Low b12: Hi new member here I have low b12 but... - Thyroid UK

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Low b12

Rach_88 profile image
35 Replies

Hi new member here I have low b12 but symptoms of hypothyroidism?

Constipation

Goitre

Difficult swallowing

Dry skin

Tremor

Sweating

Hair loss

Puffy eyes and ankles

Pale skin

Feeling cold all the time

Should I look into this? Thank you

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Rach_88 profile image
Rach_88
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35 Replies
Nanaedake profile image
Nanaedake

Hello Rach _88, welcome, Ask your GP to run full blood tests for thyroid if not already done so. TSH, FT4, FT3, anti TPO thyoid peroxidase antibodies and anti thyroglobulin TgAB. Has your GP ruled out pernicious anaemia by testing for intrinsic factor antibodies? You should also test folate, vitamin D and ferritin to ensure these are sufficient.

Rach_88 profile image
Rach_88 in reply toNanaedake

Thanks TSH when tested was 7.2 (0.2 - 4.2) FT4 12.9 (12 - 22) FT3 3.1 (3.1 - 6.8) TPO antibodies 708.5 (<34)

Nanaedake profile image
Nanaedake in reply toRach_88

OK, well has your GP told you that you've got Hashimotos thyroiditis which doctors call autoimmune thyroiditis?

Are you taking any levothyroxine? What has your GP said about your results?

Rach_88 profile image
Rach_88 in reply toNanaedake

Thanks no I haven't been told I have Hashimoto's thyroiditis and not on levothyroxine

Nanaedake profile image
Nanaedake in reply toRach_88

Have you returned to see the GP with the above thyroid test results? And if so, what did GP say?

Rach_88 profile image
Rach_88 in reply toNanaedake

Hi no I haven't returned with the above results, should GP be doing something about this?

Nanaedake profile image
Nanaedake in reply toRach_88

Some GP's are reluctant to treat until TSH is above 10. as guidelines are unclear and vary in the UK. However, as you have a goitre, thyroid antibodies , are symptomatic and your TSH is above range, if it were me I would insist that the GP start me on levothyroxine.

Are you taking any other meds or do you have any coexisting conditions?

Have you got vitamin blood test results you could post?

Rach_88 profile image
Rach_88 in reply toNanaedake

Thank you I am not on any other medication but I take 800iu vitamin D and I have other problems like ovarian cysts, endometriosis, possible Addisons/Cushings and anaemia

Nanaedake profile image
Nanaedake in reply toRach_88

As SeasideSusie has already asked, how did you get your thyroid results and what has the GP said about them?

If there is any question you may have Addisons/Cushings GP will want to investigate before prescribing levothyrxoine so what has the GP said?

Rach_88 profile image
Rach_88 in reply toNanaedake

I got the thyroid results by asking for them at reception and they have abnormal contact patient on them but I haven't been contacted. The GP hasn't been investigating Addisons or Cushings, I paid for private adrenal tests which showed Addisons and then Cushings

Nanaedake profile image
Nanaedake in reply toRach_88

Have you discussed your private test results for Addisons and Cushings with GP? Could you ask for a referral to an Endocrinologist to get that checked out? It sounds complicated so you need to discuss thoroughly. Addisons is serious and needs to be followed up immediately.

Rach_88 profile image
Rach_88 in reply toNanaedake

No I haven't because I don't think my GP would accept them. I am under an endocrinologist for PCOS and I haven't been able to discuss anything but PCOS with him

Nanaedake profile image
Nanaedake in reply toRach_88

Well, GP can order own tests via NHS or refer. Do not delay if you have Addisons.

Rach_88 profile image
Rach_88 in reply toNanaedake

Vitamin D total 35.5 (25 - 50 deficiency)

Vitamin B12 331 (190 - 900)

Ferritin 27 (30 - 400)

Nanaedake profile image
Nanaedake in reply toRach_88

Vitamin D is deficient. Was this result before or after supplementing 800iu vit D?

Ferritin is too low, what has been prescribed?

Rach_88 profile image
Rach_88 in reply toNanaedake

After supplementing 800iu vit D, was taking ferrous fumarate for 4 years

SeasideSusie profile image
SeasideSusieRemembering in reply toRach_88

Rach

How did you get these results? Did you phone and ask for them or get a print out? Did the surgery phone you?

Rach_88 profile image
Rach_88 in reply toSeasideSusie

Thanks I went to the surgery and collected them since I didn't hear back from GP about them

SeasideSusie profile image
SeasideSusieRemembering in reply toRach_88

Rach

When did you get your vitamin and mineral results? Is anything being prescribed for them?

Rach_88 profile image
Rach_88 in reply toSeasideSusie

I got those a month ago, prescribed vit D 800iu about 2 years ago and folic acid a year ago and ferrous fumarate 4 years ago

SeasideSusie profile image
SeasideSusieRemembering in reply toRach_88

Crickey Rach, those results are dire considering how long you've been supplementing. But Hashi's plays a bit part in trashing nutrients because it causes gut/absorption problems.

Vitamin D total 35.5 (25 - 50 deficiency) prescribed vit D 800iu about 2 years ago

Sorry to say, but 800iu D3 will never raise your level, it's barely a maintenance dose for someone with a good level already. And it always worries me that when someone has been supplementing for years and their levels are still dire, what on earth does the GP think? Or are they just not bothered?

If your level was less than 30 when originally tested, you should have been given loading doses. At your current level, your GP is restricted (I believe) to prescribing just 800iu. I would suggest you buy your own supplement and sort this out yourself.

The Vit D Council recommends a level of 100-150nmol/L.

As you are Hashi's, for better absorption an oral spray is the best option, eg BetterYou which comes in 3000iu and 1000iu dose. You could take roughly the equivalent of loading doses which is 280,000-300,000 over a few weeks. I would suggest taking 9000iu daily for 4 weeks then reduce to 6000iu daily then retest. When you've reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

**

Ferritin 27 (30 - 400) prescribed ferrous fumarate 4 years ago

What does your GP say about this level? For goodness sake, it's below range! For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range. I would ask for an iron infusion which will bring your level up within 24-48 hours.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

Once improved, continue with liver regularly to maintain your level.

Any iron tablets, take each one with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from thyroid meds and two hours away from other medication and supplements as it will affect absorption.

As your ferritin is so low, you need testing for iron deficiency anaemia if not already done.

**

Vitamin B12 331 (190 - 900)

I wont comment as this has already been covered by other members :)

**

For thyroid hormone to work, nutrient levels need to be optimal. Your Hashi's is affecting absorption which is why your levels are so poor. Check out SlowDragon 's reply to this post for links and information on how to address gut/absorption problems healthunlocked.com/thyroidu...

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

**

I got the thyroid results by asking for them at reception andthey have abnormal contact patient on them but I haven't been contacted

You need to complain about this. FGS it says to contact the patient and they haven't!

TSH 7.2 (0.2 - 4.2)

FT4 12.9 (12 - 22)

T3 3.1 (3.1 - 6.8)

TPO antibodies 708.5 (<34)

Dr Toft, past president of the British Thyroid Association and leading endocrinologist said in an article for Pulse magazine that if antibodies present then patients should be prescribed levothyroxine to nip things in the bud. Email dionne.fulcher@thyroiduk.org and ask for a copy, print it and highlight Question 2 and you can then show to your doctor.

Rach_88 profile image
Rach_88 in reply toSeasideSusie

Thanks I don't know what the GP thinks about my result for vit D and my level at diagnosis was below 30. Nothing said about below range ferritin but I have got anaemia.

SeasideSusie profile image
SeasideSusieRemembering in reply toRach_88

I think you have to go and have a serious discussion with a different GP. Take someone with you for support who can speak up for you if necessary. Point all this out and get something sorted.

Nanaedake profile image
Nanaedake in reply toRach_88

You need to go back to GP, maybe another one in the practice and discuss. Has the GP said he/she thinks you have Cushings/Addisons and is it being investigated?

Rach_88 profile image
Rach_88 in reply toNanaedake

Thanks I did 2 private adrenal tests and the first one showed Addisons and then the other one showed Cushings

Nanaedake profile image
Nanaedake in reply toRach_88

As commented above. Addisons is serious and needs to be followed up immediately.

Rach_88 profile image
Rach_88 in reply toNanaedake

Intrinsic factor antibodies negative

Nanaedake profile image
Nanaedake in reply toRach_88

As you have Hashimotos you've likely got absorbtion problems and gut dysfunction. SlowDragon has good advice and links about how to improve gut function for people with Hashimotos. Poor gut dysfunction can cause low nutritional levels common in people with Hashis.

Gambit62 profile image
Gambit62 in reply toRach_88

IFA negative is a long way from proving that you don't have PA as a cause of B12 deficiency

- it's a test that is very specific (very small likelihood of giving a false positive) but not very sensitive (quite a high likelihood of giving a false negative: 40-60% of the time depending on the exact test method)

Nanaedake profile image
Nanaedake

As Gambit62 says, negative insstrinsic factor test does not necessarily rule out B12 deficiency or pernicious anaemia but best to post on HeatlhUnlocked Pernicious Anaemia forum for more specific advice on B deficiencies and anaemia.

Rach_88 profile image
Rach_88

Yes nmol/L

Rach_88 profile image
Rach_88

Ok thanks

Rach_88 profile image
Rach_88

Thanks expecting next B12 injection next week

SlowDragon profile image
SlowDragonAdministrator

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

Low vitamin levels stop Thyroid hormone working

So it's essential to get vitamins improved as well as start on Levothyroxine (replacement thyroid hormone)

BUT if Addison's Disease is suspected it's essential to do full adrenal test, as starting Thyroid hormone replacement can cause an Addison's crisis

See a different GP this week

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

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

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

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

PCOS is linked to both Hashimoto's and gluten intolerance

Getting Hashimoto's correctly treated, vitamins improved and being strictly gluten free diet may well improve PCOS

Strongly recommended taking supportive friend or family member as witness and to underline the seriousness of your symptoms

Wishing2468 profile image
Wishing2468

Hi,

Yes, I would get it checked. My thyroid issues deal with the discovery of nodules from a sonogram for another issue last summer where it was determined malignancy could not be ruled out. Prior to the sonogram, I did and still do have several symptoms you listed.

Repeated sonogram a week and nodule size has increased and there are 4 additional ones. My blood work indicated low numbers concerning the thyroid and will be monitored.

U.S. medical care seem to make decisions of 'observation and monitoring' rather than treat. I'm not on any meds, but uncomfortable effects persist.

If I were you I'd get it checked.

Good luck. .

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