Vitamin D deficiency

[DaysLikeThese123]

For the past year I have felt awful: constant tingling/buzzing/sensory issues in my legs, achy, feeling sick, dizziness, including some movements issues and fatigue lately too, my gait is off and, clinical muscle weakness, muscle twitching and stiff muscles. I also have bladder issues, which are needing to go a lot at night and constipation.

I have had a clear MRI of brain and spine, every blood test under the sun - all very normal and b12 very good (actually quite high).

I have recently (finally) had vit D tested and it's 22mnol/L, which is quite low.

I am at a stage where I can't work due to fatigue, sickness and weakness. I have 2 DCs to, I am late 20s, healthy weight, used to be active, don't smoke or drink. Yet feel terrible.

Could low Vit D be the cause of all my symptoms?

Has anyone else had vit D deficient and felt awful too?

I have been prescribed 25micrograms/mcg (1000UI) to take once a day.

How long will this take to make me feel better? What are your experiences?

I would appreciate any advice. I see my Neurologist again in a few months and I would like to know if vit d problems are a major culprit in all this.

Do you get a cold wet like feeling trickling down part of your leg? I have low vitamin D and am trying to figure out if my leg pain is related. I get twinges and it 'throbs' as well as the 'wet' feeling, drives me insane!

My level was originally 27 and is now 49 after taking tablets everyday for 2 weeks and then 1 tab a month. It's 49 now and my dr wants to prescribe more tabs, as my aches and pains are still existent.

Do you get a cold wet like feeling trickling down part of your leg? I have low vitamin D and am trying to figure out if my leg pain is related. I get twinges and it 'throbs' as well as the 'wet' feeling, drives me insane!

My level was originally 27 and is now 49 after taking tablets everyday for 2 weeks and then 1 tab a month. It's 49 now and my dr wants to prescribe more tabs, as my aches and pains are still existent.

You mention calcium. Have you had your calcium levels checked?

Vit D issues and all the symptoms you mention can be related to PARAthyroid issues - the parathyroids regulate calcium in the blood.

Check the NICE guidelines for Vitamin D deficiency, which is what your GP should be following for treating a severe Vit D deficiency like you have.

cks.nice.org.uk/vitamin-d-deficiency-in-adults-treatment-and-prevention#!scenario

"For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders.
Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Go back & request the loading dose. Try and get out in the sunshine too, as your own body can make Vit D the natural way too.

What was your ferritin (iron stores) level? Often that can be rock bottom and GPs won't suggest iron supplements.

What is your diet like?

From my own experiences and a fantastic neuro as well, Im dealing with 4 neuro conditions (2 are refractory), back in 2012 on one of his screens for Vit D which he did as part of a whole work up every single appointment as we were still working out what was happening, I was started on Vit D supplementation of 10,000iu x 3 days a week and I remained taking that dosage for almost 3 years as my levels where very low - I think around 10/11

Since 2015 I have been on a daily maintenance dose of 800iu of Vit D, I also take calcium and folic acid daily and the prescription strength powder daily of magnesium. I have also been prescribed iron tablets alongside all this.

I have also had IV magnesium in the past which had several purposes to bring up my levels and to help treat and break me out of a prolonged attack of 1 of the conditions, this was done in hospital and I had 6g over 3 days (2g by iv a day, its very hard on your veins), it made absolutely no difference to me that time but the previous time I had it 2g over several hours, I went into the infusion unit slumped over being pushed in a chair, i met my friend at the door afterwards and went shopping able to actually walk properly

sadly as I am currently bedbound i cant get out in this weather

@Sparkles1992 not down my leg, but random feelings of cold water being poured on me in distinct places, in my case its misguided nerve/brain signals as a simple form

I get the cold wet feeling in my legs, also the majority of the synmptoms you describe. Especially extreme fatigue, joint pain, pulsing and throbbing. I have been diagnosed with Fibromyalgia & Chronic Fatugue Syndrome/M E. I also have B12 injections every 8 weeks & Vit D maintenance dose.

Please ask for your calcium to be checked as has already been mentioned. Vit d deficiency is often Connected to hyperPARAthyroidism and it has very similar symptoms to CFS/ME/fibro. I have just had a parathyroid gland removed as it had a benign tumour and was overproducing parathyroid hormone which causes an elevated level of calcium in your blood. Some of my symptoms were bone and muscle pain, extreme fatigue, acid reflux, constipation, increased thirst and urination, 'brain fog' , palpitations, itchy skin. There's a lot of helpful info on hyperparathyroiduk.com

theicemaiden I had one removed three years ago. No one has ever heard of it! Hope you're feeling better.

There are loads of excellent threads on here about vitamin D deficiency.
This one is well worth a read.
www.mumsnet.com/Talk/general_health/2421492-Vitimin-D-can-it-have-this-effect.

Yes thanks Best my op was 2 months ago so still early days! Hope you are fully recovered now😃

No I hadn’t heard of it either and my GP was clueless as well. I diagnosed myself with the help of dr Google 😃 Sadly it’s a very under diagnosed condition even though it affects 1 in 1,000 people and double that for post menopausal women like me! There are new NICE guidelines coning out next May which will hopefully help with better and quicker diagnosis

How long did it take you to fully recover? Xx

Yes vitamin D deficiency can cause those symptoms. I've had it and a friend was so I'll with it that he had his driving licence taken away as the extreme dizziness was thought to be a form of epilepsy. My friend and I are fine now after supplements.