Hyperparathyroidism Support Group
Hyperparathyroidism is overactivity of the parathyroid glands resulting in excess production of parathyroid hormone (PTH). Increased PTH consequently leads to increased serum calcium (hypercalcemia) due to 1) increased bone resorption, allowing flow of calcium from bone to blood, 2) reduces renal clearance of calcium, and 3) increases intestinal calcium absorption.
Constantly feeling tired is really getting to me! Amount of sleep doesn't matter! It's a struggle to get through each day and even when I try to nap in the afternoon I can't.
I know how bad I felt before I had my bad gland removed and now I am on the mend thanks to him and his team.
I hope you can make progress soon and really wish you well.
Former Tampa Patient (last month).
My heart goes out to you that you feel so poorly and you can't get to Tampa. It does sound like you have the 4-gland disease. With that they normally remove 3 and a half glands just leaving one half. It could be that you need to have 1 and a half more glands removed to feel completely better. I hope your endocrinologist/surgeon can either re-operate or prescribe something to alleviate your symptoms. You will have to persist with your doctors, the sooner they do something further the sooner you will feel better.
Maybe in the interim you could see if you could improve some of your symptoms by changing your diet.
Keep your pecker up!
Love your little cat picture by the way. I have 2 cats and 2 dogs.
tampapatient
My doctor used to test my pth and calcium along with some other blood tests every three months but she has changed it back to every six months.
My doctor is on maternity leave. The doctor who is replacing her is only available a few hours Tuesdays and Thursdays. I wish I could change doctors but there's a severe shortage of family doctors in Canada. I was on waiting list for two years to get my present family doctor.
I really wish my doctor knew more about hyperparathyroidism! She just goes by the lab ranges. She sees borderline high as normal and discounts the pth. She attributes my symptoms to other causes.
There is only one endocrinologist in this province who will only see me again with my doctor's referral. My doctor won't refer me because she says my calcium is fine. That my pth "is normal for me". High pth and borderline high calcium is not normal!
I try to stay positive but it can be difficult sometimes. I'm glad you enjoy the cat pictures!
Gosh, the health service in Canada is really bad, I had no idea! That is terrible. Have you tried printing off some of the info on Dr Norman's web site to see if your doctor can be convinced by what Dr Norman says about calcium levels etc? Just a thought. Would it be worth dropping a letter in to your temporary doctor to see if you can get him/her to refer you in your usual doctor's absence? It must be so frustrating for you when you know you really do have a problem and your doctor just won't even refer you.
I hope you have lots of support from family and friends.
Have you tried taking someone with you when you go to see your doctor to try and convince your doctor you need a referral?
Before I had my op, I drank lots of filtered water and ate less calcium-rich foods and it did help. Maybe you could try that in the interim?
I do hope you find something that helps and that you have days at least when you do feel better.
Tampapatient
In Canada medicare is great for paying for everything but terrible for access to doctors. I've thought of printing out information from Dr. Norman's site but I don't have a printer. I could print them out at the library but I'm not sure how many pages it would take. I wish she could look at the website herself.
I accidentally cut off the rest of my post. Sorry for two posts. I wish there was a way to edit after having posted.
I usually see my doctor every three months in order to get refills. I might be able to see the doctor who is filling in. Thus far they have just called in the prescriptions. I'm not sure when my doctor will be returning from maternity leave.
I wish I had someone to go with me to the doctor but I don't have much family left. I'm not close to the family I do have left. My boyfriend works overnight so he has to sleep during the day.
I appreciate your advice regarding avoiding calcium rich foods and drinking more filtered water. I drink filtered water with flavoring added as I don't like the taste of unflavored water. It helps having support on here. I know what it was like before my surgeries in 2005.
I'm sorry to hear you don't have much family left - do you mean they have died or moved? When you say you are not close to those you have left, do you mean distance-wise?
Do you have an approachable neighbour friend who might be able to go with you to the doctors?
I'm glad you get support from people in this forum, it helps to share problems and sometimes forums can can be really helpful..
I hope you can get to move forward soon and get the help and treatment you need.
Wishing you all best.
Tampapatient.
--made clear that you participate in this forum, and that at least one physician is also an active participant?
--mentioned that the Norman Center does more parathyroid surgeries than any other center in the world and has a helpful website available to physicians and patients alike?
--printed scholarly (not newspaper or general interest) publications on hyperparathyroidism/MENS for your doc?
Some form of parathyroidectomy is the treatment for all forms of hyperparathyroidism--single-gland, double-gland, 4-gland hyperplasia, MENS. There's no other treatment.
Does your doc think your symptoms stem from something different? What? Let's take a look at that if you're ok with it--I'd love to see you be able to break what seems to be a deadlock!
I have never mentioned Dr. Norman, this forum, nor parathyroid.com to my doctor. I haven't been overly aggressive talking to my doctor because she always attributes my symptoms to some other cause. She says the lab ranges show that my calcium is high normal right on the border but still normal. I've told her how high calcium and pth work to no avail. She is very stubborn and only pays attention to lab ranges.
I'll just have to keep being persistent. I also want her to keep checking my pth and calcium every three months not every six months. I had my levels checked in January and went to the hospital only to find out she had changed it back to every six months! Having them checked twice a year is not enough!
Regarding my recovery you kindly asked about, I just got my blood results back yesterday, 2 months post-op. The majority of them are normal now including the all important PTH and calcium (Dr Norman told me he had cured me and he was right). However my ESR is very high but my doctor said it could be because it goes higher at surgery and also I have had another episode of iritis (a painful eye condition) and that causes it to go high. I have had iritis for years on and off. But my ESR has never been completely normal throughout my life so I wasn't surprised really, also because I still have the bone aches as I now have osteopenia due to the PHPT. I was also told I am a bit low on protein as well and to eat more nuts! and some fish and chicken. I also broke 3 teeth due to the PHPT so perhaps nuts are not the best choice!! Thanks for asking. I also have a septated left ovarian cyst discovered last year which they are monitoring but I did have a CA125 which was in the normal range so that's reassuring. Such a crock though!
One of my 2 cats is now playing with my computer so hope he doesn't unplug me! He recently adopted me (narrowly avoiding the local cats home) but unfortunately he decided to bring me a present the other day. He brought a live mouse into my porch and I found it and rescued it (it was just a little wood mouse with big round ears). I managed to set it free. Unfortunately the next evening when I went into my porch - there was a disembodied mouse head on my doormat! He hadn't done this before and has not done it since but I told him he could keep his 'presents'!
Hope you have a well day tomorrow. If I were in your shoes I would have a go at copying Dr Norman's relevant info and go see that maternity cover doc as soon as possible.
Keep your pecker up!
Tampapatient
I'm in New Brunswick Canada. My mother was 65 when she died. She died due to blood clots during a triple bypass. She had had polio as a child and was suffering post polio syndrome. She was diabetic and wouldn't take her medication. The doctor said it was uncontrolled high blood sugar which caused the narrowing of her arteries which lead to her heart attacks. I worry about becoming diabetic because she had it and she told me my father has it as well.
I'm so sorry to hear about your father! You have my condolences! I'm glad that your mother and paternal aunt are both in remission! I would be worried about cancer too with that family history. I didn't know that parathyroid adenomas increased risk of other types of cancer.
I'm sorry to hear of your iritis and hope that it clears up soon! I most likely have high inflammation levels too due to my asthma/allergies. Oww, it must have been horrible breaking teeth! I had osteoporosis at one point before my other surgeries. The last time I had a bone density scan they said I had osteopenia. I hope that your ovarian cyst doesn't get any worse!
Poor little mouse! I grew up with cats and remember them bringing presents. I never had the severe allergies growing up that I do know. I'd love to have pets but we don't have the room and my animal dander allergy is really bad.
I'm under the weather either with a cold or my allergies are acting up. It's sometimes hard to tell the difference because both of them make my asthma worse. Thank you for your wonderful response!