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Old 06-02-2011, 01:32 PM   #1
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cheye1 HB User
How bad does it get?

Hi. I'm 41 years old and was just diagnosed with an adenoma and the doctor and I are on a "wait and see" right now, I go back next month and he will try to convince me to have surgery. He says surgery and I say no. (I have no insurance and can not afford to have it done.) My PTH is elevated and my calcium is at the high end of the normal range.
My doctor went through a whole laundry list of symptoms with me and those can be explained by other things going on in my life right now.
how bad does it get down the road? I'm exhausted right now and have no energy, I'm moody (was before too) I've got aches and pains (that can be from other things though), I have trouble concentrating and remembering things.

Any body have had to wait and try to save up some money for the surgery like me?
Thanks

 
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Old 06-03-2011, 07:04 PM   #2
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mslux HB User
Re: How bad does it get?

You are actually pretty lucky that your dr diagnosed it and went through the symptoms with you. My dr did the same two years ago with me before I knew that people suffered with the symptoms for years and even with a diagnosis dr's were still hesitant to act.

I know they will go with the "wait and see" approach- but I dont know what they are planning to "see" the tumor doesnt go away- it has to be removed.

Its hard to say how bad it will get since the symptms vary for each person. I didnt have many, but my sister had been complaining of the symptoms for a very long time-once i was diagnosed, her symptoms sounded like the ones that fit this- and sure enough she had one too- she improved rapidly once it was removed. She had a huge amount of hairloss and started getting regrowth almost right away- the fatigue in both of us is all but gone.

You can probably deal with it for a period of time, but if at all possible think about getting the surgery-now that you know it will have to be done at some time or other- are they monitoring the calcium levels and vit d?

Forgot to add that she had the same concentration and "brain fog" issues as she called it- and she had quite a bit of improvement with that after her surgery.

Last edited by mslux; 06-03-2011 at 07:17 PM. Reason: add paragraph

 
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Old 06-03-2011, 07:19 PM   #3
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cheye1 HB User
Re: How bad does it get?

Hi Mslux.

Thanks for your suggestions. The doctor is waiting because I told him that I wasn't having surgery (I can't afford to have surgery). He was ready to do it now.
I didn't think I had any symptoms but I guess I do. They are so general that they could be for anything. I didn't go to the doctor's for any complaint. He monitors my thyroid and while palpating it, felt it was enlarged. He waited until my next visit to order an ultrasound that showed that the thyroid wasn't enlarged, it was the parathyroid.
I'm hoping that I can hold off having the surgery until I can afford to buy insurance or to pay for the surgery itself.
I'm at a loss here. Oh, yes, the doc is monitoring all my levels. he's on top of things.
I'm not.

Last edited by cheye1; 06-03-2011 at 07:20 PM.

 
Old 06-06-2011, 07:48 PM   #4
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kavonv HB User
Re: How bad does it get?

I put it off 2 years, trying everything. Finally, my "second opinion" endocrinologist persuaded me to have it done, and I'm so glad. That was 2 years ago, at University of Michigan, by Dr. Paul Guager. My back had been constantly so sore that I'd have my grown daughter walk on it for temporary relief. After surgery, NO SORENESS!! I felt 10 years younger. Without drugs, but with 1000 mg of Citracal daily, my bone density increased 4% that following year. The bone density test after the second year showed osteoporosis, so I'm back on 70 mg. of Actonel/week. The surgery cost $16,000.

 
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cheye1 (06-06-2011)
Old 06-06-2011, 08:02 PM   #5
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cheye1 HB User
Re: How bad does it get?

Thanks Kavonv,

I'm looking into the surgery but the price is getting in the way. I keep having symptoms that I'm not sure if it's from the parathyroid or if it's power of suggestion. I don't believe I was having symptoms until the doctor said what I was to expect.
I will try to get it done asap.

 
Old 06-07-2011, 07:05 PM   #6
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kavonv HB User
Re: How bad does it get?

Quote:
Originally Posted by cheye1 View Post
Thanks Kavonv,

I'm looking into the surgery but the price is getting in the way. I keep having symptoms that I'm not sure if it's from the parathyroid or if it's power of suggestion. I don't believe I was having symptoms until the doctor said what I was to expect.
I will try to get it done asap.

 
Old 06-07-2011, 07:12 PM   #7
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kavonv HB User
Re: How bad does it get?

I had insurance. Mayabe you can work out a payment plan with the hospital. My pth level was over 350 before they took out the golf-ball sized gland. I got my singing voice back, and have lost 20 pounds since then. It was my first surgery, at 56 years old, so I was scared. Make sure that you eat only soft stuff after the surgery.

 
Old 06-07-2011, 07:59 PM   #8
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cheye1 HB User
Re: How bad does it get?

Thanks again. I'm looking into a clinic for those without insurance.
I will keep the soft foods in mind.
I'm a bit scared but I feel it will go well, once I get the ball rolling, that is.
I had surgery once when I was a child to remove my tonsils. I remember nothing of it though (maybe I blocked it out because of the trauma LOL).

 
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Old 12-07-2011, 08:49 PM   #9
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walkingmedley HB User
Re: How bad does it get?

I know this post is from a couple of months ago but I wanted to add to it. Please dont put it off! Hyperparathyroid disease and the tumor is something that will not go away on its own and it will only get worse. My mother wasnt diagnosed until 2 months ago and by then her disease was so severe she had acute renal failure twice, a stroke, and severe osteoperosis along with horrible pain all from hyperparathyroidism. All this at the age of 49. She had surgery about a month after her stroke and diagnosis.
She had no isnurance and surgery with Dr. Norman in Tampa cost about $11,000 but it honestly saved her life.We are looking forward to recovery now.

I dont want to see anyone going through what she has gone through, and if you are diagnosed at an earlier stage, please dont put it off...

 
Old 12-08-2011, 09:45 AM   #10
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kavonv HB User
Re: How bad does it get?

Did you have the surgery yet?
Quote:
Originally Posted by cheye1 View Post
Thanks again. I'm looking into a clinic for those without insurance.
I will keep the soft foods in mind.
I'm a bit scared but I feel it will go well, once I get the ball rolling, that is.
I had surgery once when I was a child to remove my tonsils. I remember nothing of it though (maybe I blocked it out because of the trauma LOL).

 
Old 12-08-2011, 01:55 PM   #11
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cheye1 HB User
Re: How bad does it get?

Sorry I've not been on in a while. I have not had the surgery yet. My new doctor at the clinic says he won't do the surgery until I meet some criteria. My levels don't meet the requirement yet. perhaps when I see him next they will be. I am looking forward to feeling better.

 
Old 12-08-2011, 01:57 PM   #12
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cheye1 HB User
Re: How bad does it get?

Thanks for the response. I am trying to get the surgery done but I've got to wait for the doctor to decide to do it. I don't meet the criteria as of yet. In the mean time, more waiting.....

 
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