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I have a relative I'm taking care of who is dying of incurable hyperparathyroidism. On top of the confusion that comes with this disease, she takes a lot of hydromorphone which adds to her fog. How long can does a person usually last with this disease? She sleeps almost 24 x 7, waking only to eat and go to the bathroom. Hospice has been wonderful about bathing her and supplying most medications, her basic needs are fully met. I hate to sound callous but I have to make plans on whether or not to shut down my apartment in Thailand if she's going to continue past March 2019. Hospice and Google give no clear answer, I'd like to connect with someone who has gone through or is going through this disease.

Hi Hawkesk

I had parathyroid surgery recently and had a parathyroid gland removed. I've also been trying to find out information about hyperparathyroidism. There's two websites that look very useful but I've still to get on them properly which I will do once more recovered from my operation. The websites are:. www.hyperparathyroiduk.com and also hyperparathyroidukactionfor change.blogspot.com Hope this helps. Best of luck.
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This OP has not been back since November.
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Hi, sorry to hear about your relative. I don't think the previous answers are correct. Hyperparathyroidism has nothing to do with the thyroid. It occurs when one (or more than one) parathyroid gland becomes overactive, produces too much parathyroid hormone, which causes too much calcium in the blood. Hyperparathyroidism is cured by surgery to remove the overacting glands. It is vital to get an experienced surgeon in parathyroidectomies to do this. I have never heard of the condition being untreatable. Perhaps try googling parathyroid to find out information about the condition, particularly paying attention to blogs and chat rooms from people who actually have the condition. Often the medical profession have out of date or misinformation about this condition. It is an endocrine disease that has nothing to do with the thyroid. Best of luck.
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Ok, blew off the dust of med books, did research: Hyperparathyroidism is a secondary disease caused by a primary disease or injury.

Such as Herpes Zoster, Stroke, Mini-Stoke, injury in the neck, some cancers, and there are a few others.

Hyperparathyroidism is caused my nerve damage due to lack of blood around the thyroid which in turn causes sensitivity to the person senses.
This is in some cases treatable, in most cases manageable. There is no cure.

So, there has to be a primary disease or injury that is causing the declining condition. You are missing something, something the Dr or hospice is not telling you.

Someone taking hydromorphone can end up sleeping as much as you are saying this person is, especially if this person is up in age, or the dosage is to high, or having a bad reaction to it.

I would talk to this persons Dr and/or hospice because from what I have read in your post and in my research there is a big piece of the puzzle missing.

I hope you find the answers that your looking for. If you have more information maybe I would be able to help you more.

Good Luck!
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Thanks. We're going through this in California, my apartment is in Thailand. I am making plans to bring back as much as I can and liquidate the rest in March. It would appear we're in this for the long haul.
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JoAnn29 Nov 7, 2018
So sorry.
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My Mom had Graves desease. This has to do with the thyroid being hyper. Mom was put on medication to slow it down. Her numbers became normal until her death at 89.

I just read about your Aunts desease. It says its curable and rarely do you die from it. Its a tumor that can be removed. Are you sure your Aunt doesn't have thyroid cancer. People can die from it but if caught early enough the thyroid can be taken out and then you take hormone treatments the rest of your life. I would ask some questions.

Isn't there someone else who can take over Aunts care?
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Hawkesk Nov 7, 2018
Thanks, but she's had these tumors removed 10 times (!). The last surgery was unsuccessful and the tumors exploded throughout her body. She is very ill, and it's lingering. Graves disease is not hyper-PARA-thyroidism. Thank you for your input.
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Say you were to wrap up the apartment anyway, and do it now; what would you have to do about having a place to live if it's all over by Christmas? Would it cause major problems, or be a dreadful waste?

Being risk and ambiguity averse myself, that's what I'd want to do. I doubt if even people who are sharing your experience can help you with a reliable prediction.

Good idea to find a specific support group anyway, though. Best of luck.
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Reply to Countrymouse
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I'm sorry Hawk, I don't know anything about an untreatable form of this condition, I assume she is dying from the complications caused by having it for years? I can only tell you that I've seen for myself that people con last an incredibly long time doing nothing more than eating and sleeping if they are otherwise stable, there are a couple of women who were already in that state when my mom entered the nursing home a year and a half ago and my mom has predeceased them. Hospice and her doctors won't give you a precise timeline but I would think they should be able to narrow it down somewhat. Could you sublet your apt to a friend or student?
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