Thanks Jan No I don’t have b12 injections . I prob shouldn’t be on this forum as haven’t been diagnosed with PA but I thought someone might have come across raised b12 xx
You are very welcome on this forum, no matter what!
Normally B12 is stored in your liver so if you have high B12 with no good reason for it (as in your case) then it can mean your liver isn't working properly or the mechanisms which take it from your blood or use it in making new cells are damaged.
I'm afraid it isn't a good sign and does need looking into immediately - especially as you feel so poorly.
I (think I 🙄) am surprised your Dr didn't pick up on it and send you for hospital checks straight away. Please go back to them today and ask for all possible reasons for it to be ruled out promptly.
I hope everything goes well and they are able to help you ASAP so you feel better soon.
Please come back to us with updates if you want to - everyone is welcome!
Denise thank you soo much . I have a private gp referral to haematology so I’ll get on line today and find one and make appointment.
I was admitted to hospital with autoimmune hepatitis 2 years ago by a gp but hospital sent me home as it was only my liver function that was high not any other bloods 😖.
Ended up getting emergency steriod injection privately and being put on course of steroids as head was swelling (don’t ask could right book ) ! Fast forward 2 years and I’ve been diagnosed with connective tissue disease but no one mentions liver or b12 and if I do it gets dismissed as being a positive thing that it’s high .
Raised B12 when not supplementing B12 can be a sign of various health conditions.
I would expect your GP to order liver and kidney function tests and to do some tests looking at the cells in your blood.
Might be worth looking at the foods you are eating as some foods are fortified with B12. If you've been eating a lot of foods fortified with B12 then maybe that could raise serum B12 levels. For example some energy drinks have high levels of B12.
Have you also got results for folate, ferritin or other iron tests and full blood count?
It is possible to have the symptoms of B12 deficiency with a raised serum (total) B12 level.
If you have symptoms that match those of B12 deficiency, you might want to look up "Functional B12 deficiency", this is where there is plenty of b12 in the blood but it's not getting to where it's needed in the cells so the patient develops deficiency symptoms.
Thank you soo much this is all so helpful ! No I don’t have any energy drinks or eat foods fortified with b12
My bloods are a nightmare in the sense that they vary so much . I’ll get a text from surgery to say they need repeating which I do then they’ll go back to “normal “ range
One general theme though is low lymphocytes and the raised b12.
Thank you for giving me the push I need to book haematologist appointment x
With regards to the clinical relevance of high B12 in the absence of supplementation, I found the information in this article useful : academic.oup.com/qjmed/arti....
Although a high B12 blood level is not dangerous in and of itself, if it's not caused by supplementation it could point to a serious underlying problem, and certainly warrants further investigation.
sadly not 😔. The haematologist did check I was absorbing b12 via mma test and extrinsic factor and they were negative . scratched his head and said he didn’t know . Anaesthetist not happy about that though so has written back . I am suspicious that it is high at all and maybe it’s false !
I guess it’s reassuring that you are being checked out. Although I have had high readings (total serum b 12 rather than active b12) going back a number of years my GP has never investigated them. When I mentioned the possibility that they could be indicative of more serious problems she didn’t comment. I also have under active thyroid which is usually associated with low b levels. My last active b12 result was mid range so I’m not sure if this is significant.
sadly my gp not interested I had to use a private Gp who referred me to anesthetist for Erythromelalgia and it was he who then referred to haematology.
So interesting you mention thyroid as I posted on their forum as I didn’t understand my results. If I do discover anything I will let you know .
I’m no expert but I think the active b 12 can be used by the cells in our body. The NHS test that my gp does only measures total b12. I get the active b12 measured by Medichecks home test kit.
As I understand from the BMJ, NICE guidelines, UKNEQAS, etc, your obvious neurological symptoms (regardless of meaningless test results), require that you should be getting B12 injections every other day loading doses for neurological symptoms until no further improvement…..
………..
Some links below on the correct treatment regime:
Might be helpful to print them out, if possible, and discuss the relevant points with your surgery. You may have to be quite assertive in order to get your GP to provide adequate injections, which is why many of us on the forum self inject:
.* BMJ Research Document:
bmj.com/content/349/bmj.g5226
(Summary only but GPs can access full document behind a paywall) :
It states bottom of page 4 ' under, 'How is Response to treatment assessed':“once treatment is given blood levels will inevitably increase but it is the clinical condition of the patient that is paramount:
"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."
………
* UKNEQAS B12 Treatment Alert
Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections (even if B12 is within normal limits).
……….
* Misconceptions About B12 Deficiency :B12 Deficiency:
Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and without large red blood cells - stichtingb12tekort.nl/weten.... B12 Deficiency and Intrinsic Factor - (I.F. Can Be Negative and Still be PA) stichtingb12tekort.nl/weten... …………
Very best wishes for better treatment Tiggiwoos 🤞
PS My B12 levels were always high but I also had microcytic anaemia (detailed in Sally Pacholok’s, Could it be B12 Deficiency?). I also had Amazon send Dr J Chandy’s book, “B12 Deficiency in Clinical Practice”, to my surgery and was then offered various tests.
Sorry, I’d been looking for your history and meant to post the above in reply to your later post !
My levels were really high (around 2000 - functional deficiency?) as I was already supplementing with tablets (after a long term vegetarian, close relative was found to be B12 deficient), something it’s best not to do before being tested and diagnosed…….
We also have thyroid disease in the family, which is often closely connected with PA.
Everything went downhill in 2017 after a v. bad virus and that’s when the terrible fatigue set in, tingling feet, brain fog, proprioception, etc. Decided to self treat with B12 injections e.o. day, as dealing with gaslighting medics became too stressful.
Later on (2020) Addison’s Disease was suspected, which Dr Chandy writes about in his book, chapter 7. John F. Kennedy (also with Irish /Northern European genes was discovered to have these diseases). The book is available to read chapter by chapter free on line 🤗
I now lead a relatively normal life for my age, walking as much as possible, and buy my own thyroid and B12 medication, but am careful to avoid stress or overdoing things.
I hope you find answers and treatment soon Tiggywoos 🤞🤞
gosh that’s fascinating and massive credit to you for sorting yourself out to improve your quality of life . I put my thyroid results on the forum and they commented they were low but I haven’t got thyroid antibodies so wouldn’t even know where to start with that issue . I will definitely read the chapter . Ironically 5 years ago a dermatologist was sure I had addisons but no bloods backed it up . I’ll keep searching for the magic 🪄 wand . Take care x
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Paper: elevated b12 bound to immunoglobulins masking B12 deficiency
Active b12 vs total b12
Raised levels
B12 advice please(Hypothyroidism)
Is it B12 deficiency
