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Dizziness after Parathyroidectomy thread.

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Hi All,
Great to have found this site.... posted on the same thread but it got full and now I have to type it all over!!! Oh well.... here is our situation

My dad had parathyroidectomy last week. Pre Op labs were calcium 10.1 and PTH @500.

Removed 3 parathyroids. Felt great first day after surgery. Lab #'s were calcium 8.1 and PTH 40 post op. He was hypocalcemic. started supplements and helped a bit but still suffer from anxiety and depression fatigue. Did have tingleing after he got home and we didnt know about Calcium supplement and began that right away and it seemed to help a little bit w/ tingling. Bone pain was pretty much gone.

Couple days post op wound up in ER because he just didnt feel right. Though he may need IV Calcium considering his sensation of tingleing weakness ect... that is when we found his calcium was 8.3 and PTH was 140. PTH went up after surgery.

He is in stage 3 of kidney disease. Dont know if that has anything to do w/ the problem of symptoms. His Mg, phosphates seem to be pretty close to normal and ionized Calcium was a slightly elevated.

Surgen said that his numbers are not bad enough to make him feel so sick and that he should feel ok with the numbers we got from ER visit.

She is sick of us calling her. But its hard not to when he feels so bad. Sometimes he has a bit of time when he feels ok.

What do you all think of this situation... I would love to hear you opinions.
Thanks!!!
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Hi PT Warriors: I also had three parathyrois removed last March. Hyperplasia parathyroid, so we know he doesn't have another tumor. His PTH was the highest I have ever read about. I never had hypocalcemic because my surgeon had me start calcium supplements immediately. I hope he is still taking them, it is vital that he do so. Citracal is a good source. I would suggest a multi vitamin also. I know nothing about kidney disease, but many people with HPTH have the disease. Recovery is different for everyone and he is just 1 week post op. Too bad the Dr is sick of you calling, he is your Dad and get answers when you need them. He is lucky to have you as a health care advocate. Best wishes for a speedy recovery...txg


**edited by moderator**
**Texgranny, please refrain from posting web addresses**
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Hi Texgranny,
How are you feeling? Its so hard to know if my father is going to be like his old self again. He had this problem going on for at least five years.
He suffered all that time with bone pain, anxiety, depression (depression most of all during the last perhaps 3 years or so. It was us, his daughters, that looked deeper into what the doctors were telling us and because we educated ourselves about this we actually told the doctors what tests we wanted and they did it and found he had a tumor to be removed and thru exploring the rest of the glands during the surgery, found that the other three were enlarged. I only wish when we were told he had hyperparathyroidism 5 years ago, I did more then. I put blind faith in his doctors and it was so wrong to do so.

I am completely beside myself about how negligent his doctors are about this. They knew his PTH was that high but calcium never rose too high it only reached the highest of 10.3. That to them is not too high and they kept giving us meds like Zemplar and Calcitriol to "supress" the parathyroid hormone...... it was never going to work. He needed the opertation. If we did not do our research we would still be going down the same path of treatment and his symptoms would be getting worse and worse. Let me tell you the worst part.... We live 25 minutes from Boston Massachusetts. There are some of the best hospitals and doctors in the country there.... Beth Isreal, Dana Farber, ect... We took him there and they are the ones who did not know how to diagnos and treat this problem.... oh oh.... this starts to infuriate me, sorry! Anyways, he has spent 5 years in a mystery of symptoms that never had to be!!!!

Thanks for the link, Iwill check it out.
Sorry to be so irritated while writing, I will be mellow in future posts!

Sincerely,
Dad's Daughters
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PT Warriors wrote:

Hi Texgranny,
How are you feeling? Its so hard to know if my father is going to be like his old self again. He had this problem going on for at least five years.
He suffered all that time with bone pain, anxiety, depression (depression most of all during the last perhaps 3 years or so. It was us, his daughters, that looked deeper into what the doctors were telling us and because we educated ourselves about this we actually told the doctors what tests we wanted and they did it and found he had a tumor to be removed and thru exploring the rest of the glands during the surgery, found that the other three were enlarged. I only wish when we were told he had hyperparathyroidism 5 years ago, I did more then. I put blind faith in his doctors and it was so wrong to do so.

I am completely beside myself about how negligent his doctors are about this. They knew his PTH was that high but calcium never rose too high it only reached the highest of 10.3. That to them is not too high and they kept giving us meds like Zemplar and Calcitriol to "supress" the parathyroid hormone...... it was never going to work. He needed the opertation. If we did not do our research we would still be going down the same path of treatment and his symptoms would be getting worse and worse. Let me tell you the worst part.... We live 25 minutes from Boston Massachusetts. There are some of the best hospitals and doctors in the country there.... Beth Isreal, Dana Farber, ect... We took him there and they are the ones who did not know how to diagnos and treat this problem.... oh oh.... this starts to infuriate me, sorry! Anyways, he has spent 5 years in a mystery of symptoms that never had to be!!!!

Thanks for the link, Iwill check it out.
Sorry to be so irritated while writing, I will be mellow in future posts!

Sincerely,
Dad's Daughters




Dear daughters: I would very much like to know how your father is doing.
Thanks..txg
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I just had surgery this past Tuesday. Let me tell you, after researching parathyroid disease on the web via Dr. Normans site. I felt like there was hope for me. I am a 41 year old male. I feel as if the site is quite misleading and they should post more post op testamonials. I was ready to go back to work Monday! 2 days after surgery, I was going to watch my sons' in the state choir festival. Bad move. We started down the road and all the sudden my world became quite dizzy. I started tingling all over. My wife drove me to the ER and they checked my calcium and PTH levels. They were in normal range. I had 2 surgeons operate on me and both agreed that it was/is my body not used to the lower levels of calcium in my blood. I was sent home. The scary thing is, I do not remember any of it. I am a supervisor in a warehouse and my wife was/is expecting me to return to work tomorrow after my recheck with the surgeons. I had high hopes of returning to work very soon as well. I do not know how I would even be able to drive safely to work. My wife thinks that I am making this up and it is hard to explain What I am feeling. I am glad that I did not spend all that money to travel to Tampa to feel the same way that everyone else who has posted here. I am still in the fog. Someone please tell me that there is hope. I have bills to pay and my oldest will be graduating from High school at the end of the month. I have much to do to get ready for the festivities and this is causing friction in my marriage. HELP!
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it is exactly one week after my surgery to remove one parathyroid adenoma. I got the okay to return to work on Thursday with restrictions. I told the surgeon that I get dizzy all the time and break out sweating. He said my body is trying to adjust. My levels were again in the normal range. I love to drive and for the first time in my life, I am scared. It is taking everything I have in order to concentrate on writing this! I hope to feel better soon.
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Guest: Are you taking any calcium supplements? I would take all salt and caffeine out of your diet as that can trigger dizziness. Also try a multi vitamin. When will you have post op labs done? Yes, your body is trying to adjust. What were your calcium and PTH levels before surgery? Recovery is different for all of us. One week post op, don't be so hard on yourself. I would check with Dr also about VitD levels and ask about taking B6 vitamins for dizziness. Best of luck. txg
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I am one week post operation that removed one parathryoid and possibly another. My surgeon said the sestamibi probe was not working correctly, so he had to search a little more on my same side for another bad parathryoid. He had to remove a little thyroid tissue to do so. The surgery appears to be a success since my readings are now normal.

I was concerned because I also have researched the Dr. Norman website. I could not afford to go to Florida. My surgery was done by a local home town ENT who is the best in our area...he does not do A LOT of these, but he has had experience for over 34 years and he convinced me he could do the job successfully.

I was hoping to bounce back immediately, too. But, realize, we have SURGERY to our body. And this is a shock to our system! It has been only one week, but each day I do get better. I still have some pain when I swallow because he had to go deep into the throat, in my case. This all takes TIME to heal. I also feel dizzy at times. My blood results are all normal now, too. So, I know it is not my calcium.

My logical opinion is that we all expected to bounce back to normal almost immediately. And we are impatient. I think we should look on this as SURGERY and respect that our bodies need time to heal. Listen to your body. If it says, "I am tired."..then rest. My husband, too, has been impatient with my recovery. But, my God, it has only been a week. I am going to give myself as much time as I need. I would think that if I rest as needed, and resume my activities when my body says to, that I should feel lots better in one more week. AND hopefully after a month post op I will feel normal again.
Hang in there, all of you. Respect your body and do what it takes to heal well!
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Guest wrote:

I am one week post operation that removed one parathryoid and possibly another. My surgeon said the sestamibi probe was not working correctly, so he had to search a little more on my same side for another bad parathryoid. He had to remove a little thyroid tissue to do so. The surgery appears to be a success since my readings are now normal.

I was concerned because I also have researched the Dr. Norman website. I could not afford to go to Florida. My surgery was done by a local home town ENT who is the best in our area...he does not do A LOT of these, but he has had experience for over 34 years and he convinced me he could do the job successfully.

I was hoping to bounce back immediately, too. But, realize, we have SURGERY to our body. And this is a shock to our system! It has been only one week, but each day I do get better. I still have some pain when I swallow because he had to go deep into the throat, in my case. This all takes TIME to heal. I also feel dizzy at times. My blood results are all normal now, too. So, I know it is not my calcium.

My logical opinion is that we all expected to bounce back to normal almost immediately. And we are impatient. I think we should look on this as SURGERY and respect that our bodies need time to heal. Listen to your body. If it says, "I am tired."..then rest. My husband, too, has been impatient with my recovery. But, my God, it has only been a week. I am going to give myself as much time as I need. I would think that if I rest as needed, and resume my activities when my body says to, that I should feel lots better in one more week. AND hopefully after a month post op I will feel normal again.
Hang in there, all of you. Respect your body and do what it takes to heal well!




Guest, I so agree give your body time to heal. Recovery is different for all of us no matter where you had it done. Best of luck to you...txg
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Well, now it is another week...and I do feel better. I am now 2 weeks post op. But I still feel a lump in my throat and see a lump near my scar. I still feel pain when I swallow and if I bend over a certain way. In other words, I am still not back to normal. My voice is hoarse and my throat gets very sore if I talk much. So, I looked on line for more information and I did find out that some recoveries can take 8 weeks or more. I found out that the lumps go away. I guess it is all a matter of healing! And it takes time.

I go to the surgeon in 10 days; he is having me do more blood work to make sure my readings are still ok. I do not feel dizzy anymore. And my energy is returning. I am glad I had the surgery.

I am eating a lot of calcium rich foods...but not taking any supplements regularly. My calcium was in the 9's after surgery. So, my surgeon said I did not need to. And so far so good...once in awhile I will take a one a day supplement and I try to make sure I get my daily requirement of Vit. D (1000 IU) and calcium.
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It has been one month since my parathyroid surgery...my home town experienced surgeon removed one of my parathyroids...maybe two. My calcium is still 9.4, but my thyroid hormone is down. I should have a TSH reading around 2 or so...and it is almost 4. Norm is up to 5, but, my surgeon said he wants to see it back to 2 or so. So he put me on 25 mcg of generic synthroid...a synthetic thyroid hormone. I do NOT like taking pills...but he said my thyroid MAY heal in time and I can then go off of it. He said I would feel A LOT better if I took it. I was feeling ok, and I did not know what he meant. But two days later, I got extremely tired and sleepy all of the time...but once the synthroid kicked in, I got immediate relief. I got my energy back.
I do have some problems with my scar...I did not know I was supposed to massage the scar. And I have some adhesions going on. My scar still goes up and down when I swallow...like it is sewn to the muscle!! My doctor did tell me last week to start massaging my scar. So, I will. I bought Mederma and vitamin E oil. I am really scared that this will be permanent. It is disfiguring. Very noticeable when I swallow. My surgeon said he could "fix" it if the massage did not help. But I do not want more surgery...Have any of you had luck with the massage? Did you have adhesions??
Otherwise, I am healing well. I feel better and my voice is slowly returning to normal. My surgeon said it can take 6 months to a year to heal completely. I am still glad I had the surgery...now my calcium is normal after at least 9 years!
I still wonder if my healing would have been faster if I had gone to Tampa like I had been considering. Did any of you go to Florida...and was it easier healing??? Were you told to massage the scar right away. I hope I have not waited too long....
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pearlseeker: Did you have a thyroid nodule removed also? Your calcium looks good for one month post op. I am on low dosage of med for thyroid too and not sure it gives me anymore energy. so good luck with that. I had surgery in Tampa and had no problems with scar. Very small site, healed quickly and put VitD oil on it and it is not visible now. I have read on different sites to massage scar, but I had no problems so I can't comment on that. My neck was "tight" for a few weeks, but my recovery from surgery went well. You will continue to feel better with the lower levels of calcium. Good luck on your recovery. txg
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texgranny, Yes, I had a thyroid nodule removed, too. Going into the surgery, scans showed tiny harmless cysts on my thyroid and a large parathyroid ademona (.8 in). So, I thought he would just go in and remove the ademona. But he said the sestamibi scan still showed HOT after remving the one ademona. So, he thought it wise to do more investigating and looked deeper. He saw a thyroid nodule and removed it and did biopsies on everything. All was benign. He also removed a top tip of the thyroid thinking the other parathyroid may be there and maybe that was making the sestamibi still hot. He made the decision NOT to go into the left side at all (thank God).
I am thankful that he cured my parathyroid high calcium problem of over 9 years. But I am sorry this affected my thyroid. Hopefully in time, the thyroid will correct itself, since he did not touch the left side of my throat. I do not know how that works, though. I do not like to take pills.
When he told me I had to take 25 mcg of levothyroxine, I was very unhappy. He said it would make me feel better. Well, I felt just fine, thank you. But the next day before I went on this hormone, I felt extremely fatigued and exhausted. all i wanted to do was sleep all of the time. (This was 3 weeks post op. So I knew what he meant then. So, I started on the hormone pill, and in 5 days, my energy was back to normal. Now I feel great, except for the massage I have to do. I have scar adhesion (maybe because he had to cut so deep???) So, I massage the tissue that is pulling up my scar when I swallow...I use Vit. E oil and gently massage for three min. then deeper massage for 10 to 20 min. 3 or 4 times a day. I hope and pray this will release the scar tissue adhering to my scar and skin and other tissue. It hurts to massage...but he said it will not hurt my tissue...and to keep doing it.
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this is an addition to the above post.
Texgranny, was your thryoid damaged from the parathryoid surgery? Is that why you are on a low dose synthroid?
What is your dose? And is it Synthroid or a generic levothryoxine. Online, it down talks taking generic. But my pharmacist says as long as I stay on the same brand of levothryoxine, it should work just fine.
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