More Info on Sweating

[Guest guest]

I have just gotten caught up after several weeks of ignoring this

group. Sorry, this is going to be long. I also have the terrible

sweating problem. I have been checking my bp lately and have noticed

that while the systolic is usually around 140-145, I have checked

several times when it is up around 170-180. Within a few minutes,

the " hot flashes " start and I check my bp again and it had dropped by

about 30-35 points. The diastolic goes up and falls too but not by

much. From what I can figure out, the bp spikes before the sweating

and goes down after. The sweating has been one of my major complaints.

It is accompanied by horrible, horrible heat. When it starts, the back

and top of my head gets very hot and I can feel it travel down my

spine. When it starts, I have to get under a fan and wait for it to

pass. Sometimes I have to wet a washcloth and rub it over my face and

arms and with the fan, that helps. I know mine is not caused by the

Spiro, because I had it for 3 years before starting Spiro and it seems

to me that spiro helps a little. I have a small area of nodularity on

my left adrenal and my renin/aldo was out of balance so endo #5 sent me

to a local med school for more tests. When I told that endo (#6) about

the sweating and the pain in my feet (feels like inflammation of the

front part of feet) he said he thought I had a carcinoid tumor and

ordered some tests. One test he did was for chromogranin A and it was

72H. I have my lab tests all over the house so can't find the range

now. At the time it was tested, I had been off he BB for a week. He

repeated the test a coupe months later after I was back on the BB and

it was normal(35). I will look for the papers with the ranges. He

ordered an octreotide scan which showed nothing. He also said he

thought I had a PTH tumor because my CA was high and PTH wasn't close

to 0 as it should be with high CA. He ran the CA/PTH tests 3 times.

The first two, CA was high and PTH was normal but in the top half of

the range. I had to keep reminding him about the aldo and finally he

did a saline suppression test and said the aldo wasn't caused by a

tumor because it was suppressed by saline. He gave me no idea of what

it was and by this time we were communicating by e-mail since I was so

angry at him, I couldn't be civil to him on the phone. I reminded him

about the PTH tumor and he ordered a third CA/PTH test which turned out

normal. He said he would send me a letter which I never got and moved

on to #7 and got no help there. Finally I got to endo #9 and showed

him the tests that #6 ran. He said right away that I had a PTH tumor

and needed to get it out then see what was left. He repeated the tests

which were high and ordered the sestamibi scan which showed nothing.

He said that wasn't uncommon and sent me to a surgeon. The surgeon

wouldn't operate because I didn't have osteoperosis/kidney stones.

Then he sent me to an endo surgeon at the same med school as endo #6.

The surgeon repeated the CA/PTH tests AGAIN on 5/16 and I have yet to

hear the results. He also ordered a sest. scan done differently and I

asked the film library to send me a copy of the films. Although I

haven't heard the results of the scan, I did get the films on a CD. If

I am reading them correctly, I have a tumor/adenoma in my neck that is

heartshaped and about 4.5 cm across. Is that why I feel a choking

sensation sometimes? It looks like it is kind of curled up. When I

look at one pic, it looks like two tumors together but from the other

side it is one. I still haven't heard from the surgeon and made an

appointment with another surgeon based on a recommendation from someone

in a hyperPTH support group. My appointment is Mon and I hope to have

the labs and radiology report before that. I will post more on

carcinoid tumors.

Fran

A couple of months ago, I went to my 9th endo looking for help. He had

lab results from a previous endo I had seen. Right away, he said that

I had a parathyroid tumor and needed to get it taken care of first.

Endo #6 had ordered a saline suppression test for PA and my aldo was

suppressed from 20 to 6 after a 4 hr saline infulsion. He said my high

aldo wasn't caused by a tumor. He also thought I had a PTH tumor and