OK people I need your help....

[aharris2]

hello my IHD family I have bad news given to me today... my Nephro called and said that i have to have my parathyroids (sp?) removed ASAP, me being as naive as i am, said duh ok doc! but somehow i feel uneasy about a surgery and removal of glands... i fear I'm not going to make it out of the or this time around, don't ask me why but i have this weird feeling all over me. So here's a couple of questions: Have any  of you have had the parathyroids removed?? if so, how did you faired the surgery? what did they do to you? have you heard of laser surgery for the removal? well that's all i can think of right now, so i know you guys won't fail me, I'm eagerly awaiting for your answers

Rolando   

[thegrammalady]

parathyroid are 4 small pea shaped glands that basically sit at each "corner" of the thyroid. they control calcium. when they misbehave they leach calcium from your teeth and bones. parathyroid is the pth in your blood work. they can remove up to 3 3/4 of them. the surgery isn't bad, the only problem being the glands are not anchored, but float. sometimes they float away from where they are supposed to be.  you really don't have anything to worry about though. have you been to see an endocrinologist. if you haven't say "oh gee doc, not until" get confirmation before you say yes. let us know what happens.

[goofynina]

Awwww Ro, your gonna be ok amigo, i know there are several members on the site that has had this procedure done,  i am sure you will get plenty of replies that will ease your mind about the whole process, i am sorry i couldnt tell you anything other than give you words of encouragement and reassure you that i (we) are here for you always    Take care and keep us update ok 

[meadowlandsnj]

hello my IHD family I have bad news given to me today... my Nephro called and said that i have to have my parathyroids (sp?) removed ASAP, me being as naive as i am, said duh ok doc! but somehow i feel uneasy about a surgery and removal of glands... i fear I'm not going to make it out of the or this time around, don't ask me why but i have this weird feeling all over me. So here's a couple of questions: Have any  of you have had the parathyroids removed?? if so, how did you faired the surgery? what did they do to you? have you heard of laser surgery for the removal? well that's all i can think of right now, so i know you guys won't fail me, I'm eagerly awaiting for your answers

Rolando   

I've never had them removed but I'm sendind you some good thoughts and prayers.

Donna

[angela515]

I had mine removed.. the surgery was easier than I had been told and thought.I was able to even eat and everything later that day even though they sliced my throat open. I posted it about it somewhere on here, I think in my transplant thread. I had to go in twice... the first time they thought they got them all out, but after my PTH was still high after they realized they had to go back in and get 1 more.. they did that a few days later.. again, was no huge deal, I was nervous of hitting my vocal cords but my surgeon is the best in the city and has done the most of these and never had 1 accident. I also had my thyroid on that side removed as well b/c they saw ancer on it while they were in there, so yay for that. I will be praying for you. 

I take no meds.. I took tums for a few weeks then stopped.

[Beth36]

My mom had her parathyroid removed several years ago and had her thyroid removed last summer....the parathyroid removal wasn't too bad.  I think she was in the hospital overnight, maybe 2 days at most.  For the thyroid, she was in the hospital maybe 2 days as well.  All she had was a little sore throat but other than that, she was fine.  She has to take Synthroid now but no other issues....good luck!  Surgery is a scary thing to contemplate but I hope it all works out well and you are feeling well soon! 


Beth

[highlite36]

I had a subtotal parathyroidectomy.....  It really isn't that bad.....  In comparison to all the other surgeries that you will endure as a renal patient, this one is frosting on the cake......  They were even willing to do it to me, a heart failure patient.  The only thing that you'll have to worry about is the severe hypocalcemia that will follow the surgery.  For weeks on end afterwards, I was in and out of the hospital because my calcium was consistently plummeting....but you'll learn what works for you and what you can do to make it all better......  I have to say that my pth levels are SUPERB since I had most of them removed.....  I hope it works out well for you!!!!  :-)

[Sluff]

I hope all goes well.   

[fluffy]

have they put you on sensipar yet? my doctors are trying that before removing the glands

[brenda]

Fluffy is right Ro. If I had know about Sensipar and had access to it before they removed my parathyroids, I'd have tried the Sensipar first. As it is I still have one they can't find and are on Sensipar anyway. Make sure you check all you options. The surgery itself isn't bad, I didn't think. The thought of "Hungry Bone" syndrome didn't exactly thrill me. But being I still have one I didn't get that. Good luck Ro, let us know what you find out.

[angela515]

Sensipar don't help everyone... although we don't know if Ro has tried it yet, I just wanted to throw that out there. I was on it, and still had to have mine removed after my transplant... which is wierd because they figured the transplant would help them go back to normal when it normalized everything else in my body. 

[Romona]

I am very interested too. My parathyroids are misbehaving as well. It is great to have all of you to turn to for advice. 

[kitkatz]

I had the parathyroid surgery last October.  Sor ehtroat and hard to swallow after it. Easy recovery though.  Go look for my story it is on the boards somewhere.

[Zach]

Here you go, a pic from my files.  You'll be fine, Ro!
 

Just make sure they keep checking your calcium levels after the surgery.  Many people (not all) have a significant lowering of serum calcium following the surgery, caused by "Hungry Bone Syndrome," as mentioned previously.  May sound awful, but it it means your bones are once again absorbing calcium instead of leaching calcium.

When I had mine done, the pain in my heels went away.

[Joe Paul]

Good luck Rolando, you are in thoughts and prayer 

[RichardMEL]

I'm due to have it done too soon as my PTH shot up from like 16 to 45..... (I think that's 450 in the US scale) and the doc is starting to worry about it because my Calcium is still > 2.5. Anyway I asked the doc about Sensipar and he basically said they only would use that on patients who weren't candidates for the parathyroidectomy... so sounds like here at least they prefer the op to the meds. While I'd prefer the meds I guess they have their reasons.. though I am not overly worried about the operation as it seems reasonably minor...

heck I might even get to do dialysis as an in patient in a bed and I might actually be able to SLEEP for once! LOL

[keefer51]

Sorry Ro i don't have the problem yet. I am glad Zach sent that pic. I see what and where they are. You'll be ok buddy. It's hard to keep a good man down!

[aharris2]

(alene writing) Rolando has been on Sensipar for about three months. At first, it brought his ipth down from 1000 to 750. It also dropped his calcium. Then, it went back up to 1000. Now it is back down to 850. But, his calcium has been steadily dropping and is now at 7.0. They will not give him supplemental calcium for fear of triggering another bout of calciphylaxis. Also, we are agressively using Renagel but cannot get his phospohrus below 6.0 (we used to have great phosphorus control). So, it appears that Rolando is headed for a parathyroidectomy.

Question - Clearly this will plummet the ipth, stopping it from getting calcium from the bones (good). Does this make the serum calcium plummet even lower?

Question - What is driving what? I thought I understood - High Phos triggers ipth production which pulls calcium from the bones. For what purpose - what does this high serum phospohorus/high serum calcium then do?

Question - Is his very high phosphorus (between 6 and 7) fighting the sensipar?

Question - Is the sensipar causing our inability to control the phosphorus level?

Important Question 1 - Is low calcium (and, in turn, supplementation) inevitable?
Important Question 2 - Is anyone familiar with the miniparathyroidectomy?

[Sluff]

Wish I could help Ro but all I can do is keep you in my thoughts and prayers for a speedy recovery, if you do need to have the surgery done.

[BobT1939]

The board has given you very complete and accurate information re parathyroid surgery. I had two of my four parathyroid glands removed in April of 2006. The operation is a snap and I felt much better after they were taken out./bobt

[Zach]

Anyway I asked the doc about Sensipar and he basically said they only would use that on patients who weren't candidates for the parathyroidectomy... so sounds like here at least they prefer the op to the meds. While I'd prefer the meds I guess they have their reasons.

Sorry to say this, but it's called national medical care.

Question - Clearly this will plummet the ipth, stopping it from getting calcium from the bones (good). Does this make the serum calcium plummet even lower?
Question - What is driving what? I thought I understood - High Phos triggers ipth production which pulls calcium from the bones. For what purpose - what does this high serum phospohorus/high serum calcium then do?
Question - Is his very high phosphorus (between 6 and 7) fighting the sensipar?
Question - Is the sensipar causing our inability to control the phosphorus level?

Does this make the serum calcium plummet even lower?  Usually, but not in all cases.

What is driving what? I thought I understood - High Phos triggers ipth production which pulls calcium from the bones.  You are correct, and this is a balancing act.  The parathyroids have two sensors to decrease it's production of PTH--active Vit. D and Calcium--both of which can be problematic. Active Vit D is normally produced in the kidney, so we receive either Hectoral, the older Calcijex, and the newest Zemplar (all by IV).  Higher serum calcium can be a result (by increased gut absorption), so patients are switched from a calcium-based binder--PhosLo to Renagel. 

Sensipar (oral) works on the calcium sensors of the parathyroids to decrease PTH, and at the same time seems to reduce calcium absorption in the gut.

Question - Is his very high phosphorus (between 6 and 7) fighting the sensipar? Question - Is the sensipar causing our inability to control the phosphorus level? Not sure about either one. Probably not.

But Ro needs to find a way to eat foods lower in phosphorus--maybe even keep track in a food diary.  Does he still eat only one large meal a day?  How many Renagels?

Everyone's a little different, but I find that each 800 mg Renagel tablet only takes care of about 60-70 mg of phosphorus.  I take them just before I begin to eat.

I look at it like this:  One oz. of meat, chicken or fish=1 Renagel.  As an example, a three oz. (86 grams) breast of chicken has about 196 mg of phosphorus, so he needs about 3 Renagels.  Then there are the sides dishes, desserts and you get the picture.

Hopes this helps a little.

[BigSky]

(alene writing)

Question - What is driving what? I thought I understood - High Phos triggers ipth production which pulls calcium from the bones. For what purpose - what does this high serum phospohorus/high serum calcium then do?

Question - Is his very high phosphorus (between 6 and 7) fighting the sensipar?

Question - Is the sensipar causing our inability to control the phosphorus level?

High PO₄ causes the inbalance with calcium.  With low serum calcium and high PO₄ it will cause calcium to be pulled out of the bones to supply the blood.   One of the hormones produced by the kidney is calcitriol. When in kidney failure calcitriol production decreases. This decrease in calcitriol results in a decrease in calcium absorption in the GI tract.  Which at the same time  the kidney no longer is effectively excreting  the PO₄ which causes  serum PO₄ levels to increase. This decreased calcium absorption and  increase in serum PO₄ leads to hypocalcemia, which triggers an increased production of PTH to try to fix the problem.

Sensipar lowers both calcium and PO₄ levels.

PO₄ is controlled with diet and binders.  Most take in far more PO₄ than they think they are taking in.