I also wanted to add that my endocrinologist said that during my second parathyroid surgery that all of my glands were shown to be enlarged when examined. When my endocrinologist has had other endocrine glands tested such as pituitary and adrenal because she worries that I have MEN(multiple endocrine neoplasia) which results in other endocrine glands becoming enlarged as well. I couldn't find an edit button.

There is no edit button, but when we get this gland stuff our typing and spelling seem to worsen. I call our lingo paranese 101. Typos and mis-spelled words, etc. (And I ramble like I never used to).

Where did you have your surguries, Canada or US? You can get your labwork copies by writing/calling and finding out the accepted way to do it in the US. I would do that no matter what. I think you have to right to get copies in Canada, too, but not completely sure.

There's several websites that can show you what the medical levels mean and how else they can be shown.

Endos' famous last words "wait and see", grrrrrr!

Our parachild should see your post shortly and she'll help you if and when she can. She's our parathyroid encyclopedia, lol!

Good luck, you're symptomatic so it kinda sounds like it. Numbers would really help, even if they seem strange to you. I can dig up that medical reference website on measuring different things on the labwork thingy for you if you're interested.

I had my parathyroid surgeries in the US. The first in DE where she only removed part of my first gland. My levels never went down. My second surgery was at Walter Reed in D.C. I have a copy of everything health related from the US. My family doctor only shows me the lab results but I never get copies.

I will definitely look into those websites. They sound like they would be really helpful.

My family doctor is keeping in contact with my endocrinologist but so far she says my numbers aren't high enough to worry but that we will keep watch. I had my labs done on January 18th of this year.

I also have high blood pressure, hypothyroidism and get muscle cramps and muscle twitches. Last night the left side of the bottom part of my face was twitching, especially near my lip. I get a lot of eye twitching. I get tingling in my face and lips sometimes. I read that is due to low calcium? Also I'm constantly worn out and never rest well. I think the bad sleep is also due to my asthma which has been flaring up.

After my second surgery all of my muscles started twitching and they thought I was having a seizure but it calmed down. I was in the hospital for a while after that one because they had to make sure my electrolytes were back to normal. My potassium was low so I had to be given some intravenously.

I'm glad that no one minds if I ramble. lol

Hi Darkness,
I believe the general feeling on this board is that if you are symptomatic (headaches, low energy, pain, etc.) then a "wait and see" approach is not useful and ought to be replaced by some sort of plan. Why wait for more kidney stones and bone loss? You know, and I think your doctor knows where this is headed. Please push for that referral ASAP, because yours is an extremely complicated case. Just finding a surgeon who could do an acceptable job on a third surgery will be a challenge. Your GP needs to move this along!

I completely agree paraglider. I just called to find out the results of my labs but my doctor's office is closed so I left a message. My family doctor keeps weird office hours and goes away a lot. I'd get another doctor but family doctors are few and far between here. It took two years to get my doctor.

My endocrinologist seems to think that since my calcium levels are right on the borderline between high and normal that there's no issue. I did see past labs and my calcium levels were normal and high at some points. My PTH is high and I'm having symptoms, all waiting does it make things worse! There's only one endocrinologist in the city where I live. My endocrinologist will only see me if she thinks it's warranted. I'm getting labs done again in April.

As for surgery I would have to get it in another city or another province because it's not performed in this city which makes it even more complicated.

I called my endocrinologist and found out that my care had been placed back with my family doctor! My family doctor is the one who ordered the labs so it's up to her whether I am referred back to my endocrinologist! My family had told me in the past that she had talked on the phone with my endocrinologist and they had agreed that I just needed to be monitored more often! Very frustrating!

You could try asking your family doc to test your urine for calcium. That's another way to push him/her out of the watch and wait camp. If urine calcium levels are elevated, it's another factor for diagnosis (see Dr. Norman on "confusion areas.")
Really, they're just watching your bones dissolve and waiting for you to get a kidney stone!

Re-reading your comment, I think you should ask your GP to refer you to a different endo altogether, one who can make a really informed decision about the best approach for your very complex case and can consult with a knowledgeable surgeon about best practices in a person as young as you are. Can you go to Toronto?

I will definitely ask my family doctor about urine calcium testing. Is that the 24 hour urine testing? My endocrinologist would have me do many of them. One of the test containers had acid in it.

In the US I always stayed referred to my specialist, but it's different here. My endocrinologist referred me back to my family doctor so it's up to her to refer me back! I don't know why I couldn't have just stayed with my endocrinologist. I would get another endocrinologist but mine is the only one in my city. I wish I could get to Toronto but I can't afford that and don't have and transportation is an issue.

yikers! that is a lot to deal with--just curious...when they say enlarged --doesn't that mean..."adenoma"?!! I don't understand why they didn't get on them right away...? i've never heard of just enlarged parathyroids.

I would think that enlarged(thick as my endocrinologist put it) would mean adenoma. With all four wouldn't it be parathyroid hyperplasia?

Wow, I can't believe what you are going through!
Firstly, I can't believe that they identified large parathyroid on the other side and did not remove, or only leave in a partial one or transplanted in arm or base of neck, When you have enlarged parathyroid glands this is called hyperplasia.

Address with your Doctor immediatly that you have high PTH and taking vitamin D as this is dangerous. Lots of stuff on the web in regard to this. Calcium levels fluctuate but if you did have a reading of high calcium with high PTH, then you should not be on vitamin d.
If you want to message me, perhaps I can help as familiar a bit with Canadian and American test results, different reference ranges, as well as different measurement conversions.

-for example in Canada a level of 3.00 Total Serum Calcium is rougly equivalent to 12.00 in the US.
-Sometimes in US reference range for PTH is 20 to 70, but in Canada often 0 to 50.

You are very symptomatic even with headaches, it does not matter if you do not have kidney stones this time. Hyperparathyroidism causes calcium deposits in all organs from eyes downward.
If you have 4 gland hyperplasia this condition will never show up on sestamibi scans.

High blood pressure is caused by high calcium levels this is called Hypercalcium.

Did you have PTH levels checked when you were operated on during surgery. Is that how you were aware that the levels never went down?
This is called interoperative PTH testing which is usually done during surgery to determine if the surgery was a success and levels dropped. It should be done at 10 minutes then 15 or 20 minutes following the removal of diseased parathyroid gland to determine surgery success and then the surgeon does not have to do exploratory. In your case it seems as if all glands were examined but should have been operated on if they were enlarged.

Sorry gotta run, hope this makes sense.
There are a list of screening tests for Multiple Endocrine Neoplasia type 1 and 2.

I can maybe help you navigate the difficult process of getting labs and medical records

During my first surgery my surgeon left a partial piece of gland on the left. My levels didn't go down after surgery. My surgeon said that my adenoma had been really large.
My sestamibi scan was unclear before my second surgery at Walter Reed(different surgeon) had another scan done which showed it lighting up on the left. I had interoperative PTH testing. The surgeon said they only removed the remaining piece and the second parathyroid on the left. He never said anything about the other glands being enlarged. I didn't find out that until my endocrinologist in Canada told it to me. She had my medical records so the surgeon must have made a note of it.

My family doctor told me that my vitamin D was deficient so I should take vitamin D. She said that my PTH was high and that my calcium was high normal, right on the borderline. She showed me past lab results where my calcium had been normal then high, but that lately it had been in the high normal range. I will stop taking the vitamin D. I don't want to just make things worse.

I have copies of my US medical records but no copies of Canadian lab results. I don't see why my family doctor couldn't just print out the results.

What type of screening tests are there for MEN types 1 and 2?


I really appreciate all of the help and advice on here!

Darkness, since you are taking the Vitamin D on the advice of your GP, you may want to ask her to provide you with recent medical journal articles demonstrating that Vitamin D supplementation is advisable for a patient with primary hyperparathyroidism that persisted even after surgery. (She needs to exclude articles about people with secondary hyperparathyroidism caused by kidney problems, which is a whole 'nother thing.) I'm no expert, but I don't think she'll be able to find this evidence.
The point here is to make it very clear to her that if she doesn't know exactly how to handle your case, she needs to refer you to an endocrinologist who really does know. (And not the one who referred you back down to her.) Family doctors are wonderful people, but cases like yours are rare as hen's teeth, and she needs to bring in a hen's teeth specialist! :^)

And...drum roll...having gone out on that limb I am finding it sawn off!

Please see JR Tucci's article, "Vitamin D therapy in patients with primary hyperparathyroidism and hypovitaminosis D."

This article seems to indicate no particular risk in Vitamin D supplementation. Still, if it were me, I'd prefer to be followed by a knowledgeable endo. Also, the article only looks at people who had no symptoms, and doesn't talk about whether the Vitamin D made them feel better or worse......