Have you been tested for Vitamin D de... - Fibromyalgia Acti...
Have you been tested for Vitamin D deficiency? Vitamin D deficiency has similar symptoms to Fibro, so can be masked by Fibro & can seem to worsen Fibro symptoms.
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Don't feel as if I'm taking the correct dosage though as doc wasn't sure how to prescribe it
I was first tested for Vit. D deficiency a year ago. The results came back as being very low so my GP put me on Adcal-D3 Chewable tablets which I take twice a day. The specialist made a comment that it was probably down to the fact that I have red hair and don't get enough sun as I live in the North!
I disagreed with this as I try to get out in the sun as much as possible but the problem is I am very light sensitive ( I suffer from Opthalmic Herpes) so it can be difficult at times.
The Fibromyalgia was only diagnosed this year back in march.
Both my daughters ( also red heads) also have been tested for Vit D deficiency and were also low. One of them also has Fibromyalgia, the other suffers with Ulcerative Colitis (as do I )
My GP feels there may be a connection to the immune system and also that it can run in families especially amongst girls.
I don't think the full implications of low vitamin D, especially in childhood are yet known. It is known that there is a link to both Lupus and MS, as well as rickets and osteopenia.
When I was pregnant with my daughter. I was shocked that none of the doctors, midwives or health visitors I saw were aware that it is now NHS guidance that all pregnant women should take a vitamin D supplement and that babies need a supplement from 6 months old (1 month old if Mum didn't take a supplement throughout pregnancy!).
I know loads of people who are vit D deficient, including my bro-in-law who is Indian (& therefore not a redhead!) & one of my best friends who is also not a redhead, but nor is she as fair-haired and skinned as I am. My test was done in July 2 yrs ago. My GP comment was - it's not too low really (although it was actually into deficiency rather than insufficiency) and I pointed out to her that if ever I was going to have enough, it would be in July! Which she had to agree with. I now buy my Vit D from holland & barrett - it works out cheaper than on prescription which I pay full fee for. My Bro-in-law had to have injections though.
was tested by private dr who also tested my omega levels my vit d was dangerously low was told to take high dosage of vitamin d and was put on ldn (low dose naltrexone) which made an amazing difference
How did you manage to get LDN ???
I saw programme on tv saying that there was a clinic in glasgow which could help with fibro went on website glasgow health solutions page. I made an appointment to see dr gilhooly who then prescribed ldn which is dispensed from Dickensons chemist in rutherglen
hi i am on adcal d3 chewable 1500mg/400i.u. i have been on them for over a year now my nails and hair have started to grow again which is nice. when i was tested my vitamin level was 0 it is now 60 it should be 175 i am on these for life now and take 2 a day. i was lucky i have a good rheumatology doctor who tested me for vitamins.
I take a multi vit every day as well as vit E which I think has helped my psorisis and have been told that it has helped stop the Dupitron in my hand sending my fingers over.
Have been taking Vit D3 supplement 400 (10mcg) every day for past 3 or 4 yrs during autumn & winter months (to avoid SAD syndrome). This was recommended by a chiropractor. This year am still taking it on account of poor summer. So I doubt I have a Vit D deficiency - but do have the Fibro symptoms. Struggle to walk half a mile and awaiting pelvic x-ray results. Have not yet broached subject of Fibro to my GP but will when I see him for results hopefully next week.
the vitamin D deficiency was orginally mooted to be the cause of all my issues...when i was tested in 2010 it was just 8...i believe it should have been 60+....The doctor should have given me the injection but too expensive so i took AdCal...bleughhhhh.. My blood was tested again in 2012 and it is now 40...my calcium level is now normal ...i take 5000iu of vit d a day in the winter and 2000iu in the summer.... there has been a small improvement in the amount of flare ups i have and the severity of them
My Vit D is still too low. |However, the endocrine doctor did not think it was worth seeing me as it can be managed effectively by the GP.
I am taking the Vit D with magnesium as well.... there is no reason for me to be deficient...i am darker skinned, love laying in the sun and live in the sunny south east My doctor has blamed night working...i have not done these shifts since 2010 and that was only for 4 months before i had a meltdown. Onwards and upwards :-)))
Darker skinned people actually need even more UV to get enough vitamin D. They just may be less likely to avoid sun exposure.
But in the UK and similar latitudes, there is a large proportion of the year when UV levels are not sufficient to generate vitamin D.
I take multi vitamins daily, does this cover vitamin D?
Yes, it should do, but this is likely to be no more than the RDA for maintenance. So you could still have low levels (that would need a higher dose to get you back up to optimal levels).
Thanks for your reply, I will broach this subject with my GP and see what happens I'll let you know.
just got my results back after fighting to get this test done for 2 years and they have come back low so will see what the gp offers. I had tried adcal 3 before but they upset my gut which is a common reaction with them.
I had to get supplements from the health food store as my GP could only get me Adcal that contained artificial sweeteners and I can't tolerate them.
I now take Vit D supplements, it was my dentist who first recommended I got tested! I am very pale and burn easily, and work in an office so don't get much sunlight
I have a doctors appointment next week so i might ask for a test
I was told to get properly diagnosed by my Rheumatologist as a doctor was not good enough. He agreed with the doctor but did other tests too and now advises Pain Management Clinic along with Vitamin D jab followed by meds. However, heard nothing since! That was in April.
I take "NOW" vit D3 from an on line company, (cant remember the name off hand) they are 1,000 iu- high potency,they are little soft gel capsules and i take 2 a day.
Before I was diagnosed with FM my GP thought that I have vit D deficiency.The results came back that I was not deficient. I was then referred to the pain management clinic where te consultant diagnosed me with CFS and FM.
By the way I'm a Muslim girl and because I cover up my GP was adamant that I was Vit D deficient lol.
Prescribed Adcal-D3 daily after being diagnosed with Vitamin D deficiency over 2 years ago, but leg pains persist and have worsened. I was diagnosed with Fibromyalgia approx 5 years ago and all bloods were normal apart from ESR and CRP levels, identifying inflammation within the body. At this partcular time, whole body pain was present. Pain has been chronic since despite regular Vitamin D supplements.
Are you being monitored regularly and seeing a rheumatologist? Raised ESR and CRP levels are not associated with Fibro and may indicate a developing inflammatory condition.
Yes i take adcal d3 as well the rheumatologist checked mine and said it was too low.
My vit d tested was very low on adcal D3 twice a day. Just been retested and its even lower. now have to have a kidney scan next week. But im now on Gaberpentine and the leaflet says it can give false readings of vit D.
Just bought a book on vit d on amerson and it says taking high enough dose of vit D really helps Fibro
Almost all my life level of ESR and CRP not normal. Somehow! I have not been told about this when I went to see Rheumatologist at the hospital. They said all my blood levels were normal but low on vitamin D. I do not believe this. I had more pain after taken adcal d3 disabling pain on my neck and arms, I am terrified to think if it moves all over my body. The Consultants refusing to diagnose patients deliberately to cause problem on them!! .
You can get a copy of your blood test results - I recommend all patients do this so you have your own record.
Adcal can contain various additives (some forms contain artificial sweeteners for example) that may not agree with you. So the side effects my not be related to vitamin D
how do I do that? sandra
LindseyMid, thanks I did not know that. I will try, and talk to my GP about "adcal additives". Is there any group clinic near where I live. There must be a lot of things relating to my health which I should learn! I live in SE16 London
There used to be a group in the vicinity of Guys Hospital. I assume the group is still in existence as their details are still on our Support Group Directory:
fibroaction.org/Pages/Fibro...
If you haven't already checked it out, please do check out the FibroAction main website, specifically the following sections:
fibroaction.org/Pages/About...
What's the best way to take vitamin D and what dose do you suggest as I'm on antidepressants..? I try and get in the sunlight as I know this helps my mood a great deal but winters are difficult times for me.. I also have Raynaud's and on Felodipine 60mg a day, plus I have Dry eye syndrome and Tonic pupils (enlarged eye pupils that don't react to light).. It's winter here in NZ and bitterly cold, so it's a difficult time at present.. Any helpful advice is much appreciated..
It really depends on how bad your deficiency is. Someone with a very severe deficiency will often be put on a course of injections of very high dose vitamin D. Someone with just sub-optimal or barely deficient levels may be absolutely fine with a low dose supplement by mouth.
If a supplement contains additives that cause diarrhoea, it cannot be absorbed properly, so that needs to be taken into account.
Also, anyone diagnosed with a vit D deficiency should have their blood retested after some months to check that levels have returned to healthy levels with supplementation. If not, a change of supplements or higher doses are warranted.
Thanks for your help..
I love fish and especially oily sardines, plus I take a fish oil capsules 2000mg each morning for joint mobility. I also grow my own organic greens with plenty of green beet, spinach, cabbage plus celery and lots of carrots as well..
I get my new specially dark glasses next week so I can spend more time outdoors in the direct sunlight, as this really helps my mood..
I've also enquired at my pharmacy about vit D and was suggested I take a multi vitamin with complex vit D, as this has omega 3.. Just need to check with my Dr first as I take Fedodipine for my Raynaud's..
Just reading the other posts here is a great way to learn more about other ideas plus any side effects... Thanks you all - Mike
Was tested in Jan and level qas deathly low. Had only returned from a 7 wk holiday in West Africa, where I spent all the time in the sun storing it for the winter months. Put on adcal D3 1500 chewable & colecal 4000 for 2 mths; now on colecal 4000 a day. I find spinach and fish (esp sardines and tuna) help with the joint pain a bit (though it might not work for all, but worth a try).
I also suffer with Hypothyroidism and was advised NOT to take the Adcol Vit D tablets at the same time as taking the Thyroxine. So I usually take it at lunch and evening.
I looked into what foods are best to also help with Vit D deficiancy and now also eat a lot of fish, salmon, mackeral, sardines and grow lots and lots of spinach lol
I was tested about three years ago for vitamin D at my own request after reading up about it on the internet. My GP was most surprised when I asked but to his credit, he agreed. I think it came back as OK so it is obviously not that causing my particular problems. I try to eat a healthy diet. If my understanding is correct, testing for a vit. D deficiency is not expensive.
I only found out I was deficient in Vit D after a routine blood test by my Rheumatologist. I was sent a signed for package from my hospital containing 4 or 6 large capsules that I had to take all in one go. My GP said that I was very lucky to be sent this particular type of Vit D because it was very expensive & hard to come by! It did the trick though, because I have had 2 follow up tests since & the levels are so far fine again. I don't take any supplements for anything.
Jane
my vit is almost non exsistent and even though they have given me injections ahd super high doses of it my body will noy retain it. i cme from sunny africa soit is not due to lack if sunshine. i get so tired of all the fuss ... why do we need it anyway,,, p
Get tested please, I knew nothing about this until a locum GP was at m practice, he said he was doing some research on Vit D, I had the blood test and came back with this result. I sat in the GP room and the GP said 'this result I would expect a very thin, very old asian woman', from the look on both our faces I did not fit the bill, I was 44, (very white can't get tan for some reason) and with a big swelling in my stomach (endo and bilateral ovaraian cysts). So please catch it sooner rather than later, I have 100,000mg injection once a year and take 20,000mg of colecalciferon once a week. My hair still falls out, my teeth are still cracking and breaking and my nails are very poor, but my last bloods went from the origina 27 vit d to 35 vit d. Also you just can't just take calcium as you need magnesium and vit k as the body needs the two latter to process the calcium. x
i have a blodd clotting problem and cannot take vitamenk as it affects the warfrin its a no win situation for me had to have all my teeth out already petal
I have osteoporosis and fibromyalgia.........I need all the Vitamin D I can get!....Pity I live in bloody Britain where all it does is Rain....So Depressing :/
I have had fibromyalgia for 8 years and have just received my blood results vitamin D was low folic acid was low and vitamin B12 was low i have been put on high dose of vitamin D tablets and folic acid tablets and i have got to have 5 vitamin B12 injections over 8 days and then 1 every 3 months for life also had to have another blood test to find out if this is caused by my immune system feeling very fed up and sorry for myself today i have lost all feeling and sensation down the left side of my body has anyone else had this.
Rant over with Tracey
Gentle hugs
I asked for the test doctor said yes but all was ok
Have been tested for Vitamin D deficiency & found to have extremely low levels, was given a course of (Dekristol) 20000 IU capsules which have made absolutely no difference to any of my FMS symptoms, in fact probably worsened them.
I have been prescribed Dedrogyl by my Belgian doctor since my Vitamin D was at an all time low. The chemist has to bring this in from France and I take between 10-20 drops a day
db-pharma.com/fiche-uk.cfm?...
Definitely find pain levels get out of control if I let my prescription drop.
I was given a form for a blood test and just about every box was ticked except vit d and pregnancy (I had a hysterectomy a few years ago) I cheekily ticked the vit d box myself. I was really worried something would be said but instead i got a call from my dr telling me i had a vit d deficiancy and to pick a prescription up from reception. I took a supplement, 4 tablets once a week for 12 weeks. I have just had new blood test done. Dr hasnt phoned yet! Maybe everything is ok i will ask next time im in though. I will let you knoow the out come. The point i am making is tick it yourself.!! I got away with it. Tina
How is it tested for? can it be done at a pharmacy?(uk)
WHilst I have not been tested. I am a health professional and know the correlation between vit D deficiency and certain illnesses...living in Scotland with no sunlight! SO I take Vit D3 daily...and it isnt a cure all but it helps the mood and energy a little..and any little helps...
I was first diagnosed with Lupus, then went to see a specialist at the hospital, was then diagnosed with fibro but never had any test for vit D deficiency, in a lot of pain at the moment and the weather is warm so don't know why that is, I'm just left to get on with it really.
i get flare-up's at both extremes of weather, if its cold n hot. xxx
yes i was tested at the hospital.. took them a whole year to let my doc know.. then they said i was that low i needed 3000 units.. but my doc could not find give me them.. so had to look at loads of places then got them of amazon... dont know if they work to be honest lol
I have never been tested for Vitamin D
yes i got tested by rheumotology dept. bout 8 months ago, then by GP bout 1 month ago because I'm nocturnal, so sleep in daytime n awake at nite. xxx
Was diagnosed with fibro back in 1997 & at same time told I had Tetany due to problem's with my Vit D, Calcium & Magnesium playing up after years of ME & Lactose intollerance. Managed it myself & had no fit's since 2001 but after they started again this year I was diagnose Vit D defficient. Started Pro D3 2500 & feel so much better but cramp's in my lag's so much worse. Not sure if it's linked!
Yes - tested about 9 months ago and severley deficient. Put on 50,000ius a day for two weeks. Would be interested to see how it is now.
I have a vitamin B deficiency and have been told I need to take vitamin D tablets for the rest of my life. The doctor has prescribed Fultium-D for the past 3 months, which I get free as I am 61 years old I don't pay for prescriptions. She has now told me I need to buy different 25grm vitamin D tablets from Boots or Holland and Barretts. I cant understand why I cant have these on repeat prescription.
