It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Sarcoidosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 06-07-2007, 05:55 PM   #16
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: u.s.
Posts: 1,679
osteoblast HB User
Re: sarcoidosis

Snowflake-. Even though your appt.is Monday ,can't you call and talk to the nurse on friday and ask her to communicate with the dr. about your situation? All drs. I have seen have an asst. who will take the question and either get back to you or have the dr. get back to you. Why not call tomorrow and get some direction from the dr.? If you don't think you can do this by phone message, could you just call the dr. first thing in the am and say you have to see the dr. friday that it is a crisis situation for you and you can't wait.

Or, if you are really concerned why not call the dr. tonight? Does his practice have a way for you to call and state that you need to talk to him tonight ? It sounds like you are not happy with this dr. anyway so why not push it even if it annoys someone so you can get the help you need. Maybe after Johns Hopkins you should talk to people and see if you can find a dr. that would be more responsive to your concerns.

I looked at the Mayo site about sarcoidosis and didn't see any reference to pth being low. The only thing that seemed to click with what you have said is high calcium. . I didn't see anything there about thirst either.

I know it was DesertBloom who mentioned diabetes insipidus where thirst is a symptom. Did your doctor do tests for that ?

 
Old 06-07-2007, 06:18 PM   #17
Senior Veteran
(female)
 
Join Date: Jan 2005
Location: California
Posts: 2,704
taape HB Usertaape HB User
Re: sarcoidosis

When I got to the end of my last pen after 24 months I stopped the Forteo cold turkey. I didn't notice any side effects but of course my bmd took a nose dive, but nothing noticeable. Since you have some complications you might want to make sure a doctor tells whether to stop or not, and you can even call Eli Lilly and ask to speak with one of their nurses to get a recommendation if your doctor continues to ignore you.

 
Sponsors Lightbulb
   
Old 06-07-2007, 07:13 PM   #18
Senior Member
(female)
 
Join Date: Sep 2006
Location: NY, USA
Posts: 274
snowflake11 HB User
Re: sarcoidosis

hi guys,

thanks for all your concerned advice. Really. thank you! means alot to me. I didn't take the forteo tonite because I also looked it up on the Net and couldn't find anything about problems if you stop it cold turkey. I do plan to call my doctor tomorrow. I feel slightly better now - a bit less fatigued than i was throughout the rest of the day. So that's good. It was pretty scary though today because I just could NOT wake up and was as weak as jello. In thinking about it, I realized that my knee and ankle pains may also be coming from the forteo. I just don't think it is the drug for me.
Anyhow, yes, Sarc can indeed cause fatigue and thirst and many of my symptoms. I have a whole bunch of q's that need to be looked into. And they will be. Thanks so much for the way you care.

 
Old 06-07-2007, 08:00 PM   #19
Senior Veteran
(female)
 
DesertBloom's Avatar
 
Join Date: Aug 2006
Location: CA, USA
Posts: 1,484
DesertBloom HB UserDesertBloom HB User
Re: sarcoidosis

Hi Snowflake: If you are feeling that weak, call the dr, or go to the ER. Stopping the Forteo shouldn't cause any problems, because when they take you off of it, as they did with me, you just "stop it" they don't taper it. You probably have something else going on independant of the Forteo. If you "do" have something else going on your dr needs to know, right??

I'm not sure that stopping Forteo is the greatest idea, but I would try to talk to your dr! Low PTH is treated with scripted Vit D, at usually a higher dose than what you are getting, so I don't know what your dr is basing his dosing on. I don't think Forteo would affect your PTH level that much since it isn't used to treat hypoparathyroid "except" on an experimental basis. Forteo does not have the full dna chain that our native PTH does, so I don't think you could build it back up with that, since they aren't full identical matches of hormones. Vit D is the only thing I know for sure that "should" raise your PTH back up. I know that a few drs are trying Forteo for hypopara, but there is NO research to prove this works, vit D is used to treat it instead.

Have you been tested for diabetes insipidus??? Completely different test than the regular diabetes test (sugar).

If you can't get a hold of your dr and you are feeling bad, try the nearest hospital.

I'm having trouble with my Internet connection so I may not be able to get back on, so at least call the dr. okay???

Good luck...

 
Old 06-08-2007, 10:59 AM   #20
Senior Member
(female)
 
Join Date: Sep 2006
Location: NY, USA
Posts: 274
snowflake11 HB User
Re: sarcoidosis

well the good news is that I am feeling better today - less tired. I didn't take the forteo again last night. I don't think the low D is responsible for the low PTh because last Aug my D was very low and my para was mid normal - this is BEFORE I started the Forteo. So????? I do appreciate the theory though. No, its not diabetes insipidus. My doctor said no because I don't pee a huge excess of water - just have to go frequently some days. When i see my doctor monday i sure hope he will help shed some light. i may try taking the forteo again today and see what happens. not sure yet - depends how brave i get later.

 
Old 06-08-2007, 02:35 PM   #21
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: u.s.
Posts: 1,679
osteoblast HB User
Re: sarcoidosis

Snowflake- Hi! I am glad to hear you feel better. I wondered about what you wrote about your d being low before forteo and your pth then being mid normal. Do you recall what your low d level was ,and did you supplement d and bring your level up? If you supplemented , what was the amount of d you were to take and what level were you able to raise your d to? I am facing a very low d level and it hasn't wanted to budge.

You must really be looking forward to your appt on Monday. Good luck with that.

Last edited by osteoblast; 06-08-2007 at 10:33 PM.

 
Old 06-08-2007, 04:47 PM   #22
Senior Member
(female)
 
Join Date: Sep 2006
Location: NY, USA
Posts: 274
snowflake11 HB User
Re: sarcoidosis

Oh yes - I am very much looking forward to Monday. I may decide not to do anything till then - I am afraid to restart the Fosamax with the PTH so low. The Forteo seems to cause so many side effects. It's just tough dealing with all this stress. I really need to talk to the doctor.

To answer your q's - my D before Forteo was 18. I got it up to 37 just by taking 2 Vit D pills - 800 mg. But now its low again - I don't seem to be able to handle taking D supplements. They make me so thirsty. Hence, I think maybe I have Sarc. But eventually I trust that we'll get it all figured out. I have to trust that.

I don't know why you can't bring your d up - but maybe its not a problem. If your calcium is okay, then is low D really a problem? Maybe not. ???????? Do you sit in the sun at all? That may help.

 
Old 06-08-2007, 05:38 PM   #23
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: u.s.
Posts: 1,679
osteoblast HB User
Re: sarcoidosis

Initially I was on 800 d a day. My d went down to 19 on that dose.I was then put on 2000 d/day for 3 months - my d went up 1 point 19-20. Now I am on scripted hi dose d of 50,000 each week. I'll have a blood test including the d soon. I don't know why the 2000 a day did nothing. I have been tested for possible malabsorption and I don't have a problem.

During winter at the latitude I am at you can't do anything with the sun- it's not going to move the d. Now is a different story and I am getting some sun.

From what I have read d is very important. The Canadian Cancer Society just put out an advisory that Canadian adults should supplement at least 1000 a day during fall andwinter, and year round for some. They said that based on a US study there was a 60%lower risk of developing breast, colon and other cancers for women who supplemented. Also they article mentioned other evidence supporting the advice to supplement.So, I want to be sure to get my d up and keep it up for cancer prevention and bone health.

Last edited by osteoblast; 06-08-2007 at 05:52 PM.

 
Old 06-08-2007, 07:14 PM   #24
Senior Member
(female)
 
Join Date: Sep 2006
Location: NY, USA
Posts: 274
snowflake11 HB User
Re: sarcoidosis

hey - well i do hope its up at your next test. please let me know. i'd go back and look at possible sarcoidosis if its down again - in that disease the 25,D is low because it is being actively and unregulatedly converted to 1,25 D. so the 1,25 D is high and causing symptoms, but doctors don't usually test that. they tell you to take MORE D which is actually the wrong thing to be doing. It just throws more fuel for the conversion and things keep getting worse, not better. btw, are your kidney's okay?

I just did some searching and found that a low 25,D corresponds with a high PTH level. In my case, I have low 25,D but also a LOW PTH - so this also supports my Sarc. theory. If my 1,25 D is high, it could be causing the low (non-existant) PTH. oh i can't wait till Monday for some explanation of all this!!!!

Last edited by snowflake11; 06-08-2007 at 07:41 PM.

 
Old 06-08-2007, 08:43 PM   #25
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: u.s.
Posts: 1,679
osteoblast HB User
Re: sarcoidosis

It sounds like you have looked at the various aspects of your situation. How does your dr. react to it if you go in with highly specific theories , questions etc.? I have had some drs who have been not interested in having patient involvement. I hope your dr. really helps you!

Yes, I think my kidneys are ok. I have had several 24 hr. urine tests done. I don't have any problems with my kidneys that I know of. I guess you would know if there was a problem with your kidneys?

Last edited by osteoblast; 06-08-2007 at 08:52 PM.

 
Old 06-08-2007, 09:35 PM   #26
Senior Veteran
(female)
 
montesflus's Avatar
 
Join Date: Sep 2006
Location: Los Angeles, California, USA
Posts: 657
montesflus HB Usermontesflus HB User
Re: sarcoidosis

SNOWFLAKE11 OR OSTEOBLAST :

Sorry to sound like a moron. Please explain the difference between ''25,D'' and ''1,25D''

Thx

 
Old 06-09-2007, 10:03 AM   #27
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: u.s.
Posts: 1,679
osteoblast HB User
Re: sarcoidosis

As to your question, I am only familiar with the test for vit. d level done by my dr. which is the Vit D (25 OH) test.

Snowflake mentioned the other d test and I am not familiar with it.

 
Old 06-09-2007, 12:20 PM   #28
Senior Member
(female)
 
Join Date: Sep 2006
Location: NY, USA
Posts: 274
snowflake11 HB User
Re: sarcoidosis

hi - to explain a bit more:

Vitamin 1,25 D is usually not tested.

25 hydroxy vitamin D is the most accurate measure of vitamin D stores in the body.

25 hydroxy vitamin D is stored in the liver where it is converted from other forms of vitamin D either obtained from the diet or made in the skin by sunlight. 25 hydroxy vitamin D is then changed to its active form, 1,25 dihydroxy vitamin D in the kidney. This active form of vitamin D causes increases in calcium and phosphate by activity primarily on the intestines, kidney and bone.

Low blood levels of 25 hydroxy Vitamin D may mean that you are not getting enough exposure to sunlight or enough dietary vitamin D to meet your bodyís demand or that there is a problem with its absorption from the intestines. High levels of 25 hydroxy Vitamin D usually reflect excess supplementation from vitamin pills or other nutritional supplements.

Low levels of 1,25 di OH Vitamin D can be seen in kidney disease and are one of the earliest changes to occur in persons with early kidney failure.

High levels of 1,25 di OH Vitamin D may occur when there is excess parathryoid hormone or when there are diseases, such as sarcoidosis or some lymphomas, that can make 1,25 di OH Vitamin D outside of the kidneys.

 
Old 06-09-2007, 07:49 PM   #29
Senior Veteran
(female)
 
montesflus's Avatar
 
Join Date: Sep 2006
Location: Los Angeles, California, USA
Posts: 657
montesflus HB Usermontesflus HB User
Re: sarcoidosis

Thanks, Snowflake. Hope you start feeling better and also that you can get some helpful suggestions from your upcoming doc appointment. Hope he/she listens to you without interruptions and answers your questions

 
Old 06-11-2007, 07:23 PM   #30
Senior Member
(female)
 
Join Date: Sep 2006
Location: NY, USA
Posts: 274
snowflake11 HB User
Re: sarcoidosis

well an update -

i saw my doctor today. He still doesn't have a clue about why the thirst, nor the fatigue, nor the burning hands. he said my pth could be so low because I am taking forteo. my body may be sensing the forteo and supressing my own pth. supposedly the pth test doesn't pick up the forteo (pth), only the natural body pth. (thats what he thinks anyhow, but he says he doesn't really have an explanation for it.) he wants me to continue taking the forteo.

so am i any further ahead? who knows? i guess i feel better after talking to him at least. my vit 1,25 d test isn't back yet.

i just took the forteo again today. guess we'll see.......

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
sarcoidosis and leg paralysis kckdottboi Sarcoidosis 8 07-21-2011 07:29 AM
could this be sarcoidosis? rmc20021 Sarcoidosis 2 10-16-2010 09:24 PM
seeking advice about Sarcoidosis and its many symptoms? cindy1970 Sarcoidosis 0 02-13-2008 05:22 AM
Stage 2 pulmonary sarcoidosis natedory Sarcoidosis 3 12-18-2007 11:40 AM
Sarcoidosis KellyinTX Sarcoidosis 19 01-31-2007 01:27 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



renata77 (2), OctaviaGreen (2), Sunsetnan (2), alicon (1), lynnsmith (1), JustTryin (1), giveasmile (1), IrishAD (1), reno2atlanta (1), sugzey$ (1)

Site Wide Totals

teteri66 (1180), MSJayhawk (1006), Apollo123 (906), Titchou (850), janewhite1 (823), Gabriel (759), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 08:25 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!