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hyperparathryoid
Hi,
I had one parathryroid gland removed 3/2009 due to an initial PTH level of 68 and calcium of 10.2. By the time I had the surgery, they thought they had found a small adenoma by scan; after V D supplements, my levels were 62 and 9.6 and they did a minimally invasive surgery.
After 1 1/2 years, my levels have come back at 9.9 and 84 with subsequent calcium levels fluctuating between 9.4 and 9.9 over 4 weeks time.
My pathology report after surgery said: 'enlarged hypercellular parathyroid gland consistent with parathyroid hyperplasia.'
It seems as if my symptoms are back and my latest bone scan is a tad bit worse than previous, with a spine T score of 2.4 (borderline osteoporosis on total).
I've been told to simply check levels again in a year. I don't understand the criteria being used here to determine when to treat and when not to.
Also, couldn't my calcium fluctuate quite a bit, explaining the symptoms I seem to have?
Thanks
I had one parathryroid gland removed 3/2009 due to an initial PTH level of 68 and calcium of 10.2. By the time I had the surgery, they thought they had found a small adenoma by scan; after V D supplements, my levels were 62 and 9.6 and they did a minimally invasive surgery.
After 1 1/2 years, my levels have come back at 9.9 and 84 with subsequent calcium levels fluctuating between 9.4 and 9.9 over 4 weeks time.
My pathology report after surgery said: 'enlarged hypercellular parathyroid gland consistent with parathyroid hyperplasia.'
It seems as if my symptoms are back and my latest bone scan is a tad bit worse than previous, with a spine T score of 2.4 (borderline osteoporosis on total).
I've been told to simply check levels again in a year. I don't understand the criteria being used here to determine when to treat and when not to.
Also, couldn't my calcium fluctuate quite a bit, explaining the symptoms I seem to have?
Thanks
Hi, I am just beginning my journey...I really hope you feel better soon. You may have already checked this out but...
parathyroid.com
is the best info on what to do about it and how to treat it. Many many doctors are still getting this wrong and in this day and age it is very sad that this can be a lot simpler, cheaper and most importantly less painful if every doctor worked like this.
Good luck
parathyroid.com
is the best info on what to do about it and how to treat it. Many many doctors are still getting this wrong and in this day and age it is very sad that this can be a lot simpler, cheaper and most importantly less painful if every doctor worked like this.
Good luck
Oh, I forgot. Hyperplasia, in simple terms means "over growth" or literally "excessive size". ~MM
Hi Fay,
-I know what you mean! I'm in the medical field and I didn't even know what the parathyroids were! (I vaguely remember their honorable mention in anatomy class, but nothing more than that...)
Yes, my PTH and calcium levels dropped within an hour after surgery -and stayed there for quite some time. My initial PTH was 165 and calcium was 11.8 (I was pretty sick) and it went to 45 and calcium of 8.5. The calcium stayed low for a long time but my PTH went up to 65 until the calcium level came up (like its supposed to!) Its been almost 4 years since my surgery and my levels have stayed consistent at PTH around 45-54 and my calcium at 9.2-9.5 . Just after surgery I had the "hungry bone" syndrome where the PTH stayed in the upper end of the scale, and I was hard-pressed to keep the calcium levels up because my bones were re-claiming it from my blood stream (sort of like a calcium vaccuum! During this I had awful symptoms of hypocalcemia.
Have you read Parathyroid.com? It was immensely helpful to me before and after surgery. Did you have a Sestamibi scan to conclude your diagnosis? If you had more than one tumor at that time, it would have showed up (if you had a good scan.)
I hope some of this helps. Another thought -only because I know that some of the tests they do can be damaging to the thyroid, -have you had ALL of your thyroid tests (TSH< Free T-3. Free T-4, thyroid antibodies) looked at? Thyroid stuff can certainly cause the calcium/PTH levels to go wonky as well. Hang in there! You know there is something going on and you need to sort out what. ((((((HUGZ)))))) ~MM
-I know what you mean! I'm in the medical field and I didn't even know what the parathyroids were! (I vaguely remember their honorable mention in anatomy class, but nothing more than that...)
Yes, my PTH and calcium levels dropped within an hour after surgery -and stayed there for quite some time. My initial PTH was 165 and calcium was 11.8 (I was pretty sick) and it went to 45 and calcium of 8.5. The calcium stayed low for a long time but my PTH went up to 65 until the calcium level came up (like its supposed to!) Its been almost 4 years since my surgery and my levels have stayed consistent at PTH around 45-54 and my calcium at 9.2-9.5 . Just after surgery I had the "hungry bone" syndrome where the PTH stayed in the upper end of the scale, and I was hard-pressed to keep the calcium levels up because my bones were re-claiming it from my blood stream (sort of like a calcium vaccuum! During this I had awful symptoms of hypocalcemia.
Have you read Parathyroid.com? It was immensely helpful to me before and after surgery. Did you have a Sestamibi scan to conclude your diagnosis? If you had more than one tumor at that time, it would have showed up (if you had a good scan.)
I hope some of this helps. Another thought -only because I know that some of the tests they do can be damaging to the thyroid, -have you had ALL of your thyroid tests (TSH< Free T-3. Free T-4, thyroid antibodies) looked at? Thyroid stuff can certainly cause the calcium/PTH levels to go wonky as well. Hang in there! You know there is something going on and you need to sort out what. ((((((HUGZ)))))) ~MM
Hi,
My Vit D level this week was 20, which is low. I have been trying to take 1200 mgs of Calcium and 400 units of D every day, but the Calcium tablets make me feel bad- upset stomach, bloated, etc., so I have to push myself to take them.
Actually, all the symptoms of frequent urination, extreme fatigue and the blues came back, but since I had had the surgery previously, it didn't register that the hyperpara might be back. I had an annual physical workup and the levels showed up in that and I realized hyperpara felt like this.
I was under the impression that hyperplasia most likely meant other glands would be involved. Does a Doc usually respond to these posts? I would like to get some clarity on this.
It seems my calcium settled initially, as yours did, but not my PTH level. Did yours go down? Also, it seems that you are taking considerably more calcium and D than I was given...since I have such poor bone density, I would think that might be important.
Thanks for your input, it does help to read the posts by others, since no one I know has even heard to this!
Fay53
My Vit D level this week was 20, which is low. I have been trying to take 1200 mgs of Calcium and 400 units of D every day, but the Calcium tablets make me feel bad- upset stomach, bloated, etc., so I have to push myself to take them.
Actually, all the symptoms of frequent urination, extreme fatigue and the blues came back, but since I had had the surgery previously, it didn't register that the hyperpara might be back. I had an annual physical workup and the levels showed up in that and I realized hyperpara felt like this.
I was under the impression that hyperplasia most likely meant other glands would be involved. Does a Doc usually respond to these posts? I would like to get some clarity on this.
It seems my calcium settled initially, as yours did, but not my PTH level. Did yours go down? Also, it seems that you are taking considerably more calcium and D than I was given...since I have such poor bone density, I would think that might be important.
Thanks for your input, it does help to read the posts by others, since no one I know has even heard to this!
Fay53
Hi!
I'd be wondering if you don't have a second one in there...They did find the first one, correct? As you know, if your PTH is elevated, the calcium should be the polar opposite. What is your ionized calcium reading and what other symptoms are you having? There are other things that can affect the calcium/PTH levels as well like pituitary issues.
Are you still on calcium supplements? How much vitamin D?
I can only relate my own experience. I had a parathyroid tumor removed in April 2007 and it took nearly 6 months to get my calcium levels to settle. I still take 2000 mg of calcium citrate/day and also 5000 units of vitamin D3 (since Aug 2010 for low vitamin D). Rarely do I have have any issues related to calcium issues now. I hope this helps! ~MM
I'd be wondering if you don't have a second one in there...They did find the first one, correct? As you know, if your PTH is elevated, the calcium should be the polar opposite. What is your ionized calcium reading and what other symptoms are you having? There are other things that can affect the calcium/PTH levels as well like pituitary issues.
Are you still on calcium supplements? How much vitamin D?
I can only relate my own experience. I had a parathyroid tumor removed in April 2007 and it took nearly 6 months to get my calcium levels to settle. I still take 2000 mg of calcium citrate/day and also 5000 units of vitamin D3 (since Aug 2010 for low vitamin D). Rarely do I have have any issues related to calcium issues now. I hope this helps! ~MM
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