Dizziness after Parathyroidectomy

Hey isn't that PTH a little high? Your calcium level is better than mine. Do you think you have another tumor?

I kinda thought so - ditto with the calcium - I'll bold the interesting part of the letter I got :

I have received your new labs and you are right they are all perfectly normal (I never said that - I wrote because I was concerned because they weren't normal!. ) It has been over 3 months since your operation; your body should have adjusted to the operation. I don’t think you can expect to get any more benefits. The doctors looked at and biopsied all 4 of your glands. They removed the most enlarged gland, the other 3 glands were perfectly normal. There is no other gland going bad. You need to look at other reasons for your symptoms beyond parathyroid disease.

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That's the news from them. Ever feel like you're being gaslighted? I do.

You know my calcium is 10.7 and my PTh is 5. The interesting part is I can't get a straight answer regarding my remaining gland. Dr P told my husband I had one gland left and it was normal. Dr N says I only have 1/2 gland remaining. Hence PTH is very low. I just don't understand why calcium remains high. I am praying that with the reduced calcium intake it will solve the problem. Did you ever see the surgical report sent to your pcp at home? I am demanding I see mine on next visit. This is not a fun disease and has many twists and turns....txg

I have a copy of the surgery report. And the pathologist report.

The name on the pathology report is Lugen Chen MD, so that might be who to get in touch with at the path lab at Tampa General. When I talked to the Florida Medical Board about investigating (the lady there agreed that something sounded a little off after I told her my story), she said that by law, they HAVE to give you copies of all your medical records - and I had no problem there. Haven't tried Dr N's office yet for all of those, so I don't know yet, but we'll find out soon enough.

She said they can subpoena them if the doctors or hospitals refuse to give them to you, but I don't think Tampa General would do that.

And there's this little gem from my surgery report (bear in mind in reality there were no lengthy discussions - well, you know Dr Norman - the only thing he told me was if I didn't have the tumour out I'd die, and then when he couldn't find it on the scan, he said there was an 80% chance he'd find it in surgery and did I want to go ahead. Yet my surgical report reads:

'After long discussions that we may not find a bad parathyroid gland or that we may not change her calcium and parathyroid hormone levels even after operating, we decided to proceed.'

Again, you know him. Did he tell you that even after surgery your calcium and PTH might well not change? It certainly isn't what he told me.

Also, your doctor may have copies of the pathology and surgery reports, so you can try him or her if that's easier than writing to TGH.

Curiouser and Curiouser, said Alice.

I so hope you get better - this majorly sucks. And I'm not liking my bouncing calcium levels, either. Before I had surgery it was down as low as 9.9 sometimes, but usually in the mid-10s. Not consistent. And while I'm glad it's down from the 10.8 or so where it was floating around before, I'd kind of prefer it if got into really normal range and stayed down, and if my PTH didn't keep going up - the highest it ever was before surgery was 34, I think. Now it's worse.

Ugh. Just ugh. I'm crossing my fingers that maybe it's just taking a while for both of us to stabilise, but I really amn't sure. But if your calcium is 10.7, then a PTH of lower than 10 does sound like something's working right - just your calcium is way too high. Ouch, hon.

I really want to find out what's going on, too. And we will.

In my phone consultation with Dr before surgery I was told all symptoms wouldn't go away after surgery. Never that my calcium would remain high. But I guess if you read between the lines if the calcium stays high you will always have symptoms. The best reading I have had since surgery was 10.2. I had been so sick for so very long and couldn't get a diagnosis at home. I still feel they were my last hope for a better health. I am not pleased with the after care, although the nurse tries to answer all my questions. I should have ask more questions BEFORE surgery. That is why I try to encourage everyone that is reading these posts to ask lots of questions before surgery and if you don't get answers, move on. I am 63 y/o and have lost lots of good years to this disease, but I am better than I was. Hope you see some improvement soon. You are in my prayers. Keep us posted...Txg

Did you go to Dr. Norman in Tampa?

If you're directing that question to either Texgranny or me, yes - we both did.

Leida: How are you? Hope things are better for you.

Lgar48: Yes we had surgery in Tampa. We both had different experiences to say the least.

Hi TexGranny -

Wish I could say I'm better, but I'm not. Was well enough today to get another set of tests done (I wish I could drag myself to the doctor/lab when I have those three week spells of barely being able to move instead of the three day respite I usually get during a month). So we'll know in about a week what the numbers look like - the ionised calcium has to be done at the hospital.

Gained back all the weight and then some even though I can't afford to eat every day, the diabetes has spun out of control (I didn't get it until well after I went hyperpara), as has my cholesterol, and I need to have some more tests for some more new and awful symptoms. So another bunch of pills to take. I'm not on calcium supplements - given how every test has come back so far, that would be suicidal.

At this point, I feel worse than I did pre-surgery six months ago. And there's no way to get it fixed in this country, and I can't afford to go to America again. So - same old, same old.

It sounds like you're doing a bit better - I am really happy to hear that.

Hi Leida: Sorry I missed your post. Hurricane Ike caused a power loss for us for days, but we are ok. Sorry to hear you are not feeling well. Well it has been 6 months and no miracles since surgery, but bone pain is still gone. I have gained lots of weight (ugh) and just need to exercise more. I have blood work end of October and I hope calcium is normal. I am just taking 1 supplement daily now. I guess at my age I am just about as good as I will ever be. Keep in touch and I will post new lab results when I receive them. Try to stay positive...Texgranny

So much damage from Ike - sorry to hear you got hit, too. I had a fairly good week last week, and my calcium was down to 9.8 and PTH 39 (still higher than before surgery, but lower than it was last time at 77 or so).

Crashing this week, but given that the 9.8 is the lowest calcium post-surgery we're being cautiously optimistic. Very cautiously. It could just be the way it goes inconsistent when you're hyperpara, but my other post-surgery reads have been 10.8, 10.2, and 11.3, I think (translating into American). This time it was 9.8, and an ionised calcium of 1.29 (1.17 - 1.32). Praying it's not a fluke and it's finally coming down for real. We should know within a few weeks.

I did find one case in the literature where somebody's calcium didn't drop for six months, and hoping I'm the second. Find out soon, I guess.

Just advise from Me DONT DO THE SURGERY TAKE ANYTHING ELSE BUT DONT DO THE SURGERY. I had it done and as many have told you your life will never be the same i also have the tingling and twitching all over my body i now suffer from depression and anxiety because of the surgrey. Because 2 days after the surgery i complained about tingling sensations in my leg and felling as if my vision is trembling the doctor didnt think anything of it because they signs there looking for is twiching in the tongue and tingling in the hands. Anyway They let me go home and not after i hour after being at home i had a hypocalcemiaattack . i could not talk my jaw looked up i could not use any of my muscles. Then spent the next 2 weeks in h ospital fightened i had just had a baby that was 3 months old i had to take careof and a 4year old girl Iwould think to myself i cant takecare of myself how can i take care of them how can i ever drive a car with the kids in car if i have another hypocalcemia attack,because you get that when you have low calcium in your blood how scarey. BECAREFUL AFTERTAKING OUT MY THYROID I FOUND OUT THAT MY PARATHYROIDS ARE'NT WORKING EITHER.
Good luck Guys

Hi from Kodger!
It's gonna be year paost double parathyroidectomy for me. I'll go through a period where I'm not too bad. Unfortunately, that never lasts. Always have those crappy days - which has turned into a couple of weeeks lately. I'm taking two citracel a day still. My doctors are no help here on any follow up. PTH checked today. Last time my phosphates were still down. Anyone else have this checked too?

Hi Texgranny



How are things this month? How many Citracal are you taking? Is there a certain time of day that you take them? Think it makes a difference when?

I'm taking 2 a day still but I'm wondering if it's too much? Haven't been feeling very good lately especially in the morning. Hope this is just a "rough spell" again. Last time it was this bad I just added a second Citracal to my day and things seem to get better. Not sure.

Got any advice?

Hi all. I am scheduled for surgery on November 26th. I was feeling kind of excited about this but after reading all of your posts it's scary. I am 31 years old and my calcium as 10.9 and my pth was 216...my 24hr urine calcium was 597. I've suffered from depression for nearly 10 years and i'm always tired and irritable. I'm really hoping that things will at least get some better after surgery. has anyone here had a good outcome? thanks