanks! I’ve had 5 tests above the range but under the number they medicate for in the uk. I’ll google what Tg is and will start a fresh post. Thank you.

Jaydee1507 profile image
Jaydee1507Administrator in reply toMeash

Some doctors believe that your TSH has to be above 10 to begin treatment. Note there is also another criteria of 2 TSH results above range to get diagnosed and begin treatment.

See NICE Guidelines and pint this out to your doctor:

nice.org.uk/guidance/ng145

So you probably could have started treatment months ago. You may need to be a little pushy and persuasive with your GP.

Tg - Thyroglobulin.

Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

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