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hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 1/18/2007 6:27 PM (GMT -7)   
Orion, I was just checking in to see how the provigil was working.  I have heard mixed reviews about it.  I hope it's helping some.  The new doctor sounds pretty thorough and it sounds like he's willing to help.  Does he just want to try some other things before he tries Cortef?
 
Give us an update when you get a chance.
 
Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Orion82698
Regular Member


Date Joined Mar 2006
Total Posts : 423
   Posted 1/18/2007 8:28 PM (GMT -7)   
Hey HM2.

Sorry, haven't been in... kinda bummed about my thread getting locked. I was keeping it going to help other in the future.

The provigil has done nothing for me, but give me nausea. This was my second day, and it was almost unbareable. I'm still going to stick with it for the next 5 days though, just to tell the doc I did.

My next Endo appt is on Monday (the second one). I'm going to request the ACTH Stim test, since it wasn't done correctly with the first Endo. Also, I had his office send me the results of my blood and urine test. He told me he was going to check my thyroid... nope. Nothing on there. I don't know if they forgot to fax it, or what. I'll have to ask my PCP when I see him next if he got a thyroid report.

However, I did see something that has me wondering. My Testosterone levels were below normal. The range was between 400-1080. I was at 319. I'm wondering if this could be a sign that something is truely going on. I'm taking these results to my next Endo.

I'm not going to ask to be placed on to Cortef just yet, I want to see what the results of my ACTH Stim test are. Hopefully, they show something. I'm sure she will also want to run more blood work as well, maybe she'll test my testosterone again.

I'll keep you guys up to date!

 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/19/2007 6:50 AM (GMT -7)   
That is interesting about the testosterone - I have no idea what it means but I would think it would mean something isn't right. It will be interesting to see what happens with your thyroid. It's always interesting when you can take time and look at your own labs. I know people who request a copy of their labs everytime they have them done - I'm tempted to do that just so I can take time to look over them and also so I'll have a copy if I ever see a new doc. I think there is something you can ask them to write on your lab slip to get a copy sent to you.

It's too bad the provigil isn't helping and it's making you feel sick. At least you don't have to wait too long for your next appointment and you can go over the labs with the endo.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Orion82698
Regular Member


Date Joined Mar 2006
Total Posts : 423
   Posted 1/19/2007 7:57 AM (GMT -7)   
Well, it's a HIPPA agreement, so by law they have to give the results to you.  Either by fax, or by mail.  I've collected all my results from my doctors over this time. 

 


sparker
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 1/19/2007 9:52 AM (GMT -7)   
I'm sorry about the thread being locked too, kinda sucks. Seems like you almost need to moderate your own thread to try to keep it open in case it gets too popular.

Low testosterone levels can effect a person much the same way low adrenals can. I had my testerone checked already and they appeared normal, so it wasn't my problem, but definitely have it checked out.

Orion82698
Regular Member


Date Joined Mar 2006
Total Posts : 423
   Posted 1/19/2007 10:42 AM (GMT -7)   
Hey Spaker!
 
Well, we'll see what my other Endo thinks about this test.  It's weird, I don't have the obvious signs of low testosterone (facial hair and drive) but the fatigue is a symptoms...   I hope this one does a little more extensive testing.

 


Tru
Regular Member


Date Joined Sep 2006
Total Posts : 116
   Posted 1/19/2007 2:04 PM (GMT -7)   
Hi Orion!

I was thinking about you and I decided to long on. I guess I missed what happened, because you said that your thread is locked. :(

Can you tell me what happened?

Also, I've read that low thyroid function can have something to do with low testosterone levels too. For example, some men start loosing their body hair, because of low thyroid function affect on testosterone levels. When one hormone level goes too high another lowers....or when one hormone levels lowers another hormone makes up for that hormone and produce more of it's own. It's seems that thyroid function has the ability to throw anything off balance...and since no person is exactly the same we aren't affected the same, because some people have no affects even though their levels are off balance.

Some women with my same hormone level results have endometriosis...I don't. My obvious affects was/is my skin, hair, and mood.

Also, less than a year ago I didn't know that the thyroid produced hormones, and that it was important to the endo system. When it's off something else is off...or almost everything is off. Some women that was told and believed that that had Polycystic Ovary Syndrome (PCOS)only had low thyroid function, and after treatment they were able to get pregnant.

I guess if a doc would have looked into my symptoms more they would have said that I have PCOS too.

Why do you feel the they need to test your testosterone level again?

Orion, I believe that Armour Thyroid and my supplements is all that I need. I'm glad that I stopped taking hydrocortisone. Those signs that I had was telling me that my body didn't need that much anymore. I don't even sleep during the day anymore...and when I stopped taking it I wasn't sleeping during the day either, but I do burn out at night when I'm supposed to. I don't have to force myself to sleep at night. LOL That's ok...it just means that I'm getting back on track.

Orion, I think that you can benefit from using Wild Yam Cream to help balance your hormones while docs figure things out. I'm loving the stuff. It's better than ProGest, because it's light not heavy...so it going in to my skin much quiker. I'm using it on my face and wrist right now...the want you switch up. I will use it for the rest of my life....why not.

Men an women use it.www.americasnutrition.com/wilyamprogcr.html

You can read about it here vitanetonline.com/forums/1/Thread/454#Message678

Good luck!

I have adrenal fatique(or one of the many names that is called), abnormal hormone levels and hypothyroidism(tissue resistance to thyroid hormones).

Meds: Armour Thyroid, Wild Yam Progesterone Cream, and lots of supplements in addition to my multi-vitamins.

Post Edited (Tru) : 1/19/2007 6:23:20 PM (GMT-7)


Orion82698
Regular Member


Date Joined Mar 2006
Total Posts : 423
   Posted 1/22/2007 6:40 AM (GMT -7)   
Well, I got the rest of my results from my first Endo today.  He did test my Thryoid, but only my T4 and TSH. 
 
The T4 was 1.28 and the Thyroid was 1.360.  I'm not sure what these mean, but I'll have my second Endo opinion today.  I'll report back later on her finding and anything she wants to run.

Edit :  According to my new Endo, these results look to be in range, but shes testing them again in the morning and with a fast.


 

Post Edited (Orion82698) : 1/23/2007 2:04:27 PM (GMT-7)


Orion82698
Regular Member


Date Joined Mar 2006
Total Posts : 423
   Posted 1/22/2007 2:30 PM (GMT -7)   
Well, I had my ACTH Stim test done today.  Man... that sucked.  Getting pricked twice for blood isn't fun.
 
They took my blood, then gave me a shot of Cortizone and told me to wait in the lobby.  within 5 minutes, I noticed that my neck pain went away (ofcourse, cortizone is an anti-inflamitory), but I also noticed that I was feeling a little bit better.  15 minutes after that, I crashed... I mean like a sugar crash.  They then took me back and drew my blood again.  I'll have the results on Friday (calling in). 
 
I also did my neck X-ray this weekend, and tomorrow, I'm going back to the lab to have more blood work done for this Endo, except this one is all fasting. 
 
She said, if this ACTH stim test, along with the blood work doesn't show anything, then it's not Endocrine .

 


Orion82698
Regular Member


Date Joined Mar 2006
Total Posts : 423
   Posted 1/23/2007 2:04 PM (GMT -7)   

Well, I had my blood drawn again this morning.  My new Endo is testing everything possible, including my testosterone again because it's possible this could be the cause, since it's so low.  I fasted this time for this blood draw.  They're testing the thyroid and the pituitary as well as looking into the hypothalamus. 

I should hopefully have all the results by Friday via phone ( as well as the results from my ACTH Stim test), however I won't be able to post them on here because I'll be in Florida visiting my Grandparents, so I'll write back on Sunday evening.  I'm really looking forwards to this, because this was the time last year that I felt great again.  I doubt this will happen again this year, but it's nice to think so. 


 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/23/2007 4:18 PM (GMT -7)   
Orion, I'm glad the doc is being so thorough and I hope something turns up that explains your symptoms. I hope your trip to Florida is relaxing. I look forward to hearing from you on Sunday. Take care and have a great trip.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Orion82698
Regular Member


Date Joined Mar 2006
Total Posts : 423
   Posted 1/23/2007 7:49 PM (GMT -7)   
Thanks HM2!!!!

 


Tru
Regular Member


Date Joined Sep 2006
Total Posts : 116
   Posted 1/24/2007 1:40 PM (GMT -7)   
Orion, did you ever have your T3 tested? When the say that adrenal fatigue and low thyroid go together and that low thyroid function is overlooked by doctors they are talking about the T3 level. Docs test T4 and TSH, but they never test T3 unless you tell them to.

I have adrenal fatique(or one of the many names that is called), abnormal hormone levels and hypothyroidism(tissue resistance to thyroid hormones).

Meds: Armour Thyroid, Wild Yam Progesterone Cream, and lots of supplements in addition to my multi-vitamins.

Post Edited (Tru) : 1/24/2007 1:43:25 PM (GMT-7)


Orion82698
Regular Member


Date Joined Mar 2006
Total Posts : 423
   Posted 1/24/2007 3:34 PM (GMT -7)   
No, and it's not being tested on this one either.  I'm not sure why, but it's not. 
 
I'm almost starting to think that it has nothing to do with my adrenals or thyroid.  I'm not sure what can be causing this.  I know my testosterone is definitely low... however I won't know for sure on anything until I call on Friday.

 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 1/29/2007 9:39 AM (GMT -7)   
Any news on your labs yet Orion?
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Orion82698
Regular Member


Date Joined Mar 2006
Total Posts : 423
   Posted 1/29/2007 2:55 PM (GMT -7)   
Hey HM2.
 
Yeah... and once again everything came back in range.  I'm not sure what else to do at this point.  I'm going to just have to wait and see what my PCP wants to try next.  Other than that...  I guess this is going to be my life.

 

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