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Desertmama · 11-07-2012, 10:21 AM

Hello!

I am new to this part of the board.

I recently found out that I have elevated Calcium blood levels (currently 11.1), PTH is 80 and last time we checked my Vit D is 15 (currently taking 50,000 units once per week).

Today I see an Endo for the first time. From what I have read, these labs indicate Primary Hyperparathyroidism and the fix is to remove the parathyroid gland that is not working right or remove a tumor.

I work full time at a call center and really cannot afford to not work. I really hope and pray that I just need a parathyroid gland removed and it can be done quick and somewhat painlessly. As of now I feel very run down, have anxiety, depression, feel like I have the flu, nausea, headaches.. generally feel bad most of the time. I always ration my energy. I come home from work and go straight to my bed and rest.

I am married and have three kids. The two that live at home are 18 and 12. We are a busy family and there's always something going on. I have to say "no" to a lot of things, then my husband picks up the slack where he can with other things. I feel like I am missing out and feel guilty because I cannot be the mom or wife that I want to be.

I really hope and pray that I get good news today when going to the Endo. I am going to tell him how this is affecting my life and the I need a solution Now!! I am tired of Dr's not believing how bad I feel and writing off my symptoms. Now that I have proof that I am sick.. I need a cure!!!

Any additional advice on what to say or watch for at the Endo would be much appreciated!

Also, who has taken time off of work for surgery/recover for hyperparathyroidism? I wonder how much time is allowed through Sedgwick (my company's disability insurance claims provider). I talk on the phone for a living and want to make sure that I don't get fired if the claims co. says one week and I'm out of a voice or sick for 2-3 weeks.

Thanks in advance for any helpful info and moral support!

Desertmama · 11-07-2012, 04:37 PM

Back from Endo appt. Apparently I am not sick enough to have surgery although the Dr. agreed that I have at least one parathyroid gland that is not working right.

He had a Dexa scan done and my bones are not affected yet. This is why he wants to wait.

I just feel like he doesn't care that I am sick and miserable and barely able to work.

Desertmama · 11-07-2012, 04:38 PM

Oops! Double-posted. Sorry

roisindubh · 11-08-2012, 10:14 AM

Hi DesertMama --

I just had surgery for hyperparathyroidism about 6 weeks ago. I'm 26 and was diagnosed at the beginning of this year with calcium at about 10.9 and PTH at around 109. Apparently my calcium had been high for six years -- this was the first I was told about it. My PCP considered it minimally high and I had to fight her to test my PTH levels after doing some research on the matter.

I would encourage a second opinion. If you do research about hyperparathyroidism, there is quite a bit out there. There is also a forum out of the UK dedicated strictly to those with parathyroid issues. Dr. Norman out of Tampa in particular has an entire website about why endocrinologists and surgeons who tell us to wait should be questions.

My endocrinologist sent me to a surgeon right away, and because none of my scans showed a problematic gland, he wanted to wait and watch. He considered me to be "asymptomatic" despite fatigue, concentration issues, memory problems, headaches, joint and bone pain, etc. He was also very dismissive of my concerns. I sought out a second opinion. The second surgeon was much more knowledgeable and we went through with the surgery. Even though my levels were not considered "very high," the surgeon said afterwards that he's positive that had I continued to wait, I would have had osteoporosis within ten years. Waiting and keeping such high levels of calcium in your body also opens the door for other health complications.

What hyperparathyroidism does is tell your body that it needs more calcium, even though it doesn't, and so your body in turn leaches calcium from your bones. Just because your bones show no signs of any problems now doesn't necessarily mean that you should wait until they do.

I encourage you again to at least do research -- read through Dr. Norman's site and others like it -- and then return to your endo or to another when you are well-read and able to be your own advocate.

Recovery times are different for everyone -- I had a harder surgery than was expected and was in bed for about a week before I felt I could get out, and even then I didn't start to feel "normal" again for at least two.

Best of luck to you.

kselibrary76 · 02-11-2013, 02:39 PM

I'm be having exploratory parathyroid surgery on February 26th.

7 long years of high calcium (mid to high 10's...YOUR CALCIUM SHOULD NEVER BE HIGH AT ALL) and doctors telling me since my PTH was normal I should wait for higher numbers.

That was then, this is now. A progressive Endo and two surgeons ALL told me I have to have this taken care of.

I am anxious to feel better.

I'd see another doctor. From the three I've spoken to (my new team) they are surprised I hadn't been considered for this surgery before.

This disease can cause heart and kidney issues as well as osteoporosis.

Nothing to let go.

Desertmama · 02-12-2013, 12:20 PM

I just went back to the Endo yesterday. Now my calcium is at 11.4. I also have abnormal growth hormone (slightly high) and PTH is high.

Doctor said that I am a candidate for surgery, but wants to look into some other tests to see about my growth hormone and see if there's any other problems. Also doing another ultrasound of my thyroid for nodules.

I did stress to him that I am very miserable now. I quit my full time job because I could not handle it. I now work from home for only 4 hours per day and I still call in sick now and then.

He also said that he wants the bad parathyriod gland to grow bigger and the others will shrink so the surgeon can see which one to remove.

So, I'm going to get worse before I get better? How am I going to pay the bills if I cannot work?

Does anyone know of a good Endo in the Phoenix area?

My next appointment is in May.

kselibrary76 · 02-13-2013, 07:44 AM

Quote:

Originally Posted by Desertmama

I just went back to the Endo yesterday. Now my calcium is at 11.4. I also have abnormal growth hormone (slightly high) and PTH is high.

Doctor said that I am a candidate for surgery, but wants to look into some other tests to see about my growth hormone and see if there's any other problems. Also doing another ultrasound of my thyroid for nodules.

I did stress to him that I am very miserable now. I quit my full time job because I could not handle it. I now work from home for only 4 hours per day and I still call in sick now and then.

He also said that he wants the bad parathyriod gland to grow bigger and the others will shrink so the surgeon can see which one to remove.

So, I'm going to get worse before I get better? How am I going to pay the bills if I cannot work?

Does anyone know of a good Endo in the Phoenix area?

My next appointment is in May.

Why would he want to wait for the adenoma to grow larger? That sounds ludicrous to me. If you have an adenoma, regardless of the SIZE, you are not well, and high calcium is likely causing damage to other processes in your body.

I'd find a new doctor! Have you read Dr. Norman's page on parathyroid? it is an eye opener!

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