Low fluctuating b12 but no advice from GP.

[Auto2]

Hi there, a bit of background about myself. I’m 23 years old (female) and have type 1 diabetes (since 3 years old), hashimotos (since 16 years old) and autoimmune hepatitis (since 22 years old).

I take budesonide and azathioprine for AIH, insulin therapy for T1D and also iron tablets for anemia discovered a couple of years ago and vitamin d tablets and levothyroxine for the hashimotos.

My GP has never managed my thyroid properly and after private blood tests this year, I have found out that it is hashimotos. I take 150mcg levothyroxine daily, blood results are ok but I know I am a poor converter of t4 to t3.

However since being diagnosed with AIH in late 2019, I have experienced a hashis flare and also discovered low vitamins (iron, ferritin, vitamin d, b12 etc). My diet is very good though and since more research discovering hashis, I have eliminated gluten. Could gluten have been causing my low vitamins and fatigue etc? Or something else?

Back in September my b12 was 149 (144-915) was experiencing pins and needles at the time but GP suspected either migraine with aura.

B12 then increased to 250 in January. So GP said there was no problem. However, I had a blood test yesterday and came back as 230. I’ve tried taking supplements but found that the methylcobalamin gave me head-splitting headaches.

Is it safe and advisable for me to take b12 supplements? If so what type would you recommend? Also would you be able to explain why my b12 levels are on the low side? Despite me NOT being vegan etc. and eating a balanced diet. I did have a great grandparent with PA.

GP has checked for IF antibodies but came back equivocal on first test and then negative on second. Also I have seen a test result showing I have positive parietal cell antibodies. Just wondering if that’s any help as to working out possibility of PA? Or something else? GP doesn’t seem interested in that though.

Also random but wondering if anyone has advice on my full blood count results. My RBC count had always been high, yesterday it was 5.12 (3.8-4.9). And I’ve also seen reports written that I have microcytic erythrocytes. And of reactive lymphocytes/atypical lymphocytes. Also erythrocyte sedimentation rate is often either 2 (1-12) or 5 (1-12).

Any advice would be appreciated. Thanks in advance😊

[fbirder]

First of all. Your B12 levels of 250 and 230 are, essentially, the same. The test they use is neither accurate not precise. You could test the same sample twice and get those results.

Yes, it is safe to take B12 supplements. If the methylcobalamin was giving you problems it's not hugely surprising. Many people seem to have problems with methylcobalamin.

But there's two bits of good news - 1. If methylcobalamin was giving you side effects then it means you were absorbing it from the gut. 2. Cyanocobalamin should also be absorbed, with no side effects.

So I would try taking oral cyanocobalamin, three times a day, for three months. Then see if there's any improvement in symptoms and blood levels.

[Auto2 in reply to fbirder]

Thankyou so much. Is cyanocobalamin the same as hydroxycobalamin?

I only ask because I have got a b complex in the cupboard that has b12 in it as hydroxycobalamin. If it isn’t the same then I’ll buy some different ones.

I did have a private blood test on the 24th feb which showed the active b12 and it was 35 (37.5 -188) but i don’t understand how that equates to the one that the doctors do.

[VellBlue in reply to Auto2]

There are four forms of B12 that can be utilised by our bodies: methyl-, hydroxo-, cyano- and adenosyl-.

Typically supplements are methyl- or cyano-, so I presume that's why FBirder mentioned taking cyanocobalamin supplements instead of the methylcobalamin ones. If yours have hydroxocobalamin in, that's fine to use as well. Just make sure you are getting enough. It may be better to take a B12 supplement rather than a B-complex so you can take plenty and don't have to be concerned about overdoing the other B vitamins.

[Auto2 in reply to VellBlue]

Ok great, thankyou!

[fbirder in reply to Auto2]

Yup, what VellBlue said.

As for your 'Active' B12 test -

B12 in the blood is attached to one of two proteins - Haptocorrin (HC) or Transcobalamin (TC). Only the TC-B12 can enter cells, so it's called 'Active' B12 (or, sometimes holotranscobalamin, or holo-TC). Normally there's about 4 times as much HC-B12 and there is TC-B12.

The normal serum test measures both types. The 'Active' test measures only TC-B12. The Active test is supposed to be more accurate and more precise than the serum test. The range for the 'Active' test is lower than for the serum test, as you would expect.

Your result is just below the bottom of the range, so you are deficient.

[Auto2 in reply to fbirder]

Thankyou again for your help!😁

[Sleepybunny]

Hi,

Some links that may be of interest.

There's a lot of info here so you may want to take a few days to sift through it. Some links may have details that could be upsetting.

I'm not medically trained.

Link about "What to do next" if B12 deficiency suspected or newly diagnosed

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about being under treated for B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic for B12 deficiency with an in range serum b12 result.

It mentions Functional B12 deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so patient has symptoms of deficiency.

The link has letter templates on a variety of situations linked to B12 deficiency that people can base their own letters on.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

england.nhs.uk/contact-us/h...

patients-association.org.uk...

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Summary of above document

pernicious-anaemia-society....

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

See section on "neurological involvement" in above link if you have neuro symptoms.

NICE CKS B12 and Folate Deficiency

cks.nice.org.uk/anaemia-b12...

cks.nice.org.uk/topics/anae...

Local Guidelines

Each CCG/Health Board/NHS Hospital Trust in UK will have its own local guidelines on treatment/diagnosis of B12

I suggest you track down the guidelines on treatment/diagnosis of B12 deficiency for your area of UK and compare them with BSH,NICE CKS and BNF links above.

Some areas of UK have guidelines that can be unhelpful. See blog post below.

b12deficiency.info/blog/202...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment in book is out of date. See BNF link in this reply.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

Copies of above books may be available from local library services in UK.

Neurological Consequences of B12 Deficiency

Vital to get adequate treatment. Untreated or under treated B12 deficiency increases the risk of permanent neurological damage.

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

I've written some very detailed replies with more B12 info eg causes of b12 deficiency, symptoms, more B12 books, more B12 articles, hints about how to cope with unhelpful GPs etc that you may find of interest.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

[Auto2 in reply to Sleepybunny]

Thankyou very much! I will do exactly that.