Vitamin D test - your opinion please
Posted , 6 users are following.
Hello. I'm interested in your opinions on the care/treatment I've had.
At the age of 36, I started suffering from morning stiffness, joint pains and pins and needles. After six months of seeing the GP and having normal blood tests, I was referred to a rheumatologist.
I eventually saw a rheumatologist 10 months after symptom onset. In this time my symptoms had worsened and I barely left the house due to joint pain and fatigue. The rheumatologist found nothing untoward and told me she didn't think I had any inflammation. She ordered some antibody tests and asked me to return in two months. By this time my symptoms were severe, my moods were very low and I struggled to do basic things like walk up stairs.
When I went back two months later, it turned out they had booked me in with the wrong consultant. This wrong consultant was very nice though, open to the idea that I might have an inflammatory arthritis, but also said some of my symptoms sounded like a vitamin D deficiency, so he ordered a vitamin D test and told me to come back two months later - but I would be sent back to the original rheumatologist next time. In that two month wait I became severely depressed and physically debilitated. I had severe back pain that radiated to my buttocks, joint swelling and morning stiffness. I could barely function at work and my quality of life was pretty poor.
Two months later I returned to see my original rheumatologist. She said my vitamin D test, the one I'd had two months earlier, came back "very very low" at 10nmol/L (4ng/L). Vitamin D should be about 75. Lower than 50 is considered deficient. Lower than 20 is considered severely deficient. Mine was 10. She said it was the lowest she had seen in a long time. She said all my symptoms could be blamed on this, and did not examine me when I told her about the swollen joints or lower back pain. When I asked about the swelling and joint pain, she lost her patience and snapped at me "I don't think this is an immune problem, I think I told you that last time". I had never even mentioned an "immune problem". We had never had the chance to discuss anything. She said she was sure I would feel better after a 10-week course of vitamin D.
My question is, do you think it was right for them not to contact me earlier about my abnormal vitamin D result? Do you think it was okay, given my symptoms and their duration, that they waited two months to tell me about the blood test results and start treatment? That the doctor who ordered the blood test did nothing when he received the result?
How would you rate this experience? Just bear in mind I'm a woman of reproductive age.
There is a lot more to this story that followed, but I'm interested to know what other people would have done in my shoes.
1 like, 11 replies
moon53540 elbmow
Posted
It sounds typical of NHS treatment! Are you in the UK?
It sounds like the "wrong" consultant thought your vitamin d levels were due to an autoimmune disease like rheumatoid arthritis and wrote it in the notes and your rheumatologist got annoyed that someone had questioned her judgment. Of course you should have been told sooner, the blood result probably wasn't sent to the original doctor, it would have probably been sent to your GP.
You always have to chase blood results and scan results now, as I have found out in the last year.
elbmow moon53540
Posted
Thank you. I am in the UK, yes.
Usually the consultant would write to the GP and copy me in. But the letter was never sent. I think you're right that my consultant was annoyed about someone questioning her judgement, I hadn't really thought about that. As it turned out, the wrong consultant was right and she was wrong, as I was later diagnosed with an autoimmune arthritis.
will24 elbmow
Posted
Meh my vitamin d came back low and my family doctor never told me until i seen him 4 months later. once you start your vitamin d therapy you might experience much worse joint pain for a few months like i did, which is a good sign because it means your joint pain was due to the vitamin d. this is because when you start taking vitamin d your body will stop taking calcium and stuff from your bones and start adding it to them, and when it adds it to them it will bind with water making your joints swell more then before.
elbmow will24
Posted
It was not the cause of my joint pain, that's the point. The delay to treating my vitamin D deficiency meant a delay to diagnosing/treating the real cause of my joint pain, which was dismissed because it was attributed to the vitamin D deficiency. I now have permanent joint damage.
Lolasmom elbmow
Posted
I absolutely agree, this is far to long to wait for those results. Your Vit D count should have been flagged and you should have been notified.
I have everything you described. My Vit D is low but not as low as yours.
I have such lower back pain, and pain in my but. I have been starting to think I have hip problems because of the way I am feeling. Even if I cough or sneeze this pain in my upper butt screams. \rolling over in bed or trying to get up from a sitting position, it feels like like it is piersing through me.
I stopped my vit D pills many months ago, but now reading your story, I think I better get going on them.
I also have swollen joints like my knees and the inside part of my elbow.Feel 100 years old
masha17 Lolasmom
Posted
I'm sorry to hear about your problems. What you wrote "Even if I cough or sneeze this pain in my upper butt screams. \rolling over in bed or trying to get up from a sitting position, it feels like like it is piersing through me." may be common for many "back problems", but I have Ankylosing Spondylitis and could have written the same thing!
Please get yourself checked out. I'm not saying it is AS - it is very rare - but you the doctors must find a reason for your problems.
elbmow masha17
Posted
Agree. My symptons turned out to be caused by a type of spondyloarthritis too. The delay to treating my vitamin D deficiency meant a delay to diagnosing/treating my other problems.
masha17 elbmow
Posted
NO!
She should have contacted you as soon as she had gotten the results.
I live in France and we do not wait for doctors to give us the results. You can either get them by an email or you can go to the lab and get them.
My vitamin D deficiency has cause a hyperparathuroid! It's not something anybody should sit on.
Btw, in France you MUST pay for the vitamin D blood test, even when it is prescribed by a doctor. So basically people now shouldn't wait. Apparently, there are more and more people every year who are deficient. Doctors can prescribe some really big doses of vitamin D, but they mostly disagree on how you should take them. I have seen 3 doctors (my GP and 2 endocrinologists) and they all have prescribed me the same vitamin D supplement with different ways of taking them (once every month, twice every month, once every 10 days...).
Vitamin D supplement is also highly recommended in all sorts of auto-inflammatory and auto-immune conditions. I don't know what you may have but it does sound like one of the two. I have Ankylosing Spondylitis (I have a flare up as I'm writing this). It took ages for my doctors to diagnose it. I had done a lot of blood tests and ONLY ONE has shown what they were looking for - inflammation. All the rest were normal even though I was in horrible pain, my sacroiliac joints were burning (buttocks too) and I had morning stiffens. When things got really bad I started getting cramps in my back (unbearable) and I started leaning towards my left side. and my test results were still normal. I'm even negative for a certain gene they were looking for (HLA b27). But all the symptoms were there.
Don't give up.
Clean up your diet (no processed foods, no starches - this one is difficult to manage since it includes grains, potatoes, pasta, bread... - do dairy, if you eat red meat make sure it is grass fed, stick to good oils like olive oil and coconut oil for cooking) and try to move and exercise as much as you can.
Try Boswelia, Tumeric and pepper supplements.
Hang in there!
elbmow masha17
Posted
Thank you. I was eventually diagnosed with a type of spondyloarthritis, with similar symptoms to AS. The delay in treating my vitamin D deficiency delayed my diagnosis and treatment for the real cause of my pain.
masha17 elbmow
Posted
I'm glad you finally got your diagnosis and that it is not AS 😃
Even though it is not AS maybe you could benefit from diet changes. it did wonders for me. The latest episode was brought on by my drinking chicory which has inulin, which feeds bad bacteria in the gut as well and when they multiply the inflammation hits the roof.
Now that you know what you're dealing with you have options. i don't know who said it, but I love this:
Accept the diagnosis, but not the prognosis.
We can do much more than just take meds. Life-style changes are of tremendous help.
I wish you all the best!
lisalisatheone elbmow
Posted
hi. i was exactly YOU! except i had a 4 for a vitamin d level and i has a high esr level which can be a measure of inflammation. any disease in your family that is autoimmune? my back pain was determined to be psoriatic disease and it hasnt gotten any better but i do know that autoimmune conditions like mine can cause a low d level. do not give up ! you may need a rheumatologist or several to get to the bottom of it all.