Pituitary Question

[betscruise]

Hi all - I've been lurking here for months during my treatment, but this is my first post. The info that is shared on this forum has been so valuable to me.
I did Peg/Riba tx for 12 weeks, ending 12/24/07 due to non-response. Most of my sx cleared up, but at 7 weeks, I went to see my PCP, since I was cold and couldn't get/stay warm (along with fingers/feet still tingling, and my tongue still swollen and sore). After he made a snarky comment to the effect of "gee - none of my other Hep patients complain as much as you do," he ran Thyroid labs at my insistence.
The TSH came back as .01, he called and said that couldn't be right, and re-ran the tests as well as for thyroid antibodies.
Antibodies were negative, and the TSH came back this time as less than .01. Since my sx are "hypothyroid"  -i.e. cold, etc., and there is no TSH, he suggested it was a pituitary problem, and referred me to the endocrinologist.

Now here's the part that's frustrating - this endocrinologist can't see me for a month. I've tried to fax him with labs and info re my hep c treatment, faxing my PCP and Gastroenterologist, calling his office everyday for cancellations, and I get stonewalled by his receptionist.
I'm on an HMO, there are 3 endocrinologists in the medical group, and this one is the only one accepting new patients.

Anyone have info on how urgent this is to get treated? Any suggestions on how to get around this one month wait? Any suggestions are welcome.

Cold in California.....

[Forseegood]

but I don't have time to read this entire thread, just your question basically...some docs are too tied to their own schedules, and forget that they are here to help the patients who need help the most...if I were you, I'd just research around and find a doc that is willing to see you...my internist told me if I ever had an urgent issue, he'd make time for me, stay an hour after his closing time, etc...I'd find someone like that...there are conscientious docs out there, you just have to find them...explain that your doc can't see you and it's urgent...that's what I'd do anyway, you can't wait sometimes...with tests like that...if you need to borrow money for an office visit, I'd do it...insurance will pay for the tests most of the time...I've even heard of docs not charging their office fee if they know they are only going to see you once...hope this helps...

[betscruise]

Thanks for all the input - I appreciate the recommendations!

[merryBe]

ok, well there is also a chance the INF is pushing you into diebetic territory.
a sore tougue can be expained by the hep, and a swollen one, as can sweats chills...
I've spent the last 2 years with all the above,

a. get a blood sugar meter and start testing yur blood. you should be able to get your GP to write you a script for this, and needles and strips  because your best defense against getting pushed into diebetes is to see how yu handle meals....especially while fighting this virus and full of the poison cures.

b. call mre than one endocrinologist, ask also how soon after initial visit they can administer the test. I had to drive to another town to find a doctor who does treat adults with this cndition. then I waited another month for their group test. (they only test when they get a roomful...because then they have extra staff, and everyone is lined up, IV"D and their blood tested every 20 minutes for hours....each staffer monitors 3 or so people.
So it's no like everyday these tests are given unless you are in a big town, ...

anyway, its a matter for staying determined...the pituitary lack can swell the tougue, mess with thyroid etc etc....so you are right to press in.
Also, even when your thyroid is reading normal many patients know they are not...
my body temp, even on meds is 2 degrees below normal and yet still I am burning up if the temperature goes above 68 degrees.

the other thing INF can do is lead to auto immune breakdowns in all kinds of glands and organs. So checking more than just CBC's for folks with this disease makes lots of sense. Kidney function also, due t Riba worries, should be a standard screening.

I wish I culd tell you taking the HGH has solved all my problems, it hasn't...but it has given me a chance to be more recouperative whereas before I healed very slowly if at all, my incisions healed well ahead od schedule this time.

Just realize this drug won't "cure" anybody of Hep C. What it may do, is give us a better chance to live another day, grow back a few more healthy liver cells, basically give us back some of the resilience we had in our youth that this disease so thouroughly strips us of.
good luck, I hope all this helps some of you!!

[DoubleDose]

Refer to the above thread on Adult Growth Hormone deficiency.  Chech out the linked articles, and maybe take them (and others available on internet) to your endocrinologist.  This all relates to Pituitary issues.  I also have followed the Thyroid track, and mine is being addressed.  The symptoms remain, and now it looks like the GH issue is more likely a possible cause of all my symptoms.  I will bet there is some sort of major pituitary, or adrenal issue behing many of our more chronic, and intractable problems.  We just need to make a case for full lab investigation, and have our doctors do all the necessary testing to see where the problems lie.  I am tired of just putting up with these symptoms, and finally I plan to get to the real root causes.  Hopefully these tests will help determine something!!!

DoubleDose

[sfbaygirl]

I see Dr. Davern. He is the main liver guy there. He is only there on Fridays. You will have to complain about your Dr. first. They first sent me to some other yoyo, who was as uninformed as the other in my group. Make a good case. I was really surprised when my PCP sent me the referral, I wasn't expecting it!  Tell your PCP you want to go to UCSF or to Gish group at CPMC, good too, so when the PCP sends you a referral you may have a choice. I didn't even know I was getting one and didn't complain. I like this Dr. though. He is really up on all the studies etc, went to the conference and palpatated almost exactly as the fibroscan came out. These Dr's are NOT IN our group, but are in Healthnet, just not the HMO, but I can get blood etc from him. They want me to see someone else if I have a bx though. If I want one, I will probably complain about that too!  

[betscruise]

Thanks for the info - I'll get on the phone on Monday. Good to know you got a doc at UCSF - which is what I decided I'd have to have before I'd consider treating again. My GI was useless. Which hepatologist do you see at UCSF?
I'm in Foster City, BTW.

[sfbaygirl]

I had a feeling you were on Healthnet. They make such small groups!  I am now seeing a Dr. at UCSF. I live near Walnut Creek, more than 20 miles away. I went on their website and they had this little complaint window. I complained about my incompetent GI who didn't even know if I was UND. I guess there is no hep C people around here!  So they contacted my PCP and sent me to a good Hepatologist at UCSF. I was impressed!  I also call them from time to time and if you do, you may get faster service. Yes, the PCP has to give you that slip, but I think they can move it along, if you complain. Sure works for me!  Where are you?  

[betscruise]

Thanks - I'm on Healthnet HMO, too. I'll take it up with them and see what happens.
What's so frustrating is I'm 20 miles away from both Stanford and UCSF - and my HMO won't cover going there unless I'm referred there.

[sfbaygirl]

Welcome fellow CA girl!  Sorry to hear you are going through the chills and tyroid problems. I go to Healthnet HMO and sometimes have problems getting to see a dr. when I need to. How about the ER? Do you think they would do anything?  I know when I have problems with my HMO, I complain online and wow do they respond!  Also you can call them and complain about your situation. Perhaps they will send you to another group out of your immediate area for tx.  Good luck!  Glad you posted!  

Linda