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texgranny
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 Posted: 05/25/08 - 17:19 Post subject: Vitamin D |
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Parathyroid patient,
Are you taking vitamin D and the calcium with vitamin D? I take two calcium/Vitamin D daily, but my vitamin D was low on last lab . Maybe I do need to take more. How much are you taking? Did you have surgery in FL? I had mine there on March 25th. So happy to hear you are feeling better. |
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texgranny
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| Posted: 05/28/08 - 17:54 Post subject: Re: Dizziness after Parathyroidectomy |
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| klaube1234 wrote: | | I had mini-surgery for parathyroid removal on 9/14/06. I was warned of tingling, etc. from the drop in calcium and was told it would last 2 or 3days. I am now 1 week post-op and feel HORRIBLE! I have intermittent dizziness, tingling over my whole body. I had my calcium level checked post-op it is 9.5. Prior to surgery it was 12.8. Is this normal, because it feels like I am DYING? |
Hello I know it has been sometime since you had surgery, but I wanted to know how you are now if at all possible. I am 2 months post op and have been doing pretty good, but I am having these crazy dizzy spells. I too feel like I am dying! My family doctor will dismiss this as he did all other symptoms before I had surgery. I am at a lost of what to do. My last labs were good except my vitamin D was low. My surgeon didn't want me to take any supplements. |
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Leida
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| Posted: 05/29/08 - 06:26 Post subject: |
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Well, I'm 10 weeks post-op, and have lost what little ground I gained. My calcium is up - 10,8, and my PTH is 40. Regular doctor is taking it quite seriously, but the surgeon swore at me and blew me off - he's abandoned my case.
Kinda scared at this point. I went off the calcium supplements two weeks after surgery, and I'm glad I did - they were making me sicker, and now I know why. |
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parathyroidpatient
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| Posted: 05/29/08 - 11:31 Post subject: Vita D |
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Hi Texgranny,
I have not taken the calcium for about 2 weeks now, my naturopathic doc prescribed me calcium gluconate, gone to 2 pharmacies which don't carry it, so I need to find out from her where to get it. Kind of dragging my feet as I think the calcium messes with my gut....
As far as the vita d goes, I take 2000 IU of D3 a day which I purchased from my naturo.
I had my surgery done by Dr. Stickney in Seattle. Had been contemplating going to FL, however, I sent an email to famous Dr. and his reply was extremely sarcastic....So, I looked at other options since I was concerned if I had problems post-op, that I may get the same response...Found Dr. Stickney and she is wonderful, end of story. |
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texgranny
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| Posted: 05/31/08 - 18:20 Post subject: |
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| Leida wrote: | Well, I'm 10 weeks post-op, and have lost what little ground I gained. My calcium is up - 10,8, and my PTH is 40. Regular doctor is taking it quite seriously, but the surgeon swore at me and blew me off - he's abandoned my case.
Kinda scared at this point. I went off the calcium supplements two weeks after surgery, and I'm glad I did - they were making me sicker, and now I know why. |
Leida, I hate to hear you are not feeling well 10 weeks post-op. I too am about 10 weeks post-op and still have bad days. My labs at 5 weeks showed my calcium a little high and my vitamin d level low. My surgeon does not want me to take Vitamin D supplements, but my family doctor does so I am at a lost of what to do. Glad to see your PTH level is normal. I have forgotten earlier post where you had surgery. Tampa?? |
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Leida
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| Posted: 05/31/08 - 21:58 Post subject: |
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| Yes, Tampa. I'm not too sure that a PTH of 40 is normal with a 10.8 calcium. My pre-surgery PTH was 34. It was never high, only the calcium was. But it's the calcium that's the worry, that's for certain. |
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texgranny
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| Posted: 05/31/08 - 22:18 Post subject: |
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| Leida wrote: | | Yes, Tampa. I'm not too sure that a PTH of 40 is normal with a 10.8 calcium. My pre-surgery PTH was 34. It was never high, only the calcium was. But it's the calcium that's the worry, that's for certain. |
Leida, My PTH was 16 before surgery and is 8 now. Kinda scary, because I only have one parathyroid left. I am having labs at end of June and somewhat anxious to see what they are. I still think 40 is in the low end of normal on PTH but 10.8 calcium is scary. Looks like we have the same surgeon and I have had NO response from him after surgery. His nurse has been very helpful and has answered all my questions. I was very naive and side effects after surgery NEVER occurred to me. I bought the whole Kit and Kobootle. I am awaiting my 10 years younger feeling..lol.. I continue to take calcium daily and only hope things will get better. What are your doctor's plans for you now? |
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texgranny
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| Posted: 06/01/08 - 11:01 Post subject: Re: Vita D |
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| parathyroidpatient wrote: | Hi Texgranny,
I have not taken the calcium for about 2 weeks now, my naturopathic doc prescribed me calcium gluconate, gone to 2 pharmacies which don't carry it, so I need to find out from her where to get it. Kind of dragging my feet as I think the calcium messes with my gut....
As far as the vita d goes, I take 2000 IU of D3 a day which I purchased from my naturo.
I had my surgery done by Dr. Stickney in Seattle. Had been contemplating going to FL, however, I sent an email to famous Dr. and his reply was extremely sarcastic....So, I looked at other options since I was concerned if I had problems post-op, that I may get the same response...Found Dr. Stickney and she is wonderful, end of story. |
Hi Parathyroid patient: Thanks for the info on Vitamin D. I have checkup this month. Hopefully things will get better. I have read several posts that people can't take the calcium. Guess I am lucky as I have no problem .Actually my stomach is better than it has been in years. That is somewhat confusing as vitamin D regulates the calcium in your stomach and my vitamin D level is low. Glad you found a good surgeon. My Dr is a little sarcastic, but he made me better. All I wanted was answers and a good and safe surgery. I got that. No hand holding, but I am pleased. I am working very hard to stay positive and get better. Good luck.... |
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Leida
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| Posted: 06/01/08 - 18:34 Post subject: |
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TexGranny -
40 is actually on the high side of normal for PTH, and I never had high PTH to begin with, just high calcium. And 10.8 calcium at 10 weeks when I'm taking no calcium supplements (had to give them up after two weeks cos they were making me feel even more hypercalcaemic) is not a good sign.
The good doctor in Florida said I was lying and my levels are perfect (they had been faxed to him before I wrote to him), and he will never communicate with me again. He has, in other words, dropped my case.
Dr Politz was kinder, but asked me to have the test results faxed to the office - so I asked my doctor's office to re-fax them.
At this point, I don't know what to do. Everything I've found in the literature says the most likely cause of this is that there's a tumour still in there that was missed. I found one report of a woman whose levels didn't come down for six months, but I don't know if I'm that exceptional.
I do know that second surgeries often involve venous sampling (which is a horror), and having to have your chest cut open as well as your neck to try and find the missing gland that's still misbehaving - one of mine was removed, and the other three were biopsied and pronounced normal, so it might be ectopic tissue.
The thought of going through all that on my own (I have no family), and being in an American hospital for a month or more, and how to come up with the money is scaring the hell out of me. And re-ops are tricky. The first tumour didn't localise on scans either here OR in Tampa.
Meanwhile, I am having levels drawn again this coming week (the calcium is still high, I've still got all my hypercalcaemic symptoms), and I will once again have my doctor fax them to Florida, and see if he can maybe get any useful information out of them.
If not, I am going to file a complaint with the Florida Medical Board. Not a lawsuit - I know I'd never win. But this is serious stuff, and aftercare was part of the deal - only when it's come down to it, aftercare has been non-existent. The non-professional manners, the swearing at me, the saying I am a liar isn't enough to complain about, but the abandonment may be.
Other than that, I do not know what to do. |
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texgranny
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| Posted: 06/01/08 - 19:02 Post subject: |
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| Leida: I am so sorry you are having so much trouble. .. I never had a high PTH level either. When I went into surgery I wasn't sure they would find anything, but I had traveled a long way too with great expense and I told him to go for it.I was shocked with the news of hyperplasia - three removed. I so liked Dr Politz too. My phone consult was with him and I saw very little of the other Dr. Very brief. As I have stated in previous post my labs at 5 wks post op calcium was higher than expected and my PTH was 8 or 9. When I emailed the nurse with concerns her response was the calcium pills are working. New lab work at end of June and I am very anxious. If calcium is still high I don't know where to turn. We must not give up. Try to stay positive. Just maybe we have not given it enough time. We are not a textbook case. Take care and let me hear from you. |
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SteadyHealth.com - Health Topics Forum Index -> Lymphatic & Endocrine system -> Thyroid Disorders
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