Vitamin recommendations?: Hello all. Just doing... - Thyroid UK

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Vitamin recommendations?

Tired_MiddleAged profile image
17 Replies

Hello all.

Just doing some research as alongside an underactive thyroid, my vitamin levels are very low.

Does anyone have any tips of particularly good vitamins to take, as I’m sure I will need stronger than a standard multivitamin!

Have added my levels for reference.

TSH 6.51 (R 0.27-4.2) 

T3 4.1 (R 3.1-6.8)

T4 14.6 (R 12-22) 

Iron 35 (R 30-150)

Folate 14.9 (R 8.85-60.8)

B12 29 (R 37.5-188)

Vit D 59 (R 50-250)

Currently taking 50mg thyroxine daily from Accord, since the beginning of June. Age 41 & female.

Thank you!

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Tired_MiddleAged profile image
Tired_MiddleAged
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17 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Has your GP seen your B12 level? If not then book an urgent appointment to discuss this. Unless you are vegan or vegetarian?

Do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...

You can deal with folate once your B12 has been addressed.

By iron do you mean ferritin?

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Many people like the Betetr you spray range. Some are available in oil or you can take it with an oily meal for better absorption. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...

Tired_MiddleAged profile image
Tired_MiddleAged in reply to Jaydee1507

I had to really push the GP to look at my thyroid results which I had done privately which was the main point of the apt, she said she needed to seek advice from the endocrinologist about medicating etc. I’ve had no follow up meeting, just a text saying to start taking thyroxine and that she had done a prescription for me!

greygoose profile image
greygoose

You don't need a multi-vit at all! They are terrible things, for all sorts of reasons. For one thing, they usually contain iodine, and you don't want that.

And your levels are so bad they need individual attention and probably further investigation. No multi-vit would never be able to raise them

SlowDragon profile image
SlowDragonAdministrator

Never ever see such low B12 result

GP must definitely test for Pernicious Anaemia and you will almost certainly need loading B12 injections

That’s numerous B12 injections over 2-3 weeks

Note that improving folate when B12 is very low is not a good idea.

Taking folate before B12 is at good level can lead to severe neurological problems.

en.wikipedia.org/wiki/Subac...

It is vital if you intend to supplement both B12 and folate that B12 must be started a week before the folate.

Ask on PAS Healthunlocked re loading dose B12 injections and how to get GP to take your levels seriously

Tired_MiddleAged profile image
Tired_MiddleAged in reply to SlowDragon

thank you for the reply this is so helpful. I had no idea and have now lost a lot of confidence in my GP!

SlowDragon profile image
SlowDragonAdministrator in reply to Tired_MiddleAged

These are presumably private test results as it’s Active B12 test (not available on NHS)

Take these results to GP

Request they retest B12 and folate

NHS test will be serum B12 test - range typically 180-680

Aiming for B12 over 500

Are you vegetarian or vegan?

Low vitamin levels extremely common when hypothyroid and will improve as dose levothyroxine increases over coming months

Thyroid levels will need retesting in 6-8 weeks

50mcg is only the standard STARTER dose of levothyroxine

Dose will be increased slowly upwards in 25mcg steps

Bloods retested 6-8 weeks after each increase

ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test

Which brand of levothyroxine have you started on

Tired_MiddleAged profile image
Tired_MiddleAged in reply to SlowDragon

Yes this was a medichecks thyroid function test. Not vegetarian or vegan. On Accord Thyroxine so having bloods retested in around a month. Would you advise to wait till then to discuss B12 or to seek help with that immediately?

SlowDragon profile image
SlowDragonAdministrator in reply to Tired_MiddleAged

GP should have tested already…..have you got access to NHS test results

If not do that first

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 some GP surgeries still 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.

if GP hasn’t tested yet, email/give these results to GP and request B12 and folate are tested now …..plus thyroid antibodies for autoimmune thyroid disease

Meanwhile you can start improving low vitamin D

Tired_MiddleAged profile image
Tired_MiddleAged in reply to SlowDragon

actually thinking about it I had initial bloods in Jan which flagged high TSH and low B12 but I never got the numbers. They wanted to do repeat bloods in July but I then went private with bloods in May as was feeling so dreadful. Early June was diagnosed 50mg thyroxine as antibodies very high. I’ve got my follow up bloods post starting thyroxine in approx 4 weeks.

SlowDragon profile image
SlowDragonAdministrator in reply to Tired_MiddleAged

so high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

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 

Having one autoimmune disease makes others more likely

Next step…..find out exactly what January results were

SlowDragon profile image
SlowDragonAdministrator in reply to Tired_MiddleAged

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels 

Low vitamin levels affect Thyroid hormone working 

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.

Most common by far is gluten.

Dairy is second most common. 

 A trial of strictly gluten free diet is always worth doing

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

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link) 

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies 

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first 

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

Hashimoto’s and leaky gut often occur together

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease 

1.1.1 Offer serological testing for coeliac disease to:people with any of the following:

 persistent unexplained abdominal or gastrointestinal symptoms 

faltering growth

prolonged fatigue 

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

SlowDragon profile image
SlowDragonAdministrator in reply to Tired_MiddleAged

I had initial bloods in Jan which flagged high TSH and low B12 but I never got the numbers. They wanted to do repeat bloods in July 

Bloods should have been retested 6 weeks after first abnormal test…..not 6 months

You need actual results of January test

Tired_MiddleAged profile image
Tired_MiddleAged in reply to SlowDragon

yes the GP wasn’t too worried then but perhaps levels were higher than they were in my recent bloods. Will call today and see if I can get that info - thank you!

HealthStarDust profile image
HealthStarDust

41 isn’t middle aged, surely?!

Tired_MiddleAged profile image
Tired_MiddleAged in reply to HealthStarDust

no it’s probably not but that’s how I feel at the moment! Beyond my years health wise!

HealthStarDust profile image
HealthStarDust

Hang in there. Sometimes that’s all we can do x

WiscGuy profile image
WiscGuy

Jaydee1507 posted a link to descriptions of symptoms of B12 deficiency. Here is another listing of symptoms in a simpler format. What you want to know is whether you have neurological symptoms, examples of which are in the first two groups:

pernicious-anaemia-society....

If the answer is yes, you are bothered by neurological symptoms, then you want to emphasize to the doctor that you are experiencing neurological symptoms. People can be experiencing symptoms of B12 deficiency, and the deficiency might or might not show up in serum B12 test results (a more accurate picture of B12 deficiency are homocysteine test and MMA test: when cells do not have adequate B12, these levels are elevated).

In my experience, the best single source of information on B12 deficiency with neurological symptoms is an article in a peer-reviewed medical journal called Mayo Clinic Proceedings. The article is "The Many Faces of Cobalamin (Vitamin B12) Deficiency".

One way to get this article in PDF format (It looks like a photocopy of the printed article) is to go to this link

mcpiqojournal.org/article/S...

and at the top, click on "Download full issue". The download will include each discrete article in the issue, including "The Many Faces of Cobalamin (Vitamin B12) Deficiency". Otherwise, it can be difficult to find the article in PDF format.

The main things you want to look for are mostly on the first couple of pages: some info on B12 deficiency with neurological symptoms; differences in blood tests results in B12 deficiency patients with neurological symptoms; why doctors are unaware (medical schools erroneously teach that B12 deficiency is always accompanied by enlarged red blood cells); profiles of six B12 deficiency patients with neurological symptoms, noting symptoms, diagnostics, and treatment for each patient; and a text box with most common misunderstandings of doctors regarding B12 deficiency with neurological symptoms.

About halfway through the article is a section called "How should treatment be given": read the first paragraph, noting the different, more-intensive treatment (injections weekly) for patients with neurological symptoms.

I suggest that you print out a copy of the article. Mark the things I have mentioned, so you and your doctor can readily find them, and take the printout with you to the doctor. Expect these things to be surprising to your doctor. Be aware that the treatment described in the article is consistent with British medical recommendations for B12 deficiency patients with neurological symptoms. Other members will likely provide links to the British recommendations (I am in the US and can't access those sites).

As far as possible in advance of blood tests, discontinue all oral vitamin supplements that contain B12. The problem is that oral B12 supplements can raise serum B12 test levels into the normal range, but not raise B12 levels high enough to have a beneficial effect on symptoms of B12 deficiency. The result can be that doctors discount the possibility of B12 deficiency and miss the diagnosis.

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