Get checked for Vitamin D Deficiency - Fibromyalgia Acti...

Fibromyalgia Action UK

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Get checked for Vitamin D Deficiency


Diagnosed with fibromyalgia, lupus and hyperparathyroid. have your doctors double check your vitamin D levels at least annually. This vitamin deficiency mimics-a number of diseases with aches of bones and muscles. I was fine 1 year ago and now deficient and have to increase my daily doses from 1 to 2x per day. I live in Florida-USA with lots of sun and over 55. Be well!

20 Replies

Hi babybluebooks

Welcome to the forum and it is wonderful to make your acquaintance. I have pasted for you below a link to our mother site, FMA UK:

I have pasted below three excerpts and a link to the *NHS Choices cache on Vitamin D. I take two Acrette D3 daily as I suffer with Osteoporosis and have these on prescription from my doctor.


*Vitamin D

Vitamin D helps to regulate the amount of calcium and phosphate in the body.

These nutrients are needed to keep bones, teeth and muscles healthy.

A lack of vitamin D can lead to bone deformities such as rickets in children, and bone pain and tenderness as a result of a condition called osteomalacia in adults.


*How much vitamin D do I need?

Babies from birth to one year need 8.5 to 10 micrograms (8.5-10mcg) of vitamin D a day.

Children from the age of one year and adults need 10 micrograms (10mcg) of vitamin D a day. This includes pregnant and breastfeeding women and population groups at risk of vitamin D deficiency (those with minimal exposure to sunshine and those from minority ethnic groups with dark skin).

From about late March/April to the end of September, most of us should be able to get all the vitamin D we need from sunlight on our skin.

It is possible to overdose on Vitamin D so I have included this excerpt for members also:


*What happens if I take too much vitamin D?

Taking too many vitamin D supplements over a long period of time can cause more calcium to be absorbed by the body than can be excreted. This leads to high levels of calcium in the blood (hypercalcaemia).

Too much calcium in the blood can weaken the bones and damage the kidneys and the heart.

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

Do not take more than 100mcg of vitamin D a day, as it could be harmful. This applies to adults, including pregnant and breastfeeding women and the elderly, and children aged 11-17 years.

Children aged 1-10 years should not have more than 50mcg a day.

Infants under 12 months should not have more than 25mcg a day.


NHS Choices - Vitamins and minerals - Vitamin D

Please remember that it is always beneficial to have your Vitamin D levels measured by your doctor or medical specialist prior to starting takign vitamin supplements just to ensure that you need them in the first instance.

All my hopes and dreams for you


Hidden in reply to TheAuthor

I always agree with Ken on this topic but as I have said when I have asked about my vit & mineral levels checked I get an emphatic "No" we don't do it anymore due to the costs!! However as a hospital patient they do test!! I have calcium crystal disease which is another area of "we don,t know what causes it" and I often wonder if I have too much of some and not enough of other vits, I also believe that SOME medication destroys levels too.

FoggyMoggy in reply to Hidden

Caz, exactly the same at my surgery. They wanted to charge £35 plus £50 admin fee. If people think the NHS isn't being privatised, this is surely proof. I was appalled. They said it's cheaper to supplement but all supps have made me constipated and besides how do you know where your levels are at?

Hello bbb and Welcome.....I had my Vit D checked 3 months ago and it was low so am on a supplement from Dr. and have just been for a blood test to see if it has improved at all....Can't say I feel any different but it must help something!!!! xx

Hello babybookblue.

I agree with you 100%.



Good advice. Can you tell us how your hyperparathyroid was diagnosed, what tests were done and what the values were?

I am borderline hyperthyroid, but I also have PCOS which masks some of the hyper effects. I do not have a diagnosis and need to see an Endo. However, based on past experience I feel I need to do my homework to make any appointment more useful.

babybluebooks in reply to Hidden

The test for hypothyroid are t3 & T4 tests. The high calcium levels in the blood indicated something was off and the t3 & t4 indicated both high and low levels at the same time....not good. Ultrasound of my thyroid glands indicated nothing to worry about. But blood calcium levels so high the endocrinologist ordered a specific radiation/nuclear blood test. This indicated a growth in one of the four "Parathyroid glands" note "thyroid" and "parathyroid" are 2 different types of glands. The parathyroid controls you calcium levels and mine was taking the calcium out of my bones...specifically my hips...verified with a bone scan and x-rays. So it had to be fixed. This type of parathyroid condition is GENETIC and is only treated with surgery if absolutely necessary. I had no options. Vitamin D is important it can take up to 6 months to see or feel any positive results. (Not an overnight thing.) I am a fair skinned redhead, so I avoid the sun....get dots!!!LOL

Best of health to all, focus on being WELL!

Hidden in reply to babybluebooks

Thank you, that's helpful information and I didn't know about the parathyroid. Mostly, I get a head ache when researching the thyroid.

My GP has recently asked for TSH and T4, generally the right things are not tested so a full picture isn't had and no diagnosis is made. I hear the TSH is used because it is cheap but isn't always helpful.

Thanks again I'm better armed now when I see the Endo.


Thanks for this info babyblu as I have an appt with practice nurse this week for a health check - asthma and bloods for thyroid function as numbers were a bit askew a few weeks ago - so will ask about this. Take care 😘😘😘


Thanks for this info baby blue I am due for health review with practice nurse along with asthma, thyroid function test as numbers were a bit askew a few weeks ago so I will ask about this.

Also welcome to forum you will find loads of support here. Take care 😘😘😘


Just checked and two messages have gone through as the first one said there was a problem sending it 🙄


Hello from across the water- I don,t know wether to say lucky you or not! In UK g.p,s will not test for vit deficiency as part of cut backs, however if you suffer alcohol abuse you are provided with high strength vitamins with or without blood tests, ther might be a moral in that!!!

Hi! Thanks for posting this info! Vit D is really important and people with fibro tend to have a deficiency, though the doctors don't know why. being low in vit D makes you depressed as well, and we fibro patients don't need one more reason for that!

I believe is lots of smiles and laughter. Everyone should confirm with their physician the safe levels of Vitamin D for them. it is making a difference in me!

I have just been diagnosed with low vit D and low B12 so I think there may be some connection with the fibro.

You have REALLY raised interest - and caused me to share my history...diagnosed eighteen months ago by a Rheumatologist with Fibro - and yet I didn't seem to manifest some of the most extreme symptoms of others, so considered - perhaps - thyroid dysfunction as I'd also had carpal tunnel syndrome. I read all the books - and the complications of getting the help....then I decided to transfer to another Drs. practice - which involved an initial set of blood tests etc.

Wow! Immediately, my 'profoundly low' Vit.D was revealed - and indeed declared to be non existent by the Endo!

Within a short period, after a course of 'D' treatment, the adjustment was made, but meanwhile I find that the Hyperparathyroidism that accompanied the minus Vitamin D hangs around a which causes which? That's what I'd really like to know...and now what can I expect - other than confusion? Is it likely that the deficiency will recur - I am 82 this year and suspect that older women are particularly prone to diminishing nutrients....but it took a change of Dr's practise to reveal it! And certainly it had never been questioned before.

I stepped back from contributing here because I have learned that the parathyroid has no connection to the thyroid function - although similar symptoms are shared by Fibro, Thyroid and Parathyroid Dysfunction patients to some extent. Oh - and do Para. and D vitamin dysfunction usually link together? I do hope someone with knowledge can tell us....

Hi and 'bye,


babybluebooks in reply to Selby

I have both hypothyroid and hyperparathyroid....most likely with the vitamin D is it the Chicken or the Egg. I hope that medicine gets a better handle on both of this conditions and understands the importance of nutrients in the system to avoid disease. congratulations on your wonderful age of 82. I celebrated my birthday today. So my day was exceptionally good!

I'm in the UK and last time I asked for vitamin D test they wanted to charge £35 plus £50 admin fee. If people think the NHS isn't being privatised, this is surely proof. I was appalled. They said it's cheaper to supplement but all supps have made me constipated and besides how do you know where your levels are at?

i will add that many times in the winter months women have to adjust thyroid meds when in fact actually it is ALSO lower vitamin d what my doctor told me...i also live in the south where it is sunny etc but my dr said even roofers that are in the sun all day can be low in vitamin d and you are right when i was low i had carpel tunnel, leg aches, arm aches and it was severe.....after taking 5000mg D3 WITH K2 for two months, it went away and now on a maintenance dose...2-3 time s week... so thyroid meds and vitamin d had to be tweeked in fallwinter season... is common

I'm quite reassured to hear that it isn't just me being confused...

When I saw the Rheumatologist early last year, I was seeking acceptable support (not 'knock-out' pills) to enable me to remain mobile in reasonable comfort in order to continue enjoying my life. I had begun to research medical cannabis and hoped it may be available.

He asked only three questions before declaring me suffering with Fibro. I had to look it up and was dismayed at the vagueness of it's cause and treatment, and having had a negative response to the Cannabis question - decided to seek support online - hence this site. After a brief time I realised that thyroid problems seemed to share the site, and took an interest. A recommended book was featured - a name familiar, and I checked my library and found that I'd bought it ten years ago when newly published! I'd suspected thyroid problems then - but had never achieved a comprehensive blood test, Drs seem reluctant to do them!

So now I suspect thyroid dysfunction to be my problem! Following my Rheumatology consultation would be another in six months, so I waited for that - but the week before it happened - it was cancelled! He had also referred me to the pain clinic where I accepted the offer of Acupuncture treatment....which was later postponed from the initial September appointment - until July this year! I am not making this up!

I decided to review my circumstances within the Health Service and found that by changing to a smaller practice quite nearby, that apart from being one of fewer patients on their list, I'd also qualify for treatment in the smaller hospital in that catchment area.....with a better chance of receiving the treatment offered.

The move resulted in the initial blood tests revealing the vit D deficiency, and since then I have received a full set which included T4 and T3 which I can't interpret - but which the Doc says he'll monitor while watching the parathyroid activity - and when I raised the topic of 'T3' to the Endo - he poo-poo'd!

So! The hunt for clarification, knowledge and understanding goes on - plus that we are so rationed time-wise that - don't ask too many questions or help for more than one minor problem at a time.....I'm now sourcing medical services online and what value they may have toward relieving our doctors - and I'll next ask my doctors if they would appreciate certain services being diverted that way...

How can we improve our NHS?

Happy birthday 'babybluebooks' love!

Thank you everybody - we can only learn from each other,


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