What to expect starting Cortef…

[Bigpete757]

I have been taking cortef for the last few weeks and I am not really feeling better at all and actually seem like I am gaining a little weight and it is harder for me to put on muscle. I added 2.5 mgs every three days until I got to 10 mg, and have to stay on this dose until more labs are run in about six weeks into treatment.

I was put on the medication for low cortisol levels and I am wondering what could possibly be causing me to feel worse.

I have been reading a lot that when you are starting cortisol monotherapy, you have to really look out for other various hormone levels/signals such as pregnelone, progesterone, dhea, testosterone, aldosterone, etc., to make sure that these aren’t going too high or low. I have read that taking cortisol alone can suppress other hormone levels.

There is two things that I think may be happening with my situation.

1. The cortef is making some other hormone level go either too high or low, which is why I am feeling worse.

2. The current dose I am on 10 mg is too small and is kind of a middle of the road dose, which is bad for cortisol treatment I think. I think it is good to either take a full replacement dose such as 20 mgs or higher or take something like 2.5 mg in the afternoon. I could be wrong, but this seems to make sense being that 10 mg is just enough to suppress your normal cortisol output, without giving you the full dose your body really needs.

I read about cortef increasing your appetite, but I thought that the medication would give me more energy and would make my thyroid work better so I would lose weight. It seems like it is doing the opposite. One of the reasons why I am so concerned is that before going on cortef, my appetite was out of control and now this has even made it worse. And I am not losing any weight. Has anyone have this happen to them when they first starting using the medication?

Here is a brief summary on what has been found so far on my labs. I will post more when I can get a new printer with scanner. Basically it seems like my entire endocrine system is shot. First went my testosterone, then probably my thyroid which caused me to gain a lot of weight, and lastly was my adrenals. I am now in process of getting everything corrected again and could you your help.

Low testesterone, low cortisol, normal/high hypothyroid levels, low dht, high insulin, high leptin, low iron, low red blood cells count, low estrogen, low cholesterol, erosive esphagitis.

I was tested head to toe this summer for the reasons why my iron and red blood cell counts were low, but the only thing the docs found was that my esophagus is getting tore up because I have a acid reflux issue. I think my low cholesterol levels and low iron levels are also connected to low cortisol levels and possible low thyroid levels.

One thing I have not tested is pregnelone which may be important in my case. I heard that this can’t be tested through quest, but the Rheins urine panel can test for it. I am thinking of do the rheins test, would this be a good idea?

As the question states on the subject line, what did you expect when you started cortef treatment or what should I expect in general. As stated earlier, I thought I would have a lot more energy and would feel generally more healthier, but this not the case. Maybe its too low a dose I am on or something else is going on, not sure yet.

The last question, should I ask my doctor to move up time the frame of when I should get tested going into the treatment. I have not told him yet that I am feeling worse, but I am assuming that he would want to test me earlier rather than later to see what is going on. I mean, what are the advantages of me feeling like shit for the next 4 weeks, when I could get tested in 2-3 weeks or just make a change in the treatment now.

The only reason I think my doctor would want me to stay on the current dose of 10 mg is because he said we should build an adrenal reserve for me staying on the low dose that I am on. However, when weighing the pros and cons I am not sure which is better. The options are staying on 10 mg until six weeks into treatment and feeling like shit but are building an adrenal reserve, or getting tested 4-5 weeks into treatment and seeing what is going on and adjusting my medication accordingly, but are not building that extra week or two of adrenal reserve. In your opinion, would it be worth it to feel like shit for an extra couple weeks just to build the adrenal reserve, or would you ask your doctor to test you a week or two earlier than scheduled because you feel worse off now than when started the medication. Thanks in advance.

[hardasnails1973]

Your probably going to uncover a hypothyroidism when next round of test are given.
With your TSH as high as it was. The speculation will be that by given you cortef and going slowly will reveal that low adrenal over prolong peroid of time has shown you to have a deficiency of cortisol resulting decreased thyroid signallin (low tissue thyroid causing an increase in TSH). Your Dr is being cautious and doing the right thing before going full bore. The next step is look at blood work in relationship to cortisol reaction to other hormones. I have several people in your same boat and they experienced the same thing. The next round of test reveals lowered TSH, DHEA, and higher T levels, lowered thyroid levels. After the second round of blood work thyroid is implemented and then cortisol is increased accordingly. Please do remember that after being through the ringer for so long you have to understand the Dr this going against him and we understand this. We work fast and swift but also in cautious pattern according to medical saftey guidelines. We know you want to feel better but do remember this has been going on for months so we know your frustration, but it is better to go slow and steady knowing what medication is really doing to other hormones. Please also remember that you also have other issues going on that are more variables that have to be taken in consideration. If my experience shows after the next round of test the picture will be much more clearer. So all those months and months of questions being unanswered will finally be. Just think if you came to us off the bat months could have not been wasted. I noted to you 4 weeks to please contact me to notify your time to get blood drawn. I can not be responible knowing when its time for a patients blood work when we have over several people we are tracking. Simple email or text would set the wheels in motion.

[Bigpete757]

@hardasnails1973 1676 wrote:

Your probably going to uncover a hypothyroidism when next round of test are given.
With your TSH as high as it was. The speculation will be that by given you cortef and going slowly will reveal that low adrenal over prolong peroid of time has shown you to have a deficiency of cortisol resulting decreased thyroid signallin (low tissue thyroid causing an increase in TSH). Your Dr is being cautious and doing the right thing before going full bore. The next step is look at blood work in relationship to cortisol reaction to other hormones. I have several people in your same boat and they experienced the same thing. The next round of test reveals lowered TSH, DHEA, and higher T levels, lowered thyroid levels. After the second round of blood work thyroid is implemented and then cortisol is increased accordingly. Please do remember that after being through the ringer for so long you have to understand the Dr this going against him and we understand this. We work fast and swift but also in cautious pattern according to medical saftey guidelines. We know you want to feel better but do remember this has been going on for months so we know your frustration, but it is better to go slow and steady knowing what medication is really doing to other hormones. Please also remember that you also have other issues going on that are more variables that have to be taken in consideration. If my experience shows after the next round of test the picture will be much more clearer. So all those months and months of questions being unanswered will finally be. Just think if you came to us off the bat months could have not been wasted. I noted to you 4 weeks to please contact me to notify your time to get blood drawn. I can not be responible knowing when its time for a patients blood work when we have over several people we are tracking. Simple email or text would set the wheels in motion.

Thanks for the reply Shawn. I feel a big sigh of relief after reading your post. I now have a good understanding of why we have to take it slow in my case.

Just to clarify one thing, you do want me to email or text you around the 4 week mark to have my blood drawn right. I think that is what you said, but just wanted to make sure.

[hardasnails1973]

@Bigpete757 1679 wrote:

Thanks for the reply Shawn. I feel a big sigh of relief after reading your post. I now have a good understanding of why we have to take it slow in my case.

Just to clarify one thing, you do want me to email or text you around the 4 week mark to have my blood drawn right. I think that is what you said, but just wanted to make sure.

Pete,
Any line of communication will do just give me a heads up that’s all. You should be approaching that time. With the amount of influx of people I can not spend as much time on the phone but i want to reassure you quality of service will not affected. More so my goal is to reassure the person that we feel confident in our line of action and explain why so they understand. Your case is one of the most delicate cases due to extra variables which due to HIPPA I can not or will not discuss. When you read my post they just provide information not any specific information of the patient. To understand what I do is i monitor 3 boards, handle my own clients in my business while dealing with Dr O. The amount of time I spend in just the past month with talking with about health issues would probably be a total loss of about 1500 bucks a week. That does not include emails back and forth.

[Bigpete757]

@hardasnails1973 1680 wrote:

Pete,
Any line of communication will do just give me a heads up that’s all. You should be approaching that time. With the amount of influx of people I can not spend as much time on the phone but i want to reassure you quality of service will not affected. More so my goal is to reassure the person that we feel confident in our line of action and explain why so they understand. Your case is one of the most delicate cases due to extra variables which due to HIPPA I can not or will not discuss. When you read my post they just provide information not any specific information of the patient. To understand what I do is i monitor 3 boards, handle my own clients in my business while dealing with Dr O. The amount of time I spend in just the past month with talking with about health issues would probably be a total loss of about 1500 bucks a week. That does not include emails back and forth.

Thank you for reassuring me and I know that am I am in very good hands with you guys. I can not tell you how good it makes me feel to know that I am on the road to recovery and that it will be done the right way. I will give you a shout in a few weeks to schedule the blood tests.

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