A friend of mine wrote this very interesting and rather long and suffering turn of events that beneath hid a secret about parathyroids. This particular story fits both clueless doctors and also migraines. Clueless doctors because after years of suffering it is by the research of the patient that actually lead to her discovery and not the doctors and to migraines because that is one of the symptoms. So if you are reading this, know that it is not just a doctor critic but also full of useful information to you.
Symptoms may vary so you should look up the table on this link and also search other medical websites that may add additional symptoms and information.
My friend’s story:
Well having a persistent headache for about a month – tinnitus louder than ever and clashing with other sounds – throat tightened considerably, back hurt more than usual, walking more difficult – dizziness mostly and those waves of sensation that preclude fainting but catch myself, have paths, my walker & cane nearby and a spot in each room to quickly sit, if that ‘fizzly electric feeling’ suddenly comes on…
For no reason one day I reached to my throat and felt my right clavicle sticking out. No injury but weird – so I made an appointment and went to doctors, since I do have Sarcoidosis among other things, so I thought maybe a new one was growing since its been 12 yrs since the last one grew suddenly in my throat.
Doctor ordered an ultrasound and TSH instead of an X-Ray.
Friday I go to an Endocrinologist. Ultrasound was of the thyroid and they are enlarged and with large nodules – 2 in the right and 1 in the left. They didn’t bother scanning the Parathyroid nor ordered any other tests, just the referral to the Endocrinologist Surgical Clinic.
After the ultrasound my left shoulder began to hurt like a broken tooth and it spread up my neck and down below the left clavicle into my upper chest. My upper arm hurt too, so I went to my PCP. The ringing in my ears was louder, headache pinging higher and at a more painful pitch.
The doctor wanted me to go into the hospital trying to say as a precaution because my heart has attacked before and with left side pain, thought it best I be in for observation, I asked if they would do anything about the thyroid or parathyroid and she said no as that hospital didn’t have that kind of dept. I thought WTH? So she asked if she should call me an ambulance as she didn’t want me driving! I replied I only live a few blocks away and would need to get my car to my son and would have him take me to the hospital instead.
I went home, called the local hospitals and found none handle Endocrinology issues, thus getting the referral to one that does out of town. I took it easy over the weekend at home. There was nothing a hospital would have done anyway and I am more comfortable at home. Sure it hurt and at times scared me but had I been in the hospital they’d have done nothing anyway!!
So the left side pains passed – obviously the lymph nodes and they didn’t like being pushed around during the ultrasound and started some chain reaction but once they settled down the pain lessened and now I am careful not to touch them or push around my neck or shoulder at least until I see the Endocrinologist on Friday.
12 yrs ago I had a fast growing lump too and went through all that pre-cancer scare stuff and turned out to be a sarcoid (non-malignant, a sort of granuloma filled with too much calcium).
I have had to avoid calcium as I get these little balls of them all over under the skin. I also have a low Vitamin D for over 10 yrs. Now while waiting for my appointment I came across a symptom attached to high calcium or calcium issues and low Vitamin D and it points to the parathyroid!!
So I read a bit and was shocked to find that all the mysterious symptoms I have had for years actually may tie together afterall. It seems that many regular doctors miss it because often the patients calcium levels are within the average normal range, although they may not be normal for that patient!! I hate statistics~!
I read more to find that there are 2 Endocrinologist surgeons who also suspected a relationship between calcium abnormalities and low Vitamin D and they started keeping notes on all the Parathyroid Tumor surgeries they did since 1998 and found every one of them had low Vitamin D and something off with the calcium but not necessarily to the levels the med schools tell doctors to do something about it. Instead of finding why the patient is low on Vitamin D, they simply prescribe more of it like they did to me for the past 10 years.
All this time and its probably Parathyroid Tumor and many of them are only the size of a grain of rice so get overlooked by most medical pros~! Shocking that something so little can and does cause so many many things to go wrong all over the body~!
Good news is once its identified and removed, many damaged areas begin to be restored , like heart arrhythmia, tinnitus, light sensitivity, migraine & sinus headaches, GERD, IBS , osteoporosis, joint pain and so many other things…
While I have to go Friday and they need to rule out cancer, at least they found the ones growing in the thyroid and so the Endocrinologist doctors can and will also test and check the parathyroids (there are 4 of them) and so when I do get my surgery whether its for sarcoids or cancer, they can take care of that at the same time.
I had low thyroid for 2 yrs as a teen but then reached ‘low side of normal’ so went off the med and never had to go on it again… always low side of normal- Well it wasn’t normal for me and for 40 yrs since I went off medications I had gained double my body weight, had 8 miscarriages and issues with everything I mentioned above….
All this time and now at 60 I find out…. so unfair that it was overlooked for so long..
Anyway maybe they can fix it all now as my son displays same symptoms, so maybe while its so late for me it may not be for him as he was just diagnosed with low Vitamin D too~
so I suggest anyone who is told they have low Vitamin D, should get their parathyroid checked by a doctor who actually looks for parathyroid tumors since even some endocrinologists miss it~!
My life could have been sooo much better… but even now they say the bone pain ends in 4-6 hrs after surgery as the hormones secreted by the parathyroid are robbing calcium out of the bones and depositing it into the blood causing many other problems that once the sucker is taken out, the problems for the most part stop. I don’t know what it will be like to not have tinnitus or bone pain but I hope to find out.
Clueless Doctors & Scientists 
I have been on vit d supplements for 4 years. My level when i first asked for it to be checked was 7!! And it took 2 years of taking 21000 iu a week for it to come into the normal band. Apparently my calcium levels are “fine”. But my thyroid levels have been ‘low normal’ for years. Maybe I should push for my parathyroids to be checked again.
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Hi Moongazer. I think the UK has a bigger issue with Vitamin D than the US because you seem to be getting less sun and a lot of bad weather. Low thyroid levels can also be caused by lack of iodine in your diet. I know that in the UK they do not sell iodized salt (not commonly anyway) like they do in the US. I believe the US is the only country that does and it saves a lot of thyroids. I have been talking to several others in the UK about this and they did find iodized salt. So if you do not have Hashimoto’s disease, which is a thyroid problem that iodine can actually worsen, than try to find salt with iodine. This may help you reactivate your thyroid hormones that cannot function without iodine. We need a lot more iodine each day than sea weed and other sea food can provide us (about 10 times as much per day!) so it needs to be supplemented. Iodine is a reactive metal so you cannot get it on its own. You should have your thyroid checked to exclude Hashimoto’s and if you do not have that, then start eating all your foods with iodized salt. It will help with your thyroid. If the function is still too low, you may need some supplementation. As for the parathyroids; if you calcium level is OK (and I would need to know the number since the OK level changes by age) than you should be fine. Make sure the number is not over 10.1. If it is, you should consider a parathyroid check but otherwise no. Supplemeting with D is great in the UK so continue to keep up the levels you need!
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Usually PTH levels are checked when the calcium is abnl. In addition, parathyroid tumors can be difficult to locate because the parathyroid glands don;t always reside behind the thyroid glands and have multiple ectopic locations.
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Exactly Angela. That is what is also so tricky about them that the range is narrow but in the upper level of calcium, they go till 10.4 which is great for people under 20. From 20-40 it should be 10.4 and over 40 10.1 or less. And it should be stable. Checking Calcium levels is not a general every day test that is included in a physical exam and so it is often missed. My Calcium was not checked for over 5 years… yep… it needs to be checked because some of the symptoms of bad parathyroids are similar to other illnesses and often get mistreated for years before the truth comes to the surface.
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