I never had mine tested and was never recommended either. But also the doctors here dont seem to be well versed with this illness. Anything i ask them to get tested for has always been declined saying its not related like testing for prolactin levels too. I think I might get this test done along with prolactin levels in India when i go for my vacation.
Meanwhile I take B complex + Vit C, Calcium (when i remember) and Vit E. I might look into adding this too since there is no harm with adding Vit D. The climate here is very harsh with bad summers. Hence going out in the Sun not an option.
I also had very low Vitamin D levels. I would recommend taking a supplement. It can't hurt, and if you're taking methotrexate, you probably aren't getting enough sun.
I just (finally!) got a doctor to order a test for my prolactin levels last week, and now I am waiting for reults. I have had the same problems trying to get doctors to order different tests. He finally agreed this time because I told him about my burning scalp problems, some vision loss I have been having, etc. He took those symptoms seriously, thinking that it might be a brain tumor or a tumor on my pituitary glad (thus, checking the prolactin levels). Anyway, I had a brain MRI that did not show any tumors (definitely a good thing!), and now I'm waiting for results on my prolactin levels. It is terrific to get negative results, but so frustrating to still not have any answers.
If you decide to take vitamin D, you should read up on it. I agree that in some ways it is pretty harmless to supplement with it. However, I did read a couple of articles that said that it can sometimes cause calcifications in the breasts (I know none of us want anything else to go wrong with our breasts). Also, when I started taking it, it made my period a few days late every month for a couple of months, so that is definitely something to be aware of. From what I have read, Vitamin D is not actually a vitamin...it is a hormone that is normally made by our bodies. So it makes sense to me that it could be involved with our breast problems.
I have also read that low Vitamin D levels are considered to be connected to a lot of different inflammatory diseases, like heart disease, and some autoimmune diseases.
ANYWAY, I would recommend trying it, especially if your levels are low. I actually started to feel a little better - more energy, etc. - within a few days of starting to take it, and haven't had any abscesses since I started to take it. Of course, there's really no way to link all of that together and know for sure that the vitamin D was what helped, but I think it would be worth trying. Definitely read up, though, and maybe talk to your doctor about it. That way you can decide what is best for you.
If you decide to take it, it is best to take it with calcium and magnesium as well so that it can be absorbed better.
If any of you decide to try it, will you let me know how it goes? I am curious about whether this is something that could help us.
Noelle, it is so interesting that you had low Vitamin D levels as well! Maybe that is something that we all have in common? I wonder if the other ladies have had their levels tested. It would be good to know.
How are you doing, Noelle? I know that your surgery is coming up. How do you feel about it now?
I had mine tested and they were normal, however they recommend everyone in Canada now take Vitamin D supplements due to our lack of sunshine. I take 4000 mg a day. Canada has a high rate of certain autoimmune diseases such as MS, and there is some theory it is due to lack of sunshine (Vitamin D).
I have shown low B12 on my last two blood tests which seems funny to me and I am now supplementing for that as well.
Anyone taking prednisone will be told to supplement Vitamin D and Calcium as part of their therapy.
I was diagnosed with IGM in August and since then my life has changed. Doctors know so little about this disease, although they are very much willing to work with me on this and they are also researching about GM (just like me:-).
The flare ups are coinciding with my menstrual cycles (start of cycles to a week after it ends). Has anyone seen this pattern?
I also found out yesterday that my Vit D levels are very low. TSH is also slightly high. Meeting the doctor again next week.
I am glad the Vit D supplement worked out well for you. Are you still taking it and how are you doing now? When were you first diagnosed with GM and when did you start the VitD supplement?
I do want to try this out....will let you know how my doc visit goes.
My test results from last week just came back and my Vitamin D level was below normal as well.... will speak with my doctor when I see her next week - she'll start me on Prednisone
Mine too. I have had basal cell skin cancer twice, so I probably have been too careful about being out of the sun. Can't win I guess. :)
I was diagnosed with GM this past January and ended up having a lumpectomy / breast reduction as I had been misdiagnosed / mistreated for 6 months prior. I improved greatly but noticed that my breast was really sensitive (like a flare-up) around my cycle. Then in June the pain did not go away and ultimately it was determined that the GM was "back". I also was diagnosed with Hashimotos Thyroiditis about 10 years ago which is an auto immune disease of the thyroid. And about 3 or 4 years ago the doctors realized my vit D was extremely low, even though I am out in the sun a lot with my yard and children. I have been taking 5000 IU of Vit D-3 for a couple years now. My levels are better, and have been checked since being diagnosed. Anyway, thought this would contribute to this topic. It would definitely be interesting if there is some sort of connection with low Vit D and GM. Hope you feel better. :)