Hyperparathyroidism

Hi Porkky,
I am also in Canada and have been diagnosed with an adenoma. Surgery at Dr Norman's clinic is too expensive for me to pay with my own money.

Do you have any info on good doctors in Canada ? I haven't even talked to the surgeon assigned to me but am kind of dreading it ... I have issues with our healthcare system and the way we get treated.

I would really like to hear your experience as I don't see many canucks on this topic.

For Lewis68,
What happened with your test results Lewis68?

For Pepito75,
A good dr here in Montreal, is dr Tabah but I'm can t garantee you because I've just heard about him. Didn 't talk to him.
And yes, you're right pepito75, the healthcare here sucks. You have to wait so long to see a specialist and when finally see him, you realize that they don't know what they're talking about.

wait for your answers

I had surgery by Dr. Norman 4 weeks ago. He removed TWO adenoma's.

My Calcium was only slightly elevated, and my PTH was Low/Normal (23) THREE tests in a row. My scan done by Dr. Norman right before surgery barely showed anything abnormal. He even said there was a slight chance he wouldn't find anything, but said the risks were so minimal, and given my symptoms, I should do it.

*****, I find it very hard to believe Dr. Norman would not take your case.

Olivette and Lewis68
Thank you very much for your opinions. These infos are so well appreciated.
If you don't mind can you tell me what values did you have for the calcium(total and ionized) and pth? How many tests?
How do you both feel right now?

thank you again

Hey Porkyy,
Thanks for responding.
I will talk to the surgeon in a few weeks and see what he says. I wonder if he will give me the "let's monitor the situation" talk ? Hope not.

Do you know anything about how to go about getting the surgery done in a different province ? Is it next to impossible ?

Also, what can you tell me about doing it in Cuba ? Were you serious ?

Reminder: My Calcium has been elevated for at least 18 months, varying from 10.4 to as high as 11.4. My PTH levels were tested three times a couple months before my surgery, two weeks apart, with values of 23, 21 and 22.

I just got the results of my five week post-op tests. My PTH dropped to 14, and my Calcium is now within range 9.5 (8.6-10.2). It looks like my surgery was a success. I feel better, but I'm still not 100%. Some days/times are better then others.

Pepito75,
I don't know what to tell you about getting the surgery on your parathyroid in a different province. What I know is that it's very important to know that the dr is experienced. In Cuba, fortunately de doctors are very good, especially in Havana, they're not expensive and it is a fast process, not like here, where even if you have a good insurance or money, you can't get it done to a private clinic because they don't exist actually. How big is your adenoma?

Lewis68
Thanks for these details. If the situation won't improve, I will sugest you to check your kidneys for possible infections.
How big the adenomas were?
The lowest calcium value was the 10.4 one? Did you check the ionized calcium? I'm curious about the values.
I understand that you don't fell 100% ok, but it is better than before?

hi lewis....thanks for posting your 5 week results. Glad they are ok now....it's probably just a matter of time til you feel better too.

my calcium was still above normal at 5 weeks (10.4). i've never heard of anyone taking this long....feel it too. liv

Update: I still have moments, but I'm feeling better. I can tell my brain fog is lifting also. Which is good, because being a programmer, it was killing me.

Olivette, I'm surprised your calcium is still high. What did the doctor say about that? Also, how much calcium are you taking per day?

Hi Lewis...glad you are coming along, albeit slowly. I stopped taking any supplemental calcium because it seems to make me feel worse. When I spoke with them in florida a few weeks ago, they said that in a very small percentage of cases it may take 2 to 3 months for it to all straighten out. I'm at 2 months now and no better. I'm just guessing that my body is having trouble adjusting because I've had this for so long (8 to 10 years). I'm thinking of calling them again.

Olivette, I haven't seen you post in awhile. How are you doing?

I've gained 20lbs since the surgery. Almost to where I was last Sep. I still have a little brain fog though. The 24th of July will mark 3 months since my surgery. If I'm still having symptoms I may call the doctor. He did say memory and concentration are the last to get better, but I would think after three months I would be normal. We'll see.

Found out my calicum level is 11.7 I have felt pretty bad fo about 8months now, but no one knew what was wrong with me. I am still in the process of setting appointments with doctors. My IM thinks it is my parathyroid. I sure have some of the symptoms. I find it hard to swallow too. Don't know if any of you felt that. I am having to wait on a endo doc. Can't even get in for 2 months. I have read about Dr Norman and am thinking about going to him although I live in Phoenix. I just don't know of any really good doctors. Feel like I could die waiting LOL Symptoms are , tired, feel old, bone pain ache all over and very thirsty. Tell me it will get better please.
Thanks for listening.
PS It makes it hard, cause from the outside I look ok. That makes it so people don't understand how you feel.

hi everybody,

Georgi, do you have calciuria and constipation?

Lewis and Olivette, how do you feel now?

ps: I didn't get the surgery yet.

Hey,
Can I get some feedback please ? A couple months ago I had a pth of 65 and high-normal calcium levels, as well as a positive sestamibi scan.

I saw a surgeon a month ago and he wanted to rule out familial hypocalciuric hypercalcemia. He retested the blood calcium and pth levels.

Today I saw him and he said my pth is 28 and normal calcium. According to him the sestamibi scan was probably "false-positive". He wants to "wait and see", and says I have a mild hyperparathyroidism.

My head is spinning !! I broke a finger by hardly even banging it in March and just broke my arm a week ago (ladder). I have leg myopathies, elevated cpk, anxiety problems. I am crushed to find myself without a real diagnosis again (took years to get one).

If my parathyroid is ok, what showed up on the scan ? Can pth and calcium levels really bounce up and down like that ?

Also, the orthopedic doctor says there is something "abnormal" with my broken bone, "probably caused by the h/pthyism". It's making me nervous. Whereas according to tests, my bmd is "normal".

Please comment, thanks.

Hi Porkky,
I do have the constipation, but only because I take some pain meds. Boy, after reading this thread, it seems that most people have a hard time finding the right doctor. How are you doing?