Vit D deficient

[Wyebird]

Recently I asked the question is it possible for my ET to be worse over time? I’ve felt slowly worse not wanting to get up, Itchy scalp morning headache, low mood fatigue, breathlessness.

I’ve dragged myself around telling my body to stop feeling sorry for myself. I’ve tried to be happy.

An episode of struggling with extreme breathlessness ended up me having blood tests and seeing my GP.

Result - very low Vit D

A range of 30-50 is moderate deficiency mine is 31.

I already feel better knowing that there was a reason for all these little symptoms.

I used to take Vit d supplement but I take a multi vitamin for my eyes so when I ran out of vit D and the local shop didn’t have any I just stopped taking them. The strange thing is I made my mum and son ( a night worker ) take them lol.

I’m now on a prescribed dose for 6 weeks then a 4 week break followed by a blood test. So it’s a long haul.

Feeling happy😀

[Ovingite]

Hi there,

I can totally sympathise with you as I went through the same issues 2 years ago. The really good news is that after the 6 weeks of high dose vitamin D I felt so much better. It was almost as if someone had flipped a switch and the energy just started flowing again. I cannot explain just how big a difference it made, but I hope you have a very pleasant surprise coming your way😀

Good luck

John

ps. I now take 2000iu (50mg) per day, as per GPs instruction, to keep me well topped up. My latest reading was 78.6, which I am happy with

[Wyebird in reply to Ovingite]

Oh thanks I’ve been beating myself up. I was going to change to pegasys but nOw maybe wait for the switch to come on 🤣

[Mazcd Partner MPNVoice]

Hi Wyebird, really pleased that you know why you were feeling unwell, and I hope that you start to feel much better soon now that you have the Vit D to take. Best wishes, Maz

[Jschwab]

So happy it's just vitamin D! I have begun eating 3 cutie /clementine oranges a day and I think it helps to absorb your supplements. My platelettes have also gone down.

[Wyebird in reply to Jschwab]

Thank you, I already feel better. Knowing there was a reason for being so down.It’s official I am medically grumpy😀😀

[socrates_8]

The Vitamin D is a thing w/ us MPNers, apparently... I also take a supplement these days, and it definitely helps me too...

Best wishes

Steve

[Flynn2107]

I read a study in mice that found low vit D slowed progression of pv to myelofibrosis, high vit D caused more pv to mf. I cut my vit D supplement down as a precation.

speciality.medicaldialogues...

[Wyebird in reply to Flynn2107]

Thank you for you reply, Unfortunately I can’t open the link but I’m sure I read that very low Vit d can lead to bone damage.

[MPNBlog in reply to Wyebird]

Mmmm a good point Wyebird. My GP suggests daily levels of Vit D at the higher end for females because of the risk of osteoporosis and hip fracture. It also depends how much sun exposure you get on your skin daily. Seems there's a bit of a balancing act needed on this one. Tricky.

[Wyebird in reply to MPNBlog]

Yes I think when I go onto over the counter Vit d I will take maximum dose. I felt better 24 hours after my first weekly dose.Again this morning ( I took my second dose last night) I wanted to get out of bed 😀

[Cja1956 in reply to Wyebird]

Glad you’re feeling better. I was taking vitamin D for a while and then I stopped. You reminded me that I need to start back up again. Thanks.

[Wyebird in reply to Cja1956]

Yes do x

[hunter5582]

While ET can and does progress over time, that is not always the cause of the symptoms we experience. Sometimes we have both related and unrelated co-occurring issues. I was also found to be Vit D deficient. In my case, it was related to Neurofibromatosis Type 1. I am now taking a Vit. D supplement (3000iu/day), which has brought me into the normal range. I was also found to be significantly Vit B/Folate and moderately Magnesium deficient. I am taking supplements for those deficiencies too. I am fortunate to have an Integrative/Functional Medicine doc on my care team who pays attention to the whole body and overall health. It does make a bog difference.

I am glad to hear you figured out the Vit D deficiency. Also that you are following up to see if your levels come back into the desired range. We did have to adjust my doses as I did not have the desired response initially and needed to increase doses. It really is best to monitor nutritional status when treating deficiencies.

With the nicer weather here, your Vit D levels and energy may well increase even more as you can get outside and have reasonable exposure to natural light. Once you know how you respond to normalizing your Vit D levels you will be able to determine if your need to change your treatment plan due to reactions to other meds.

All the best to you.

[Wyebird]

Yes I remember us texting about integrated Medicine. I’m going to hold off a while sort out my Vit D and my physical ability. I’ve gone from hiking 4 miles in 1 hour to 1and 1/2 miles all Due to injury and 2 ops, it’s appalling. My legs are like jelly after a little work out . In turn I’m severely out of breath.