vitamins to support under active thyroid - Thyroid UK

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vitamins to support under active thyroid

Jamiekel123 profile image
23 Replies

Hi, I was diagnosed with an under active thyroid last June and have been on 50mg Levi ever since, I had bloods 8 weeks after and again blood test in January, doctor said my levels are now fine and to continue with dosage given.

They haven’t really given me any more Info but doing my own research I know vitamins can help but I’m just not sure what I can:can’t take and what can help, I was also told a month ago I have low iron levels and put on supplements to help with this, any advise would be much appreciated on vitamins and how to just feel better.

I don’t have my levels at the moment and waiting for this information from the doctor.

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Jamiekel123
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23 Replies
greygoose profile image
greygoose

Sounds like you have a thyroid-ignorant doctor, there. Highly unlikely that 50 mcg levo is all you need, that's just a starter dose. I'm willing to bet that all he tested was the TSH, and that came back somewhere within the unrealistic range, so in his tiny mind, you must be ok now. But it doesn't sound like you are!

And, if you're not getting enough thyroid hormone, then no nutrient is going to make you well. You can only replace a hormone with a hormone.

That said, you do need optimal nutrient levels to be well. But there's no magic here. A nutrient supplement is only going to help if you need it - more is not better - and can be dangerous. So, what you need to do is get vit D, vit B12, folate and ferritin tested, and supplement according to the results - we can help with that. :)

Your doctor doesn't sound like the type that would understand the importance of that, so you could get them tested in a privatet test. And, while you're at it, do a full thyroid panel. You need:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

This page from the TUK website will tell you all about private testing:

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

But, you do know that in the UK, you are legally entitled to a full print-out of your results, they can't refuse. So, always ask the receptionist for one whenever you have a blood test. Don't ask the doctor, he'd probably rather you didn't know! :)

Suvi8901 profile image
Suvi8901 in reply togreygoose

☝️👏👆✅❤️ Excellent answer!

greygoose profile image
greygoose in reply toSuvi8901

Thank you. :)

Jamiekel123 profile image
Jamiekel123 in reply togreygoose

thanks so much for your reply and your help. I went back to him and said I still don’t feel 100% and have fatigue and hair loss weight gain but said it’s not due to thyroid, which is frustrating.

greygoose profile image
greygoose in reply toJamiekel123

Yes, well, he's too ignorant to know about the non-specific symptoms of thyroid. And he thinks you're as ignorant as he is, and won't know any better! But, given that the thyroid hormone T3 - which I doubt he even tested - is needed by every single cell in your body, the symptoms can be anything and anywhere. Anything and everything can be a hypo symptom!

Can you change doctors? This one is never going to make you well.

Jamiekel123 profile image
Jamiekel123 in reply togreygoose

the problem is the surgery is full of different doctors so It’s pot luck which doctor I get and who gives me the results, last time I demanded an appointment again it was a new doctor who said levels were fine but test for iron levels because of hair loss and fatigue is probably due to my 1 year old! I am going to get my results tomorrow and see what they have actually tested for and go from there 🙏

greygoose profile image
greygoose in reply toJamiekel123

Really makes me mad how everything is organised for the convenience of the doctors, and the patient can go to hell. Just goes to show how they don't give a toss about their patients as long as they're not put out. How do they think that can work when the doctor you're seeing doesn't know you from Adam? Makes life so much more difficult for you.

Well, he could be right about the iron levels, but that doesn't mean there can't be other things wrong. I'm afraid the only solution is for you to learn as much as you can about your disease - as all of us have had to do - and stand your ground. Don't let them push you around and fob you off. Even now, you probably know more than them about thyroid disease because you live with it. I can't remember who said it, but someone said, the only specialist of any disease is the patient!

Jamiekel123 profile image
Jamiekel123 in reply togreygoose

yes your definitely right, I have learnt more in the last few weeks than the doctor has ever explained, also know my body and know it’s not where it should be! Thanks so much for your help and support :)

greygoose profile image
greygoose in reply toJamiekel123

You're welcome. :)

TSH110 profile image
TSH110 in reply toJamiekel123

I can ask to see the doctor of my choice at my surgery but may have to wait a little longer to see them. I have always been able to do this in all the surgeries I have been registered with and it’s a lot of them as I moved a great deal for work. If you get a better one make a note and insist on only seeing them in future.

The lottery of healthcare in the U.K. is a darn disgrace

TSH110 profile image
TSH110 in reply toJamiekel123

well what exactly is it due to?! Those are classic symptoms of under medication 🙄your doctor is an ignoramus I’m afraid. Can you see someone else and ask for a dose increase using the nice guidelines by weight which has been mentioned it’ll be hard for te GP to refuse to follow it if you bring it to their attention. If only they knew their job - they ought to on 100k a year! Their utter laziness and complacency makes me furious when we are the ones who suffer quite unnecessarily

Thanks goodness for this site!

For the record I had a better endo than most who aimed for TSH between 0.2 and 0.5 and the free t3 and free t 4 in the upper 1/3 of their ranges ( same with T3 and T4) Anthony Toft an eminent endocrinologist also advised these levels as optimal. Thyroid U.K. admin can give you a copy of the article in pulse it’s qn 6 where he states these values, which you could use in support of an increase in dose by highlighting it and putting it under your gps nose - saying you want that! He was surgeon to the queen when she was in Scotland so if his credentials are questioned drop that one in.

ETHEL103 profile image
ETHEL103 in reply togreygoose

Hi I recently had a thyroid test and asked for all the above.They didn't do t3 or antibodies.Ive just sent a private one off.My surgery recon a TSH over 5 is only just over the limits.Im on 25 levo.

greygoose profile image
greygoose in reply toETHEL103

Well, it is only a little over-range, you don't have to be a doctor to see that. The problem is the ranges are totally unrealistic. And doctors are to ignorant to understand that. But, in any case, your results are hardly likely to be optimal on only 25 mcg levo. That's a rediculously low dose.

ETHEL103 profile image
ETHEL103 in reply togreygoose

I'm battling to get increase.Talking to pharmacist next Wed .

shaws profile image
shawsAdministrator

Welcome to our forum Jamiekel123.

I am sorry you have hypothyroidism and I, personally, found that few doctors are aware of any clinical symptoms and I also have had awful nonsense from some of the doctors I consulted.

This is the method to try to get the best results when a blood test is due:-

Always book the earliest possible blood test - it is a fasting test but you can drink water.

Do not take any (levothyroxine) thyroid hormone replacement until after your blood draw and allow an hour to elapse before you eat.

The aim is to have TSH around 1 and Free T4 and Free T3 (rarely tested by GPs) towards the upper part of the ranges..

The majority of GPs don't seem to have much knowledge about how best to treat those who've hypothyroidism. The medical professionals I first consulted about symptoms hadn't a clue that I had hypothyroidism whereas our 'old school doctors' didn't need to know as they knew the signs/symptoms of those patients who had a problem with their thyroid gland.

Always take your thyroid hormones on an empty stomach with one glass of water and wait an hour before you eat.

It may take a little while for us to get to an optimum dose (we feel well) and I've found that few GPs seem to know how best to help restore our health.

Other members will also read and assist you. Once we get to an optimum dose we should feel well and be symptom-free.

SlowDragon profile image
SlowDragonAdministrator

First step get hold of all your recent results

See EXACTLY what has been tested

ALWAYS test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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 tested 

Also both TPO and TG thyroid antibodies tested at least once 

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 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.

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

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 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 and money off codes

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

bluehorizonbloodtests.co.uk...

Just Thyroid includes BOTH TPO and TG antibodies -£49

randoxhealth.com/at-home/Th...

Monitor My Health also now 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/getting-a-dia...

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Jamiekel123 profile image
Jamiekel123

well as suspected not much has been tested for- only TSH which is 2.79 mu/L and 3T4 15.6 PMOl/l I managed to get an appointment next week to discuss, but am going to get a private blood test in the mean time to check other levels!

SlowDragon profile image
SlowDragonAdministrator in reply toJamiekel123

On levothyroxine TSH should always be below 2

Request/insist on 25mcg dose increase in levothyroxine

gponline.com/endocrinology-...

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

NHS England Liothyronine guidelines July 2019

 

sps.nhs.uk/wp-content/uploa...

Page 9 

Test for Deficiency of any of the following: Vitamin B12, Folate,  Vitamin D, Iron

See page 13 

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Graph showing median TSH in healthy population is 1-1.5

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

which brand of levothyroxine are you currently taking

Many people find different brands of levothyroxine are not interchangeable

Only change one thing at a time ……so brand or dose

Stay on same brand levothyroxine as dose is increased

retest bloods again 6-8 weeks after any dose change or brand change

Approx how much do you weigh in kilo

Guidelines on eventual dose levothyroxine required is approximately 1.6mcg levothyroxine per kilo of your weight per day

Jamiekel123 profile image
Jamiekel123 in reply toSlowDragon

oh really, mine is closer to 3 than 2! The brand is Almus? Is that correct.

Thanks for the information the articles are an interesting read. I think I am going to struggle with an increase, doctor will insist results are satisfactory but I will persist.

Am around 78 kilos. So if I have calculated correctly dosage is well off?

Thanks slowdragan very helpful

SlowDragon profile image
SlowDragonAdministrator in reply toJamiekel123

TSH 2.79 mu/L

Ft4 15.6

please add ranges (figures in brackets after each result)

What time was test done in day

Test should be done early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Make an appointment with different GP

Request 25mcg dose increase in levothyroxine and request that vitamin D, folate, ferritin and B12

plus thyroid antibodies are tested now for autoimmune thyroid disease (assuming not been tested before)

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here 

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

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

SlowDragon profile image
SlowDragonAdministrator in reply toJamiekel123

Am around 78 kilos.

78kg x 1.6mcg = 124.8mcg Levo

So this suggests that the eventual dose levothyroxine might be around 125mcg per day

A few people might need a little less than guidelines, and some need higher dose than guidelines

Dose is increased SLOWLY upwards in 25mcg steps

Retesting 6-8 weeks after each dose change or brand change in levothyroxine

Jamiekel123 profile image
Jamiekel123

phone call with doctors went as expected, said my levels are not borderline and are fine, symptoms are prob due to lifestyle, explained I live a pretty healthy life style, she won’t up my dosage, but I insisted on seeing a specialist so I have been referred so fingers crossed, I get some more help from them! Thanks all for your advise and support :)

tattybogle profile image
tattybogle in reply toJamiekel123

in case it helps:

.. just because your results are not 'borderline' , that doesn't mean the GP can't try to improve them to 'optimal' .

This is a list of references which recommend GP's keep TSH between 0.4 /0.5 and 2.0/2.5 in patients on levo. ( some are written specifically for GP's) healthunlocked.com/thyroidu.... list-of-references-recommending-gps-keep-tsh-lower-

Thsi explains why increses may stil be neede even when TSH / fT4 are in 'normal ' range :

healthunlocked.com/thyroidu... -the-shoe-size-analogy.

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