I am wondering how many of us who have Eagles syndrome have had an experience with the above.
Thyroid issues of any kind, hypothyroid, hyperthyroid or cancer, Hashimotos or Graves?
Primary Hyperparathyroidism or if you don't know, do you have calcium levels that are near the high range or above on a regular or even irregular basis. There is evidence that calcium at or above 10.0 in addults is a sign of hyperparathyroidism. Children live in the 10.0 range not adults.
Parathyroid glands and parathyroid hormones are the main regulator of calcium in our bodies.
Have you been taking calcium supplements to make sure your bones get enough calcium, especially recommended in menopausal women? Have you been getting lots of dairy because you love it and like the amount of calcium you get?
I am asking this because I started having issues with the above about 10 years ago when my bone density was osteopeonia and I was menopausal. Before my doctors started insisting and pushing more calcium, I had no problems. As soon as I started taking more calcium in diet or supplements, my body started to hate me. I started with serious acid reflux, impossible stomach and bowel problems and a parathyroid tumor, thyroid cancer and Eagles. The calcium did nothing for my bones and I still now have osteoporosis in addition to calcified styloid and hypercalcemia that was ultimately diagnosed as primary hyperparathroidism. This is strictly an enlarged parathyroid gland which is producing way too much hormone and putting calcium in our blood and taking it from our bones.
I am just trying to see how many of us have the above issues, and how many of us have followed doctors orders over the last 15 to 20 years to supplement with calcium.
This is supposed to be a rare disease, but I am on another forum and the occurance of hyperparathyroidism is booming and Eagles members seem to have some of the above issues.
Just my curiosity. I would love to have an idea. I am sure it is way too hopeful to think I could make a doctor or researcher start looking at the relationships of any of the above to Eagles, but I bet a lot of us have one or more of the above problems or thoughts about there being a link to something.
I am still waiting for confirmation that I indeed have Eagles and possibly Horners. I have been on synthroid for over ten years because without it my levels get very high. I DO NOT have hashimotos so we don’t know why my thyroid doesn’t work right.
No one has paid much attention to my thyroid other than I have a small nodule. One time I tested way low on Vit D3 but I know I was not tested for high calcium! High calcium can lower your D3 as a protective measure. I plan on having a long talk with my doc. They do push calcium after menopause, but I think making sure magnesium levels are correct is more important. Calcium needs D3/magnesium and k to be in sync to work well. I want mine checked out
I agree with Ivy regarding the magnesium. I have been using magnesium chloride as a topical rub, twice a day for almost three months and it has made a big difference in my energy levels as well as stopping the excruciating muscle spasms. If I forget to apply one or more doses in a day, I usually get the spasms in the middle of the night. I have not yet tried the oral supplements but will phase them in soon.
For the last 2 months I have been taking MSM powder & vitamin C on the advice of a friend who claims to have cured her spinal calcification with it. She also happens to be a Homeopath, though no longer practicing. Other than increased energy, I can't really say whether it has helped dissolve the calcifications, as I still feel & hear the crackling when I stretch my neck (I have both calcified stylohyoid ligaments as well as calcified deposits on my Atlas vertebra and the surrounding ligaments/membranes) and still suffer the cervicogenic headaches as well as the other minor symptoms.
I'm not sure if there is a "magic pill" solution, but I believe that the way to find it, is through regulating the calcium/magnesium/D3/K levels. I even considered chelation therapy, but there doesn't seem to be any hard evidence that it works on ectopic calcification as opposed to clacification inside the blood vessels.
Here is an article that might be of interest, though it is by no means a peer reviewed study. At times it seems to be an amalgamation of several opinions pieced together. Still, it is a breadcrumb that leads to the Yellow Brick Road of relief.
I know you'd not been on the site for a bit, so maybe you missed a discussion back in March- New member with lots of questions, by JJ- looking into ideas for researching causes of ES. There were a lot of replies about thyroid, calcium and Vit D levels. You might be interested in it.
Yes! I have had thyroid symptoms for 6 years. Ever since the birth of my 2nd child. My bloodwork always comes back fine so they wouldn’t dig further. When I got my 3d scan before my styloid surgery on the left side (I still have the right side to go), they found a large nodule on my right side. They did the biopsy and it was benign. Now 6 months later I just had another ultrasound and I now have a small nodule on the left & 2 more on the right. I asked my ent surgeon if he thought the parathyroid gland contributed to eagle’s in any way and he said no. I have thought the same as you. I’m still convinced there’s a connection. I get my blood work back next week and if they tell me again nothing is wrong I will scream. My hair is falling out, my nails have lumps, I have no energy, my eyes hurt, my hands tremor, my heart palpitations are ridiculous, etc. There has to be a connection with the thyroid or parathyroid gland. Or both.
I have hypothyroidism and low D3’ levels. I am currently trying to find a new endocrine specialist to check my parathyroid. Because I do deal with bone pain hormonal etc. Also I have a enlarged thyroid. This all started after my 2nd child for me as well at 35 yrs of age. Now I’m 44" my hair thinned out at 35 and never came back! Something is definitely going on!
I have Graves’ disease that was treated with radioactive iodine. It was initially misdiagnosed, so I had probably a year or more where I was running around hyperthyroid. It was after that, and a fall when I slipped on a wet floor that I started having problems. My calcium levels are normal, and I have taken calcium supplements for years to prevent osteoporosis…not sure about magnesium levels or Vitamin D levels, but I take both as supplements. I also see that several members have autoimmune issues…not sure if this plays into the picture. I hope someone decides to do some research to benefit us and others that may develop ES
Ive had hypo for 20 yrs and then last year DXd with hashimoto. I had weight loss surgery 12 yrs ago and have to take a ton of vitamins. My ES showed up and started to bother me in 09 when I started high doses of D, I was also taking cal 4x a day at that time, (Still do) but the D was D2 and a script. Ive read our bodies dont do as well on D2. Im now on D3. The bone showed up a year after starting the D3 in 2011. I have secondary hyperparathyroidism due to low D. My cal runs normal..low. My PTH is high cuz my endo said I dont get enough D so she recently upped it and I get retested in July. I read if a person takes cal and D without mag or K2, the cal can be misplaced into soft tissue. So for many years I only took cal and when I Started the D, it was the wrong kind and never any k2 or mag. Now I take all 4 of the right ones. I pray this doenst come back after I have them removed. x
It's interesting that you posed the question about calcium supplementation as I have wondered if taking extra calcium was a contributor to my ES. I have had cysts in my thyroid for decades. They come and they go, but there's always something there. For the last 10 years, I've had a couple that are calcified & mostly unchanging. I've had them biopsied, & they are benign for the moment. I get an annual ultrasound to make sure there are no "bad" changes. I'm not sure what my blood calcium level is. Will try to find my last lab report (from last fall) to see what it says. I was diagnosed w/ ES last fall also.
I have taken calcium supplements since I was in high school because I got terrible cramps in my calves when I was sleeping if I didn't. Back then most of the calcium supplements were made from ground up oyster shells (we've come a long way!). I have taken calcium supplements off and on for 4 decades. I currently take calcium (Bone-up) and Mag Glycinate and Mag Citrate among other supplements. For the record, I am post menopausal.
It will be very interesting to see if someone does find a link between ES and the other problems you mentioned. It's all so very curious.
I just received some copies of medical records where I had 5 years of CBC tests every 6 months. My calcium level is 9 every time. That is in the normal range. However, my red blood count runs a tad low about once a year. Otherwise everything looks great. I often wonder about my MS medication that I’ve been injecting since 2002…but I haven’t heard other MS patients complaining. I had tonsils out in 1963 and then a really bad neck injury in 1964 and a couple of bad falls in my adulthood that may have caused my ES. MS is neurological but they also believe an autoimmune issue
My red blood count has been low a few times and my vitamin D has been low too. I'm always tired.. But, no thyroid or cancer problems. I do take vitamin B6 and B12 and a probiotic to help with energy that seems to help a bit and magnesium (epsum salt baths). Any other recomendations?
Thanks everyone for your responses. I have no answers, just questions myself. Red Pill, I have been adding magnesium supplements to my diet, only 250 mg a day or maybe 5 days a week. Wish someone would come up with a study, but when they do and it proves that magnesium or anything else is what we need instead of so much calcium, all of us osteoporosis, Eagles, parathyroid and heart disease sufferers will be in an uproar and rightly so.
Yes, there seems to be a connection for me also. I developed endocrine issues because of Lyme disease. So, it does makes sense. Lyme deprives you of magnesium which I would assume would throw off the balance of cal mag too.
I had a total thyroidectomy in 2011 for multi nodular non-toxic goiter. I also had undiagnosed ES at the time. I went in to an ENT for jaw pain and ended up having my thyroid removed. I'm having Styloid surgery in 6 days.