Full diagnosis and vitamin B12 deficiency

[Old_Coger]

Hi just a quick update.

I did get my full confirmed diagnosis as CALR type1 ET which to be honest was a relief, that it was not PMF. I really can't fault the team at Guys and St Thomas's they are very good, and actually listen understand ant try to help at every turn.

I have been lucky so far that my platelet counts have remained stable at just over 600 so at the moment no need for any significant treatment.

My symptoms up until two and a half months ago where pretty minor, very minor tiredness, a bit of mild bone ache, the headaches which I am learning to cope with and keep mostly in the background. I was on low dose 75mg daily aspirin, but this caused significant bleeding from hemorrhoids, which thanks to the team at Guys should be dealt with in the next couple of months so I can go back on the aspirin.

However a few weeks after stopping the aspirin, I started to get significantly worse symptoms, in terms of significantly increased bone pain in all my lower body, and significantly increased fatigue.

The pain in my feet makes every step painful and at times the pain in my legs and hips has made walking hard, and has been enough to wake me up and make me moan in my sleep enough that my wife had to move into the spare room in the periods where it got bad. This has been almost constant but much like the fatigue, which has significantly impacted my normal level of activity it has fluctuated in severity over this time.

Each time when it seem to get really bad and for more than a week at a time I thought I would would ring the clinic to talk to some one, it would then reduce a bit and I thought I would leave it until my next appointment. so in the end I did not phone! Needless to say this increase in symptoms had me thinking that when I had my next tests my blood would not be stable.

I went back to the clinic last week had the normal bloods which all looked relatively stable, I discussed my significantly increased symptoms and they ran a whole heap more bloods.

All the test bar one came back normal, It appears that I have a Vitamin B12 deficiency, and they are running more test for this. The reason for this post is two fold firstly, having read about this now it is apparently quite common for MPN patients to have V B12 deficiencies and that it is possible to have a masked deficiency as well where basic testing comes back as normal but with more detailed analysis because of the way our bone marrow proliferates cells the proliferation apparently can stop the absorption of the V B12 ( not sure how this happens)

The second key thing is that a Vitamin B12 deficiency can mimic a lot of the symptoms of MPN (something I did not know) everything from pains, headaches , confusion , fatigue etc.

So if you start to get more symptoms it may be worth getting you B12 fully looked at not just a basic blood test as this may well be an underlying cause.

I will wait to see what supplements or Injections I get and an hope that I will find that they reduce the symptoms back to where they where. I will let you know in due course but its something to be aware of if you have not come across this before. I hope this may help some of you.

[MissLesley13]

Thanks for that. I also am E.T and Calr. My bone and leg pain also feels the same. It is nice sometimes when you hear people have the same ailments I will enquire about my B12 at my next appointment. I already take a multivitamin but if needed I will take another. Thank you.

[hunter5582]

It sounds like there could be a combination of things going on. It is good news that you had the Vit B deficiency diagnosed. Vit B deficiencies can cause significant issues, including impact on the brain. It is definitely something that needs to be addressed.

I was also found to have Vit B/folate, Vit D, and magnesium deficiencies. The Mg deficiency caused severe leg cramps at night. Supplements for the deficiencies have been effective. We titrated doses based on follow up testing.

I would be suspicious that part of the symptoms you are experiencing may be related to the overproduction of inflammatory cytokines. The deregulation of the JAK-STAT pathway by the CALR mutation can exacerbate various inflammatory issues. Controlling systemic inflammation can be an important part of managing a MPN.

Wishing you success moving forward.

[Hbm1]

This is very interesting. I have JAK2 E.T. which is being treated with HU, aspirin and I’m also taking Lansoprazole to counter the aspirin affects. I have suffered lots of symptoms, weight loss, tingling feet and hands, dry eyes, bone pain, dreadful fatigue…all leading to much anxiety. The treatment with hydroxycarbamide (HU) commenced last May and has successfully brought down my platelet levels from around 590 at their highest to just over 200. All good news except that most of my symptoms remained or worsened which started me doing my own research. I came up with the possibility of Vit B12 deficiency and a bout of gastritis led me to ask my GP about this. My B12 levels had been at the low end of normal which is a very grey area and my GP didnt hesitate to listen to me and there and then gave me a B12 jab.

This was in October and I’ve never looked back. It has been a total game changer if not to say life changer and the improvement was startlingly quick. I’ve now had three jabs altogether and more in depth tests. I’m still trying to figure all this out and am seeing an MPN specialist next month to see what links can be made. I would say to anyone who reads this that it can be all to easy to attribute all symptoms to the blood disorder when other things may be going on.

My GP has been very supportive for which I am truly grateful but I do think that Vitamin deficiencies don’t come up on their radar very much and if further information is needed there’s lots out there. There’s a B12 online site and a wonderful book called ‘Could it be B12?’ by Sally Pachelok which is worth delving into. I read that hydroxycarbamide can mask the symptoms of B12 deficiency and also Lansoprazole (a proton pump inhibitor) interferes with the body’s ability to absorb Vit B12. It’s therefore important to note that B12 supplements won’t work if your body is affected by certain medications.

I strongly believe there is a link (in my case at least) between all the factors I’ve mentioned. Since my B12 treatment I no longer suffer the dreadful fatigue, I have actually put back some of my lost weight, my mental attitude is what I would call back to normal, tingling feet and dry eyes are still an issue but not nearly as bad as they were. In summary, thanks to B12 I have my life back. I hope this account will be of help to others.

[MPNpatient123]

Hi , I have Pv jak 2 postive . I was diagnosed with functional b12 deficiency two years ago after suffering a range of symptoms including severe nerve damage in my legs and constant pins and needles, tiredness and forgetfulness and I would constantly drop things etc and since then been on monthly b12 injections . My b12 blood test appeared normal however they did a test called methylmalonic acid (MMA) and this came back showing all my tissues and organs etc were significantly depleted in b12. My b12 was not transferring to my cells properly or something like that they explained.

Unfortunately some of the nerve damage is permanent now due to this.

They said this is a problem in MPNs of the b12 tests can appear normal and then only shows up on the MMA. Around 6 months after being on b12 replacement my other symptoms did resolve .

If you have the same b12 issues they should start you on a high loading dose and then you should be prescribed b12 frequently. I have been told I will require b12 replacement injections lifelong now. Some people only need it every 3 months etc but I have to have mine monthly as it seems to deplete rapidly after that.

I also had low folate and D12 so I had to have replacements of these . I was checked by gastroenterology and they confirmed it was nothing to do with absorption issues so my neurologist and haematologist confirmed they believe I have issues with these vitamins being transferred etc .

Good luck

[Amethist]

I’m very pleased you have been tested for B12. There is an excellent B12 group on health unlocked and you will learn a lot more from them.

Sadly the nhs treatment for B12 deficiency is , to put it politely, crap. The NICE guidelines did change recently, are better than they were, but still room for improvement. But even then most drs don’t follow them. If you want to get well, you will have to do your own research and sort out you own long term treatment.

You will know they are dangerously clueless and not following NICE guidelines when they give :

1) pills instead of injections , or worse still tell you to buy your own

2) only give you 6 injections, then want to test your blood levels

3) they base their follow on treatments on the known useless blood test after they have given you pills or a few injections.

Please get yourself a copy of Sally Pacholoks book “ Could it be B12?”

You will then know infinitely more than anyone in the health profession, who are lucky if they get ½ day training on all vitamins in their entire career.

Hope they also tested your folate, iron panel, homocysteine, mma, vit D and thyroid? If not they haven’t done their job properly.

What’s your diet like? Are you vegan vegetarian?

Are any of your medications known to deplete B12: eg: antacids. Check out all your meds to see if they deplete B12.

Do you eat bread/ grains that may have been treated with glyphosate? This chelates the metals and depletes us of essential minerals including cobalt, necessary for B12.

You will have to be proactive in your own recovery from B12 deficiency. Don’t leave it up to the Drs .

Good luck, from a fellow B12 deficiency sufferer who had to find it all out for themselves .

Once you’ve read Sallys book you’ll be able to help so many people around you. It’s a very common deficiency.

[mark382]

I've had PV for 16 years. Venesection and 75mg aspirin. They checked my B12 and found I was low. Started lose dose B12 for 6 months and then stop. Level back to normal. Checked a month later, and even though still in limits B12 had dropped quite a bit and in another month would be out of limits. So now on low dose B12 tablets, permanently.

[Tipsy2023]

Thank you for this post B12 is something that is so important but so often missed as a factor in a multitude of symptoms.. the more knowledge the better .L