Newly diagnosed - supplement advice needed - Thyroid UK

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Newly diagnosed - supplement advice needed

bardie53 profile image
21 Replies

Hi, I have recently been diagnosed with Hashimoto's. I have no symptoms so subclinical - my GP put me on a low dose thyroxine50 mcg I think it was, which made my tinnitus worse and gave me ear pressure and also made my asthma start to flare up. I'm no longer on thyroxine or any medication and will be reviewed again in a year unless I start to get symptoms. My GP surgery will not discuss supplements with me because they do not prescribe them.

I have tried Selenium but again, my tinnitus became worse. I have also been made aware of a herbal tonic that includes sea kelp, liquorice, turmeric, ginger, nettle sage and organic wine base, no idea of measurements of each ingredient - I'm unsure about this because of the sea kelp and have read this is not good for Hashimoto's. Should I persevere with Selenium and see if my tinnitus balances out?

My blood test results were Serum TSH Level 5.0 - serum free T4 level 12.3 and se thyroid peroxidase Ab conc 327

Should I be taking any supplements or just stay as I am?

I currently take Vit C with zinc and B12 - not anything to do with thyroid.

Thanks

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bardie53
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PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum

How long were you taking thyroxine 50 mcg for? Which brand?

Often increases are needed above this starting dose. The dose ends up replacing what thyroid produces not tops it up so you need retesting after 6 weeks and likely need an increase.

High TPO confirms Hashimoto’s or autoimmune thyroiditis. Your immune system is attacking your thyroid and further decline it likely. Early treatment is better than allowing levels to decline until severely symptomatic. Annually testing is far too long a gap.

How do the results compare before and after starting medication? Can you add ranges to your results as they vary between labs.

Once on replacement the TSH should be around 1 and FT4 in top third of range.

TSH & FT4 is not complete thyroid assessment was FT3 tested? (The active thyroid hormone)

Key nutrients are important as often low when hypothyroid and low levels also lowers FT4 to FT3 conversion. Testing Folate, ferritin, B12 & vitamin D are recommended, you need them optimal not just in range.

If GP refuses you have private options. Several companies offer Finger prick sample kit via post. Quickest way to make progress and obtain Full thyroid function, antibodies & nutrients in single pack.

thyroiduk.org/help-and-supp...

Testing should be first in morning thing after fasting before taking any dose. Do any of your supplements contain biotin (B7) this should be avoided before test as can interfere with testing and skew results. I leave off week before.

bardie53 profile image
bardie53 in reply toPurpleNails

I was on it about 4 weeks but am not going to keep taking a medication that gives me the side effects it did so an increase is not an option go be honest. GP spoke endocrinologist who advised annual testing due to no symptoms.

Those test results are all I have.

Are supplements worthwhile?

PurpleNails profile image
PurpleNailsAdministrator in reply tobardie53

Most over the counter type supplements tend to be too low to treat any deficiency and can often contain the cheaper least absorbable forms.

Some like Vitamin C is good to take and any excess get excreted.

200mcg daily selenium is OK. But reduce after 6 months to 100mcg. I leave a gap between bottles.

Things like iodine shouldn’t be taken unless deficient.

B12 tested first to know if you need B12. Often a B complex is better to balance out the B vits.

I cant comment on the herbal stuff but I’m of the opinion if you feel it helps keep taking unless there’s an ingredient known to be an issue.

I do suggest you only introduce 1 new supplement at a time leave a gap of at least a week to pinpoint if a side affect develops.

Ive also read Zinc prevents copper absorption so they needs to be balanced but in not very informed about it.

Hopefully other with better knowledge on supplements can offer more advice.

bardie53 profile image
bardie53 in reply toPurpleNails

I take the B12 because I've found it helps with reducing ear pressure and tinnitus - have tried a variety of supplements for this issue, including a vit B complex and have found B12 works the best.

My GP Surgery is not really one to send for various blood tests unless they feel it is necessary.

PurpleNails profile image
PurpleNailsAdministrator in reply tobardie53

There is a known B12 deficiency and tinnitus connection, and being hypothyroid can worsen it. Taking B12 helps, so isn’t it possible you have a deficiency and need a test to know if you are supplementing enough?

I think it makes testing necessary.

Doctors are obliged to treat deficiencies, they are not concerned if a result is in range even if low and you would need to obtain supplements yourself. The reason they are giving to refusing testing, saying they do not prescribe is an excuse because they do not want to interpret the test and prescribe.

humanbean profile image
humanbean

I have also been made aware of a herbal tonic that includes sea kelp, liquorice, turmeric, ginger, nettle sage and organic wine base, no idea of measurements of each ingredient - I'm unsure about this because of the sea kelp and have read this is not good for Hashimoto's.

I don't like the sound of this tonic to be honest. Sea kelp contains iodine and it isn't a good idea to supplement this unless you have been tested and been found to be deficient. If you turn out to be deficient after testing I have no idea what a sensible dose would be for supplementation and it is recommended that you get yourself someone knowledgeable and medically trained to guide you in improving your level. The best test for iodine is a urine test. Avoid loading tests for iodine completely, they aren't accurate at all.

Liquorice - there are different opinions on this. I avoid it because I found it raises my blood pressure. Liquorice contains an ingredient called Glycyrrhizin which is blamed for the rise in blood pressure and other adverse effects. See this link :

en.wikipedia.org/wiki/Glycy...

It is possible to buy liquorice with the Glycyrrhizin removed - it's called DGL Liquorice. Unfortunately, since liquorice isn't used as a medicine (that I'm aware of) there are no official standards for DGL liquorice and you can't tell how well the Glycrrhizin has been removed. I tried DGL liquorice but my blood pressure still rose.

Turmeric is a common supplement that is very popular, and I don't know anything about it that would put me off. I don't know anything about ginger, nettle or sage, nor have I heard anything good or bad about it.

As for the wine? I'm not aware of it being a problem, particularly since the amounts in a tonic would be tiny. :)

bardie53 profile image
bardie53 in reply tohumanbean

It was the sea kelp that put me off to be honest.

greygoose profile image
greygoose

It's probably just as well that your surgery won't discuss supplements with you, because they know nothing about the subject. They just don't learn about nutrients in med school and are likely to give you very bad advice. Never, ever, take any 'advice' about nutrition from a doctor: rule number one.

I currently take Vit C with zinc and B12 - not anything to do with thyroid.

If those ingredients are all in the same tablet, it's a very bad supplement for two reasons:

a) Vit C and B12 should not be taken together because the vit C blocks the action of B12 in the body.

b) Just taking B12 on its own is not going to do much good. The Bs all work together and should be kept more or less balanced. So, you'd do much better taking a good B complex - Thorne Basic B for example - and take the zinc and vit C two hours apart.

I take the B12 because I've found it helps with reducing ear pressure and tinnitus

Which are probably caused by being hypo. And, you are hypo, whatever your doctor says about 'subclinical'. A euthyroid (normal) TSH is around 1, never over 2 and you are hypo when your TSH reaches 3. But, the reason you cannot tolerate levo is probably due to low nutrient levels, which most of us have. Having low T3 reduces stomach acid levels, making it difficult to digest and absorb nutrients. The body needs optimal nutrient levels to be able to use the thyroid hormone you're giving it, effectively. So, one more reason to get thoroughly tested.

There are some supplements that you can just take without testing - vit C and magnesium, for example, because excess will be excreted. But, things like iron, vit D, vit A, etc should be tested for first because excess is not excreted and tends to build up in the body causing problems.

Zinc and copper are another example where testing is necessary. Zinc and copper need to be kep balanced, but when you are hypo, one tends to be too high, to the detriment of the other one - usually high copper, low zinc. But, you cannot know which is which unless you test them. Just taking supplements without knowing if you need them is never a good idea. The will only help you if you need them - more is not better. :)

bardie53 profile image
bardie53 in reply togreygoose

I've tried a B complex as well as a variety of other supplements but have found the B12 works best for me. I had vestibular neuritis last year, the tinnitus is as a result of that.

My test results for TSH show a normal range as between 0.27 and 4.20.

greygoose profile image
greygoose in reply tobardie53

Well, you do know that a B complex would contain B12, don't you? Perhaps there just wasn't enough B12 in it to help. And, there's no reason why you shouldn't take a B complex plus extra B12. The point is, they all work together and need to be kept balanced.

If you're going to start believing that anything within the so-called 'normal' range is actually 'normal', there's no hope for you! lol Someone with a TSH of 4.2 is actually hypo and could have a lot of symptoms. Ignore the ranges - doctors do when it suits them! As I said, a truly 'normal' TSH is around 1. All ranges, for whatever blood test, are totally unrealistic, and just a rough guide. Have a look at this article:

pmj.bmj.com/content/94/1117...

Sparklingsunshine profile image
Sparklingsunshine in reply tobardie53

Hi

I struggle with B12 levels and get 3 monthly injections, I feel I need them more often but the NHS won't play ball so I take a B complex and use a dedicated B12 mouth spray in between jabs. I dont absorb B12 from tablets.

humanbean profile image
humanbean in reply toSparklingsunshine

If you join the Pernicious Anaemia Forum on Healthunlocked they can tell you how to buy the things you need to inject yourself with B12 bought online - the ampoules, needles, syringes etc, and they can tell you how to inject yourself.

healthunlocked.com/pasoc

Good luck.

Sparklingsunshine profile image
Sparklingsunshine in reply tohumanbean

Hi thanks, I did do that but don't feel confident about sourcing the stuff or injecting myself tbh. Seems rather complicated.

Sparklingsunshine profile image
Sparklingsunshine in reply tobardie53

Hi

Just to add Levo isnt the only option for hypothyroid, there is NDT, natural dessicated thyroid and Liothyronine, which is synthetic T3. If you can't tolerate Levo there are alternatives.

fuchsia-pink profile image
fuchsia-pink

Please have another go with levo - your high TSH shows you will benefit from more thyroid hormone - but be aware that not all brands are the same (the fillers are different and people often find they don't get on with a particular brand).

In particular, a LOT of people don't get on with Teva (supplied as Teva and also Northstar 25 mcg) - which is lactose-free (which means some others actively prefer it) but contains mannitol.

Can you remember what brand you tried?

If a specific brand doesn't suit, "yellow card" it [see helvella 's "pinned post" on how to do this] and try another. Ask the GP to put "not Teva" [for example] on the prescription] or "Accord only" [for example] when you find a brand you get on with.

Good luck x

SlowDragon profile image
SlowDragonAdministrator

Levothyroxine is not a “medication” it’s replacement thyroid hormones because your body is attacking your own thyroid and destroying it

Just like a diabetic needs insulin to stay alive, a hypothyroid patient needs replacement thyroid hormones

Levothyroxine doesn’t “top up” failing thyroid, it replaces it. So it’s essential to be on high enough dose

Standard STARTER dose of levothyroxine is 50mcg, but dose is increased slowly upwards in 25mcg steps until on approx 1.6mcg levothyroxine per kilo of your weight per day

Unless very petite likely to be at least 100mcg levothyroxine per day

Bloods should be retested 6-8 weeks after each dose increase

Many people find different brands levothyroxine are not interchangeable

Teva brand upsets many people

Common for tinnitus to get worse before improving when starting on levothyroxine

SlowDragon profile image
SlowDragonAdministrator

Bloods should be retested 6-8 weeks after stopping levothyroxine

Likely to see increase in TSH

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Thyroid will become increasingly damaged over time

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 at least once year minimum

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

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.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

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

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 with Hashimoto’s

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

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...

SlowDragon profile image
SlowDragonAdministrator

Vestibular issues can be linked to being hypothyroid

pubmed.ncbi.nlm.nih.gov/285...

bardie53 profile image
bardie53

I've just sent a request to my GP for blood tests to cover what's been mentioned here.

bardie53 profile image
bardie53

My GP won't test for Vit A, T3 or iodine, says that is specialist but can get tested for other ones.

userotc profile image
userotc

Personally I think you should consider contacting a relevant naturopathic/functional practitioner, particularly as you are currently only sub-clinical. Of course, that (and the tests you cant get done by GP) will cost but it is health after all.

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