Vitamin d deficiency awful symptoms!

Whatwhyhowwherewho · 11/03/2021 20:29

I totally sympathise op.
I do have fibro and CFS BUT I have also suffered, at various times, vitamin D deficiency, B12 & folate deficiency, low iron and an underactive thyroid and I can honestly say, although the fibro & CFS is still always with me so I’m never 100%, when I’m deficient in any of the above I feel a million times worse.

Hopefully once your vitamin D levels are back up you will soon start feeling a little better and have less pain. Have hope op and take it day by day. I hope you feel better soon

Whatwhyhowwherewho · 11/03/2021 20:32

Tomtooktoldmeto replied on this thread & is very knowledgeable
www.mumsnet.com/Talk/am_i_being_unreasonable/4178576-To-be-slightly-sceptical-about-my-fibromyalgia-diagnosis?msgid=105282376

Original poster

HappyFox21 · 11/03/2021 20:41

Thankyou so much whatwhyhowwherewho for your reply!! I'm sorry to hear you have these conditions and likewise I can completely sympathise... Over the last 9 years I have learnt to live with chronic pain and ive also learnt to understand what it means for me and how it presents itself in my body ect and ive learnt how I need to look after myself when things flare up... but I just knew this time there was something more!! I almost feel the diagnosis is abit of a curse because often gp see that diagnosis and then will just want to pin everything on it and it can be incredibly frustrating! Thankyou again for taking the time to reply

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Yeval · 11/03/2021 21:53

Oh OP, I've been there! My symptoms weren't quite as bad as yours, but I genuinely thought I had some sort of leukaemia. It was the kind of exhaustion where you can hardly move. My skin flared up, I had shooting pains in my joints... I felt like death warmed up. My first doctor tried to fob me off by saying it was all in my head (nice bit of medical misogyny) but then I saw a different doctor who tested my vitamin D levels and I basically had no reserves. He made me come into the surgery right away and take a huge load of vitamin D pills. This was nearly 10 years ago. I've been on a vitamin D supplement ever since and the symptoms have never returned.

So yes, vitamin D deficiency is real and can make you feel like death. Get on the supplements and you will feel better!

Original poster

HappyFox21 · 12/03/2021 08:49

That must of been an awful experiences for you 😪 so frustrating when drs fob you off isn't it and when you go to such dark places that you convince yourself you must be seriously ill is just awful, I'm only 31 with 3 young children and feel like the worlds worst mum lately im taking so many naps and the pain often has me crying not the usual fun active mum I like to be... but your post gives me hope thankyou 😊 so glad to hear this made you feel well again

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Bumblesbumbles · 12/03/2021 10:19

Take a look at hyperparathyroid- you need both calcium and PSH levels checked. www.nhs.uk/conditions/hyperparathyroidism/

Original poster

HappyFox21 · 12/03/2021 10:50

@Bumblesbumbles im booked in next Thursday to have my calcium levels checked and parathyroid function checked :) my symptoms that I've been experiencing these last 6 months definatley seem to fit.

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Original poster

HappyFox21 · 12/03/2021 10:59

@Whatwhyhowwherewho

I totally sympathise op. I do have fibro and CFS BUT I have also suffered, at various times, vitamin D deficiency, B12 & folate deficiency, low iron and an underactive thyroid and I can honestly say, although the fibro & CFS is still always with me so I’m never 100%, when I’m deficient in any of the above I feel a million times worse.

Hopefully once your vitamin D levels are back up you will soon start feeling a little better and have less pain. Have hope op and take it day by day. I hope you feel better soon

Thankyou so much for your reply I did reply to you below but hadn't figured out at that point how to tag you 🤭

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Ro198 · 12/03/2021 11:05

Mine was nowhere near as bad as yours but I had extremely frequent pins and needles in my hands and legs and kept getting odd aches and pains and headaches. I’d always been fit and well until suddenly all these things happened within about 6 months. I thought there was something seriously wrong with me. I had a blood test eventually and was very low on vitamin D despite spending a lot of time outside so it never occurred to me to take a supplement. I started taking supplements and was very skeptical they would work but they did and none of the symptoms ever came back.

BiBabbles · 12/03/2021 11:48

My understanding is that there are essentially receptors for Vitamin D pretty much everywhere in the body, so a significant deficiency can cause issues pretty much everywhere too. Also, Vitamin D is a (pro)hormone and a lack of it can also cause other hormones in the body to basically not be taken up and used properly in the body.

I was misdiagnosed with premature ovarian insufficiency for 5 years, ending up pretty much every symptom of menopause going and was going through the process of getting HRT as it was getting really bad, so much pain, before a doctor going back through all my records found and showed me that none of the blood tests for premature menopause were in the right range for the diagnosis. I had in that time been repeatedly found to have low Vitamin D which had been used to explain my bone pain, but never connected to anything else, and because I'd always just had the prescription course and then told to 'just take a multivitamin with Vitamin D', it kept coming back and during that time pretty much everything else had been disregarded by other doctors as being down to POI.

I had another nutritional and inflammation blood panel and there it was again, lower than ever (single digits when they want it 70+, also borderline on folate). It seems due to various factors, I struggle to make enough Vit D. I then had a nurse practitioner walk me through that the GP's recommendations were basically bollocks (in nicer words, but the tone was there), I need to take a higher dose basically forever, preferably with full fat dairy or eggs for the Vitamin K2 and fats that helps it be used properly though there are other foods (natto is meant to be very good for this but I haven't tried it yet) and you can get supplements for both -- I've read 100 mcg of Vit K2 per 1000 IUs is currently around the recommendations, with 4x those amounts considered safe without on-going medical observation (higher than that for a long period of time, it's advised to have some monitoring, but with your GP's attitude, I thought it might be wise to consider that). The research in this area is still fairly new and I'm unsure on recommendations of magnesium alongside these.

It hasn't solved everything, but all the issues have dramatically reduced since then - I even have a normal, steady cycle again (I literally started the day after my first prescription dose) as long as I keep up with Vitamin D even when I take nothing else. I'm pretty much down to that with the occasional need for painkillers for headaches and the blissfully far rarer migraine. If I miss too many doses, I know about it.

DianaT1969 · 12/03/2021 12:04

So in all that time your GP never did a vitamin D test? That's shocking. When they finally ran one in November, why are you only hearing about the deficiency now? I would change GP clinic if I were you - and tell them why.

PerseverancePays · 12/03/2021 13:00

Never persevere with rubbish doctors, it only encourages them.
You can see any dr in your surgery, stick with the intelligent one.
Sounds like you are in the auto immune spectrum and your thyroid should have been checked straight away. My gp tested mine on a ‘hunch’ as I had an alarm clock hung around my neck to wake me up to collect children from school. I lived by that alarm clock; was seriously contemplating putting the children into care as I couldn’t stay awake and was afraid for their safety.
Thyroid was not functioning so had some help with that. However I have since developed other auto immune disorders and the internet has had more up to date information than the gp.
Giving up dairy helped me with pain and no gluten and potatoes mean I get less flare ups. Triggers are different for everyone but gluten and dairy are always top of the list.
It’s a long road, but the information is out there and good quality vitamins and supplements can be ordered online easily.
It’s not in your head, fibromyalgia is an umbrella term for ‘don’t know, don’t care.’ It’s an absolute bugger if you have it though.

Original poster

HappyFox21 · 12/03/2021 13:08

@Ro198 that sounds awful and I totally understand that feeling of thinking it must be something serious! I know my fibro deffo plays a part in my symptoms but its always been manageable whereas these last 6 months have been hell! I'm so glad you got sorted and well again thankyou for your reply I too was skeptical but the more i read the more hope I have @BiBabbles I can't believe you went through all that! Its scary isn't it when we put our trust in our doctors to help us yet things are so often missed or misdiagnosed which causes so much unnecessary suffering! I'm glad your doing so much better @DianaT1969 nope never have my vitamin d checked by gp! Only the usual things b12 calcium thyroid ect even though last time all that was checked was 2 years ago but I've recently gained access to all my previous results done via gp online and my last b12 were in borderline range as far as I can tell... vit d was only checked because I saw rheumatology in Nov and they checked it but didn't bother too write to my gp until late Feb after he had already discharged me from his care when I queried the wait time with his secutary I just got fobbed off with delays due to covid

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DianaT1969 · 12/03/2021 16:53

Gosh, I hope you start to feel better from your vitamin D supplement soon. Plus, we'll be able to get it from sunshine soon too.
By the way, if you can afford it, you can check your vitamin D level privately with BetterYou or Thriva. Around £35.

Original poster

HappyFox21 · 12/03/2021 21:19

@PerseverancePays thankyou for the advice I tried nearly every gp at my doctors until I finally spoke to a lovely lady doctor who has been very good in the past at listening to me as a person and taking what I say seriously unfortunately she's not often available but I think I will always try to deal with her where possible now... totally understand the issue regarding children I was so scared that if things didn't improve that I wouldn't be capable of independently caring for my children when my partner returns too work... he works at our local events arena so currently furloughed but will be returning in the next few months I was terrified of him not been home but now I have some hope I may be starting to feel somewhat better by then... are you managing better now??

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BeagleEagle · 12/03/2021 23:09

@HappyFox21

This is my first time posting hear but have read alot of other threads and there's always great advice given, its quite long so please bare with me there quite alot to explain but if you make it to the end then thankyou so much ... so since having my middle child 9 years ago I have suffered chronic pain and flare ups of fatigue never been on medication for it just managed with self care.. my gp suspected fibromyalgia and referred me to rheumatology last year although I definatley fit the bill for fibro I sometimes felt I wasn't quite severe enough...

I saw specialist in November he gave diagnosis of fibromyalgia even though apart from a few blood tests done previous to rule out a few autoimmune diseases no other testing had been done although they did do a few more blood tests while I was there seeing the specialist ...

from September last year I thought I was just going into a bad flare up however the pain was alot worse and the tiredness was like nothing id felt before by October still no relief so gp decided to put me on sertraline im not sure why as I was complaining of pain and fatigue but I think because I have a diagnosed mental health condition they just pinned it on that

I had an horrendous reaction to the sertraline I felt like I was dying! I also started with what was at first painless neck spasms but then became painful I came off after 2 weeks but it left me with anxiety attacks for weeks after which made the neck spasms continue...

Things eased a little over Christmas but flared up again early January.. neck spasms reappeared absolute exhaustion I piled 2 stone on in 2 months I was sweating so much more, heart palpitations, breathlessness extreme chest pain that landed me in the a&e twice but nothing found wrong and was sent home with diazapam for 1 week to help back/shoulder tension and neck spasms, tingling in hands and feet, jaw and ear pain, vertigo, always cold, slow healing wounds (diabetes has been ruled out) horrendous pain every so often in my kidney area amongst other horrible symptoms just a general feeling of something not been right,

gps just kept fobbing it off as my fibro although I was adamant there was more to it but they were having non of it and just kept talking about long term medication options and that I had to basically just get on with it, i spent weeks on Methocarbamol muscle relaxers and naproxen and cocodamol non of which helped much only really the diazpam offered some relief for the tight muscles, most of it I could push through however these horrendous neck spasms have been debilitating I have never experienced spasms in my neck apsrt from the odd once or thrice when I've spelt funny but always cleared up after a day or 2 but these have left me unable to run my house or look after my kids properly and I am on the verge on loosing my job i look after a lady with disabilities which I can't do right now, thank god for my partner who is still furloughed and has been AMAZING, I had a neck mri which was all clear at this point I had pretty much given up all hope I reached a very low miserable place,

Then 2 weeks ago got a call to say the bloods I had done back in November had shown I had very low vitamin d (not sure how low I have had to request my results be sent through the post from rheumatology so just waiting on them) i have been put on a loading dose of vit d3 4000ius a day and from reading online I have also started taking magnesium and vitk2 ... gp still didn't believe this had anything to do with my symptoms and still told me it was my fibro and refused to run any other bloods

Then spoke to a diff gp who was amazing and very supportive and said vit d could well be playing a part and we should definatley get my levels sorted before saying for sure whats causing it or looking at longer term medication options shes also booked me in to have my calcium levels and parathyroid function checked ahes prescribed me some more diazpam to use sensibly when neck cramps are really bad

I guess I'm just really in need of some positive words right now I feel life will never get better and I'm just completely no use to anyone could a deficiency really be causing some of these horrid symptoms??

I experienced extreme fatigue to the point where I was coming home from work on my lunch break to sleep on the sofa for 40 minutes then going back into work. Blood tests showed dangerously low vit-D levels. I started on the loading dose then normal daily. New blood test showed normal levels. Fatigue gone. It worked for me, hopefully this can give you some hope.

dotoallasyouwouldbedoneby · 13/03/2021 16:12

Have you considered whether the neck spasms are a form of dystonia?
If so touching your cheeks lightly with your fingertips may help relieve them - sensory trick which works.
I would think sorting out your vitamin d levels will help alleviate a great deal anyway.
www.dystonia.org.uk/pages/category/types-of-dystonia

Whatwhyhowwherewho · 13/03/2021 16:57

I've recently gained access to all my previous results done via gp online and my last b12 were in borderline range as far as I can tell

The levels for B12 are so low in this country. You can still suffer awful symptoms at the low end of ‘normal’.

Original poster

HappyFox21 · 13/03/2021 18:31

@dotoallasyouwouldbedoneby thankyou for you comment I had looked at that at one point but doesn't seem to completely fit how my muscle cramps present themselves and I don't have involuntarily movements but I dp appreciate and suggestions and if things don't improve once my levels all up then its certainly something to suggest to my gp @Whatwhyhowwherewho my last results were 146pmol/L the guide range was 115-1000 so seemed on the low side but gp said was fine that was 2 years ago not been checked since

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Original poster

HappyFox21 · 15/03/2021 22:23

@BeagleEagle thankyou for your Response! I am taking naps at every opportunity at the minute but no amount of sleep feels enough 8 months ago I never ever napped during the day unless I was really poorly so this is really different for me... but your post does give me some hope thankyou

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