b12 tablets

[Badger1]

hi I’ve Pv and recently been given b12 tablets I thought b12 helped make red blood cells confusing or what ??????? I’d rather ask here than doctors 🤫😳

[PupsBestFriends]

Hi Badger1,

I have PV and was prescribed B12 by my Primary Care Physician for the purpose of lowering my elevated homocysteine levels. The supplement I was prescribed also contained B6, Folate, and Trimethylglycine (aka Betaine Anhydrous) for the same intent. I was prescribed B12 daily amount of 6.7mg (258,333% DV) in the form of Methylcobalamin.

Since my HCT was already elevated at that time and only treated with phlebotomy, I too was concerned that the additional B12 might increase RBCs. Some medical papers have indicated this could occur with PV if there is a B12 deficiency and it is corrected.

I asked my PCP about this concern and was told that the dangers of B12 deficiency or high homocysteine were serious enough to warrant the supplement, and he would continue to monitor HCT. Before starting supplementation I also consulted my MPN specialist, who agreed to allow and would also monitor HCT.

It's interesting to note that symptoms of high homocysteine or B12 deficiency can be similar, and include shortness of breath, dizziness, weakness, fatigue and more. All of these symptoms can also be caused by PV itself. I have experienced all of these since shortly after my PV diagnosis, and the B12 supplementation did not correct this nor did it seem to affect my HCT. I have since started Besremi and my blood counts have reached CHR, but my symptoms remain.

Since every patient's situation is unique, I would recommend consulting an MPN specialist before starting B12 or any supplementation. Did your physician provide a specific reason for ordering the additional B12?

[ainslie in reply to PupsBestFriends]

When you list the symptoms of high homocysteine and B12 deficiency, do you mean those same symptoms can also be caused by high homocysteine it’s, I would be a bit sceptical about that , are there symptoms of high homocysteine?, perhaps but I haven’t seen that before and I’m perhaps also sceptical that they are the same symptoms of B12 deficiency, however open mind and always interested in new facts if you know them

[PupsBestFriends in reply to ainslie]

Ainslie, your correct that high homocysteine itself does not cause symptoms. Thank you for pointing out my inaccuracy. What I should have said is that most other causes of high homocysteine also have the same symptoms as B12 deficiency, such as low folate or B6, or heart disease.

[Anag in reply to PupsBestFriends]

my.clevelandclinic.org/heal...

High homocysteine does cause systems. I found this is many websites, because I always cross check everything to be sure. The Cleveland clinic above is a very respectable Association and I trust their website. They also have one of the best orthomolecular or functional medicine training programs worldwide. I do have high homocysteine levels.

According to conventional medicine homocysteine, up to 12 is okay, according to all the functional and alternative doctors, anything about 7 is NOT okay. I had a level of 12 just a month ago and felt horrible. Pins and needles in my hands and my feet pain dizziness, etc. I took some natural drops to help my heart and the flexibility of my heart, valves and valves in my legs, along with a great vitamin B complex all organic vitamins, and nothing chemical. Also methylated vitamins are better in comparison to the others. they work better and you need less. Within a month, my symptoms have gone away and all the visits to the Neurologist, orthopaedic. Physical medicine doctor, x-rays, nerve measurements were all practically for nothing, except the nerve measurements did find a weakness in current speed. Everything is fine now, without any other therapy. Some good news is that for the first time in 10 years, I was able to reduce the strength of my compression stockings from 140 to 70 and my legs feel so much better! So to my thankful thumbs! 😃

[hunter5582]

PupsBestFriends did a nice job summarizing the issue with Vit B supplementation. Vit B is needed to make RBCs. Vit B deficiency can cause a type of anemia. In addition, Vit B deficiency can cause a number of significant problems, including neurological issues. The broad answer to the question is that Vit B deficiency is such a significant risk factor that supplementation is usually indicated even when you have PV. The benefits outweigh the risks. By all means continue to monitor the erythrocytosis, but know that correcting the Vit B is very important to achieve.

[Trocken]

Have you been given B12 tablets because your B12 levels have dropped? if this is the case then your supplementing for a loss and therefore its important to get your B12 into normal levels. As someone who was extremely depleated, reaching dangerously low levels I ended up with neurological symptoms was initially put on tablets when I should have been given the injections, this was corrected when it was flagged!

[Amethist]

You have had some great answers already. One question you should be asking is why are you B12 deficient in the first place? It could be one of a number of things, ( eg: diet, pernicious anemia- which is an inability to make intrinsic factor which enables you to absorb B12), exposure to glyphosate, parasites, gut issues … some which can be rectified and some that will require ongoing supplementation for ever.

As Hunter rightly pointed out, B12 deficiency can also cause neurological issues as it is required for the keeping the myelin sheath around your nerves intact and functioning. B12 deficiency can also mimic lots of other conditions such as Parkinson’s, MS, dementia, paralysis, numbness, eye sight problems, mild depression through to full blown psychosis to name just a few. Early treatment is essential otherwise symptoms can become permanent.

I highly recommend the book “Could it be B12 deficiency”, by Sally Pacholok.

Many docs rely too heavily on blood tests, which can be misleading. NICE guidelines state clearly the clinical picture is more relevant than any blood test. After taking supplements you should not be retested. ( unless you have stopped B12 supplements for many weeks/months) If the Docs want to do this, you know straight away they don’t understand B12 at all.

I think many of us on this site have had B12 deficiency. It was my multiple B12 symptoms that got me to have a blood test in the first place and then discovered I had ET. Once I had corrected my B12 deficiency ( myself) all my symptoms went away, of which I had many. Really thought I was getting pre-senile dementia.

Best wishes 😊

[George1976]

Interesting subject. I have CALR ET for almost 10 years now and 3 years ago developed some neurologic issues mainly weakness in lower legs and a constant sick flu/pressure in my head feeling despite relatively stable platelets. B12 dipped to low normal 3 years ago but came back up within a couple months without supplementation. Neurologist still said to take B12 but when I do it makes me feel even more sick.

Any idea what might be causing that?

[nightshadow]

A small addition, the ability to absorb b12 decreases as you get older. So that may also be a factor in your doctor's actions.

[Ovidess]

I requested a B12 test to get more info for my PV diagnosis, and the doctor gave me the Methylmalonic acid lab workup, which evidently is more sensitive than the usual vit B12 test as when B12 deficiencies occur, methylmalonic acid levels increase. Mine were at 300 and the norms are evidently 87-318. Of course I worry a bit about it being at the upper level. I read that the kidneys control red blood cell production, and kidney disease could be indicated by high methylmalonic acid. What a complex web of interactions!