Advice - supplement and diagnosis

[Balloonbbb]

Hi,

I'm hoping for some advice on whether to pursue b12 def with my GP....

Some history for me (currently not diagnosed with a B12 deficiency)

2021 - GP - exhausted, burning pain in lower leg, pins and needles in feet, restless legs at night. All blood tests done (inc b12), told all normal, referred to neurology and an mri for pain in legs.

2021 - MRI suggested mild disc degeneration, no further action needed.

2022 - GP - still exhausted, brain fog, generally felt unwell, aches, heavy head. Tested bloods again , told all fine.

Feb/March 2023 - a private wellness check as still felt awful with more symptoms, results suggested sub-clinical thyroid. Took to gp, bloods redone (inc b12), told definitely not B12 but agreed sub clinical thyroid and put on low dose of levothyroxine. Some symptoms eased, others returned.

June 2023 - GP - felt horrendous again, blood test suggested too much levo so taken off it , GP suggested trialing HRT ( I don't feel it's menopausal for a number of reasons but agreed to take the prescription but haven't started it yet).

Instead I did a medichecks test to get a baseline on everything and active B12 was lower end of scale. I was going on holiday and desperate to feel even a little better and asked a pharmacist for a b12 supplement, she gave me better boost spray (methylcobalamin) & told me to double the dosage.......7 weeks on and I feel some of the symptoms lifting...not as exhausted, brain fog is clearing a little, heavy head disappearing, can do light exercise again.

My question is:

The leg pain/pins & needles have and still are present throughout and now I'm considering that the b12 might be a factor and if sorted properly with the GP it would ease? and possibly my other symptoms would improve even more?

I'm worried that now I've taken a supplement she won't consider it again.

My results:

March - NHS - serum B12 - 344 (220-700)

June - Medichecks - active B12 - 49.7 (37.5-150)

Any advice welcome, many thanks x

[jade_s]

It's possible to be functionally deficient even when serum levels look fine. I developed severe neuropathy when starting serum B12 was in the low 300s and rose to high levels with sublingual B12.

Intrinsic factor antibodies, homocysteine, and MMA can be useful to get, if you can convince GP. Info on testing pernicious-anaemia-society.... and b12deficiency.info/testing/ and stichtingb12tekort.nl/engli...

Is there any family history? Parents, aunts, uncles, cousins, grandparents with PA or who got "red shots"?

[Balloonbbb in reply to jade_s]

Thanks Jade for replying, no there's no history of PA in my family.

Think I'll approach the GP to look at those tests you've mentioned so I can rule it out before maybe starting HRT.

[jade_s in reply to Balloonbbb]

My family history only became apparent a few years after i started SI ... first a sibling then a parent fell victim to PA, lucky me the groundbreaker 😅 I now suspect one or two of my grandparents had it.

[Balloonbbb in reply to jade_s]

Oh you were the lucky one! But I bet it made it easier to get a diagnosis for them x

[jade_s in reply to Balloonbbb]

LOL 😉 One would think that wouldn't they 🤣 A bit fat Nope. One had a positive IFAB test so we thought it would be smooth sailing. When she requested more frequent injections, they redid IFAB and it came back negative. So told "you don't have PA". Neurologist said that PA/B12D was outside the scope of their knowledge/practice. (!!!) The other relative is going through a naturopath so more success there, but a different neurologist, GP, and others have all said she's just a "tired mother". Like me, her IFAB test has been negative multiple times.

The one benefit was that we recognized symptoms quickly, so they didn't wait too long to start SI , and the damage was limited. Unlike in my case, where I'm still recovering years later.

[Balloonbbb in reply to jade_s]

how awful, I'm amazed how people have been treated when reading on this forum, if I hear 'your a busy person' or 'you're at that age' one more time I feel like I'll explode!

I've got teenage twins now but I remember the baby tired stage very well and it was nothing like this I've gone from running half marathons 4 years ago to not being able to manage a gentle gym session and being told to exercise more to feel better.

Its good your family recognized the symptoms from you, I hope you continue to get back to better health x

[jade_s in reply to Balloonbbb]

Yes we could fill a whole encyclopedia with all the nonsense people have heard throughout the years!!

Thank you and I hope you find a good way forward as well xx

If you ever want to start self injecting, all you need to do is ask, and we can provide info.

[B12life]

you have to find a way to get b12 shots. It may mean finding a doc who is willing to try. Or get your own supplies and start injecting. I too felt horrible in the 300s and even worse when I dropped to 190.

In my opinion, you are b12 deficient! Which I am basing on personal experience.

I had one doc who believed anything under 600 should be treated and to tell the truth,~ 600 is when my symptoms started... brain fog and back pain.

[Balloonbbb in reply to B12life]

Thanks B12life for replying, I do think it is the underlying problem but now I've supplemented not sure how I far I'll get with a diagnosis! I already have other autoimmune conditions, psoriasis and thyroid antibodies but both under control so was inclined to think another one was maybe in the mix!

[B12life in reply to Balloonbbb]

how are you supplementing? injection? I don't think oral will make much difference?

also, if you by chance are vegan, the lack of meat causes a b12 deficiency and oral supplementation will work fine. otherwise, if you eat plenty of meat there is a problem with absorption and injections will mostly likely be needed. I NEVER got a diagnosis until I was 190. and believe me. You don't want to wait until it gets that bad. I was bed ridden. That's when they said I was mildly low and didn't need injections.

WTF???

So I now realize, as far as b12 deficiency goes, once you have a serum b12 test giving you a baseline value, it's a waste of time to wait for the docs to get on board and treat.

there isn't anything they can do. If you don't start treating this, the symptoms may become permanent.

You are getting sucked into the same vortex of poor care that we all did in the beginning.

this article states all the misconceptions docs have of b12 deficiency. ncbi.nlm.nih.gov/pmc/articl...

B12 is not toxic at any dose unless you already have an underlying kidney or liver problem that existed before taking b12. I found and searched out medical journals on this and my brother that is an ENT stated the same.

Thus at a minimum, get tested for vit d, folate, iron, (and sounds like you already have: thyroid), kidney and liver function. Testing the kidney and liver function tells you whether or not you have an existing problem with those organs that may inhibit b12 injections. If those test fine, you can inject any amount of b12 harmlessly w/o the risk of any toxicity. Now allergies to b12 are entirely a different thing but are more on the rare side.

I strongly encourage you to start the injections. I believe anyone lower than 400 and maybe even 500 should inject.

Injections saved me. I went from bed ridden and so bad that I couldn't imagine ever getting better to living a normal life.

Thyroid and b12 deficiency go hand in hand as well. for the thyroid, there is a thyroid forum on healthunlocked as well.

FYI, my symptoms were:

severe back pain, sciatica, numbness in the feet and hands, brain fog, heart palpitations, very high resting heart rate, and beyond debilitating fatigue. 85% of which are resolved after 2 years of daily with cyanocobalomine (or EOD injections with hydroxocobalomine )

[Balloonbbb in reply to B12life]

You've done really well to get to where you are now, good that you are in much better health!

'vit d, folate, iron, (and sounds like you already have: thyroid), kidney and liver function' - yes I had these tested, vit d was deficient in March but with supplements I've brought it up a bit.

Been supplementing with a spray and doing double to triple doses, I'm going to discuss with the GP and if I get nowhere with her investigate other avenues like you did.

I'm just so exhausted with feeling exhausted and struggling through daily life, very similar symptoms to yourself, hoping to get some answers x

[B12life in reply to Balloonbbb]

low vit d can kick your ass too and make you insanely tired so the combination of low b12 and vit d can be bad.

have you had your gallbladder out? if so, you will need a much higher level of vit d to stay normal. for me that is min 5K IU per day and in the winter time I do 10K per day.

It takes about a month or two to get the vitamin D up to norm.

Unlike b12, you can overdose on Vit D; so I recommend doing a high dose but getting tested after 3 months. hopefully when you were low your doc did this for you already. but if not, get on 5K IU per day. Do that for 2 months and then go get tested.

I was so low after I had my gallbladder out that i had to take 100K units per week for 3 months, but that was under the watch of a doctor. That got me feeling so much better and now I just take the dose I mentioned earlier. For people with a gallbladder, I recommend 5K IU in the winter, and 1KIU in the summer. Get tested periodically and see what dose works for you. I like to stay above middle of the range but not too high.

I still recommend doing the injections every other day or daily until you start feeling better.

Also, for b12 deficiency, it takes years to deplete your b12 stores in your liver, thus it takes a dang long time to repair the damage done over that time and to restore the store level. So it will be a gradual process. I know injecting isn't fun but I finally got used to it and am so happy. Thus why , despite my crazy work schedule, I find time to comment in these forums in hopes to help others who are in the clouds of initial part of the journey trying to determine what to do like we all were.

Also, be good to yourself and REALLY REALLY try to limit what you do. I had a career so I had to slow down there (without saying anything) and then really let all my normal things in life go until I could get better.

Get those b12 injections started so you can start that slow but sure journey to getting better.