Re: Re: Timed Release Cortisol

[Guest guest]

Thanks, Jan. In what way did they not do well? Any way to know if it is the slow release or just HC itself? I guess I will just have to start when I get it, but I'm curious what to expect. I don't have it yet. Sent from Grace's iPhone

Two other members of our group have not done well on the timed release HC. One had never taken HC before. The other was on the oil capsules from WIP and has asked to go back to them.

I do not do well on any timed release meds and will ask to stay on the oil capsules when I see Dr. S.

I started on 5 mg four times a day with stress dosing up to double that. The only problem I have had is that taking higher doses for more than a week results in my feet swelling up like twin toads. . . . .

>> My doctor wants to start me on 5 mg slow release cortisol and I feel nervous for some reason. I know this is a very low dose compared to the daily 20 mg that many people take. He's basing this on my symptoms and also the fact that my ACTH was high (out of range) and my cortisol was low (but in range). We know this says my brain is wanting my adrenals to make more cortisol, but they can't for some reason.> > Has anyone started on a low dose like this and how did it go? I am not sure what symptoms to look for to know if it is working or if it is too much or not enough or just not right for me. He gave me a few unexpected side effects to watch for: weight gain, acne, nausea, something else I don't remember right now. Does anyone else have feedback about what I might watch for or expect?> > I know a lot of people don't like the slow release, but so far, the slow release T3 is working great for me (at least it seems to be).> > Thanks,> Grace>

[Guest guest]

Thanks, Jan. In what way did they not do well? Any way to know if it is the slow release or just HC itself? I guess I will just have to start when I get it, but I'm curious what to expect. I don't have it yet. Sent from Grace's iPhone

Two other members of our group have not done well on the timed release HC. One had never taken HC before. The other was on the oil capsules from WIP and has asked to go back to them.

I do not do well on any timed release meds and will ask to stay on the oil capsules when I see Dr. S.

I started on 5 mg four times a day with stress dosing up to double that. The only problem I have had is that taking higher doses for more than a week results in my feet swelling up like twin toads. . . . .

>> My doctor wants to start me on 5 mg slow release cortisol and I feel nervous for some reason. I know this is a very low dose compared to the daily 20 mg that many people take. He's basing this on my symptoms and also the fact that my ACTH was high (out of range) and my cortisol was low (but in range). We know this says my brain is wanting my adrenals to make more cortisol, but they can't for some reason.> > Has anyone started on a low dose like this and how did it go? I am not sure what symptoms to look for to know if it is working or if it is too much or not enough or just not right for me. He gave me a few unexpected side effects to watch for: weight gain, acne, nausea, something else I don't remember right now. Does anyone else have feedback about what I might watch for or expect?> > I know a lot of people don't like the slow release, but so far, the slow release T3 is working great for me (at least it seems to be).> > Thanks,> Grace>

[Guest guest]

That helps. Thanks. We'll see how it goes. Sent from Grace's iPhone

The person who had already been on HC said that the timed release just pooped out on her late in the day. I don't know what happened with the other person.

> > >> > > My doctor wants to start me on 5 mg slow release cortisol and I feel nervous for some reason. I know this is a very low dose compared to the daily 20 mg that many people take. He's basing this on my symptoms and also the fact that my ACTH was high (out of range) and my cortisol was low (but in range). We know this says my brain is wanting my adrenals to make more cortisol, but they can't for some reason.> > > > > > Has anyone started on a low dose like this and how did it go? I am not sure what symptoms to look for to know if it is working or if it is too much or not enough or just not right for me. He gave me a few unexpected side effects to watch for: weight gain, acne, nausea, something else I don't remember right now. Does anyone else have feedback about what I might watch for or expect? & g!

t; > > > > > I know a lot of people don't like the slow release, but so far, the slow release T3 is working great for me (at least it seems to be).> > > > > > Thanks,> > > Grace> > >> > > >>

[Guest guest]

Grace,

I have been on the timed release compounded HC since 2007. I'm one of those people that do much better on it than regular HC because my body reacts with worsened heart palps and dizzyness if I get the full doses in my system all at once. I get my HC from Compounding Corner in Sugar Land and the pharmacist UPS's them to me. I also do much better on the compounded HC than I do with prescription HC such as Cortef.

There are several factors to consider.

1.) Timed release is going to be much more expensive, as it has to be compounded. There is NO generic timed release HC that can be obtained from a regular pharmacy. DUOCORT is in the works but won't be released for at least another year.

2.) You're on a very small dose, which makes me wonder if the cost from the compounder is worth it. If I was just taking 5 mg. I'd split up regular pills and take them at intervals during the day. Or, as Jan suggested, the capsules from WIP are good as well and fairly cost effective. I keep the 1 mg. and 2 mg. on hand when I need just a little extra 'bump' in my dose. I am on full replacement HC as I have 's.

3.) If you have digestive issues, sometimes the timed release doesn't work as well. The pharmacist mixes the HC with HYPROMELOS or METHOCEL, which is what makes it timed release and usually puts it in a base of acidophilus. But you have to ask what they use. The idea is that the agent dissolves slowly over time as it moves throught the gut and then releases the HC that is mixed with it. Usually, the pharmacist can use either Cortef, generic HC from a pharmaceutical company or in the case of Compounding Corner, he uses the same 'more natural' HC that WIP uses, which is grown in a natural medium. WIP can explain it to you or call Maguadog, the pharmacist at C.C.

4.) EVEN with timed release you may need more in the afternoon as Jan mentioned. The only way to tell what is really going on in your body is to have saliva and/or blood tests periodically WHILE you are on HC and note symptoms as well. I have had dozens of these tests, both on my own through Canary Club and through my doctor. I take my first HC of 12.5 mg. dose early, early morning and about 3-4 hours later it peaks, then falls slowly. I have to take more at lunch and a small amount at dinner. Otherwise, tests show I don't have enough in my system. I will note as well, that I have often had BOTH blood tests in the a.m. AND done saliva tests at the same time and have found them extremely accurate to each other, dispelling the myth that saliva tests are not as accurate. Done correctly, they are most certainly as accurate as blood tests.

It may be of note that in Europe they routinely do something called a 'day curve'. This is where you take your normal HC meds, then they measure, either by blood or saliva, your cortisol levels in the body....up to 10-12 tests in one day. This tells them EXACTLY what your levels are and helps them massage your dose to optimum. They are SO far ahead of us here in the states. Oxford Clinic has determined that saliva tests ARE accurate when done right.

Your doctor is right as far as not wanting you yet on a higher dose. When you get to the 20-30 mg. range of HC, it's almost a surety that your adrenals WILL be supressed, which is something you DON'T want. So take it slow and easy, as they say. Even with the 's it took about 4 months of being on full HC replacement to see that my adrenals were suppressed. This is easily tested because if your levels are measured at around 8 a.m. and you have NOT taken your meds yet, it will tell you whether the adrenals have been working. For MOST healthy people, the adrenals make the lion's share of cortisol before that time of the day, tapering down as the day progresses.

To: Texas_Thyroid_Groups From: joyingrace@...Date: Thu, 28 Oct 2010 22:04:28 -0500Subject: Re: Re: Timed Release Cortisol

That helps. Thanks. We'll see how it goes. Sent from Grace's iPhone

The person who had already been on HC said that the timed release just pooped out on her late in the day. I don't know what happened with the other person.

> > >> > > My doctor wants to start me on 5 mg slow release cortisol and I feel nervous for some reason. I know this is a very low dose compared to the daily 20 mg that many people take. He's basing this on my symptoms and also the fact that my ACTH was high (out of range) and my cortisol was low (but in range). We know this says my brain is wanting my adrenals to make more cortisol, but they can't for some reason.> > > > > > Has anyone started on a low dose like this and how did it go? I am not sure what symptoms to look for to know if it is working or if it is too much or not enough or just not right for me. He gave me a few unexpected side effects to watch for: weight gain, acne, nausea, something else I don't remember right now. Does anyone else have feedback about what I might watch for or expect? & g! t; > > > > > I know a lot of people don't like the slow release, but so far, the slow release T3 is working great for me (at least it seems to be).> > > > > > Thanks,> > > Grace> > >> > > >>

[Guest guest]

Hi ,Thanks for the information. I have already turned in my script to be filled, but I don't know what it is going to cost yet. If it is really expensive, I may reconsider or talk with my doc about another option. Muscle testing shows my body would prefer I try the Isocort route, but the doc feels I really need the HC. I haven't done well in glandulars before, so I'm not sure about trying Isocort. Doc is also suspicious of using animal hormones because he thinks they might cause antibodies. Anyway, I will give it a shot when it is ready. I just hope it helps and I don't have weight gain or acne or any of the other icky side effects he mentioned (like rage). Sent from Grace's iPhone

Grace,

I have been on the timed release compounded HC since 2007. I'm one of those people that do much better on it than regular HC because my body reacts with worsened heart palps and dizzyness if I get the full doses in my system all at once. I get my HC from Compounding Corner in Sugar Land and the pharmacist UPS's them to me. I also do much better on the compounded HC than I do with prescription HC such as Cortef.

There are several factors to consider.

1.) Timed release is going to be much more expensive, as it has to be compounded. There is NO generic timed release HC that can be obtained from a regular pharmacy. DUOCORT is in the works but won't be released for at least another year.

2.) You're on a very small dose, which makes me wonder if the cost from the compounder is worth it. If I was just taking 5 mg. I'd split up regular pills and take them at intervals during the day. Or, as Jan suggested, the capsules from WIP are good as well and fairly cost effective. I keep the 1 mg. and 2 mg. on hand when I need just a little extra 'bump' in my dose. I am on full replacement HC as I have 's.

3.) If you have digestive issues, sometimes the timed release doesn't work as well. The pharmacist mixes the HC with HYPROMELOS or METHOCEL, which is what makes it timed release and usually puts it in a base of acidophilus. But you have to ask what they use. The idea is that the agent dissolves slowly over time as it moves throught the gut and then releases the HC that is mixed with it. Usually, the pharmacist can use either Cortef, generic HC from a pharmaceutical company or in the case of Compounding Corner, he uses the same 'more natural' HC that WIP uses, which is grown in a natural medium. WIP can explain it to you or call Maguadog, the pharmacist at C.C.

4.) EVEN with timed release you may need more in the afternoon as Jan mentioned. The only way to tell what is really going on in your body is to have saliva and/or blood tests periodically WHILE you are on HC and note symptoms as well. I have had dozens of these tests, both on my own through Canary Club and through my doctor. I take my first HC of 12.5 mg. dose early, early morning and about 3-4 hours later it peaks, then falls slowly. I have to take more at lunch and a small amount at dinner. Otherwise, tests show I don't have enough in my system. I will note as well, that I have often had BOTH blood tests in the a.m. AND done saliva tests at the same time and have found them extremely accurate to each other, dispelling the myth that saliva tests are not as accurate. Done correctly, they are most certainly as accurate as blood tests.

It may be of note that in Europe they routinely do something called a 'day curve'. This is where you take your normal HC meds, then they measure, either by blood or saliva, your cortisol levels in the body....up to 10-12 tests in one day. This tells them EXACTLY what your levels are and helps them massage your dose to optimum. They are SO far ahead of us here in the states. Oxford Clinic has determined that saliva tests ARE accurate when done right.

Your doctor is right as far as not wanting you yet on a higher dose. When you get to the 20-30 mg. range of HC, it's almost a surety that your adrenals WILL be supressed, which is something you DON'T want. So take it slow and easy, as they say. Even with the 's it took about 4 months of being on full HC replacement to see that my adrenals were suppressed. This is easily tested because if your levels are measured at around 8 a.m. and you have NOT taken your meds yet, it will tell you whether the adrenals have been working. For MOST healthy people, the adrenals make the lion's share of cortisol before that time of the day, tapering down as the day progresses.

To: Texas_Thyroid_Groups From: joyingrace@...Date: Thu, 28 Oct 2010 22:04:28 -0500Subject: Re: Re: Timed Release Cortisol

That helps. Thanks. We'll see how it goes. Sent from Grace's iPhone

The person who had already been on HC said that the timed release just pooped out on her late in the day. I don't know what happened with the other person.

> > >> > > My doctor wants to start me on 5 mg slow release cortisol and I feel nervous for some reason. I know this is a very low dose compared to the daily 20 mg that many people take. He's basing this on my symptoms and also the fact that my ACTH was high (out of range) and my cortisol was low (but in range). We know this says my brain is wanting my adrenals to make more cortisol, but they can't for some reason.> > > > > > Has anyone started on a low dose like this and how did it go? I am not sure what symptoms to look for to know if it is working or if it is too much or not enough or just not right for me. He gave me a few unexpected side effects to watch for: weight gain, acne, nausea, someth!

ing else I don't remember right now. Does anyone else have feedback about what I might watch for or expect? & g! t; > > > > > I know a lot of people don't like the slow release, but so far, the slow release T3 is working great for me (at least it seems to be).> > > > > > Thanks,> > > Grace> > >> > > >>

[Guest guest]

Grace,

No one I know, or on the 's site has ever said they experience acne or rage as a side effect of strictly replacement hydrocortisone! I don't know where the doctor has gotten his information?

You can get acne from DHEA or testosterone, but I'm not aware of any other hormones that affect it. Rage is a side effect of high levels of the steriods they use for body building, not for the kind of HC we take.

What does happen is the weight gain, but not likely if you are taking that small of a dose. It is an often commented on problem with folks who were previously very thin because of very low cortisol, then are taking the physiologic dose of 15+ more mgs. Personally, I was always around 125 lbs. then down to 110 when I developed 's, then unfortunately put on 20 lbs. the first year I was on a full replacement dose. But, I am also disabled so exercise isn't much of an option.

I have used Isocort before and I also have it on hand and use it the same way as the HC from WIP, just to bump up a dose or for use in the middle of the night if I need just a little HC. For the most part, the agreement is that despite the fact that Bezweken (the mfg.) says each pellet contains 2.5 mg. , most of us that have used it comment that;

1.) It seems around 1.5 mg dose as compared to HC at the same dose of 1-2 mg.

2.) It seems MUCH gentler to the system than HC, even the HC from WIP. Almost no one complains of any side effects. It does contain small amounts of Echinacea so that's something to consider.

3.) It's cheap.....240 pellets in a container.

4.) It contains the full complement of hormone that the cortex of the adrenal contains

5.) It's great if you need to agment your own production, but not strong enough if you need full replacment HC. You probably could take 15-20 pellets a day if you had to, but I'd rather be on HC. That's what happened to me. I started out using Isocort and then ACE (Acrenal Cortex Extract) drops on the advice of Dr. Neville from the Clymer facility, but then he agreed that I had 's and needed real HC.

6.) It still needs to be viewed as HC, although in a more natural form from sheep adrenals. And, needs to be monitored the same way as HC so as to not exceed dose. The bottle says not to use more than 8 pellets a day.

To: Texas_Thyroid_Groups From: joyingrace@...Date: Fri, 29 Oct 2010 11:13:48 -0500Subject: Re: Re: Timed Release Cortisol

Hi ,

Thanks for the information. I have already turned in my script to be filled, but I don't know what it is going to cost yet. If it is really expensive, I may reconsider or talk with my doc about another option. Muscle testing shows my body would prefer I try the Isocort route, but the doc feels I really need the HC. I haven't done well in glandulars before, so I'm not sure about trying Isocort. Doc is also suspicious of using animal hormones because he thinks they might cause antibodies.

Anyway, I will give it a shot when it is ready. I just hope it helps and I don't have weight gain or acne or any of the other icky side effects he mentioned (like rage). Sent from Grace's iPhone

Grace, I have been on the timed release compounded HC since 2007. I'm one of those people that do much better on it than regular HC because my body reacts with worsened heart palps and dizzyness if I get the full doses in my system all at once. I get my HC from Compounding Corner in Sugar Land and the pharmacist UPS's them to me. I also do much better on the compounded HC than I do with prescription HC such as Cortef. There are several factors to consider. 1.) Timed release is going to be much more expensive, as it has to be compounded. There is NO generic timed release HC that can be obtained from a regular pharmacy. DUOCORT is in the works but won't be released for at least another year. 2.) You're on a very small dose, which makes me wonder if the cost from the compounder is worth it. If I was just taking 5 mg. I'd split up regular pills and take them at intervals during the day. Or, as Jan suggested, the capsules from WIP are good as well and fairly cost effective. I keep the 1 mg. and 2 mg. on hand when I need just a little extra 'bump' in my dose. I am on full replacement HC as I have 's. 3.) If you have digestive issues, sometimes the timed release doesn't work as well. The pharmacist mixes the HC with HYPROMELOS or METHOCEL, which is what makes it timed release and usually puts it in a base of acidophilus. But you have to ask what they use. The idea is that the agent dissolves slowly over time as it moves throught the gut and then releases the HC that is mixed with it. Usually, the pharmacist can use either Cortef, generic HC from a pharmaceutical company or in the case of Compounding Corner, he uses the same 'more natural' HC that WIP uses, which is grown in a natural medium. WIP can explain it to you or call Maguadog, the pharmacist at C.C. 4.) EVEN with timed release you may need more in the afternoon as Jan mentioned. The only way to tell what is really going on in your body is to have saliva and/or blood tests periodically WHILE you are on HC and note symptoms as well. I have had dozens of these tests, both on my own through Canary Club and through my doctor. I take my first HC of 12.5 mg. dose early, early morning and about 3-4 hours later it peaks, then falls slowly. I have to take more at lunch and a small amount at dinner. Otherwise, tests show I don't have enough in my system. I will note as well, that I have often had BOTH blood tests in the a.m. AND done saliva tests at the same time and have found them extremely accurate to each other, dispelling the myth that saliva tests are not as accurate. Done correctly, they are most certainly as accurate as blood tests. It may be of note that in Europe they routinely do something called a 'day curve'. This is where you take your normal HC meds, then they measure, either by blood or saliva, your cortisol levels in the body....up to 10-12 tests in one day. This tells them EXACTLY what your levels are and helps them massage your dose to optimum. They are SO far ahead of us here in the states. Oxford Clinic has determined that saliva tests ARE accurate when done right. Your doctor is right as far as not wanting you yet on a higher dose. When you get to the 20-30 mg. range of HC, it's almost a surety that your adrenals WILL be supressed, which is something you DON'T want. So take it slow and easy, as they say. Even with the 's it took about 4 months of being on full HC replacement to see that my adrenals were suppressed. This is easily tested because if your levels are measured at around 8 a.m. and you have NOT taken your meds yet, it will tell you whether the adrenals have been working. For MOST healthy people, the adrenals make the lion's share of cortisol before that time of the day, tapering down as the day progresses.

To: Texas_Thyroid_Groups From: joyingrace@...Date: Thu, 28 Oct 2010 22:04:28 -0500Subject: Re: Re: Timed Release Cortisol

That helps. Thanks. We'll see how it goes. Sent from Grace's iPhone

The person who had already been on HC said that the timed release just pooped out on her late in the day. I don't know what happened with the other person. > > >> > > My doctor wants to start me on 5 mg slow release cortisol and I feel nervous for some reason. I know this is a very low dose compared to the daily 20 mg that many people take. He's basing this on my symptoms and also the fact that my ACTH was high (out of range) and my cortisol was low (but in range). We know this says my brain is wanting my adrenals to make more cortisol, but they can't for some reason.> > > > > > Has anyone started on a low dose like this and how did it go? I am not sure what symptoms to look for to know if it is working or if it is too much or not enough or just not right for me. He gave me a few unexpected side effects to watch for: weight gain, acne, nausea, someth! ing else I don't remember right now. Does anyone else have feedback about what I might watch for or expect? & g! t; > > > > > I know a lot of people don't like the slow release, but so far, the slow release T3 is working great for me (at least it seems to be).> > > > > > Thanks,> > > Grace> > >> > > >>

[Guest guest]

,I had told the doctor I had reservations about trying the HC, so he was trying to give me every possible negative reaction. He said the rage is extremely rare, but has happened. I think I've had more of a "rage" issue from being low cortisol and having a very poor stress response. That doesn't go well with being a mom to two young and very active boys!You know, the weight issue is very interesting to me. It has always surprised me that I have been pencil thin when I've been diagnosed hypothyroid for almost 19 years. I am not quite 5'6" and used to always weight between 113 and 118. Now I'm more like 123-128 ever since I started taking higher levels of dessicated thyroid and suppressing my own TSH. I don't know if it is that I finally shut off my own thyroid, which was working some when I was only on .05 synthroid, or that I finally taxed my adrenals or just the high reverse T3 problem I have now. Regardless, I never realized the fact that I stayed so thin was possibly due to low cortisol.I miss being naturally thin regardless of diet/exercise. I was getting back to being thin, but when I added progesterone, I put on about 10 pounds. I've stopped it, but the weight hasn't gone away. It is around my middle and in my arms. We'll see what happens with the cortisol. Maybe I will have more energy to exercise and be active and it will balance it out.My script is ready to pick up ($25 for one month). I am going to pick it up along with a bottle of the Isocort. My doctor was okay with either one, but just said he thought I'd do better with the script. I might try both to see which one I prefer. Is it the kind of thing one can evaluate within a day or two? It seems that way from the comments people share.Thanks again for sharing your insight and experience. Grace

Grace,

No one I know, or on the 's site has ever said they experience acne or rage as a side effect of strictly replacement hydrocortisone! I don't know where the doctor has gotten his information?

You can get acne from DHEA or testosterone, but I'm not aware of any other hormones that affect it. Rage is a side effect of high levels of the steriods they use for body building, not for the kind of HC we take.

What does happen is the weight gain, but not likely if you are taking that small of a dose. It is an often commented on problem with folks who were previously very thin because of very low cortisol, then are taking the physiologic dose of 15+ more mgs. Personally, I was always around 125 lbs. then down to 110 when I developed 's, then unfortunately put on 20 lbs. the first year I was on a full replacement dose. But, I am also disabled so exercise isn't much of an option.

I have used Isocort before and I also have it on hand and use it the same way as the HC from WIP, just to bump up a dose or for use in the middle of the night if I need just a little HC. For the most part, the agreement is that despite the fact that Bezweken (the mfg.) says each pellet contains 2.5 mg. , most of us that have used it comment that;

1.) It seems around 1.5 mg dose as compared to HC at the same dose of 1-2 mg.

2.) It seems MUCH gentler to the system than HC, even the HC from WIP. Almost no one complains of any side effects. It does contain small amounts of Echinacea so that's something to consider.

3.) It's cheap.....240 pellets in a container.

4.) It contains the full complement of hormone that the cortex of the adrenal contains

5.) It's great if you need to agment your own production, but not strong enough if you need full replacment HC. You probably could take 15-20 pellets a day if you had to, but I'd rather be on HC. That's what happened to me. I started out using Isocort and then ACE (Acrenal Cortex Extract) drops on the advice of Dr. Neville from the Clymer facility, but then he agreed that I had 's and needed real HC.

6.) It still needs to be viewed as HC, although in a more natural form from sheep adrenals. And, needs to be monitored the same way as HC so as to not exceed dose. The bottle says not to use more than 8 pellets a day.

To: Texas_Thyroid_Groups From: joyingrace@...Date: Fri, 29 Oct 2010 11:13:48 -0500Subject: Re: Re: Timed Release Cortisol

Hi ,

Thanks for the information. I have already turned in my script to be filled, but I don't know what it is going to cost yet. If it is really expensive, I may reconsider or talk with my doc about another option. Muscle testing shows my body would prefer I try the Isocort route, but the doc feels I really need the HC. I haven't done well in glandulars before, so I'm not sure about trying Isocort. Doc is also suspicious of using animal hormones because he thinks they might cause antibodies.

Anyway, I will give it a shot when it is ready. I just hope it helps and I don't have weight gain or acne or any of the other icky side effects he mentioned (like rage). Sent from Grace's iPhone

Grace, I have been on the timed release compounded HC since 2007. I'm one of those people that do much better on it than regular HC because my body reacts with worsened heart palps and dizzyness if I get the full doses in my system all at once. I get my HC from Compounding Corner in Sugar Land and the pharmacist UPS's them to me. I also do much better on the compounded HC than I do with prescription HC such as Cortef. There are several factors to consider. 1.) Timed release is going to be much more expensive, as it has to be compounded. There is NO generic timed release HC that can be obtained from a regular pharmacy. DUOCORT is in the works but won't be released for at least another year. 2.) You're on a very small dose, which makes me wonder if the cost from the compounder is worth it. If I was just taking 5 mg. I'd split up regular pills and take them at intervals during the day. Or, as Jan suggested, the capsules from WIP are good as well and fairly cost effective. I keep the 1 mg. and 2 mg. on hand when I need just a little extra 'bump' in my dose. I am on full replacement HC as I have 's. 3.) If you have digestive issues, sometimes the timed release doesn't work as well. The pharmacist mixes the HC with HYPROMELOS or METHOCEL, which is what makes it timed release and usually puts it in a base of acidophilus. But you have to ask what they use. The idea is that the agent dissolves slowly over time as it moves throught the gut and then releases the HC that is mixed with it. Usually, the pharmacist can use either Cortef, generic HC from a pharmaceutical company or in the case of Compounding Corner, he uses the same 'more natural' HC that WIP uses, which is grown in a natural medium. WIP can explain it to you or call Maguadog, the pharmacist at C.C. 4.) EVEN with timed release you may need more in the afternoon as Jan mentioned. The only way to tell what!

is really going on in your body is to have saliva and/or blood tests periodically WHILE you are on HC and note symptoms as well. I have had dozens of these tests, both on my own through Canary Club and through my doctor. I take my first HC of 12.5 mg. dose early, early morning and about 3-4 hours later it peaks, then falls slowly. I have to take more at lunch and a small amount at dinner. Otherwise, tests show I don't have enough in my system. I will note as well, that I have often had BOTH blood tests in the a.m. AND done saliva tests at the same time and have found them extremely accurate to each other, dispelling the myth that saliva tests are not as accurate. Done correctly, they are most certainly as accurate as blood tests. It may be of note that in Europe they routinely do something called a 'day curve'. This is where you take your normal HC meds, then they measure, either by blood or saliva, your cortisol levels in the body....up to 10-12 tests in one day. This tells them EXACTLY what your levels are and helps them massage your dose to optimum. They are SO far ahead of us here in the states. Oxford Clinic has determined that saliva tests ARE accurate when done right. Your doctor is right as far as not wanting you yet on a higher dose. When you get to the 20-30 mg. range of HC, it's almost a surety that your adrenals WILL be supressed, which is something you DON'T want. So take it slow and easy, as they say. Even with the 's it took about 4 months of being on full HC replacement to see that my adrenals were suppressed. This is easily tested because if your levels are measured at around 8 a.m. and you have NOT taken your meds yet, it will tell you whether the adrenals have been working. For MOST healthy people, the adrenals make the lion's share of cortisol before that time of the day, tapering down as the day progresses.

To: Texas_Thyroid_Groups From: joyingrace@...Date: Thu, 28 Oct 2010 22:04:28 -0500Subject: Re: Re: Timed Release Cortisol

That helps. Thanks. We'll see how it goes. Sent from Grace's iPhone

The person who had already been on HC said that the timed release just pooped out on her late in the day. I don't know what happened with the other person. > > >> > > My doctor wants to start me on 5 mg slow release cortisol and I feel nervous for some reason. I know this is a very low dose compared to the daily 20 mg that many people take. He's basing this on my symptoms and also the fact that my ACTH was high (out of range) and my cortisol was low (but in range). We know this says my brain is wanting my adrenals to make m!

ore cortisol, but they can't for some reason.> > > > > > Has anyone started on a low dose like this and how did it go? I am not sure what symptoms to look for to know if it is working or if it is too much or not enough or just not right for me. He gave me a few unexpected side effects to watch for: weight gain, acne, nausea, someth! ing else I don't remember right now. Does anyone else have feedback about what I might watch for or expect? & g! t; > > > > > I know a lot of people don't like the slow release, but so far, the slow release T3 is working great for me (at least it seems to be).> > > > > > Thanks,> > > Grace> > >> > > >>

[Guest guest]

, Thank you so much for your

posts. They have been very helpful for me.

Do you ever get too much cortisol?

How do you feel if you get too much?

How do you feel when not enough? I’m

trying to sort out what’s thyroid and what’s adrenal? I know

I’m low in both.

I am working with a doctor. I’m

just kind of in a holding pattern right now waiting for my appointment to go

over my current labs.

Thanks again,

Kim

From:

Texas_Thyroid_Groups

[mailto:Texas_Thyroid_Groups ] On

Behalf Of Stultz

Sent: Friday, October 29, 2010

5:45 PM

To: texas_thyroid_groups

Subject: RE:

Re: Timed Release Cortisol

Grace,

No one I know, or on the 's site has

ever said they experience acne or rage as a side effect of strictly replacement

hydrocortisone! I don't know where the doctor has gotten his information?

You can get acne from DHEA or testosterone, but I'm not aware of any other

hormones that affect it. Rage is a side effect of high levels of the steriods

they use for body building, not for the kind of HC we take.

What does happen is the weight gain, but not likely if you are taking that

small of a dose. It is an often commented on problem with folks who were

previously very thin because of very low cortisol, then are taking the

physiologic dose of 15+ more mgs. Personally, I was always around 125 lbs. then

down to 110 when I developed 's, then

unfortunately put on 20 lbs. the first year I was on a full replacement dose.

But, I am also disabled so exercise isn't much of an option.

I have used Isocort before and I also have it on hand and use it the same way

as the HC from WIP, just to bump up a dose or for use in the middle of the

night if I need just a little HC. For the most part, the agreement is that

despite the fact that Bezweken (the mfg.) says each pellet contains 2.5 mg.

, most of us that have used it comment that;

1.) It seems around 1.5 mg dose as compared to HC at the same dose of

1-2 mg.

2.) It seems MUCH gentler to the system than HC, even the HC from WIP.

Almost no one complains of any side effects. It does contain small amounts of

Echinacea so that's something to consider.

3.) It's cheap.....240 pellets in a container.

4.) It contains the full complement of hormone that the cortex of the

adrenal contains

5.) It's great if you need to agment your own production, but not strong enough

if you need full replacment HC. You probably could take 15-20 pellets a day if

you had to, but I'd rather be on HC. That's what happened to me. I started out

using Isocort and then ACE (Acrenal Cortex Extract) drops on the advice of Dr.

Neville from the Clymer facility, but then he agreed that I had 's and needed real HC.

6.) It still needs to be viewed as HC, although in a more natural form

from sheep adrenals. And, needs to be monitored the same way as HC so as

to not exceed dose. The bottle says not to use more than 8 pellets a

day.

To:

Texas_Thyroid_Groups

From: joyingrace@...

Date: Fri, 29 Oct 2010 11:13:48 -0500

Subject: Re: Re: Timed Release Cortisol

Hi ,

Thanks for the information. I have already turned in my script to be

filled, but I don't know what it is going to cost yet. If it is really

expensive, I may reconsider or talk with my doc about another option. Muscle

testing shows my body would prefer I try the Isocort route, but the doc feels I

really need the HC. I haven't done well in glandulars before, so I'm not sure

about trying Isocort. Doc is also suspicious of using animal hormones because

he thinks they might cause antibodies.

Anyway, I will give it a shot when it is ready. I just hope it helps

and I don't have weight gain or acne or any of the other icky side effects he

mentioned (like rage).

Sent from Grace's iPhone

Grace,

I have been on the timed release compounded HC since 2007. I'm one of

those people that do much better on it than regular HC because my

body reacts with worsened heart palps and dizzyness if I get the full

doses in my system all at once. I get my HC from Compounding Corner in Sugar Land

and the pharmacist UPS's them to me. I also do much better on the compounded HC

than I do with prescription HC such as Cortef.

There are several factors to consider.

1.) Timed release is going to be much more expensive, as it has to be

compounded. There is NO generic timed release HC that can be obtained from a

regular pharmacy. DUOCORT is in the works but won't be released for at least

another year.

2.) You're on a very small dose, which makes me wonder if the cost from

the compounder is worth it. If I was just taking 5 mg. I'd split up regular

pills and take them at intervals during the day. Or, as Jan suggested, the

capsules from WIP are good as well and fairly cost effective. I keep

the 1 mg. and 2 mg. on hand when I need just a little extra 'bump' in my dose.

I am on full replacement HC as I have 's.

3.) If you have digestive issues, sometimes the timed release doesn't work

as well. The pharmacist mixes the HC with HYPROMELOS or METHOCEL, which is what

makes it timed release and usually puts it in a base of acidophilus. But

you have to ask what they use. The idea is that the agent dissolves slowly over

time as it moves throught the gut and then releases the HC that is mixed

with it. Usually, the pharmacist can use either Cortef, generic HC from a

pharmaceutical company or in the case of Compounding Corner, he uses the same

'more natural' HC that WIP uses, which is grown in a natural medium. WIP can

explain it to you or call Maguadog, the pharmacist at C.C.

4.) EVEN with timed release you may need more in the afternoon as Jan

mentioned. The only way to tell what is really going on in your body is to have

saliva and/or blood tests periodically WHILE you are on HC and note symptoms as

well. I have had dozens of these tests, both on my own through Canary

Club and through my doctor. I take my first HC of 12.5 mg. dose early,

early morning and about 3-4 hours later it peaks, then falls slowly.

I have to take more at lunch and a small amount at dinner.

Otherwise, tests show I don't have enough in my system. I will note as well,

that I have often had BOTH blood tests in the a.m. AND done saliva tests at the

same time and have found them extremely accurate to each other, dispelling the

myth that saliva tests are not as accurate. Done correctly, they are most

certainly as accurate as blood tests.

It may be of note that in Europe they

routinely do something called a 'day curve'. This is where you take your

normal HC meds, then they measure, either by blood or saliva, your cortisol

levels in the body....up to 10-12 tests in one day. This tells

them EXACTLY what your levels are and helps them massage your dose to

optimum. They are SO far ahead of us here in the states. Oxford Clinic has

determined that saliva tests ARE accurate when done right.

Your doctor is right as far as not wanting you yet on a higher dose. When

you get to the 20-30 mg. range of HC, it's almost a surety that your adrenals

WILL be supressed, which is something you DON'T want. So take it slow

and easy, as they say. Even with the 's it

took about 4 months of being on full HC replacement to see that my adrenals

were suppressed. This is easily tested because if your levels are measured

at around 8 a.m. and you have NOT taken your meds yet, it will tell you

whether the adrenals have been working. For MOST healthy people, the

adrenals make the lion's share of cortisol before that time of the day,

tapering down as the day progresses.

To: Texas_Thyroid_Groups

From: joyingrace@...

Date: Thu, 28 Oct 2010 22:04:28 -0500

Subject: Re: Re: Timed Release Cortisol

That helps. Thanks. We'll see how it goes.

Sent from Grace's iPhone

On Oct 28, 2010, at 9:47 PM, " texasthyroid "

wrote:

The person who had already

been on HC said that the timed release just pooped out on her late in the day.

I don't know what happened with the other person.

> > >

> > > My doctor wants to start me on 5 mg slow release cortisol and I

feel nervous for some reason. I know this is a very low dose compared to the

daily 20 mg that many people take. He's basing this on my symptoms and also the

fact that my ACTH was high (out of range) and my cortisol was low (but in

range). We know this says my brain is wanting my adrenals to make more

cortisol, but they can't for some reason.

> > >

> > > Has anyone started on a low dose like this and how did it go? I

am not sure what symptoms to look for to know if it is working or if it is too

much or not enough or just not right for me. He gave me a few unexpected side

effects to watch for: weight gain, acne, nausea, someth! ing else I don't remember

right now. Does anyone else have feedback about what I might watch for or

expect?

& g! t; > >

> > > I know a lot of people don't like the slow release, but so far,

the slow release T3 is working great for me (at least it seems to be).

> > >

> > > Thanks,

> > > Grace

> > >

> >

> >

>