VITAMIN D: Hi All I have been doing my... - ITP Support Assoc...

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VITAMIN D

Lynwoodley profile image
12 Replies

Hi All I have been doing my own tests now for about a year on vitamin D I go away every few weeks for a few weeks I live in the UK while in the UK my blood averages around 40 as soon as I go to a hot country (Dubai or Thailand) my bloods shoot up to about 68 - 90 and stays there until I return to the UK about 6 weeks. This has happened every time I go away which is about 7 times a year. I read on this site that someone else was taking 2000mg of vitamin D a day and it had considerably taken up her levels so maybe it’s worth a try

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Lynwoodley profile image
Lynwoodley
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12 Replies
ItsRalphy profile image
ItsRalphy

Interesting! I live in London and always suffer over the dark winter and try to take vitamins during that time. My FBC in November 2018 showed platelets down. I had two more reads during winter... also low. Then my latest test end of June had double the platelets! I’ve looked back on my results and sept-March are all low and spring/summer months are improved levels... a couple of times over 100 which is rare for me.

I do take multivitamins but it seems to be the sun that has the most benefit for me. Maybe I should be prescribed more winter sun holidays!!! After all it could boost my health. This definitely needs more research 👍😁☀️

Thanks Lynwoodley for the eye-opener!

Windflwr profile image
Windflwr

Very interesting. I have had two episodes of acute ITP. Both occurred in the winter months. I’ve read studies about vitamin D helping, but my doctors don’t believe it.

Sereno18 profile image
Sereno18

I read somewhere that among the general population, 10-40% are Vit D deficient but in ITP patients, it's 74%. Since Vit D affects your immune system among other things and since my bloodwork showed that I was vit D deficient, on my own, I started taking 2000 IU a day. My blood count was last tested at 160 (up from 21k 4-5 weeks earlier) but I can't say that it was the vitamin D that did it. My hema has no idea why it is staying up after I stopped taking dex. Dex always gets my count up but I was off it for weeks and my count was 146, then 160k. My doc and I are clueless. I'm not in the medical profession so don't rely on me. I was just trying to balance and re-balance my body - so levothyroxine because we found out that I was hypothyroid, plus the vit D and air purifiers to remove toxins from my environment plus dental work to get any infection out of my mouth. I am trying to make sure that my immune system does not get aggravated. I have no clue and no answers but I am feeling better and can work a normal schedule now, which is 10-12 hours/day. Last year, between the IPT, pred and my other conditions I didn't know about, i was sleeping basically every day for 2-3 hours at a time and when I was awake, I was moving in slow motion. Twelve months later and it's totally different. Every time my blood work is normal, it's a blessing. Of course, I could be down to 21k tomorrow.... check with your doctors and expand your horizons to make yourself as healthy as you can be.

Kyriak51 profile image
Kyriak51 in reply to Sereno18

If you had vitamin D deficiency, your MD would have ordered 50,000 units once a week for 6 weeks and then had your level rechecked. Two thousand units a day is not sufficient to reverse a vitamin D deficiency. Have a good day:) Georgia

Sereno18 profile image
Sereno18 in reply to Kyriak51

I don't think you can say that. Everyone's vitamin D levels are different - some are just insufficient and some are deficient. I don't think we can say that 50000 IU is the only way to treat a vit D insufficiency (as opposed to deficiency). And there can be toxicity issues with too much Vitamin D. My endocrinologist found the vitamin D insufficiency (my request) and I started the supplement on my own. I plan to re-test my bloodwork to see if the level of supplement is sufficient. It is already starting to have an effect on my serum albumin (I think) level in a positive way. For some people, a more modest supplementation may be effective. But I am not a doctor so everyone should be guided by their docs' advice. .As we know, ITP has different causes and effects in patients and we all react differently to available treatments. So, I don't think there's a black-and-white treatment plan.

heather1966 profile image
heather1966 in reply to Kyriak51

I agree I started this thread and in my original post I stated that l started with 25000iu daily for 6 weeks I now maintain at 2000 iu daily I truly believe this works. If you read other peoples comments their counts go up when they travel to sunny shots on holiday, I believe that it's the extra sun (vitD)

sharroN42 profile image
sharroN42

Wow! Thanks for the information.

ssbanu profile image
ssbanu

Thnx everyone!! I do believe as a physician that vit D has a very crucial role on blood cell production especially platelet. The situation is aggravated if vit D deficiency is associated with viral infections notably Dengue, hepatitis C, flue viruses etc.

LifeafterITP profile image
LifeafterITP

I have a list of all my blood test results with dates for the last 5 years. I live in the north of Scotland and you would be correct to assume that during the winter months I do not get much sunshine and my body will not be producing much vitamin D. I have also checked which foods contain vitamin D and I should probably be eating more of them especially over the winter months.

So have I been vitamin D deficient over the winter months ? . Do my platelet counts show a drop during winter. The answer is no, looking at my last 5 years platelet counts I have high and low counts during the summer and winter months.

It’s an interesting subject however and I should try and get more vitamin D over the winter.

Looking at the recommended dose for vitamin D supplements

The NHS website gives the following advice.

Taking too many vitamin D supplements over a long period of time can cause too much calcium to build up in the body (hypercalcaemia). This can weaken the bones and damage the kidneys and the heart.

If you choose to take vitamin D supplements, 10 micrograms a day will be enough for most people.

Don't take more than 100 micrograms of vitamin D a day as it could be harmful.

Lynwoodley profile image
Lynwoodley

How Much Vitamin D Should You Take?

How much vitamin D you need depends on many factors. These include age, race, latitude, season, sun exposure, clothing and more.

Recommendations from the US Institute of Medicine suggest that an average daily intake of 400–800 IU, or 10–20 micrograms, is adequate for 97.5% of individuals (21Trusted Source, 22Trusted Source).

However, some studies have shown that the daily intake needs to be higher than that if you aren't being exposed to sun.

Depending on who you ask, blood levels above 20 ng/ml or 30 ng/ml are considered as "sufficient." One study of healthy adults showed that a daily intake of 1120–1680 IU was needed to maintain sufficient blood levels (23Trusted Source).

In the same study, individuals who were vitamin D deficient needed 5000 IU to reach blood levels above 30 ng/ml.

Studies in postmenopausal women with vitamin D levels below 20 ng/ml found that ingesting 800–2000 IU raised blood levels above 20 ng/ml. However, higher doses were needed to reach 30 ng/ml (24Trusted Source, 25Trusted Source).

Overweight or obese individuals may also need higher amounts of vitamin D (26Trusted Source, 27Trusted Source).

All things considered, a daily vitamin D intake of 1000–4000 IU, or 25–100 micrograms, should be enough to ensure optimal blood levels in most people.

4000 IU is the safe upper limit according to the Institute of Medicine (IOM). Make sure not to take more than that without consulting with a health professional.

Kyriak51 profile image
Kyriak51

What’s your vitamin D level? You do know that one can overdose on Vitamin D right? When was your last vitamin D level done? Do you think vitamin D increases platelet production? How long have you had ITP, what treatment regime are you on? , what’s your platelet count baseline? Georgia:)

heather1966 profile image
heather1966

Hi I would like an update ,are you still taking vitamin D and what are your numbers . PS I started this vitamin D thread. 5 years now my platelet count is holding at 80

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