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Post Parathyroidectomy Hot Flashes
About a month ago I went through a second parathyroid surgery for persistent hyperparathyroidism. It turned out that hyperplasia was present and I had 3 glands removed.
I believe the hyperparathyroidism has been present for 10 to 12 years. I also have fairly resistant Hashimoto's disease (hard to manage) and moderate to severe proximal myopathy.
Post surgery I had a lot of complications and my endocrinologist began treating me for some strange thing called Hungry Bone Syndrome (HBS) The supplements he started have helped many of the horrible post-surgical symptoms.
However, I am still struggling with wicked, wicked hot flashes and sweat attacks. These are pretty non-stop.
I've been keeping a symptoms log and can't link it to anything external.
My endo says I just haven't given it long enough, but I am getting really drained and hopeless feeling from this ongoing barrage of non-menopausal hot/sweat flashes. (total hysterectomy about 10 years ago)
Has anyone had any experience with this? Is there anything that helps?
Any suggestions would be appreciated.
Thank you.
I believe the hyperparathyroidism has been present for 10 to 12 years. I also have fairly resistant Hashimoto's disease (hard to manage) and moderate to severe proximal myopathy.
Post surgery I had a lot of complications and my endocrinologist began treating me for some strange thing called Hungry Bone Syndrome (HBS) The supplements he started have helped many of the horrible post-surgical symptoms.
However, I am still struggling with wicked, wicked hot flashes and sweat attacks. These are pretty non-stop.
I've been keeping a symptoms log and can't link it to anything external.
My endo says I just haven't given it long enough, but I am getting really drained and hopeless feeling from this ongoing barrage of non-menopausal hot/sweat flashes. (total hysterectomy about 10 years ago)
Has anyone had any experience with this? Is there anything that helps?
Any suggestions would be appreciated.
Thank you.
It is unfortunate they didn't test for Free T3 rather than Total T3. Total T3 is outdated and not nearly as revealing as Free T3, which correlates best with hypo symptoms.
Your Free T4 is way too low n the range. Recommended is about middle of the range at minimum. If your Total T3 is indicative of your Free T3, then it would also be way too low in its range.
I suggest that you should ask the doctor to test for Free T3 and explain that you have symptoms that may be due to low thyroid hormone levels, and that Free T3 largely regulates metabolism and many other body functions. I would also suggest testing for B12 and ferritin. Hypo patients are frequently too low in the ranges for those as well.
As you proceed, keep in mind that a good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T4 and free t3 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results, and especially not TSH. Many members say that relief from hypo symptoms required Free T4 at the middle of its range, at minimum, and Free T3 in the upper third of its range, or as necessary to relieve symptoms. You are going to need to find out if the doctor will treat clinically as described. If not, then you will need to find a good thyroid doctor that will do so.
Your Free T4 is way too low n the range. Recommended is about middle of the range at minimum. If your Total T3 is indicative of your Free T3, then it would also be way too low in its range.
I suggest that you should ask the doctor to test for Free T3 and explain that you have symptoms that may be due to low thyroid hormone levels, and that Free T3 largely regulates metabolism and many other body functions. I would also suggest testing for B12 and ferritin. Hypo patients are frequently too low in the ranges for those as well.
As you proceed, keep in mind that a good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T4 and free t3 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results, and especially not TSH. Many members say that relief from hypo symptoms required Free T4 at the middle of its range, at minimum, and Free T3 in the upper third of its range, or as necessary to relieve symptoms. You are going to need to find out if the doctor will treat clinically as described. If not, then you will need to find a good thyroid doctor that will do so.
I should have put in the previous comment that my TPO is always high. Current high is 219
I take Synthroid 100 mcg T3 96, T4 0.9 TSH 0.60 I didn't see that you wanted that. So sorry.
If TSH is the only thyroid test done, I can tell you right off the bat that you need a good thyroid doctor. Are you taking thyroid meds? If so, what type and daily dosage?
Current test:
TSH 0.20, Vitamin D 49.5, Calcium 9.5 . PTH 29 B12 > 2,000
Previous testing (slight variances for over 8 years)
TSH 0.65 Vitamin D 22.2 Calcium 11.2,
I feel just generally yucky and totally lethargic but the absolute worse thing is these uncontrollable sweats and hot flashes. It makes my surgically induced menopause feel like baby stuff.
Immediately after surgery I was vomiting, dizzy, passing out, tingling hands, and around my mouth. It was rough. The endocrine doctor said it was HBS and started me on calcitrol, D and magnesium. That helped most of those symptoms.
The first adenoma I had removed was last November and it was like a miracle for about 3 weeks and then the bone pain, headaches, exhaustion, etc. came back.
This surgery they found the remaining glands had hyperplasia.
I also have a degenerative small fiber neuralgia that is really painful in my shoulders, arms and hands but after nerve biopsies they say it is not linked to the long time parathyroid issue.
My brain is scattery. I hope this makes sense.
TSH 0.20, Vitamin D 49.5, Calcium 9.5 . PTH 29 B12 > 2,000
Previous testing (slight variances for over 8 years)
TSH 0.65 Vitamin D 22.2 Calcium 11.2,
I feel just generally yucky and totally lethargic but the absolute worse thing is these uncontrollable sweats and hot flashes. It makes my surgically induced menopause feel like baby stuff.
Immediately after surgery I was vomiting, dizzy, passing out, tingling hands, and around my mouth. It was rough. The endocrine doctor said it was HBS and started me on calcitrol, D and magnesium. That helped most of those symptoms.
The first adenoma I had removed was last November and it was like a miracle for about 3 weeks and then the bone pain, headaches, exhaustion, etc. came back.
This surgery they found the remaining glands had hyperplasia.
I also have a degenerative small fiber neuralgia that is really painful in my shoulders, arms and hands but after nerve biopsies they say it is not linked to the long time parathyroid issue.
My brain is scattery. I hope this makes sense.
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