Vitamin D blood test? : I don't have a diagnosis but... - NRAS

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Vitamin D blood test?

fizzierascal profile image

I don't have a diagnosis but have been told I am presenting as if I have RA. Last week I had X-rays and blood tests. This evening the doctors have called and ask me to go for a vitamin D blood test. Before I google it and decide that I'm dying haha does anyone have an inkling what this may mean? Thanks in advance x

39 Replies

It's hugely common in Northern Europe to be vit D deficient, especially if you have darker skin or for example night shift workers who never go outside in daylight. For people with RA it is even more common.

But it's not that evil at all as easily dealt with with supplemental vit D. For some getting vit D back to normal levels can make a big difference in reducing fatigue.

When docs diagnose RA there's no single thing that says Yes! That must be RA. Instead it's a whole load of clues that lead the doc in that direction. Low Vit D is just part of the picture.

Thank you

My vitamin D level is repeatedly in the severely deficient category. I find it very difficult to shift it even with supplementation - but that's because at relatively high doses like 5000 IU I have substantial problems with my balance and it amplifies the tinnitus that I have.

It's a very common finding that people with inflammatory arthritis have very low - low vitamin D levels.

Hi fizzierascal,

I have RA and I have improved in so many ways, both mentally and physically since I started taking very large doses of Vit D3 a little over a year ago. I take mine in powder form, mixed in water. Once a week I take a tiny level scoop 1 gm. = 50,000 IU. I think mine costs me about £1.00 a month.

It appears that scientific research has only recently woken up to Vit D3 and its' potential. For one thing it acts like an anti-inflammatory, just without that scary list of side effects in you usual NSAIDS capsules.

Wishing you well.

AARA

ITYFIALMCTT profile image
ITYFIALMCTT in reply to AARA

AARA - May I ask where you purchase powder vitamin D in the UK, please?

AARA profile image
AARA in reply to ITYFIALMCTT

Hi ITFIALMCTT

Last summer I stumbled across the site of Dr Sarah Myill. She worked as an NHS GP for many years. She developed an interest in MS/Chronic Fatigue Symptom and eventually set up in private practice to enable her to take a more Functional Type Medicine approach.

The demand for her services is now so high she is not taking on any more new patients and as such she has attempted to put most of the knowledge she has acquired over a working lifetime onto her web site. In the last couple of years she has also written several books. I think there is a new one due out soon. Her approach is unconventional to say the least. Her web site has two parts, the information part and the sales part.

I get a number of my supplements from her. At first glance the prices may not look that good, until you work out just how much of the product you are getting for your money. You will pay postage, so it makes sense to order several items at the same time.

I do not agree with her stance on everything, but then her specialty is not RA.

Hope this helps you and others.

AARA

AbbieJ55 profile image
AbbieJ55 in reply to AARA

I take it as well .not had as many infections since started taken it 2 years ago .i get mine on prescription as my levels were very low .

Hi Fizzierascal, I was found to be deficientbin vitamin D3 and take a drop of a D3 emulsion under the tongue daily from October to April. In the summer I take a drop only ocassionally when I can't get 20 minutes of sun on my 'long' bones, that is arms and legs. Better source of vitamin D3 is the sun on our skin.

Mistydawn

Hi fizzyrascal. I was diagnosed as severely vit d deficient last September. From anecdotal evidence and having Googled it, it's so common here that it's almost expected. Bearing in mind that I eat a healthy diet, don't smoke and maintain a healthy weight. As soon as the sun shines I'm out in it and only use sun protection rarely (allergies) I was astonished. The GP told me to go and buy some vit d tablets which are cheap and plentiful. This year I have just bought a vit d3 spray which will give a larger dose and because I'm sick of taking tablets. I'm hoping it will help me through the winter. I hope this helps

J

fizzierascal profile image
fizzierascal in reply to Gnarli

Thank you! I noticed on the blood test card that it said I had low calcium so i guess it's all related. Where did you get the spray, assuming I'll need a supplement, please?

Gnarli profile image
Gnarli in reply to fizzierascal

I got it from Amazon. There are various strengths to choose from with different flavours. I went for a 3000IU natural orange flavour in a sunflower oil carrier. I've only been taking it for about a week and seen no effects as yet good or bad. Part of choosing this brand was that they are fairly local to me and support a children's hospice. Tbh you pay your money and take your choice. Wishing you well

Jan

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Gnarli

Gnarli I was shocked and more than a little bit peeved at the result :) Likewise, I eat a fair amount of oily fish (a little most days and a full portion x2 a week), lifetime non-smoker, at the bottom of the BMI range for my height etc. etc. And, snap on the allergies to most sun protection products :)

Supplementing is driving me scatty. I know that falls and balance problems are related to high loading doses but I'm surprised that it bothers me at the relatively modest levels that I'm taking.

One of the reasons I'm interested in AARA's D3 powder is that it might make it easier to titrate up to a higher level by baby steps for me (given that the D3 drops are so horrendously expensive in the UK).

Gnarli profile image
Gnarli in reply to ITYFIALMCTT

I know. You do your best and still get clobbered. Its a proper b*ggeration. I do get a bit concerned about vit d overdose but reckon you'd have to take far too much for far too long to do yourself harm. Wishing you all the very best

Jan

Hi, I take Nature's Garden vitamin D3 drops as I didn't want to take the Cocalceferol tablets the doc wanted to prescribe. My Vit D levels were abysmally low I was told and I eat a lot of vitamin D rich foods. Within three months my D levels were back to normal and I was told to continue the drops and be tested every six months now. x

Where did you get those from? x

Sorry Fizz, I forgot to say they sell it in Holland & Barrett. Also on Amazon. I showed it to my GP and she was in agreement with me taking that instead of her original prescription. Think it's about £5.50 a bottle but it last quite a while.

My friend has multiple sclerosis and swears high doses if vitamin D make a huge difference

There seem to be a fair number of high vitamin D protocols for MS - some, like the Coimbra Protocol involve massive doses. Do you know which one your friend is following?

So I've had a call from the surgery this morning, to book in a telephone consultation with the doctor on the results of this vitamin D blood test. I guess my vit D is low .... any other idea why? As the consultation isn't till tomorrow and I hate waiting lol

It varies from one area to another - in mine, they'd just call in a prescription (if needed) to the pharmacy and they wouldn't even necessarily tell you, far less talk to you about it. :)

However, depending on local guidelines and your result, they might want to talk you through any suggested supplementation (prescribed or not) or, given your other issues, suggest loading doses (either by mouth or injection). Local guidelines vary enormously.

Might be something else altogether! :)

Good Luck!

Thank you

I hope that they get your other results through quickly and can discuss a clear treatment path for you and whether there's a firm diagnosis.

Me too! I'm in so much pain the naproxen doesn't really work!

Physician 👩‍⚕️ can prescribe an appropriate dose of Vitamin D (a 'hormone') you depending upon blood test results, fizzierascal.

If severely deficient with an initial blood test reading of <15 ng/mL Vit. D (for example) may require 50,000 IU (1 pill/ week 💊 ) for several months. ('Refilling the tank' ⛽️ sorta speak.)

Then, depending on your follow-up blood test 💉 results, your physician may recommend a 'maintenance dose' 1,000+ IU daily (for example), depending upon your body's ability to 'absorb' the hormone. (Merely my simple layman' s understanding.) 😌

.

Kai-- profile image
Kai-- in reply to Kai--

Don't know if this supplemental Vit.D info might interest you, fizzierascal:

• My understanding is autoimmune disease damages our body's ability to absorb nutrients & can interfere with our body's ability to produce/ regulate hormones. (Vit D is a hormone our body produces.)

.

• In short, without proper nutrient absorption & hormone regulation (over time), our body system gets out of whack — BIG TIME!! 😳 🤤 🙃 (Contributing to manifestation of autoimmune disease. 😯 )

.

• Depending upon the severity of the deficiency, we have to intervene with nutrients (in supplement form 💊 ) — and even meds, at times — until we can get our body back in balance. ⚖️ (That's my very non-scientific, layman's understanding. 😌 )

The ideal/ goal is to get all our nutrients via foods — with minimal 'supplementation' (& meds) in the long run.

.

• Once we get over the initial hump (& we're further down the road 🛣 ) , the question becomes what dosage to maintain 'feeling well' & by what means.

That is, do we 'take in' that vitamin/ hormone via:

. . . Sunshine 🌞 on our skin?

. . . Tablets 💊?

. . . Both 🌞 + 💊?

Something each of us has to work out for ourselves — what works best for us — over time.

.

Hope this is of use, fizzierascal. 🙏 🍀 🌺 🌞

.

[Oh, Love 💓 the moniker 'FizzieRascal'! Brings a smile. ☺️ 🤗 ]

.

fizzierascal profile image
fizzierascal in reply to Kai--

This is so helpful!! Thanks you so much! I'm glad you like FizzieRascal .... it's always important to find something to smile about x

AbbieJ55 profile image
AbbieJ55 in reply to Kai--

I agree ,I also have vB12 defieciancy an receive regular injections .

I've had my telephone consultation and I've been told to take vitamin D tablets bought over the counter and increase the calcium in my diet (i eat cheese and yogurt every day!) and if I'm still in pain in 3 months to go back and have more blood tests. Is this usual? I feel really fed up. I had hoped that this was a pathway to getting some sort of diagnosis and managing the pain somehow

As helixhelix indicates - it's very common at the onset of the journey to a diagnosis for inflammatory arthritis if you start out seronegative and it's not unusual for there to be no obvious changes in imaging early in the process. The link from the post might have some information for you: healthunlocked.com/nras/pos...

Did your GP say why you needed to supplement calcium if your diet is adequate? Did you have imaging that reported any bone loss? Any advice from the GP on the amount of supplementation for vitamin D?

Like many others, I was Vit D deficient when diagnosed with RA in 2013. My ND put me on a high dose of Vit D and what a difference it has made! I rarely get sick now and feel healthier overall. The brand I use, available on Amazon, is Bio-D-Mulsion Forte by Biotics Research. I take 2 drops under my tongue daily, an extra drop during the winter months. Enjoy!

p.s. for a dozen years before being diagnosed, I was taking a Vit D with calcium supplement in pill form. This supplement was garbage - it did nothing to bring me to a healthy level of Vit D. Quality supplements make all of the difference.

So did the doctor say that all the other blood tests were normal? And do you know what blood tests they did - i.e. whether they included tests that indictate RA as that was their suspicion?

It may well be that extra vit d will make a big difference to you - people can sometimes have remarkable improvements. But it also may be that you have an early form of inflammatory arthritis that is a sero-negative form which means that little shows in blood tests.

Sadly this is not unusual. It can take a long time, and a lot of persistence to get referred, diagnosed and treated. All I can suggest is that you keep a good note of your symtoms, take photographs of any swollen joints, get copies of your blood tests and keep pushing for an answer.

The doctor said all the other blood tests were not a cause for concern, that the vitamin D was just below "Normal" and my calcium levels made her wonder if I was vegan! I didn't have the nuclear blood test but she tested for inflammatory markers. I asked about he X-ray where it showed that was very little space left between most of the joints in my fingers and she said this could be caused by calcium deficiency.

The symptoms I have now are similar to those that I had from between 13 and 17 when there was no obvious cause as far as the doctors could tell although my hands and arms swelled more regularly and more dramatically then. I will try the supplements from amazon and most of all thank you all for listening to me whinge x

Hardly a whinge - the stiffness and the pain are horrible and I gather that's what prompted you to consult your GP.

I'm a little puzzled by your GP's comments tho' - I thought erosion of the space between your finger joints indicated erosion of the cartilage, the bones, and periarticular demineralisation (which might look like low calcium but isn't, IYSWIM): arthritis-research.biomedce...

Do you think that your symptoms will permit you to carry on with things while waiting for something to change or show itself more clearly in a few months time when you're up for review?

Thank you 💜

I was really puzzled by it and I think I will make an appointment with another GP in a few weeks and not take the anti inflammatory for a few days before so they can see.

There's a few things at work that I can't do anymore and many more things that I can do but leaves me in agony and how pathetic do you feel moaning about your finger pain? I work with disabled children so often have to push wheelchairs and the grasping of the chair is so uncomfortable.

I had to smile at this because it's precisely how I feel!

I'm accustomed to pain and usually cope well with it (long story short - I have an allegedly rare genetic condition that is systemic and affects the skeleton and some organs and I have successfully self-managed it for a very long time).

But...the morning stiffness in my hands that can sometimes last all day, and the stupid everyday problems involved in dressing, opening a milk carton or packet, even just washing my hands (and forget scratching my head or trying to comb my hair) are just AAArgh. Yet, relatively, altho' the pain is there, it could be so much worse - it just feels like such a disproportionate functional impact because it's the hands (and feet - I feel like the stereotypical drunken sailor at times). :)

I occasionally get heal pain too and have to sort of walk on tip toes and then that makes my toes ache and it's all silly things I'm sure if I said my back or my knees I'd get so much more understanding

It's all the stupidly small stuff like not being able to reach into your pocket or open your season ticket holder. And feeling like you've had your fingers slammed in a door and then wrenched for good measure. (See, now, that's a *whinge* :) )

And people who only have doorbells? Do I make one finger worse by pressing the doorbell or shall I just have my whole hand swelling from knocking the door? Earlier today I was at an appointment and had to find something in my bag to use on the intercom buzzer as I didn't have enough finger strength to make it work 🙄

It's not whinging if it's someone who understands. That's my theory

Do you take Vit K alongside? I don't but many will now jump in really pushing at Vit K. My GP said no and I have read the fears of not taking it but not necessary.

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