Folate deficient and low B12: Hi all, I am being... - Thyroid UK

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Folate deficient and low B12

MelonJ
MelonJ

Hi all,

I am being treated for hypothyroid with 75mcg Levo. My Tsh measured this week was 1.58 mu/L (0.35 - 5). It has come down from 7.18 in November 18 with Levo.

I requested my vitamins be tested as I had previously had low Vit D and Ferritin and both were treated.

I am not currently being treated with anything except Levo and my BP meds. I was recently diagnosed with silent reflux and have been prescribed Gaviscon Advance after meals and before bed but I have only been taking it before bed.

My results this week show low / deficiencies as follows and I wonder if I can get advice on what to do since I have so far been concentrating on just Thyroid:

Folate 3.9ug/L (4-20) was 8.7 Jun 18 (Dr has prescribed Folic Acid 5mg daily)

Ferritin 60ug/L (12-250) was 42 June 18 and 10 March 18

Serum B12 196 ng/L (130-800) was 232 June 18 and 314 March 18

Serum CRP 4 mg/L <7 was 2 June 18 and 4 March 18

Vit D 44 nmol/L (30-300) was 49 June 18 and 36 April 18

Also had a full blood count and can list any results from that if it's useful.

Receptionist called today to say I was prescribed folic acid for folate deficiency and advised "eat more fruit and veg, that is the cause" (not sure how they reached that diagnosis.

Dr will have a telephone consultation with me next Thursday to discuss Vit D and other results, no mention of B12, so advice on what I should ask would be appreciated.

Thank you

Mel x

13 Replies
oldestnewest

Low vitamins... they really are scraping at the bottom of the range there which suggests that your thyroid levels are inadequate.

Folic acid (a stabilised chemical form of folate) alone isn't as good as methylated folate, which is the form found in natural foods. In fact some even think that folic acid is so hard for our bodies to convert into methylfolate (the usable form) that it can cause problems. We can take lower dose of methylated folate and get immediate benefits as it is so easily absorbed.

chriskresser.com/folate-vs-...

I like the b-Complex by Igennus that only contains b vitamins in their absorbable forms. It looks as though you'll need some intervention about your b12 - they should have offered further testing. Lots of websites on b12 deficiency symptoms.

chriskresser.com/b12-defici...

b12deficiency.info/

Also, they don't question your vitamin d levels... Supplementing vitamin d together with magnesium and vitamin k2 will improve uptake (magnesium) and send calcium to bones (vitamin k2).

easy-immune-health.com/magn...

MelonJ
MelonJ in reply to HLAB35

Thanks HLAB35. May 2018 I was prescribed VitD 3200 iu which I took with K2 but GP only gave me 3 months supply then wouldn't prescribe more and didn't retest. I continued for another month or 2 but not every day. June 18 I was prescribed Ferrous Fumarate x 2 daily which I took with Vit C. Pharmacy refused to supply more until Iron panel was done, not had more since.

VitD I had to request last time, this time they want to talk to me first. I'm sure they think everything is low because of my lifestyle. I don't have a terrible diet. Like most people, I have a busy job and keep myself active as much as possible.

SlowDragon
SlowDragonAdministrator

Just testing TSH is completely inadequate

75mcg is only one step up from starter dose

Low vitamin levels and acid reflux (due to low stomach acid) are common hypothyroid symptoms

Do you have Hashimoto's? Have you had thyroid antibodies tested?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Suggest you see GP and request dose increase in Levothyroxine and bloods retested in 6-8 weeks

If GP refuses to increase dose - retest privately after 6 weeks improving B vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Both B12 and folate are very low

B12 under 500 often causes hypothyroid patients problems

Do you have any low B12 symptoms? Eg dizzy, pins & needles

b12deficiency.info/signs-an...

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,

If you do see GP for full testing for Pernicious Anaemia before starting any B vitamins and before starting folic acid supplements as folic acid can mask low B12

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial. Folate can work better for many people and it would also improve low B12

If you have symptoms of low B12 and GP won't offer B12 injections you may also need sublingual B12 lozenges for few months

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Vitamin D has dropped further despite being on vitamin D supplements

How much have you been taking?

Suggest you try Vitamin D mouth spray by Better You. This is good as avoids poor gut function and is often easier absorbed

Vitamin D is far too low. GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

sciencedaily.com/releases/2...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

This article explains should discuss with specialists before taking any vitamin K if you take any blood thinning medication

drsinatra.com/vitamin-k2-su...

Vitamin D research and Hashimoto's

healthunlocked.com/thyroidu...

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

MelonJ
MelonJ in reply to SlowDragon

Hi Slowdragon,

blood tests were done after fasting, 8am appointment and last levo 24+ hours previously.

I got the usual response TSH is in range when I asked for increase in February when I was at 2.04 mu/L 0.35-5.0. Then she wouldn't retest until 12+ weeks. It is in range but should be lower, right?

Yes I do have Hashimotos - medichecks and NHS show raised TPA and TGA (Medichecks only test).

B12 - I was diagnosed with tinnitus before I even knew about my thyroid and have a lot of finger pains / some numbness (like they have been squashed) as well as the usual exhaustion, brain fog (memory is terrible). Again, GP always dismisses these things - they always tried to say all my symptoms were menopause. My daughter has B12 deficiency and I fought with her GP to get her regular injections which I have seen make a huge difference to her - even though I think she should have them more often as I see her decline as they wear off. So there is also family history here.

I think I will push for further testing before I start on Folic Acid if that is going to skew results.

Vit D - as in my reply above, I was treated for 3 months last year but then it was stopped and not retested.

Ferritin was abnormal (low) so again I was treated for that with Ferrous Fumarate but when stopped nothing was done.

I feel that Thyroid (TSH) is going in the right direction and I have seen improvement but still not right.

Thanks for all the advice and links above.

SlowDragon
SlowDragonAdministrator in reply to MelonJ

So you have plenty of symptoms of low B12

Suggest you also ask advice on PAS healthunlocked

And lots of helpful information on here

b12deficiency.info/b12-test...

If GP continues to refuse to test you can get further testing here

nutris.viapath.co.uk/pages/...

Using test of Homocysteine levels to check for low b12

b12-vitamin.com/homocysteine/

Good explanation on homocysteine

veganhealth.org/b12/hcy

Oral as good as injections

aafp.org/afp/2003/0301/p979...

B12 generally

drjockers.com/warning-signs...

Low vitamin D

Suggest you start self supplementing vitamin D. With Hashimoto's using vitamin D mouth spray is frequently more effective as avoids poor gut function of Hashimoto's

Likely to need at least 2000iu daily, may be higher. Retesting in 2-3 months

Here (if not retesting all via Medichecks)

vitamindtest.org.uk

Best to only start one supplement at a time anyway

......while you try to sort out getting appropriate testing for B12 and folate via GP, if possible or again you may eventually need to self supplement....but try to get GP to run full test first

If you have to self treat...then Igennus Super B complex has folate in (not folic acid)

Gluten

As you have Hashimoto's are you on strictly gluten free diet?

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.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 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...

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

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

restartmed.com/hashimotos-g...

healthcentral.com/article/t...

SlowDragon
SlowDragonAdministrator in reply to MelonJ

Once you get vitamin D higher and start on B12/vitamin B complex.....(or B12 injections) you will need to get full Thyroid testing 6-8 weeks later

TSH, FT3 and FT4

Likely to clearly show you need dose increase in Levothyroxine by then, once vitamin levels start improving

Re your daughter needing more frequent B12 injections. She may find taking a good quality daily vitamin B complex like Igennus helps.

Hi Mel,

being deficient in folate and vitamin b12 means that you quite obviously have the MTHFR gene mutation. The MTHFR mutation quite often is connected with an underactive thyroid and/or Hashimoto. The MTHFR enzyme (and gene) just like some others (MTR, MTRR, COMT, CBS, etc.) has to do with the methylation in your body and also deals with detoxification. The most common MTHFR gene mutation variations are C677T and A1298C. I give you the strong advice to have genetic testing done - a big test where many SNPs (mutations) are tested, because people don't have only one mutation. I don't know where you live, but if you live in the UK or Europe, I would advise you to get a (saliva) test from MTHFR Genetics UK (you can even book a specialist who can help you with the treatment and gives you a treatment plan, etc.) afterwards. If you live in the States, I'd advise you to get a test from Maximized Genetics (MaxGen).

Another remark: Do NOT take folic acid. Actually, no one should take folic acid, it's synthetic and there are studies by biochemists (e.g. Dr. Stephanie Seneff, USA) that it even causes damage to the body. But if you have the MTHFR gene mutation it is even worse, because due to the mutation your body cannot process folic acid properly, the mutation blocks it and it might end up in your brain then.

You need to take active folate (either methylfolate or folinic acid - this is NOT folic acid - which one, depends on what other gene mutations you have. People sometimes have problems with methyl donors - e.g. when they also have the COMT mutation, then they need to take folinic acid instead of methylfolate).

Concerning vitamin b12: do not take cyanocobalamin (it's not a good form of b12), better take either methylcobalamin (again: if you can tolerate methyl donors) or instead hydroxocobalamin and/or adenosylcobalamin.

A good book for the basics concerning gene mutations is the book "Dirty Genes" by Dr. Ben Lynch and there are also groups on FB (I am the admin of a group in Europe).

Best,

Suzanne

MelonJ
MelonJ in reply to Shaz2302

Thanks Shaz2302,

I just wrote in my reply to Slowdragon that my daughter is B12 deficient too and has injections. So the gene problem could explain this.

I will look into testing for us both.

SlowDragon
SlowDragonAdministrator in reply to Shaz2302

Shaz2302

This MTHFR testing looks really interesting.

As you say many, many thyroid patients seem to have MTHFR

I had been considering doing Blue Horizon DNA ....but this looks much better option

BTW there is easy way to get vitamin without using supplement. just get some fortified cereal in the morning. At least it makes sure you get portions of them every day, then you may get another from healthy food.

HLAB35
HLAB35 in reply to hkmuffin

I'm afraid that fortified cereal is very processed and it's always with folic acid, not folate (they are not the same). See Shaz2302's reply about genetics concerning folate and b12. I wasn't aware of the difference until I read about a British cyclist in a magazine who developed crippling neurological symptoms due to her inability to process folic acid. She had to avoid folic acid like the plague and take b12 shots to overcome her problems. Dr Ben Lynch talks about these problems on his blogs.

hkmuffin
hkmuffin in reply to HLAB35

If one really want to get folate and b12 in food. May be orange and pork/beef could be a food choice for them. Of course supplement or injection would always help. My country doctor won't really do b12 injection for normal health person.

HLAB35
HLAB35 in reply to hkmuffin

If b12 levels are below 200 your GP is pretty much obliged to investigate further with no excuses. There are several reasons for low b12 and they need to rule out the autoimmune illness of pernicious anaemia.

If you have PA you are entitled to b12 shots as most supplements won't work.

There are other things like long term use of stomach acid suppressing drugs that also block b12 absorption, and I think these patients need IV b12 as well.

The MTHFR problem is not understood nor tackled (yet) by the NHS while many of their agencies are strongly promoting the use of folic acid, so people who suspect they have the gene problem are pretty much forced to investigate this privately. If b12 is very low it would make sense to get things started with hydroxycobalamin injections.

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