Does this sound familiar?
Posted , 5 users are following.
For the last few years I have been having a lot of issues. Flushing, sore throat, pain in the center of my chest, trouble losing weight, crazy fatigue, dry skin, and other things I am sure I am forgetting (did I mention brain fog?)
So the primary has given me the thyroid blood test a few times. My gynecologist keeps giving me the same blood tests. And more recently my ENT gave me one. They are all fine. My sore throats has gotten much worse this year. I have had an endoscopy and it was all clear. The GI doctor doesn't even think I have GERD based on what he saw. The ENT saw nothing when she looked. Every time I go to urgent care they see my throat is a little red, but nothing serious. They gave me two rounds of antibiotics and nothing happened.
I started having shooting pains in my neck, ear pain, and more recently I have started to have a horrible pain in the back of my neck and upper spine, stiff neck... and it gets worse if I walk around. By the end of the day I have to lay down I am in so much pain. I also have this consistent feeling like someone is pressing their fingers on the base of the front of my throat.
I have also felt seriously dizzy when I stand up. Once recently I was bending my head over for a while looking at my phone and there was a pillow under it and the pillow pattern started to move like water. I felt very dizzy as well. I've been having moments where I feel like I'm going to pass out as well.
I am just so confused about what has been going on because I have had just about every test in the book. The ENT did schedule an ultrasound on my thyroid at my urging. She was more focused on autoimmune and all the antibody tests came back fine. My primary and ENT are going in the direction of fibromyalgia and I just don't feel like that fits. All of my pain centers around my neck and as I write this there is an intense pressure at the base of the front of my neck that is radiating down to the center of my chest.
Does any of this sound familiar to anyone?
0 likes, 7 replies
julie99798 anticloud
Posted
So if no one has checked your calcium and pth levels you might ask to have that done.
The parathyroid can cause a bunch of issues and is not often thought of by doctors.
it is unreal what my GP would have put me through because parathyroid issues are to rare to even be considered in a small town
Have calcium checked asap and keep us up on your progress
Julie
anticloud julie99798
Posted
My calcium is always borderline high and has been checked pretty often. Most of the time it is 10.3. PTH has not been checked. What do you have if you don't mind me asking?
julie99798 anticloud
Posted
I had one large parathyroid adenoma.
Your calcium could be high anything over 10 can cause problems.
My adenoma went on we know of 8 years and the reason I know this is because I went to ENT for dizziness and vertigo attack as well as an empty hollow sound on my left ear. He did MRI and could find no cause so GP did blood work but said nothing about 10.6 blood calcium. I finally gave up on trying to figure out my unbalance and quit my house painting businesses. Then I had to quit horse riding due to falls no balance.
The symptoms and issues were all passed off by doctors and I just learned to live with these many problems for years.
Finally August of last year I fell down and the next day a lump came up on my neck. I had been having years of gurd so that was first step don't see how that causes lump but oh well. I had severe anxiety, hallucinations,bone and joint pain the list of strange things goes on.
My saving grace was I finally took over and looked up my own results and got to a very good Endocrinologist.
Keep on looking for yourself and get what you need done to improve your quality of life.
julie99798 anticloud
Posted
Eleanor8264 anticloud
Posted
Hello anticloud - are you in America or Canada? I am writing to you from England - about 60 miles north of London.
Before I say anything about calcium tests I'd like to address the issue of fibromyalgia and the numbers of blood tests you have had done. Fibro is an illness which is diagnosed by exclusion - is when tests have been done for 'everything else' the doctor concludes it must be fibro (also called ME/chronic fatigue syndrome (cfs) and in Australia it is called CFIDS. The name is always being debated and changed it's so hard to keep up. I have been diagnosed with ME/fibro for 30 years and too ill to work for 25 years 🤗😀
.
Now then, the idea that you have had 'every blood test' or indeed that Fibro is diagnosed when 'everything else has been excluded is, if you think about it, a logical and financial imposibility. It is not possible, or affordable to exclude everything, and neither is it possible to have 'every test' done. And so if you are eventually diagnosed with fibro it is important to remember that from a patient's point of view you have been dumped into a 'DON'T KNOW ' pile. It is essential for people with this diagnosis to be very proactive, to keep records, letters and photocopies of blood test results, and to write down an outline of every meeting with a doctor because you might ultimately turn out to have something else, or even a rare illness that your doctor didn't consider or for which the tests are too expensive. Ultimately it is possible that what is REALLY WRONG will eventually be discovered - and if you have records it is more than likely that they will help your lawyer if you have to sue because of medical negligence in identifying what is really wrong with you. 😀😀
And so to the issue of raised calcium (Ca). The person who replied suggest you might have raised Ca because with your symptoms it is quite likely you have a rare condition called primary hyperparathyroidism (PHPT). Your parathyroid glands are in your neck and lie near to the thyroid gland - "para" is the Greek word for 'near to' so your parathyroid glands are glands which are near to your thyroid gland. And which sit two above and two below the thyroid. They can also be in other plces but usually in your neck or under your collar bone, and sometimes, rarely, on or near to
Your heart. Nobody knows why, but when something goes wrong the cells in the parathyroid gland(s) start to multiply and produce a benign tumour which can grow to the size of an olive and if they are close to your throat can be felt as swellings. The symptoms of PHPT are very similar to fibro/ME and include bone, joint and muscle pains, extreme fatigue and sleep disorders and when the illness is advanced bone density problems, loss of appetite, extreme thirst, frequent peeing and kidney pain/kidney stones. You can find more good Information at parathyroid com
If you have PTHP the blood tests which will indicate its presence are high Ca, low Vit D and high parathyroid hormone (PTH. There can be variations but those are the most common test results. The Ca is raised because the damaged parathyroid gland mistakenly thinks that there is not enough Ca in the blood so starts drawing it from the bones, and the Vit D drops as a result.
This is not a very rare condition BUT at my local GP surgery there are 9,000 patients and four doctors - two of the doctors have been there 30 years - none of
them had ever seen a case of PHPT before I suggested I might have it. After two weeks of protesting by me they finally ran the tests, which they had never run before and 24 hours later I had my diagnosis.
So read the info and go to your primary care physician to ask for these blood tests - Ca, Vit D and PTH. They should all be done from one draw of blood and they need to arrive at the lab within an hour. So find out when the blood
Is collected from your medical centre and book the very last appointment. I dot know why that one hour matters but it does seem to affect the accuracy of the results.
When the test results come back ask for a printed copy. REMEMBER, for a diagnosis of PHPT the most common test results would be high calcium, high parathyroid hormone and low Vitamin D. If that is what your tests show you will need a referral to an endocrinologist and after that a surgeon. There are variations of the test results. but don't worry about that now. Just read up about PHPT and ask your doctor for the blood tests.
And thats it! I wish you luck and I hope this information begins to provide an answer to your terrible suffering and dreadful symptoms and I hope that this is also the answer to some of your questions. I send good wishes and hugs for the coming weeks. Do
lst863 anticloud
Posted
anne10359 anticloud
Posted
Not sure what you have, but perhaps it is worth getting your calcium, PTH and Vit D checked. PTH is parathyroid hormone. If your calcium is raised and your PTH high, that would indicate a parathyroid adenoma, which would account for at least some of your symptoms. Get the calcium, PTH and Vit D checked from the same blood sample.
I guess you have had your heart checked?
The symptoms that do sound like parathyroid adenoma are brain fog, sore throat, fatigue, it can cause dry skin, though it didn't in me. Depression is another very common one, flushing, sweating, it can cause male pattern baldness in men or women, stomach problems, cramping, bone aches, kidney stones, osteoporosis.... the list is huge.
The parathyroids are glands in your neck behind your thyroid and they can be hard to see, so it is quite easy to miss an adenoma in a scan.
Good luck. Hope you find out what is wrong with you soon. Nothing worse than not knowing, but feeling awful.
Anne