Vit D deficient : Recently I asked the question is... - MPN Voice

MPN Voice

10,886 members15,201 posts

Vit D deficient

Wyebird profile image
14 Replies

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😀

Written by
Wyebird profile image
Wyebird
To view profiles and participate in discussions please or .
Read more about...
14 Replies
Ovingite profile image
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 profile image
Wyebird in reply toOvingite

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 profile image
MazcdPartnerMPNVoice

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 profile image
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 profile image
Wyebird in reply toJschwab

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

socrates_8 profile image
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 profile image
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 profile image
Wyebird in reply toFlynn2107

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 profile image
MPNBlog in reply toWyebird

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 profile image
Wyebird in reply toMPNBlog

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 profile image
Cja1956 in reply toWyebird

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 profile image
Wyebird in reply toCja1956

Yes do x

hunter5582 profile image
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 profile image
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.

Not what you're looking for?

You may also like...

Vit D update

After months of not wanting to even get out of bed it was eventually discovered my Vit D level was...
Wyebird profile image

Vit D and interferon

I wanted to put this out there since so many of us are on interferon. As a lot of you know I am...
KLCTJC profile image

Vit D and platelets

Just read an interesting item regarding vit D deficiency and platelet count. I was actually trying...
jodary profile image

Vitamin D

Does anyone at MPNVoice now the answer to this please. I have been offered the free 4 months of Vit...

Vitamin D deficiency and poor muscle function in the over-60s

Post by MPN-MATE Admin » Thu Oct 24, 2019 8:32 pm OCT. 23, 2019 by Trinity College Dublin This is...
socrates_8 profile image

Moderation team

Debinha profile image
DebinhaAdministrator
Mazcd profile image
MazcdPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.