Dizziness after Parathyroidectomy

Yes, I'm seeing a difference with the shampoo and soap - hair not falling out, and my eczema and raw scalp have pretty much cleared up.

I'm getting back some cognitive abilities, too - I can read novels now in a couple of days. Not much, you might think, but after the way I was it's a huge improvement. Remembering things easier, too. And my horrible back pain is now down to annoying back pain. And no week-long migraines anymore (knock wood!). Also no longer need my walking stick inside, and I've ventured out without it on my better days.

Had several very very long flights yesterday to get home, and I'm both wired and tired, but I'm not in hospital. So I'm just going to crash til Monday when I have an appointment with my regular doctor and get my levels drawn. Took a few things out of the suitcases, but the rest of it will keep - I can't believe I'm still standing - so to speak - after over 16 hours of travel. So today is an expected crash, I guess.

I'm glad that you're doing better, too!

Hey, I know what you mean about reading....it's a passion of mine and I haven't been able to concentrate well enough to read for at least a year. I guess I need to give it another whirl to see if I am better able to concentrate now.

You said you had several long flights....and I remember reading you had your surgery in the States, so I'm assuming you are from out of the country....where are you from? I think it is great that you were able to get this taken care of here.

I can't remember where you had your surgery done, though...Anyways, I'm glad you're doing better, that is HUGE! I'm so happy for you.

Take the much needed crash time and let me know how your levels are doing when you get the results. I need to go in and have mine done, but have been putting it off...I hate the whole fasting for 12 hrs. b4, miss my coffee first thing in the a.m. LOL!

Take Care

Yeah, the tetimonials on Dr. Norman's site are the lucky ones. Post surgery for me was better the first 6 months after surgery! The last 2 weeks I've had so much neuromuscular weekness that I've been wondering what is going on???? Went for blood tests again!

I am two months post surgery and doing pretty good. How is everyone doing and what is your latest lab results?

Texgranny,

I am 2 mos post-op as well and finally starting to feel like I have more good days than bad. That is a huge improvement and I'm happy for it. My levels are all within the normal range.

I was starting to worry at the 1.5 mo. mark 'cause I still was having a lot of bad days. Now I seem to have turned a corner...2 weeks ago I started a good dose of vita D and I think this has helped tremendously.

Looking forward to complete health....hope the same for everyone!

Take Care

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.

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.

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.

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.

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??

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?

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....

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.

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.