Vitamin D: Hi does anyone know if it safe for us... - MPN Voice

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Vitamin D

Jody00 profile image
26 Replies

Hi does anyone know if it safe for us to take vitamin D ? With out health condition thank-you Xx

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Jody00 profile image
Jody00
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26 Replies
Cookiebaker profile image
Cookiebaker

I have ET and my hematologist said I should be taking D3 ... 4-5 thousand units per day.

Mostew profile image
Mostew

Yes . I do xx

Superwoman profile image
Superwoman

I Use a Vitamin D spray daily, after I clean my teeth, gets into the system far quicker, and was reported this week to be more effective than the tablet form.

My Haematologist recommended for me to take through the winter months as we we don’t get the sun light like we do in summer. Also I believe it’s being given to Covid patients, as when they are admitted to hospital test show that they are deficient of vit d.

So yes you can take.

Jean

friendofpiglet profile image
friendofpiglet

Apparently the Scottish government are providing 4 months supply of vit D to all vulnerable people i.e. anyone advised to shield - and there is a fair chance the rest of the UK will follow suit.

Andy

Jody00 profile image
Jody00

Thank-you just wanted to make sure we can has i have ET jak2 positive just going get 4000 vitamin d3 jelly capsule be better to take i didn't hear about could be used for covid19 but my doctors ask me to get some but when I read on Google saying not to take them am like should I get some or not so a thought il ask you guys yous are the best to give advice .thank-you very muchXx

Wyebird profile image
Wyebird

I take a multivitamin every day and my heamo is aware of it. Make sure you consult yours first.

champ30 profile image
champ30 in reply toWyebird

Yes...I do too.I was told to buy the one without iron...I have an iron overload as lots of transfusions have caused this.

Wyebird profile image
Wyebird in reply tochamp30

Oh it’s a bother isn’t it. I can only take 1 iron tablet a day because I have too much ferritin but haemoglobin rarely above 102

champ30 profile image
champ30 in reply toWyebird

It's been a long time since sharing on this site and there has been so much going on for me.

Back in June was in terrific in pain....only got out of bed with the help of my husband(with difficulty). This pain had been going on for approximately 2 weeks but came to a head that morning.My gp called an ambulance and paramedics had to carry me downstairs.After being in hospital for 3 weeks and pain diagnosed with seronegative inflammatory arthritis.Crp 280 upon admission and haemaglobin varying 70-80s but no transfusion.

Managing arthritis with pregnisalone and sulfazalazine.As arthritis attacks the immune system my haemaglobin is being topped up with transfusions every 2 weeks but have only been having 1 bag of blood.However I have still been breathless and this week they relented and I had 2 bags and feel so much better.My haemaglobin has been in the 80s when topped up.

For my MF/MDS I am on lenalidomide.My haemo doctor at this stage is not sure if it's the arthritis or blood conditions driving down the haemaglobin. My CRP is at its lowest since coming out of hospital,37.

As I also suffer with Bronchiectasis (a chest condition) the doctor and specialist nurse were reluctant to give me extra blood as they considered I was breathless due to this.

I do seem to have gone on a bit but all of you understand where I'm coming from!

Wyebird profile image
Wyebird in reply tochamp30

Glad you have explained. When I read about others like yourself I really have nothing to moan about.

How is the pain now?

I’m hoping you improve soon. Take care. - hugs galore

champ30 profile image
champ30 in reply toWyebird

Thanks so much.... pain in my shoulders,arms and hands greatly improved but still keep getting in my left leg.I'm having an examination on 26th,face to face!

You also take care.

Pte82 profile image
Pte82 in reply tochamp30

champ30, in addition to vitamin D and thiamine is magnesium, K2 and boron I suggest researching for each of your health concerns. Magnesium is required to activate vitamin D and thiamine in addition to a staggering number of functions. Magnesium, together with K2 and boron, represent a group often deficient in the diet yet together are important calcium managers but independently offer unique benefits. Always consult your health care professional before using any supplement.

westonaprice.org/health-top...

pubmed.ncbi.nlm.nih.gov/231...

sciencedirect.com/science/a...

researchgate.net/publicatio...

champ30 profile image
champ30 in reply toPte82

Thanks so much....am definitely looking into these.

Lynda.

MCW22 profile image
MCW22

I'm PV Jak2 positive and have also had spinal fractures. I get calcichew on prescription which is a combination of calcium and vitamin D. I only take 1 a day instead of the prescribed 2 because taking 2 caused nausea and constipation.

Carol

YBSx profile image
YBSx

Hello

I have ET and jak2 positive

I take hydroxycarbamide and also prescribed vit D

Yvonne

linphy profile image
linphy

I have ET my hematologist told me I need to take vitamin D. I was told to double vitamin D winter time. I have been taking them 3 years

Lifam profile image
Lifam

I have been taking D3 for years and was told not to stop. I only take 1000unit once a day.

hunter5582 profile image
hunter5582

Not only is it safe, it is essential. Nutritional balance is critical to health. Many doctors completely ignore it. My Integrative/Functional Med doc did a complete nutritional evaluation. I am deficient in Vit D. magnesium, and very deficient in Vit B/Folate. With MPNs it is really important to maintain good overall health. We need give outselves the best chance we can to nt have additional problems.

mark382 profile image
mark382

I heard about Covid patients in hospital being Vitamin D deficient and that Vitamin D could lessen the effects of the virus. I asked our local pharmacist if it conflicted with any medication and the answer was no as its classes as a food supplement. I bought the 1000 ones which our pharmacist assistant said were factory or shift workers. Well due to the weather and keeping my distance I don't get out much hence the extra strength. Take care everyone.

Peter18 profile image
Peter18

Just to add to what has been said on D3: I was put on 6000 ius per day for two months in January this year, the dose then being reduced as summer came over the horizon. I have PV and ET and I made sure to lay in stocks for the autumn/winter months.

h2ogal profile image
h2ogal

I had been taking 5000 UI of Vit D3 for years but about a year after starting hydroxy my Dr. found that my D3 was way too high. I developed a lot of debilitating joint and muscle pain which went away once I reduced my dose to 2000 UI of D3.

It could just be my body's reaction....

Hope this helps.

Jody00 profile image
Jody00

Thank-you again I have decide am going to get 1000 D3 to start off with see how I get on.thankyou for all your help and advice Xxx

Jody00 profile image
Jody00

Yes I will try get into with my hemo nurse has she not working at moment cos of the covid19 she working along side of the nurses to help not in office so she not get gmails for a few or so days so hopefully a could ring my doctors up and ask if can take 1000 vitamins D has there will have my information on computer.thankyouXxx

Kiki64 profile image
Kiki64

Hi Jody00

I’ve taken vitamin D supplements for sometime. Low vitamin D levels can cause fatigue. I’m taking lots of different medications and it’s never been a problem for me. However, it’s always best to ask your Healthcare Provider , or your pharmacist if you are concerned.

Best wishes

Kiki64

Jody00 profile image
Jody00

Hi my hemo nurse has got back intouch with me threw Gmail saying yes it is fine to take vitamin d in the winter months from September to March has we don't get enough sunlight and says be a good idea.thankyou u againXx

Jody00 profile image
Jody00

Just started to take vitamin D on 400iu see how I get on with them .thankyou Xxx

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