I am Jak 2 ET and taking 1000mg hydroxycarbamide daily and 75mg aspirin. I saw my consultant today and he said my vitamin B12 levels were extremely low so I have to have B12 injections every other day for two weeks then one a week for four weeks. I'll be doing another blood test then to see if it's improved. My platelets are now down to 475 so heading in the right direction. Just wondering if anyone else is in a similar position.
Viramin B12 deficiency: I am Jak 2 ET and taking... - MPN Voice
Viramin B12 deficiency
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Lilbert
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I am also Vit B deficient, likely due to long-term use of Nexium to treat GERD. A daily oral supplement was sufficient to restore normal levels. It is a good thing that the Vit B deficiency was detected as this can have very serious health impact, including neurological issues.
Regards Hunter. I wish you well.
how did you know your b12 was low? Did you ask to be tested?
No. It was when I had my blood test before seeing my consultant that it was picked up.
The Vit B/folate deficiency was diagnosed by my Integrative Medicine doctor who did a comprehensive nutritional assessment. I was also deficient in magnesium and Vit D. The magnesium and Vit B deficiencies are likely related to long term use of Nexium for GERD. The Vit D deficiency is likely related to another condition, Neurofibromatosis Type 1.
As others have mentioned, many doctors receive minimal training in nutrition. Integrative or Functional medicine doctors work in an area of medicine with much greater emphasis on nutrition and how it affects the body. This more holistic approach to medicine can be very helpful when managing health conditions like MPNs.
Thanks, I’ve been on nexium long term myself for GERDS
Suggest doing a comprehensive nutritional evaluation as PPIs can compromise the body's ability to metabolize multiple nutrients. Nexium is notorious for magnesium deficiency.
Not long ago I was diagnosed with SIBO and apparently long term use of PPI may have contributed. I guess on a good note I am on 400 mg of magnesium for migraines ( apparently can be good to prevent migraines)??
PPIs are great for reducing GERD symptoms but do have potential adverse effects. Glad you are on top of the Mg issue. Mg deficiency caused painful leg cramps at night for me. Our bodies realyl do need the right balance of nutrients.
Do you pay for some testing done by the Integrative Medicine doctor?
The labs are paid by insurance. The doc is private pay.
Hi! I have ET (MPL) and have also developed a B12 deficiency, not low enough for injections though. I felt incredibly tired with muscle weakness and a numb toe! However, I now take a daily supplement and those symptoms have improved greatly. Wishing you the same after a few doses- it may take a bit of time but eventually you will feel the benefit.
Hello Maurabawn. Strangely, I have had no symptoms apart from fatigue which I put down to the ET. Hopefully these injections will sort it out. I am pleased that the supplements have helped you. Best wishes to you.
Hi Maurabawn. Interesting to hear you take a daily supplement. When bloodiest showed that iron deficiency low and I checked with my Consultant as to whether I should take an iron supplement, he advised against this. I’m ET CALR+
Hi Gilded. Even though my iron level was ok, my B12 was low, hence being prescribed the B12 supplement. I know that Iron, Folate, B12 and Haemoglobin are all related but have no idea how!!
hi there how long did it take for the tablets to work , also what was the doesage? Thanks
Hi! My dose is 3 tablets once a day- Cyanocobalamin 50 mg. It took about 4 weeks for me to feel a noticeable effect. I’ve also increased my red meat intake to at least once a week and have increased my dairy by having porridge made with skimmed or semi skimmed milk at least twice a week. I am lactose intolerant. They think my B12 deficiency is diet related. Good luck and hope you feel the benefits soon.
I have MF and also take vit B 12. Six weeks of injections and now 1 per month. I ask to be shown how to do it, to not be tied to my medical centre and now do it myself. Make me feel a little better.
Hello Artydutch. I was wondering if I would be able to do the injections myself, especially as we have holidays booked. Did you find them easy to administer? Best wishes to you.
Hi Lilbert! If you mean Pegasys interferon jabs , I confirm they are dead easy to self -administer with no associated pain. When first diagnosed, a nurse at the Consultant’s hospital demonstrated to me how to do it. I always read the instructions before I attempt a jab even though I’m totally familiar with the procedure. Saves having to pitch up at GP to see the nurse.
yes. They are intramuscular, so a bit of pain, but that would be the same whoever does it. The nurse at the GP practise showed me and then gave me the various needles etc. The hardest things is breaking the glass vial, as not managed to do this without having sharp edges.
I just wanted to be free of appointment. Just ask for a letter if you need to take needles through customs. Good luck.
Hi,
What prompted the B12 blood test? That's not a test that is routinely done, I believe?
I really don't know. I was unaware that I was being tested for it. I just was given the blood form with about 6 different tests to be done and that was one of them. I've never had any symptoms except for mouth ulcers which I presumed was a side effect of the hydroxycarbamide.
I see you are in the Uk, so you must have very low B12 to have been picked up. The protocol that has been suggested to you doesn’t follow NICE guidelines, especially if you have any neurological symptoms.
perniciousanemia.org/symptoms/
If that is the case, you should have injections every other day until your neuro symptoms go away or stop improving. ( this may take up to a year or 2, depending on how long you’re been deficient) Uk drs are notoriously bad at treating B12 deficiency. The Pernicious Anemia Society is a great source of info . Pernicious anaemia and B12 deficiency have the same symptoms. There are several causes of deficiency so I hope your gp has tried to find out why you are B12 deficient?? ( diet, drug interactions , stomach surgery, exposure to anaesthesia , PA)
If your gp suggests retesting your B12 levels after giving injections, then this just shows they haven’t got a clue and you’ll need to do your own research.
Frequently, low folate and iron exists with b12 deficiency and these also need to be addressed. Also thyroid issues can be linked. Hopefully your gp also tested these. I highly recommend you get a printed copy of all your blood test results with the ref. ranges. Bear in mind that being in range is not necessarily ‘optimal’ for good health.
There is also a B12 deficiency group on health unlocked where you can also ask questions.
Really recommend this book, “could it be B12 ? “ by Sally Pacholok. After reading this, you’ll realise how little drs know about this topic.
I checked with my Daughter in law who qualified about 6 yrs ago as to how much training they get on vitamins and minerals. Half a day! 😞
good luck.
I have personally been down this route and basically had to sort myself out.
By fluke, my orthopedic specialist had an interest in Vitamin B12 and when he took my medical history he explained that the lab reference were way out and under diagnose B 12. My father had pernicious anemia annd he thought I had too, from my symptoms history, pre MF diagnosos. I also had low iron/ ferritin and low folate as well and had an iron infusion the year before. In Addition I have been on proton pump inhibitors for nearly 30 years and suffer with BAM following gallbladder surgery. For him these were all indicators. He wrote to my GP and told them not to monitor with normal B12 tests as these are inaccurate and go by symptoms. After a month or two of daily injection I felt much improved and now inject once a month and feel better for it. Of course I also deal with MF intermediate 2 and also Sarcoidosis. Both disease have a large fatigue element so super fatigued by all. I am on ruxolinitib now and bloods have dropped quite low and I hope once they stabilise that my anemia fatigue also improves. For many years I never got the rise and shine motto as I never remotely feel like that ever.
I have have heard on tv and read articles online and in the press, that the levels need to be reviewed in light of more recent science and many more need b12 supplements.
I think for those who suffer severe fatigue and an MPN, it is worth investigating B12 with a specialist, as this may improve symptoms for MPN patients.
Thank you for the information. I'm finding everything a bit overwhelming at the moment as I have had no symptoms. This forum has been a great help and I am so grateful for all the input from all of you.
It important to take folate supplements and never the folic acid it actually docks on to the folate receptors on our cells and blocks absorption.
I try to keep all my nutrients well balanced and take only high quality natural vitamins. Proton pump inhibitors deplete nutrients as do all drugs. It’s good to check in internet which nutrients need to be checked when in meds.
PPIs have been associated with an increased risk of vitamin and mineral deficiencies impacting vitamin B12, vitamin C, calcium, iron and magnesium metabolism. there many good articles esp in the BMJ. 🙂
I've not been diagnosed with low B12, but after some reading, saw a correlation between how I felt and a low B12. I started supplementing my diet and felt much better. Hope your numbers reach a point where you can start using supplements instead.
Thank you nightshadow
Hello Lilbert!
my father had Vit B12 Deficiency dementia! He couldn’t absorbs Vit B12 due to his leaky gut, which meant he was also deficient in many nutrients as so many are. He could only get V B12 by injection. Sounds like your doctor is doing that properly! Once we started my dad on that at 84, he started slowly regaining his brain! He no longer knew I was his “daughter”, but he knew that I was the one who was always there for him. His communication skills continued to get better and better 🙂
This is such an important vitamin!!! It good to be in the upper level of the normal range 😉
All the best Anag
Hello Anag. It's good to hear that your father has responded well to the injections and I am hoping this will be the same for myself. My best wishes to you and your father.
My father passed at 88 in 2015. he had a good life at the end thankful tongue B12. His bloods were good again. His hematocrit was below 20 for many years and no doctor caught it. They were giving him BP medicine to fight his fatigue. And he received many dementia meds, which further deteriorated him!
I’m so glad they found this early on in your case. It’s important to find the cause of the B12. If the uptake is bad and the pills don’t work, the problem is in the gut. Ie. May be Leaky gut. Then away with most grains. 🫤
I am also JAK 2 ET and take Peginterferon every 19 days. I am B12 deficient and after multiple injections I now have an injection every 3 months. My doctor said I have to always have these injections for the rest of my life as the tablets won’t work on me
Yes that’s what my GP told me and I’ve never questioned it. Apparently my body doesn’t absorb the B12 so that’s why I have to have these injections
please please ask your GP to test you for a condition called haemochomatosis to rule it out…. My dad needed vitiman B12 injections for 14 years as had pernicious aenaemia… turned out he had a rare gene that did not allow iron to be distributed through the liver….. totally treatable
Thank you for the information. I will discuss it with my GP when I go for my B12 injections.
HiAlso JAK2 ET and taking 150mg aspirin. Nothing else, but functional medicine doc has put me on b12 anyway. Platelets hovering at 500+, so seeing how it goes. Monitoring and carrying on as normal. On the face if it there's nothing wrong with me! 🤣!!!
Hope all continues well for you
Hi Lilbert,
Actually, I'm quite surprised at the suggestion that you need to get the B12 as injections.
Many studies have shown that oral dosing is very often both adequate [given high enough B12 potency in the supplement-usually at least 1000 mcg daily] and more physiologically compatible- even with the use of PPI's or H2 blockers.
The only true need for injections is in patients with pernicious anemia, in which there is inadequate bodily production of or an immune reaction [with blocking antibodies] to "Intrinsic factor" because they just cannot absorb it from their intestines.
The testing for this used to be quite a PITA [called a Schilling test], but now with a test available for anti-intrinsic factor antibodies, diagnosis is much easier.
southtees.nhs.uk/services/p....
The most common cause for people to be B12 deficient in general is inadequate dietary intake. I know the SWMBO and myself were both deficient when tested, mostly due to our habit of limiting red meat consumption for health reasons. We were both put on oral supplements at 1000 mcg daily, and both moved up into the middle of the normal range on follow-up testing. She's on an H2 blocker, and I'm on a twice-daily PPI both for severe GERD. I tried getting off omeprazole by switching to Famotidine [the H2 blocker], but i had constant severe reflux symptoms on it- which I don't now.
Best,
PA
Thank you for your reply. My heamstologist told because my B12 levels were so low I needed a boost and injections were the way to go. He said tablets would not be absorbed as well as the jabs. I am not a meat eater but I eat plenty of fish and I eat eggs three times a week. My iron levels were low but this was remedied with iron tablets three times a day. My iron levels are satisfactory now. Regards and best wishes to you.
I have not read all the replies here so I do not know if anyone touched on this variation of the B12/folate situation: you can be tested for a gene mutation that may affect your absorption of B12 & Folate it is abbreviated "mthfr" Methyleneteteahydrofolate reductase. I just started taking methylated B12/folate in my multivitamin, it is not in most vitamins as methylated which is supposed to be easier to be absorbed. I am ET w/Jak2 mutation, taking 81 mg aspirin daily for 3 years now. My iron is low. Laura, U.S.A.
Thank you for the info. I will mention this to my haematologist when I next see him. Best wishes to you.
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