Fibromyalgia Community

Hello and welcome.....MiMi in NC....oh yes....I know all about this subject.....only too well....when I first got sick....and my doctor insisted that I was just depressed.....and I continued to try different kinds of medicines....but continued to get worse...

So I finally did my own medical research....(which is what I think the internet is all about now) and I shared what I thought was going on with my doctor....who insisted that I DID NOT have parathyroid problems....even though I had 14 out of 19 symptoms of it....

So....I continued to try different kinds of medicines....and then I got so sick...that I one day went in...and I got ugly with the doctor....and insisted that he send me to get a scan....(as I found out on the internet...this is a good way to find out)
and my doctor did not want to order one for me since he again insisted that parathyroid was not what was going on with me....so I then told him....that he needed to prove to me that I did not have this....(now, I will tell you that my blood calcium levels did not reveal that I had any problems)....

Anyway.....I guess you might say that my doctor ended up and did not have a choice in the matter...interesting thing though....I went....and whatever they found....the doctor sent me to a surgeon....who reviewed my medical records and decided that it was Vitamin D level which was causing all of my pain....well....even with this....I was not satisfied that I did not have a parthyroid problem....I looked at this surgeon and said...I need help...and if you can not help me...then please point me in the direction of someone who can.....so this doctor then said to me....sometimes....even the tests do not tell surgeons what they need to see....so he then decided to do an ultrasound on me.....and this is when it was revealed to him what a problem I did have....

I ended up having parathyroid surgery....and the day that I had the surgery....my blood calcium level was 88.....(as my surgeon took blood right before surgery and then again after he removed the bad gland....to make sure that he had gotten all of what was giving me the problem) after surgery...my level came down to 22.....and then 2 weeks after surgery....my level was a normal 9.2.....

So....call it whatever you care to....but instinct is what I think it was....even the surgeon told me later....that mine was actually worse than what the scan even showed....and to think....had he not performed the ultrasound on me.....I might not be here today....

So....I do know that if a person thinks that something is NOT right....follow your instincts and keep on keeping on....until someone gets to the root of your problem(s).....as a person will not get better until this is done....

Now....this is my story...and I'm sticking to it....

I am interested in knowing your story about parathyroid and blood calcium level.....

I do hope that you will share what you know about this....

Take care...


MiMi

yes...they say they check them...and they say they are fine...sometimes it is hard to believe..

cece

My calcium level is a 11.3, my PTH is 136, double the high end of normal. I am going to see an endocrinologist next month. My calcium levels were high last year and I asked about the parathyroids (after googling online). My doctor is really great but she kind of wanted to do another test to see if my blood calcium levels would remain elevated, which they did, so that's when I found out about my parathyroid hormone levels also.

I am really hoping that maybe this is what's behind my pains and aches, among all my other problems. I was diagnosed with Fibromyalgia at 13, in 1995. I really have always wondered about it over the years....

You can demand your records and results. I did this when I had a lyme disease test. Ask for the exact numbers.

How did you find out that you had Lymes Disease and what is a blood calcium. How do I find out? I had blood test 2 months ago and my doc said that I was hypothyroid and low level vit D.

Im asking because I cant believe that this anguish is just a diagnosis of Fibromyalgia and I want to pursue my illness all the way through to the enth degree.

I broke a bone on the top of my foot and had been taking Boniva , as well as Lyrica. My Calcium is so high they want tell me. I am taking a mega -dose of Vitamin D for another 4 weeks., then if I am not any better, they plan on doing a scan of the parathyroid. Why is this connected to fibromyalgia, I wonder.

I don't have lyme disease but I did have a terrible spider bite that at first was thought to be a tick bite. This was about 3 years ago now and I wanted to see the numbers on my lyme test.

Blood Calcium is the amount of calcium in your blood in your body. You can ask for a blood test that tests for calcium levels.

Did they put you on meds for hypothyroidism?

All I know is the symptoms of hyperparathyroidism seem very similar to those of Fibromyalgia. Deep down I am hoping that maybe if I get my malfunctioning gland removed (hopefully only 1 of the 4 that exist) I will finally feel better!

I don't know if there is any connection.

All you have to do is write them and ask for your lab results in writing. I have never heard of a doctor saying a level is too high to tell a patient exactly what the number is.

I don't know that the parathyroid and FMS ARE connected, I don't think they are. Perhaps you can ask Dr. P what he knows about this.

Take care, Annette

I was diagnosed with an almost-nonfunctioning thyroid, after 9 months of gaining weight 2 lb/week and fluctuating thyroid function. I had become so sick for several weeks that I thought that I was going to die and the thyroid test finally indicated the problem. I now take thyroid meds to bring up the level of hormone missing. I don't know if this is related to the fibro. I was diagnosed with fibro last June but think that I have had it for many years, now that I know the symptoms.

I was also diagnosed with celiac sprue (gluten intolerance) in June and don't know if that is related to all of this. I don't feel any better after restricting my diet and have started wondering what ill effects would happen if I ate normally again.

sherrycalif

I got my thyroid levels tested and they were normal. It's only my parathyroids that seem to have the issue...but we'll have to wait and see what happens...

Well, I had 2 enlarged parathyroids removed 2 years ago, due to high calcium and PTH. I was just diagnosed with Fibro.

Going back over my blood tests, (which I kept copies of over the years), I've had high calcium for a long time.

I just read that Lyrica works by 'reducing calcium influx to nerve terminals'. I'm thinking that the long term high calcium is responsible for the nerve changes that caused fibro.

In 1996 I was diagnosed with Graves Disease, which also has to do with fibro. When I saw a rhuematologist a year ago he said that yes our history with thyroid problems does have some sort of link with fibro. He does not know how or why, but many many fibro pt's have some sort of thyroid problem.

Hugs to you........from me.......

Dairyl

Hi,
My PTH is 213, but my serum calcium level is normal at 8.8. I am studying information at parathyroid.com which is written by doctors from a clinic in Tampa, FL that are specialists in diagnosing and removing benign tumors from the parathyroid gland. They have lots of good information on the website and dispel many myths regarding this issue. If your calcium levels are high, please read this website. Even with my levels, I may have a tumor. It is harder to diagnose when the calcium level is normal, but I am following their advice concerning additional blood tests.