Has anyone here had Parathyroid Surgery?

[anne627]

How did it go? Did it affect your transplant? Were your bones improved after surgery?

I am going in May for this surgery.

[Ckdchild41]

Yes anne627 I did have parathyroid ectomy after my second transplant cause my calcium would not go down something I heard is it is sometimes needed in transplant patients especially if you had a high calcium and the other thing that goes along with calcium sorry can't think of that right now but with parathyroid ectomy they took three of the four out so I only have one parathyroid now may I ask you something did your Doctor mention that your line from one side your neck to other side of neck and did he tell you how many they are going to take out but don't worry about it though cause you'll feel alot better after I did hope this helps you

[anne627 in reply to Ckdchild41]

Ckdchild41, I think it will be two separate cuts. I took a scan and it showed I have one gland on both sides that had small benign growths in them. The doctor will remove them and test the others to see if they will work after 15 minutes. If not, she will take 1 1/2 more out. I have some function in the others.

Thanks, I do hope I will feel better. Did you have trouble speaking or breathing after surgery?

[Ckdchild41 in reply to anne627]

Not really had other issues like my kidney not working right off the back when I got my second kidney spent two weeks in the hospital and I might be losing my second kidney now my Kidney doctor told me I'm down to 22% on kidney function praying that doesn't I really want this kidney to last till it is 20 or 22 yrs I'll pray for you and pray that the surgery goes well and everything is fine and not cancerous ok take care my friend prayers are with you now your friend in kidney care ori

[anne627 in reply to Ckdchild41]

Ori, I hope your kidney lasts a long time. I went years mow when my original kidneys were at 22 percent. Thanks for praying for me. I will pray for you too. You friend in kidney care, Anne

[Ckdchild41 in reply to Ckdchild41]

Thanks anne627 in kidney care always we can talk more if you need someone to talk to ok anytime I mean it ok and please let me tell you my actual name I messed up earlier on name, my name is Lori Elledge ok

[anne627 in reply to Ckdchild41]

Thanks, Lori! You are a very compassionate person. If you need to talk, I am always here. Anne Korot

[Ckdchild41 in reply to anne627]

Thanks I've always thought ever since I was a child that you should always be compassionate about others because some day that person you didn't know that you were compassionate to will or might need your help it takes alot to be mean to somebody but cost you nothing if your compassionate and care for others as I have been tought someone else might be in worse shape than you

[anne627 in reply to Ckdchild41]

Lori, if everyone thought the way you do, we’d have a better world.

[Ckdchild41 in reply to anne627]

I agree if everyone could be desent to other people then this world would be perfect

[Lionkin in reply to Ckdchild41]

Just curious what was your PTH value..Thanks

[anne627 in reply to Lionkin]

I did have the Parathyroid surgery in 2018, and had 3 parathyroid glands removed. My PTH before the surgery was around 215 and after the surgery and since, in the 50's. I had osteoporosis and my calcium was high. I didn't want to have worse problems with my bones or possibly one day with my transplant, so I finally had it done. I am glad I did.

[Dixidude39]

anne627 ... I'll be 79 in October 2018. A year after a successful procedure to remove my bladder due to cancer, M D Anderson Cancer Center urologists determined that I had TCC (transitional cell carcinoma) in my right ureter and kidney. Both surgically removed in July 2016. I am now CKD4 with an eGFR of 29-30. If I develop TCC in my left ureter/kidney, I will go on hemodialysis. Time will tell, but at my age, I probably will not receive a transplant. On November 7, 2017, I fell at DFW International and fractured my left femur. Surgery the next day, followed by 3 weeks of in-patient physical therapy. Then returned to home in Richmond, VA. Last week, completed out-patient PT. I still am not fully recovered, but my DPT believes only I can finish the job following specific exercises she's prescribed. The bone clinic at the Veterans Admin. (where I get some of my medical care) started me on a daily self-injection of a bone-building drug. It's one of two medications approved for patients with kidney disease. I can only use this daily injection for the next 2 years, then will be switched to a twice-annual injection that stabilizes (but does not build) bone tissue. The twice-annual injection will be physician-administered. It too is deemed to be "kidney safe." I realize this is different than what you are going through, but it sounds like it may be related.

[anne627 in reply to Dixidude39]

Dixidude39. I have taken Forteo years ago for two years. It did work for osteoporosis and I had osteopenia for a while. My calcium doesn’t stay in my bones because of the parathyroid disease. I had taken prolia too but had side effects. I hope you can get a transplant. Good luck.

[Dixidude39 in reply to anne627]

Yep, those are the two injections ... Forteo for 2 years, followed by semi-annual injections of prolia.

[JoEllenLentz]

I had my parathyroid removed when I was on dialysis. First they removed 3 and left a piece of the 4th gland. Within months, the piece that was left grew large, so I had surgery to have it completely removed. I felt SO much better. My aches &pains were lessened and my energy level improved. My parathyroid level was greatly improved & calcium & phosphorus levels under control with calcium citrate, calcitriol. I didn't need meds for phosphorus. I did receive a transplant and for a while all those levels were hard to control again until I was referred to an endocrinologist. He had to adjust doses and add phoslo (calcium acetate) back. My bones took a couple of years to show improvement, but after I received the transplant I've had no broken bones. I tried fosamax & evista to improve bones, but my calcium level would drop to such an extreme that I had terrible side effects and couldn't take them. I can't take anything that depletes the calcium. I was finally put on an estrogen patch for my bones, in the hopes that they will rebuild. I've had no side effects & they have begun to show improvement and regeneration. If you have the parathyroid removed, you will so much better, but just know that you will always need to eat a lot of calcium rich foods & take extra calcium or it will drop dangerously low. I hope this helps!

[anne627 in reply to JoEllenLentz]

This does help, Jo Ellen, thank you. I thought there will be improvement right away. I eat very little calcium now because my calcium is high. I hope I don’t have to take actonel once I have surgery.

[NeedingAdonor in reply to JoEllenLentz]

Interesting info. My fiancé is so sore at night in the joints and bones. He says its the acid due to dialysis. I massage him at night which slightly helps. However, he is still so uncomfortable and moans. He will also have the parathyroid surgery at the end of this month April 2018. WE are hoping that the pain will cease. It's awful.

[anne627 in reply to NeedingAdonor]

JoEllen, Good luck to your fiancé with his parathyroid surgery. I hope his bones feel better after the surgery.

[NeedingAdonor in reply to anne627]

Thank you so much.,

[Ckdchild41]

My bones would have been toast had they not done the surgery as for right now I have osteoporosis and my bones are probably a little weak don't know though cause I haven't had a bone density test in almost 17 got to get another one to see how weak or strong my bones are

[anne627 in reply to Ckdchild41]

My PTH is 106. I have weak bones also.

[Bert64]

They usually don't do a parathyroid after transplant, why are they doing it its usually ecause you phosphorus is to high on dialysis.

[anne627 in reply to Bert64]

Bert64, I have hyperparathyroid disease for many years. My osteoporosis is worse and I tried different meds and either I had side effects or they didn’t work.

[Bert64]

Well that makes better since, your first post wasn't clear...I don't think it will have any effect on your transplant but not sure .

[anne627]

I had parathyroid surgery last Monday. I had 3 glands removed. My joints feel better. I stayed a day in the hospital. I am taking calcium carbonate and trying to eat calcium now. The surgery was successful but my creatinine went up to 1.5. It went down to 1.3 by the next day. I hope it goes back to 1.0-1.1 as it was before.I have to see the doctor in a few weeks.

[SaraEads]

Anne, do you know what your PTH is after surgery? I had PT SURGERY twice after my transplant in 2003. Once in 2004 and again about 7 years later.

Sara Eads

[anne627 in reply to SaraEads]

SaraEads, I had the surgery in June. I had a blood test a few weeks ago and my PTH was 50 and my calcium ranges from 9.2 to 9.5. In May I will take a bone density test and I hope it shows my osteoporosis is better. I had 3 glands removed at once.

[Donaldson0007]

Anne, I am 36 mos post xplant and my thyroid and parathyroid are now testing poorly. Toxic levels of thyroid, and parathyroid is high out of range at over 75. I emailed my xplant team but have not heard back. My local PCP made an endocrine referral but is there anything I can do, or need to be doing to be proactive? How did you discover you needed this surgery, what were the reasons behind this for you - if they were explained to you. Thank you.

[anne627 in reply to Donaldson0007]

When I started dialysis years ago the doctor tested me for hyperparathyroid disease and my pth was high then. I have my transplant over 24 years and it got worse and my osteoporosis got worse. So I finally agreed to having surgery. Now my pth is 50 and my calcium is 9.2. I don’t know if my bone density improved yet.

I think you should see an endocrinologist since both the thyroid and parathyroids are involved. Try contacting your transplant team again. Are you in the US? Good luck!

[Donaldson0007 in reply to anne627]

Thank you. Yes, Im in the US under care at Cleveland Clinic. I have my PCP and my local nephrologist involved and an endocrine appt pending. I was researching and noted that phosphorous can also play a role, and I was recently started on a phosphorous supplement so I have asked if I should stop this. These numbers have never been of issue before, other than basic hypothyroidism that I have been treated for since I was about 15. The parathyroid has just now popped on the screen for some reason.

[anne627 in reply to Donaldson0007]

The Cleveland Clinic is one of the best. I go to NY Presbyterian. Maybe they were busy and overlooked your email. I don’t know about phosphorus in transplant patients. Don’t stop it on your own. Try calling the transplant doctor or speak to a nurse coordinator there and an endocrinologist.

[Donaldson0007 in reply to anne627]

Yes, I have been in touch w the prescribing Dr locally on the phosphorus. The contact w CC has been an issue for sometime, so much so that I thought about contacting the Director but have not.

[anne627]

I have trouble contacting my nephrologist sometimes. He is overwhelmed, but a great and caring doctor.

[marcyc NKF Peer Mentor NKF Ambassador in reply to anne627]

Our Nephrologist is awesome. Gave us his cell phone and personal email. Never use it but certainly made us feel like he is there for us.

[anne627 in reply to marcyc]

I have my nephrologist’s number, but only used it once. I don’t like to unit unless it is an emergency.

[Dara3351]

I was in the process of going to have the surgery but was postponed because of the kidney transplant. So far I haven’t had any problems however I did have an endoscopy and my gallbladder removed recently.

[anne627 in reply to Dara3351]

It is good that it isn’t causing you problems, but I think it is a good idea to check your PTH level occasionally.

[Dara3351 in reply to anne627]

I agree. Between my transplant team, the nephrologist and my family doctor I am pretty well covered.