Graves and Vitamin D Deficiency

[darcypog]

Hi,

I'm new to this forum so will tell you a bit about me first. My name is Bec I am 35 year old Australian who is living and was working here until I got diagnosed with Graves disease 1.5 years ago. The foreign doctors here are well let's just say c***, so I fly to Bangkok every 3 months to see an Endo at Bumrungrad hospital.

Anyway my levels were up and down for the first year then for the next 4 months I was told I was in the normal range even though I would still have symptoms ranging from tiredness and only being awake for about 4 hours a say, then to insomnia where I was only sleeping about 4 hours a day, also nausea, headaches on and off, and a horrible feeling like my flesh was rotting under my skin. Then two ago months I had severe bone pain and joint stiffness and felt like I was 100 years old getting out of bed.

My GP in Vietnam said your normal bye bye. I said could I have Vit D or calcium problem cause I knew that Graves patients have issue with that. Was told No No wouldn't be that.

My endo 4 months previous said your in the normal range bye bye.

So 2 months ago I took it upon myself to see another doctor in Bangkok I explained what was going on and asked him if I could be tested for food allergies as I thought perhaps that was my problem. He said no but ran a whole bunch of tests one of which was Vit D. I think the normal range starts at 50. I was a 12 indicating severe vitamin d deficiency. So he has put me on 50,000u of Vit D once a week for 2 months. I got back to Thailand next week to get re tested for this and my normal TSH and T3/4.

I still constantly jump around with symptoms, depression, raging anger. The anger I can't seem to let go off. Like yesterday someone did something really rude and I went off and even today I am still p***ed about it.

Anyway I guess my question is does anyone else suffer from Graves and Vit D Def and do they feel the same way. How long did it take to feel any better? Or is this still Graves and what I have to deal with for the rest of my life?

I should mention I am on 2.5mg Tapazole everyday. I don't want to do surgery or RAI in case there is some miracle cure in the next few years.

I'm just so depressed because I thought I would feel better by now with the Graves. I think I have had the mentality that you go to a doc they give you pills they fix the problem. I think maybe I need to get my head around that this is just the way  its going to be.

Bec

[Phyllis2010]

Yes

[stella5349]

I am fairly familiar with the Vit D board... did you mean to address this to darcypog?

[medicmommy]

Hi Bec,
Although I don't have Graves (do have thyroid issues though) a few weeks ago I  was at 15 for my vitamin D level. (VERY low.) I have been on 10,000 units for two weeks along with 1-2 grams of calcium citrate -and I'm feeling tons better already! I too have been experiencing the bone pain/ irritation thing -which feels much like when I my calcium levels were low after parathyroid surgery...Hmm...I think I'll check out the vit D site too...:) Hang in there! ~MM

[darcypog]

Thank you going to have a look now.

[Phyllis2010]

Try the recovering from vitamin d deficiency forum -- I've found it helpful...Phyllis

[darcypog]

Hi Stella,

I got diagnosed with Graves 1.5 years ago and diagnosed the vit d def 2 months ago. I've been on the 50,000ui of Vit D each week but still have joint and muscle pain :( I can't seem to find anywhere on any forums any indications of how long it will take before I feel better. I guess I can guage it next week when I get my blood test.

I am really confused by the whole Graves and Hashimoto thing. But I think they ran the TPOab and TgAb before but I will check.

Also can you explain to me what the uptake thyroid scan is. Originally my doc here in Vietnam told me to go to Thailand to have this done. But when I got to Thailand they said it wasn't required. What does this test tell the doctors.

I'm really happy I found this forum, my face is constantly in the internet looking for answers, I'm surprised I didn't come across this before.

You will see me around asking a lot more questions and probably blubbering when I'm having a bad day which is almost everyday, but I'll try not to be a forum hog.

Cheers

Bec

[stella5349]

You're miracle could be the findings of the Vit D deficiency. You may have found your miracle for sure!

When you go back to the doctor next week make SURE you test the FREE T3 and FREE T4 tests and not just the straight ( total) T's.

save your money and your time going there to run the BEST labs you can to see where you are at.

You said you had been diagnoised with autoimmune Graves recently too. Was the TSI blood lab done AND the iodine uptake thyroid scan completed.

If not it wouldn't hurt to to MAKE sure when you go to get this done to.. - AND - since we are on a track of preparing to go.. It would be definately important on top of all that above to make sure you rund a Hashimoto autoimmune test which is a TPOab and TgAb test with all this too.

With THAT low of a Vit D - I suspect this is not just Graves only but a rage in BOTH antibodies.