I saw my GP today and learned that I am Vitamin D deficient with a reading of 25 versus a suggested range of 80-150. Has anyone else had this problem and if so what effect did it have on you?
He has put me on a course of high dose vitamin D with a review in 12 weeks time, but the interesting part from my perspective is that Vitamin D deficiency can lead to osteomalacia (the adult version of rickets), the symptoms of which the Versus Arthritis website describes as (extract):
Pain felt in the bones
: felt most often in the legs, groin, upper thighs and knees, and sometimes in the feet when you stand, walk or run. Sitting or lying down to rest can often ease the pain.
muscle weakness
: Muscles may become weak or feel stiff. The weakness tends to affect the thighs and the muscles in the shoulders .........
Well that fits pretty well with my situation over the past few months, which makes me wonder if I have fallen into the trap of blaming ET for every malady rather than seeking a wider perspective. I really hope that it is caused by a vitamin deficiency as it is much easier to remedy. Fingers crossed and I will update you with progress at the end of the 3 month review period.
All the best
John
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Evening, yes last year my vitamin d levels went down to 7. I was seen by immunology consultant who was shocked I was still able to walk around. I was put on course of vitamin d for 12 weeks. Now I take vitamin d every day 2 a day. I have my levels checked regular now. I was told take 1 a day in summer and 2 a day from autumn
Hi John, my memory was bad, gums weren't so good. Tiredness, but I was pushing myself, friends kept saying I looked awful, but when this all happened my dad was in the last stages of prostate cancer. I switched myself off about myself and concentrated on my dad, who lived in Worthing and I live in Worcestershire. It wasn't until he passed and I then dropped
I had a similar reading when I persuaded a GP to test me for vit D deficiency several months ago. I was put on a short daily course then instructed to take a vit D capsule each month. I was very hopeful that I would notice an improvement in symptoms such as fatigue, but I'm sorry not to be able to report any improvement with that. I am glad to be taking the vit D though as I can see that it is good to have that one right!
Hi peter, regarding vitamin D deficiency,i must agree and say it as made no difference whatsoever to the one bugbear that i do believe totally is down to the condition we have. At the age of 2 i suffered with ricketts and as my mum told me had the 'bow-leg' effect. Lukily i suffered no long term effects. I have taken 1vit d capsule for the last year due to low levels of vit d and can definitely say it as made no difference to the 'bugbear' of the pain in the thigh bones the only thing i have never really got a hold on when it starts. Have taken various painkillers including gapapentin and zapain,both with little effect. A case of grin & bear it i suppose. Atb,tina.🤗
I don't have a vitamin D deficiency but I work with many men who do. As an administrator and trustee of a male health forum (for hypogonadal men) it seems a good proportion of males do suffer from quite low levels of vitamin D3 otherwise known as the "sunshine vitamin". Practically all of our vitamin D3 is synthesised in the body via sunlight and this why more people tend to suffer in higher latitude countries; we tend to get less sunshine here than needed, especially during autumn and winter months.
Vitamin D3 is one of the few nutrients that should be supplemented because very little can be supplied through our diets. As you are now aware, long-term deficiency of vitamin D3 can be a risk factor for bone strength and density. Osteopenia is the weakening of bones that leads to the more serious brittle bones of osteoporosis. Thankfully, osteopenia can be reversed over time if vitamin D, calcium, magnesium levels are at healthful levels. I would usually advise vitamin K to the mix also, but I suggest MPN sufferers steer clear of supplementing this because it increases clotting factor.
I've been prescribed Vitamin D, but mine isn't anything to do with the PRV. I have Hyperparathyroidism... One of my Parathyroid glands (we have four) is making too much Calcium and PTH. It was picked up during a FBC earlier this year - and I was wondering why I wasn't feeling any better after venesection and my bones were hurting really badly. Thankfully the rogue parathyroid adenoma is being removed next Wednesday. I'm not looking forward to having an operation but at least it is curable and apparently I'll feel a lot better straight after the op and within 2 months 100% better - well, make that 50% better as I'll still have the MPN to contend with.
How interesting to hear of your experience. Before my PV diagnosis 2 months ago I suffered from ever increasing back pain, brain fog and raging insomnia. My GP found very low Vit D levels and prescribed high dose supplements. I’m happy to say the insomnia is much better and the back pain has improved. I don’t know if the improvement is from the HU or the Vit D, as I started both simultaneously.
My Hematologist recently told me pain isn’t generally a symptom of PV, which belies everything I’ve heard/read about it.
I remember when I was diagnosed a year ago my hematologist advised me to take VitD every day, especially with being in the North of Scotland (sun deficient and we are not allowed to be in it anyway being on Hydroxycarbamide) but I only recently discovered I was not taking as much as others seem to have been advised to take, so I upped mine to 3 capsules a day. I have my hospital appointment next week and intend asking how much we are meant to take.
I'll be interested to hear what is said after your 3 months.
FYI my initial dosage is 2x 20,000 unit tablets per week for 7 weeks and then 1000 per day for a further 5 weeks. I think it is likely that I will need to maintain supplements and monitor progress for some time after that.
I’m currently taking prescribed high dose vitamin d. I went to the GP because I was getting recurring colds/coughs, and was wondering if my immune system was compromised in some way. It was found that my vitamin d levels were quite low. Like yourself, I have to be reviewed in three months.
I don’t suffer from bone pain but I do have intermittent wear and tear type joint pain. It will be interesting to note if that improves.
Hi. My sons vit d level was 22 last year, he felt so much better for the high loading dose he was given. He has taken over the counter high strength vit d all summer & works mostly outdoors yet his level was only 84 last week. He's waiting to see Gp for more info.
I was investigated for overactive thyroid in 2013, the endocrinologist told me I am low on VitD and advised me to take 800iu of VitD3 daily. I did this and I noticed straightaway that my knees felt better. Since then I have upped the dose to 5000iu daily. The dietician at Guys told me that the NHS recommendation now is 4000iu daily. I get very little of joint, bone or muscle pain and I do my yoga routine several times a week and go running every day, trampolining once a week. I am ET JAK2+ and 62 years old.
I also visiting a private doctor who told me to take folate in methylated form. I take Methyl B Complex by Biocare every day.
I was recently prescribed Vit D due to deficiency. Like others it doesn't appear to have had an effect on the bone pain in my legs (ET) however the restless ache in the muscles in my legs seems to have improved a little. I did also begin taking magnesium a the same time so I have been thinking that probably helps too on that front. Hopefully a little more sunshine is on the way as the spring weather here in west Australia has been very cool so far. There are a lot of people diagnosed with Vit D deficiency here, mainly in later life as the benefits of sunshine need to be weighed against the skin cancer risk. However blue skies certainly improve the mood! Best Wishes, Merry
I found out from my consultant on Tuesday that the one capsule of 2000iu was not enough, told me to take 10,000iu so, 5 a day it is until I need a new supply and will source 10,000iu capsules which he told me are sold in Tesco of all places!
Hi Mica, I think either you or your consultant has added an extra zero 😉The Tesco high strength Vitamin D tablets are 25 micrograms or 1000 iu, which i had been told by my doc was the recommended level once the initial deficit has been corrected (so I'm my case I am on 40,000 iu per week for 7 weeks to get back to accepted levels and then 1000 iu per day after that).
It's so confusing - I don't know how our bodies manage to figure it out!!
Haha! John, I am now lost! Looks like I need to find out, don't imagine you can OD on VitD but I still feel a little resentful about having to take all this stuff but needs must, so I'll get over it and on that note I'm off to put the kettle on!
I know just how you feel! I found an article in Scientific American (scientificamerican.com/article/recommended-daily-vitamin/) on recommend vitamin D intake, which has a section headed "too much of a good thing" which warns against getting excessive vitamin D via supplements.... which hurts the heart and kidneys. The max limit they identified is 4000iu, but they say that should not be the goal as they don't see any benefit in exceeding the recommended intake of 600-800iu.
So I'm going to stick with the 1000iu tablets once I am out of the super-boost stage (cus it's easier).
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Me too! Hi John,
Vitamin D and MPN
Unsure whether I have a new Vitamin D deficiency, but seriously thinking that I do...
Vitamin B12 deficiency 
Vitamin D
