Newbie and confused. Functional B12 deficiency?

[grumpyold]

Hi everyone,

I am new here but I have been a member of the thyroid forum for many years.

I've also just joined the Sjogren's and the lupus groups because some of my symptoms could be attributed to these though I have no diagnoses, and the Changing Faces group for my rhinophyma.

I have Hashi's and thyroid problems are as misdiagnosed, mismanaged, gaslighted and undertreated as PA it seems, from my reading on various sites.

I think I may have a functional B12 deficiency. I don't eat much food which contains B12 and I have been on Metformin for 8 years, both of which are known to reduce B12.

As a Hashi's person, good levels of vits and minerals are required for my thyroid meds to work optimally. I supplement with vitamin D3, K2 Mk7, magnesium glycinate, L methyl folate 1000ug, vitamin B complex, vitamin B12 methylcobalamin 1000ug x 2 a day and biotin 12,000 mcg (which I stop, a week prior to any blood test.)

I have a lot of random symptoms, some going back years, some acquired in the last couple of years.

My GP is useless so I try to sort my own problems out as far as I am able. I have had my suspicions that I may have a B12 problem, for a while now.

A Medichecks blood test I did last September showed an MCV level of 102.9 fl (81-98) and my MCH was right at the top of the range at 32.9 pg ( 27-33.)

Serum folate was 45.4 nmol/L (8.83 - 60.8). Active B12 was 93.8 pmol/L (37.5 - 188.)

Vitamin D was 97 nmol/L (50 - 250).

Anti nuclear antibodies test was negative.

Intrinsic factor antibodies test was negative. I am aware that false negatives are common.

Whenever I have had to have a full blood count at the surgery, my MCV has always been just above the top of the range, as has my lymphocyte count. The highest my MCH has been was in 2018 when it was 34.8pg (28 - 33.8) with my MCV being at that time 101 (80 - 99.)

Like I said, I am a newbie here and there is such a lot to learn, but am I right in thinking my results indicate I could have macrocytic anaemia?

I note that this can be a factor in blood sugar control (I was diagnosed with type 2 diabetes 8 years ago, despite always having a healthy "clean" diet and exercising) and I had to have an MRI on my brain 2 years ago, which showed I have cerebral small vessel disease, which can also be linked to low B12 at cellular level.

I also have a myriad of other symptoms which from my reading, I see can be linked to low B12 eg breathlessness, blurred vision, aching joints and muscles, chronic longstanding back pain around the L5/sacroiliac joint, hair loss etc.

If I were to go to my GP and beg to be tested for B12 problems even though my serum levels look OK, should I stop my folate supplement beforehand, and if so, how long before?

I currently supplement with 2000ug a day B12 but I don't want to stop these for months until they are out of my system. I appreciate I will have to stress to the GP that serum B12 testing will be useless, so I will need more in depth tests.

Do you think I have grounds to suspect functional deficiency and therefore, might stand a chance getting B12 jabs?

Sorry for the long post. Sorry, too, if my questions are naive 🤔😕.

Thankyou in advance, for any replies.

[Sleepybunny]

Hi,

Welcome grumpyold,

I suggest you read the new NICE B12 deficiency guideline published 6th March 2024.

nice.org.uk/guidance/ng239

I have some reservations about it but there are some good bits.

Should be some useful info in this thread.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

I'm not medically trained.

[grumpyold in reply to Sleepybunny]

Thankyou for replying.Just a quickie if I may? Should I stop my folate before a blood test and if so, how long before?

[Sleepybunny in reply to grumpyold]

Hi,

I don't know about that, sorry.

[grumpyold in reply to Sleepybunny]

No worries.

[Dancer57]

Hi,

As Sleepybunny says the NICE B12 Deficiency guidelines have changed, so this may help in getting a diagnosis via a GP although I have yet to test the new guidelines out myself with a Doctor. An Active B12 test would give some indication of your levels at cellular level.

If you are or have been taking B12 supplements I think you would have to stop taking them for a while as this could skew the result. Unfortunately I have no idea how long you would have to stop taking them for to get an accurate result. Thyroid UK might have that answer.

I did an Active B12 via Medichecks and to my surprise I was borderline low at 28.6, I think 25 and under is considered deficient. My total serum B12 was well within normal limits. I did a Methyl Malonic Acid test (urine) and that came out as high suggesting B12 deficiency. I don't take supplements other than vitamin D but eat a healthy vitamin diet including plenty of B12 foods.

To date, as far as I know, I am not anaemic!! I also have Hashimotos and a family history of Pernicious Anaemia.

Read the new guidelines and have a word with your GP, I am definitely going to be speaking with mine on this subject.

Good luck.

[grumpyold in reply to Dancer57]

Thankyou for replying. And for the good luck wishes. I'm sure I'm going to need it with my GP!!

[Dancer57 in reply to grumpyold]

I agree, it is the GP that "might" be the obstacle speaking from my own experience. I have recently changed mine but we will see. At least you have the new guidelines as some kind of back up!!

[Narwhal10]

Hi, just a quick welcome from me.

Back tomorrow - sorry.

[Orchard33]

A note on the new guidelines and GPs: I contacted my local Integrated Care Board about the new guidelines. They replied that they were conferring with clinicians in order to prepare their guidance. It will take some time and I imagine that ICBs will have costs at the forefront of their considerations in whatever version they publish.

[grumpyold in reply to Orchard33]

Thankyou for replying. I'm expecting to be gaslighted and stonewalled, so no difference to the way thyroid issues are generally treated then.

[Delilahmy]

hi and welcome … did I miss your b12 levels … I noticed you are taking 2000 b12 is that oral … have you had PA test ? Questions questions.

Your levels will be high if testing now as you are taking b12 … the old Nice Guidelines were to treat with injection loading doses daily if necessary until symptoms subside …. New guidelines

nice.org.uk/guidance/ng239?...

Might be worth a look as suggested above

Good luck

[grumpyold in reply to Delilahmy]

Thankyou for replying. My active B12 result was 93.8 which doesn't look bad within the range of 37,5 to 188 pmol/L. I'm more concerned that it isn't reaching my cells though serum level looks OK. High MCV and MCH in the past suggest macrocytic anaemia. That 2000 B12 supplementation is oral, yes. I did a private blood test and they said results showed I didn't have pernicious a anaemia but I am aware that false negatives are common. I think I'd feel even worse if I stopped B12 to get it out of my system in order to test bloods without supplementation.

It's all a conundrum.

[Delilahmy]

I know the old Nice Guidelines suggest treat if patient has symptoms - even as a trial. The false negatives … yes another concern … but PA does walk hand in hand with auto immune disorders…. And you are symptomatic.

Your b12 will of course br high if your taking supplements … but as you say may not be working at cellular level … good luck and stay close here the group is so knowledgeable

[grumpyold in reply to Delilahmy]

Thankyou.Honestly, forums are the best aren't they. I learnt SO much more on the thyroid forum than years of seeing doctors ever taught me.

This one seems as good. Thanks again.

[Delilahmy in reply to grumpyold]

Totally agree… lots of advice here and advice from people walking in our shoes … seem to know more than my endocrinologist …. And without a doubt absolutely strides more than any doctor I know…..

thankful always for the advice here …

[am111]

Your symptoms are clearly of B12 deficiency and unfortunately, orals don't work well for all, although tests start showing normal results on these. I suggest weekly shots till you recover fully. Of course, many people are unable to reduce frequency of shots once on them, so you may be stuck with them for life or able to reduce them gradually, but otherwise, this may resolve your B12 issues(back pain, joint pain etc. is pretty common with B12 deficiency).

[grumpyold in reply to am111]

Thankyou so much for your reply. I now feel vindicated that my suspicions are justified and that I do have grounds to ask my GP for jabs. I know my oral supplementation isn't working and it looks like my enlarged red blood cells have been ignored for years. I shall make an appointment and go armed with the NICE guidelines. You've been so helpful. I felt sure my symptoms could be related to B12 deficiency. Glad I'm not imagining it.

[am111 in reply to grumpyold]

High MCV is certainly another symptom of B12 deficiency. (Folate deficiency is another but your folate levels are fine).

I may also mention that most of the studies on orals have been conducted on cyanocobalamin. I do believe that it works well and clinical trials show so. More recently, many have been starting using methyl or other oral forms. There are at least a few studies that show that the methyl orals don't work as well. My experience is the same: methyl orals work well initially but stop working after a while while the cyano oral takes time to start working but really picks up after a while (like 2-4 months, which is also what the clinical trials show). I like to think of methyl as immediate release and cyano as some kind of storage version. Perhaps a combination of the two will be best but clinical trials on these are woefully lacking

Good luck!

[grumpyold in reply to am111]

Thankyou again. I'll definitely get some cyano. I'm acquiring quite a pharmacy here, lol.x

[Narwhal10]

Hi grumpyold,

Again, only a quick reply but I have been checking facts for you.

So, like Dancer57 has said about Methyl Malonic Acid test. Here is a simple explanation from a USA website.

testing.com/tests/methylmal...

Now, this is checking what is happening at cell level. Medichecks sell it at £160.00

Now, thank you, you have written what you are taking :-

Vitamin D3,

K2 Mk7,

magnesium glycinate,

L methyl folate 1000ug,

vitamin B complex, ( it contains B12, B6 and most probably folate).

vitamin B12 methylcobalamin 1000ug x 2 a day

and biotin 12,000 mcg (which you know about stopping a week prior to any blood test.)

So, apparently a laboratory needs things out of your system for 2 weeks. So the ones, I have put in bold and underlined. Finally I can answer that question.

Yes, you are correct in thinking your results indicate you could have macrocytic anaemia. Plus, you know what it means.

Hashimoto’s disease and PA/B12D go hand in hand. I use this term PA/B12D to cover all bases and the IF test being only 50 % reliable.

Now, you have had quite a journey and a rude arrogant man shout at you and insult you. Well, first your hyperthyroid then hypothyroid. Well which one ? Then type 2 diabetes and private genetic testing. So, this is the attitude you meet them with.

Here are my receipts for all my private tests and treatments. (I have proved many things without you attitude). Then you could if you wanted drop the D word if you wished. Are you discriminating against me because I am female ? They panic at this word. You can explain that you are very aware that women are twice as likely to have autoimmune diseases. It is linked to our XX chromosomes.

😘

[grumpyold in reply to Narwhal10]

Hi Narwhal 10,Thankyou for your very comprehensive reply. Yes, I've been through the mill a bit, over the years. Consequently I have zero faith in the system as I've always had to prove to the medics that I'm right. Looks like this will be another battle. I have looked at the MMA test from Medichecks. Very helpful, so thanks again for this. I have put the test and the cost of a nurse to come to my house to take my blood into my basket. I will order it properly tomorrow.

Asking the D question at the doc' s is a great idea. Never thought to play that card!

The lengths we, as women, have to go to....

Thankyou again for your advice.

Where would we all be without each other and forums, eh?

x

[QUE6T-33]

Hi there, not sure if this helps. But during the years I suffered untreated hypothyroidism, I also had elevated serum Active B12 levels. My diet wasn’t B12 rich & I wasn’t supplementing. The Doctor said as soon as my thyroid support was started, I would also see my serum B12 levels start to normalise. And they did. My hypothyroid state had meant that B12 wasn’t being utilised at cellular level & building up in blood. Not sure what if any other factors could affect the uptake & utilisation of B12, but it can happen.