very weak and sleepy after parathyroidectomy
Posted , 61 users are following.
I had a parathyroid gland removed on Thursday (four days ago). The surgeon was very happy - PTH fell already during the operation and my calcium was normal when they discharged me. I have since developed pins and needles and have been taking calcium supplement.
The scar itself doesn't bother me at all and I don't need painkillers anymore, which is great.
However, I am still very weak and still mostly in bed. Is it normal? Am I expecting too much too soon? Is it to do with calcium maybe falling too low?
How many days should it take before I feel strong enough to even look after myself? When should I start to worry?
Thanks
5 likes, 93 replies
Retiedchemist ivil
Posted
SamuelB Retiedchemist
Posted
Retiredchemist, I had parathyroid surgery two months ago and my symptoms are unchanged. I'm still very tired, especially in the afternoon, and I have polyuria and polydipsia, which is thirst and peeing. You're right--some sources don't even mention these symptoms and yet they are considered classic symptoms. These symptoms are what brought me to the doctor in the first place about two years ago. Now my PTH is way down from where it was before the surgery and my calcium appears to be slowly falling and is now in the normal zone. But after two months I'm getting frustrated with still not feeling well, and I'm still drinking more than a gallon and a half of water a day. My endocrinologist has prescribed desmopressin which is a synthetic anti-diuretic hormone which is very effective in reducing my water intake as well as bathroom stops. She has not ruled out that I could have diabetes insipidus, which is what desmopressin is usually used to treat. (How could I be so unlucky as to have two similar yet unrelated illnesses at the same time? I just don't believe it.) I too have been wondering when is this all going to end and that's what brought me to this forum. I see that a couple of people said that it takes several months, so I guess I'll just try to hang in there.
Retiedchemist SamuelB
Posted
SamuelB ivil
Posted
Ivil, I had parathyroid surgery two months ago and my symptoms are unchanged. I'm still very tired, especially in the afternoon, and I have polyuria and polydipsia, which is thirst and peeing. You're right--some sources don't even mention these symptoms and yet they are considered classic symptoms. These symptoms are what brought me to the doctor in the first place about two years ago. Now my PTH is way down from where it was before the surgery and my calcium appears to be slowly falling and is now in the normal zone. But after two months I'm getting frustrated with still not feeling well, and I'm still drinking more than a gallon and a half of water a day. My endocrinologist has prescribed desmopressin which is a synthetic anti-diuretic hormone which is very effective in reducing my water intake as well as bathroom stops. She has not ruled out that I could have diabetes insipidus, which is what desmopressin is usually used to treat. (How could I be so unlucky as to have two similar yet unrelated illnesses at the same time? I just don't believe it.) I too have been wondering when is this all going to end and that's what brought me to this forum. I see that a couple of people said that it takes several months, so I guess I'll just try to hang in there.
Retiedchemist SamuelB
Posted
Retiedchemist SamuelB
Posted
SamuelB Retiedchemist
Posted
I am now 5 months after surgery and no change in the polyuria. Without desmopressin I go every half hour and still drink at least a gallon and a half of water every day, maybe two. With the drug I'm almost normal, but it wears off. The doctor has OK'd two doses a day which almost covers it. Seems I might have this for the rest of my life at this rate. Now the theory is that I have diabetes insipidus which is very rare, but apparently is not life threatening. I do seem less tired most of the time.
alan65290 ivil
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SamuelB alan65290
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I have not had my kidneys scanned. I've never heard of that. I have had extensive blood and urine tests. There seems to be nothing wrong there.
alan65290 ivil
Posted
See this site:
https://en.wikipedia.org/wiki/Diabetes_insipidus
A kidney scan is fairly cheap to be done privately and it removes one of the worries.
SamuelB alan65290
Posted
The article doesn't mention kidney scans anywhere that I could find
alan65290 SamuelB
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No, but diabetes insipidus is a kidney disease and it's worth checking that they are OK. A scan will identify cysts or stones in the kidneys which are commonly caused by HPT.
paulr57 ivil
Posted
hello
i saw your post and mi not sure how old this is.
i had 2 parathyroids removed over 6 months ago and calcium serum levels are still very low but in range.
weakness fatigue brain fog still going on. did you every recover ? how long did it take? was there something that was discovered that was missing/
Paul
SamuelB paulr57
Posted
Hi Paul, My calcium never went low after the surgery. In every test it is just barely within normal range. PTH is very normal, like 44 I believe. Used to be over a hundred. Surgery was over a year ago. One abnormal parathyroid removed. I think I feel better sometimes but other times I'm very tired. How can I tell if maybe this is just the result of being 60 years old now? I've never been this old before! Many days I feel fine though, like today. I had a sleep study a year ago to check if maybe I was just not sleeping well but they didn't find any serious sleep disruptions. I go to a top-notch hospital in Chicago but they don't seem to have any answers for me. I still have what seems to be diabetes insipidus and am taking desmopressin to stop the polyuria (frequent urination). That has never changed. Strange thing I learned is that two other people who grew up in my neighborhood when I did also had hyperparathyroidism. This is supposed to be a rare disease and three of us had it in a community of maybe 2000 people. LIving near Lake Michigan in the USA, drinking the lake water. Maybe it's polluted with something that causes it? My endocrinologist has no idea. Never heard of such a thing.
beth05 SamuelB
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Are you feeling better yet? I had 2 improvements immediately - the horrible sweats and heartburn are almost gone. This chronic fatigue is still so bad 5 days after surgery. I'm so tired and weak! How long before you saw improvement?
SamuelB beth05
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Hi Beth, I don't think I ever stopped feeling tired. Maybe something else is going on. I take naps a lot. Fatigue is now almost an everyday thing. My brother suggests I should go to the Mayo Clinic. My surgery was more than a year ago. I hope you have better results than me. The important thing is that my calcium is pretty normal now. Just below the allowable maximum.
beth05 SamuelB
Posted
I hope you get some answers. Life being so tired all the time isn't fun.