Cortef/Hydrocotisone

I also have osteopenia from long term cortef use.

 Scorpio- please  just make sure you think and get well informed on this before you decide to take it.

I am not saying it didn't help me but has cause me some serious problems...

This is my last post on this subject...

I'm reading JW's book and according to his test, my insufficiency is 'severe'. I know it because I have every symptom and I believe this is causing me as much problem as Lyme, if I even do still have lyme.

Anyway, the disagreements and discussions here are great -- I think we have to talk it out. And we can't forget that every single body is different.

I spoke to my chiro about this -- actually, I asked him to please touch my adrenal vertebrae, which got him interested. He has ordered for me a supplement called 'Drenamine' .  I'm going to research before taking it.  But he claims it is much safer than scripts the Dr would write.  I think we all understand that chiros prefer natural remedies above any other, right.  I'll look it up, but it seems he said it came from horse adrenals or something.  He says he has patients who benefit from it.

Based on his opinion, I think I will go this route for at least  60 days -- he said we would know by then if it was helping.

Does anyone else have any experience w/ this product? I wrote down 'standard' -- that might be the name of the company?

And this is  little note to those who argue about what kind of Dr treats various problems the best.  I think we should ALL know that it depends on who the Dr is.  There's good and bad and there's Drs who don't care.   My psych said my thyroid was low, PCP said it was too low, but the Endo said I didn't need treatment. She also never remarked on the other labs that came back 'out of range'.

Thanks again, everyone for so much info.

Thanks for this info -- and I am sincerely sorry you have Addison's -- I have read that it is very grave and can be life threatening.  Do you believe that Lyme caused this, or do you believe that because you already had this kind of problem you were more suseptible to Lyme?

I now understand the necessity for more accurate testing, but can you give me any idea of what kind of numbers we might be looking at on a basic blood test on adrenals?

I have experienced depression on and off for many years, but nothing like this black hole. W/ the crying as well. It hurts and sucks so bad.  And I have been hypoglycemic for over 30 yrs. My adrenals have always kicked in and kept me from fainting (whereas some folks end up passing out when sugar gets too low). I also ran on mostly adrenaline & cigarettes for almost 17 yrs, waiting tables to support myself and kids. Thinking back, it was a bit manic -- lots of sleep deprivation.  So I think it would be more remarkable if I did not have adrenal problems -- sure does feel like I'm shot. 

But I also feel that they (adrenals) went way south when I got lyme -- that is when the different type of depression set in and when the weight starting piling on -- to the point that in 1 year my entire body type is different --- upper body/trunk layers of fat bulges -- breasts, back, sides and belly.  Used to be more like a pear shape. I"m not talking subtle -- in the photos my chiro took of my posture, the dramatic change in body type is very obvious.

I do not have headaches or vomiting, but occasional nausea and my appetite is getting worse. (who cares, I'm fat!) Don't you think that these (vomiting, etc) are indicators it's getting as serious as Addisons?

Obviously, you need life function support. How do you believe this happened to you?

C'mon everybody, let's try not to get mad at each other over all this.  Everybody is trying, searching and struggling.

Still would like to know if anyone has experience w/  Drenamine?

How long have or were you on it? Chiro said it would take 2 mo. to notice a difference.

From what I have read (and has it been said here?) -- adrenals should be addressed before low thyroid? Opinions, please?  Because I was going go to my regular PCP who diagnosed low thyroid and get back on those meds because I am sick of all this fat.

I asked chiro's opinion and he was very subtle, but I got his message: He said if I went to a PCP, he would not want me to take the drenamin and would probably put me on prescription drugs.  He did not tell me not to go, but I understand  chiro's opinion on this.

I would LIKE to take a script for thyroid also, if that's not a problem. Opinions, please?

I still hope that Paulette will come back and answer some of the questions in my post below hers.  I would like to know about her Addisons and how that came about, etc.

My addison's was diagnosed after I had chronic lyme.  The dr thinks that the lyme definitely contributed to the adrenal failure.  TB causes addison's and lyme is a spirochete just like TB to it make sense. 

You definitely need to treat the adrenals before the thyroid!

If you try to treat the thyroid without proper support for the adrenals it is a train wreck.

Many of the symptoms you describe sound like it could be adrenal problem, especially hypoglycemia, depression, crying, etc.  One way you can tell the difference in depression and depression caused by adrenals is that when it is caused by adrenals it will come and go in hours or days, it may be profound to the point of suddenly feeling completely hopeless and suicidal, and many times happens at a certain time of the day (when your cortisol level is lowest) or after increased stress or activity.

Your wt. gain is probably from thyroid. 

Not sure what else you asked I'm kinda tired...feel free to ask whatever and I'll get back to ya

Paulette

I have gone from 20mg cortef down to 7.5 in 5 months. She didn't want me to taper any quicker than that. I have had the am cortisol done 3 times now and it has been 13-14-24 which I think is high normal range for blood. She doesn't believe in the saliva testing.

She has mentioned nothing about switching to dexamethasone before doing the stim test. She just said that I had to get down to a low dose or else the test will be worthless...

I was also told that it will take time for my adrenals to "wake" up and start producing the amount needed on their own since I have been on cortef for almost 4 years...so I don't really know what to think anymore.

I wake up exhausted everymorning even though I have slept 6-7 hours. I have constant fatigue and get tired rather quickly after getting up in the morning.

I want to add that the cortef never gave me any energy or helped with the fatigue in any way...maybe I never needed it to begin with. I have no idea...

She wants me off the cortef since it has caused me to have osteopenia.

Bucci, I totally agree w/ you on the stuff that is 'unbearable', because it really is. But I have not yet found anyone who can help me thru these episodes.  I feel honestly scared that I will do someting I don't want to do, it is so mentally and emotionally painful!

I understand wanting to listen to your dr. and trust their judgement.  Addison's is so rare that most Drs. have never treated a patient with it. 

 I went to one of the top Endos. in Texas who has written articles on Addison's and participated in research...I thought I could trust his judgement, right?  Wrong.  He took one look at me and said I did not have the hyperpigmentation (darkening) of the skin and thus it was impossible for me to have addison's.  #1 - 10% of Addison's patients never have hyperpigmentation,  #2 - 3 months after I started Addison treatment with different doctor I was 'white as a sheet' so I did have darkening of skin it just wasn't as pronounced as some.  My point is that not all doctors understand adrenal problems. in fact most don't.

Really there is NO reason to torture a person by tapering them off of steroids to do an ACTH stim test.  The dexamethasone does not affect the test like cortef.  So if you take dex for 3 weeks you can get accurate results without months of torture.  My heart really goes out to you, because going down on the steroids if you need them is one of the most horrible things to go through!

You mention a normal AM plasma cortisol draw...this is not uncommon in adrenal problems. What happens many times is that the adrenals make some cortisol over night and thus have a "normal" amount of cortisol in the AM, but if you test noon & PM it will have declined to almost nothing!  So as the day goes on fatigue, depression, hopelessness, hypoglycemia, achiness, muscle cramps, headaches, nausea, etc. all gets worse.

Cushings can cause fatigue so it is definitely something you want to rule out.

Waking at 3-4AM is very common for those with adrenal problems, but very, very few doctors know about this.  The reason that you wake at that time is that your body's natural rhythm of making cortisol is to increase production around 1-2am until it is at it's highest amount for the day at 7-8am.  So when your adrenals are damaged and unable to produce cortisol in the early morning hours it wakes you up. 

Often people who wake up from adrenal problems:

-wake at the same time every night

-wake with accelerated heart rate &/or low BP

-wake with low blood sugar

-wake wide awake and have trouble going back to sleep

-wake sweating

-May feel nauseas, achy all over

-Have muscle/joint pain

-have headache

When you wake with low cortisol you often wake up with an adrenaline rush, because your body is trying to compensate for the lack of cortisol. 

I suggest that you get a saliva cortisol test done, then you will know what your cortisol is throughout the day.

Can you ask your doctor about taking dexamethasone to do the stim test?

I am so sorry you are going through this. So many of your symptoms sound like low cortisol it really concerns me to think of you going lower on the steroids.  It can be very dangerous if you do have adrenal insuffiency.

Has your doctor told you what the signs of adrenal crisis are so that you know if you are in trouble and need to go to hospital?

Blessings,

Paulette

I have to thank you for all the information...it is something I am going to look into. Going off the cortef has been just horrible.

I have chronic fatigue to begin with but now it is even worse and I just don't feel good at all. I don't think the doctor fully understands the degree to which I suffer from this..

I am definately going to get a sleep study done since this has been going on for almost 6 years..not constant but enough to really have impacted my life. I wake up so tired and as the day goes on it gets worse. I know it won't tell me about cortisol levels but hopefully it will find out why I am so exhausted all the time...maybe not enough deep sleep.

I am going to call my doctor tomorrow since I haven't heard from her yet about my latest blood test. I have done the saliva before but there is no way she will have me do it. She is by the book and goes by the standard tests.

I agree that the morning blood cortisol doesn't give the whole picture and I questioned her on it. She said if my levels were that high in the morning then the adrenals are producing sufficient amounts throughout the day.

Going lower on the steriods is very troubling to me and scary..when I had surgery two years ago they gave me a shot of 25mg before and 25 mg afterwards.

I will ask about the stim test when I speak with her as I don't have another appt. until July.

I do wake up with my heart pounding as though I am in a race and my body is just so out of control..it is terrible but I have had this for a long time.

Thank you again for all the wonderful information and I will keep you posted...I just feel so miserable right now.

I ended up laying on the bathroom floor until 3am because I kept feeling like I was going to get sick. I was just dry heaving(sorry) over and over again. It was just horrible. I never get the stomach flu...last time was in 2004 I think.

My husband works nights and I asked him what to do and he said try and drink some coke but I couldn't put anything in my mouth. So at about 3:30 I got back into bed and fell asleep for 2 hours.

I was suppose to work today but called out of course. Now I am not sure if this was a reaction to do with the cortef taper or an actual illness. I am just exhausted today but I am not nauseaous anymore.

I was never told of any side effects I could have from the taper except extreme fatigue. I have been on this taper for 13 days so do you think this could be from that? I don't know what to do...up the dose again for a couple days.

and so it goes on and on...