B12 Deficiency and Oedema - MPN PV

[Kari1961]

Evening MPN'ers - I've had an appointment with my GP this afternoon, due to a problem with swollen feet and ankles, which has been an ongoing issue for a few months.

They are so swollen I can't get my shoes on, they feel spongy, not painful, they are just elephant's feet to look at, that don't feel like they belong to me or my legs.

Over the past few weeks, I've had numerous test - every conceivable part of me and my blood has been tested - They've tested for Thyroid, Cholesterol, Diabetes, they've double-checked Heart, Lung, Liver and Kidney function and everything has come back fine. As well as bloods, I've also had an X-ray of my lungs and an ECG - all normal. NDA

Except for Vitamin B12, which is very much lower than it should be (I didn't get the actual level). I am Vit B12 deficient, which in a way I can understand. I am Jak2+ PV and for that reason I limit the amount of meat I eat - although my diet is nowhere near Vegan - I still enjoy chicken a few times a week, drink milk and eat cheese and yoghurt.

On returning home with my Vit B12 supplement Cyanocobalamin (50mg 3 x a day) I did a bad thing, I googled Vit B12 defiance and Oedema and the result of my search said that it was rare, but does occur. I've had no other known symptom of B12 deficiency.

So, I'm wondering whether others have suffered with Oedema when first being diagnosed with Vitamin B12 Deficiency?

[socrates_8]

Hey Kari...

So sorry to learn of the troubles you're having w/ this strange swelling symptom...

I don't have PV Kari, so this might not be all that relevant. However, like most other MPNers, I too periodically suffer from some vitamin deficiency, & invariably they are the same two (2) culprits: Vit' D & B12...

I correct it by taking supplements...

Nevertheless, because of my recent history w/ TIAs (stroke), I was put on Dual-AntiPlatelet Therapy (DAPT), and I have noticed a swelling particularly in my right hand...

The Dual-Anti-Platelet Therapy (DAPT), consists of Low-Dose Aspirin & Clopidogrel (Plavix). Hence, I have just stopped taking the Plavix, & my hand has returned to normal again...

Of course, all of this could be mere coincidence, however I am more a believer of 'Cause & Effect' myself...

Not sure that any of his will aid your situation...

Anyways, very best wishes Kari... Stay safe & well...

Steve

[Kari1961 in reply to socrates_8]

Thanks Steve.

Unbelievably, after only taking one 50 mcg of B12 supplement, I woke up this morning with 'normal' looking feet, that don't feel spongy.

I thought I was imagining it, so tried on a pair of shoes I haven't been able to wear for the last 3 months, and they went on perfectly - I felt like Cinderella with B12 being my Prince.

😀

I also can't take Plavix - they tried me on it after I had a stroke. My lips and eyelids started swelling, and I also developed an itchy rash. I thankfully have no issues taking Aspirin.

Thanks again for responding, wishing you well... Kari.

[socrates_8 in reply to Kari1961]

Pleasure...

Happy to see that you can now attend the Ball after all princess...

Steve

[Lettie_WP]

I am B12 deficient as I have PA (pernicious anaemia). No amount of ingested B12 would help so I have injections every 8 weeks. I could do with them more often as I get symptomatic after week 5, but in the UK GPs don't offer it more frequently. (In fact most people of on 12 weekly injections). I too am getting swollen feet at the moment. B12 being the cause hadn't occurred to me. I might buy a B12 spray and see if that helps.

Glad your feet are back to normal.

[Kari1961 in reply to Lettie_WP]

Hi Lettie_WP . I had no idea that the two were linked either.

🙂

[Mazcd Partner MPNVoice]

Hi Kari, so happy for you Cinderella that it worked. 👠😀

[Kari1961 in reply to Mazcd]

Thanks Mazcd

🩰👸😆