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Addison's Disease Message Board


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Re: Cortef dosing
May 6, 2007
I am not taking DHEA. My doctor hasn't even mentioned it to me. My level was half of the lowest normal level so I know I am pretty deficient in that too. I am noticing I have some times when I am not as tired but everyday is still a challenge. I see the doctor next week so maybe he will switch my dose around. Thanks everyone.
Kim
Re: Cortef dosing
May 7, 2007
Kim,

I am no endocrinologist, but it does seem stange that you should have your doses strung out throughout the day. In the normal, cortisol producing body the adrenals squeeze out their biggest doses just as we awake in the am, with another boost in the early afternoon, then it tapers off to very little as we sleep. Has your MD given you a reason that they want to dose you this way? I am not as educated about Addisons in conjunction with other diagnoses, so I don't know if there is a difference in treatment.

I seem to also be developing type 1 diabetes, thus giving me the ever-so-distinguished (tongue in cheek) diagnosis of Schmidt's, but I have no formal diagnosis at present. But that is as far as my studying has taken me.

As for the DHEA, I read that around the world they are studying the effects of DHEA in people with adrenal insufficiency and have found that it is quite effective in improving mood and energy, plus it is also supposed to help boost the immune system. I thought, "What the heck, I'll try it!" Since it's over the counter here, it made sense. They are not aware of what the long term side effects are, so most MD's shy away from suggesting it. But it has really helped me. I also take, ready now, Vitamin C, Vitamin D, Calcium, & Super B Vitamin to try to boost my body with nutrients. All these have helped me find a 'balance' and seem to keep me going, and I need it. I have a husband, four kids, and a part time job as a nurse to keep up with!

I hope you can get some good answers from your MD's. I'm sorry that you have to deal with both Addison's and Lyme's diseases. I hope things will clear up for you in regards to how to treat both!

Blessings to you,
MaryAnn =-)
Re: Cortef dosing
May 7, 2007
Sarah,

As for hair growth, I haven't noticed anything more than what I was already experiencing with the steriods. I pluck my own eyebrows, and wow! since the Cortef, do I have to keep on top of them now! Other than that, I haven't really any qualms with it. The biggest thing is that I can potentially worry about is the unknown result of long term use. DHEA caused cancer in the lab rats, but it doesn't correlate well to humans (so I've read) because rats don't naturally make DHEA in the same way that we do, if at all. So I do take that chance when I take DHEA. But what doesn't cause cancer? I know it sounds kind of irresponsible, but compared to how the DHEA as increased my daily moods and energy, I am willing to take the risk, esp since I have a low cancer risk. But we all have to make our own educated decisions, don't we? =-)

I am a research freak, it's just a lot of fun for me for some reason. So I looked up Lyme's dx in conjunction with Addisons. Lyme and Addisons does seem like a very difficult thing to deal with, and a challenge to balance. It seems to me that the signs and symptoms can be almost identical to each other, esp if there is no initial rash or rememberance of being bit by a tick. It's very fascinating. Have you read the internet site written by WildCondor? Sounds like a wild situation, but I am glad she is feeling better. I certainly hope that you two don't have to deal with what she dealt with!

Blessings to you, Kim and Sarah!
I hope and pray you can get things settled and understood soon. =-)
MaryAnn
Re: Cortef dosing
May 8, 2007
Maryann
Hey how are you today? It is a huge challenge for my doctor to be treating both Lyme and AI. He told me he could send me to someone else to treat the AI but said he preferred to treat both since he could keep on top of medications and stuff like that. I first went to him because of my chronic fatigue. I knew other things were going on because I had over 30 odd symptoms and would't take CFS as my diagnosis. I am like you..I read and search for information all the time. I love hearing from other people to get ideas about treatments and what works for them. I finally got to my current doctor(it took over 2 months) and he knew exactly what to do for me and did all the proper testing. It was nice to have someone who actually believed me. That was probably the worse part for me through all this. I didn't look sick so it was hard for any of the 8 doctors I saw to believe me. I was even referred to a psychiatrist!
I did read Wild Condors story. I am thankful that I am not as bad off as some people. I always try to remember that when I am feeling sorry for myself. I am lucky I never had any of the cognitive problems etc. I think right now the AI is causing more problems than the lyme now. I have been on abx for 6 months and alot of my symptoms are gone as of now. I am still having the herx reaction so I know there are still lots of bacteria in me.
I am still going to look into the DHEA and talk with the doctor. I have a feeling he just might change the cortef dosing around a little. Hopefully that might give me some more energy during the day when I need it!
I hope you have a good day. It is again a warm sunny day in NH. I must get out and enjoy it.
Kim
Re: Cortef dosing
May 8, 2007
[QUOTE=making777;2969102]Sarah,

As for hair growth, I haven't noticed anything more than what I was already experiencing with the steriods. I pluck my own eyebrows, and wow! since the Cortef, do I have to keep on top of them now! Other than that, I haven't really any qualms with it. The biggest thing is that I can potentially worry about is the unknown result of long term use. DHEA caused cancer in the lab rats, but it doesn't correlate well to humans (so I've read) because rats don't naturally make DHEA in the same way that we do, if at all. So I do take that chance when I take DHEA. But what doesn't cause cancer? I know it sounds kind of irresponsible, but compared to how the DHEA as increased my daily moods and energy, I am willing to take the risk, esp since I have a low cancer risk. But we all have to make our own educated decisions, don't we? =-)

I am a research freak, it's just a lot of fun for me for some reason. So I looked up Lyme's dx in conjunction with Addisons. Lyme and Addisons does seem like a very difficult thing to deal with, and a challenge to balance. It seems to me that the signs and symptoms can be almost identical to each other, esp if there is no initial rash or rememberance of being bit by a tick. It's very fascinating. Have you read the internet site written by WildCondor? Sounds like a wild situation, but I am glad she is feeling better. I certainly hope that you two don't have to deal with what she dealt with!

Blessings to you, Kim and Sarah!
I hope and pray you can get things settled and understood soon. =-)
MaryAnn[/QUOTE]

Maryann, thanks for the reply. I have read the info about DHEA also, and of course scared to take it. I am also like you and research everything. I have spent years studying everything that had a resemblence to my symptoms, and i also do that with meds too. It is definately hard dealing with both AI & LD, since the meds for AI make the LD worse, its like, what do we do. We have to wait until our adrenals are completely none functional for it to benefit us to take the steriods. I had a tick embedded in my leg in 1989 when I lived on Whidbey Island. I was a Park Assistant for Wash. St. Parks and Rec. @ Deception Pass St. Park. About a month later I got really sick, but didn't put the two together. I have never felt completely like myself since then, but still not completely sure I got LD then. But another Asst. had the same thing the year before, and he never has recovered. Plus alot of babies born with LD are autistic and our Ranger's daughter was. Then in 97 here in Texas I got the Bull's eye rashes, and horrible headaches. But my Lyme test was neg. But it was just the Elisa which is crap. Spent the past 9 years trying to figure out what was wrong, and finally got the LD diag. last Oct. I have had the AI diag. for 4 years though. Lyme is called the great imitator because it has so many different symptoms, that are so much like other diseases, especially autoimmune diseases and AI. I am pretty sure that my dad has it too,they live 1/2 mile from the St Park and have spent their lives outside on the trails. He has really bad symptoms all the congnitive ones, bell's Palsy, everything has happened to him. But he insistes that he doesn't have LD. I finally talked him into asking his doc to test him and she refused saying that LD doesn't exist in NW WA. ST. She is an idiot. Vancouver BC has the highest cases of LD in all of Canada, does she think the deer and people they don't cross the border.:dizzy: when I worked in the St. Park half of our campers were from BC and they brought thier pets with them too. Unfortunately it is this kind of ignorance that keeps people from getting diag. and becoming chronic. I have spent the past 6 months reading and researching everything that I can find on it, it is an amazing and scary disease. Once you research it though then you start recognizing things in other people that relate to Lyme especially people who have had Mono, CFS, Fibro. My son also has it, he got his diag. 2 weeks before I did. I had him tested for the WA strains but he was neg. Not sure whether he got it from WA. or Texas.
I hope that you are doing well, and it's not raining up there!:cool: Here's some Texas sun!! sincerely, Sarah:wave:
Re: Cortef dosing
May 10, 2007
Hello Sarah & Kim!

Yes, you guys have a complicated road and you will be in my prayers, if you don't mind that I say that. As for the DHEA, I can understand why you would be cautious. In my case, it's more cut and dry. The adrenals make DHEA, and those with adrenal insufficeincy, like us, make less DHEA than the average person our age. Therefore, it can be very beneficial for us, as I have seen that it is for me. But who knows whether it would be good for the Lyme's? In my thought processes and research, the DHEA is said to boost the immune system, which I think would be good for Lyme, but I don't know! There could be all kinds of other factors that I have no idea about.

We are in a very interesting place with our diagnosis, are we not? I went through a lot when I started this 'journey to diagnosis', but it was not as drawn out as I have read a lot of people have gone through. I beleive I have signs and symptoms since my teen years, but the insufficiency had not progressed to point of the need for meds until now. But, I have had a few things in my life that have made me well acquainted with the disease, so when I began to realize that I had the symptoms, I was able to push for the right tests and to the right doctors. I did have one MD who thought I might want a psych consult (ah - no) and one who was this close to calling me 'fibromyalgia', which I would NOT settle with. But, all in the past. I am just glad to have a diagnosis, and way to better health!

Kim, keep us posted! I would love to hear about how the DHEA works for you if you try it!
Sarah, thank you so much for the sunshine you 'sent'! =-) Do you know that it has been absolutely beautiful these last 3-4 days around here? Talk about getting out and synthesizing some Vitamin D!

And this morning, another great day with the beautiful sun shining. I hope you guys have a wonderful day! :)

Blessings to you,
MaryAnn :)
Re: Cortef dosing
May 10, 2007
MaryAnn

I have my appt. next Thursday and will discuss the DHEA with him. I don't feel as though the cortef is doing anything at all so I am kind of concerned about that. I am on 20mg and you would think it would be helping by now. I was given the name of a psychiatrist when all my symptoms started happening. I no longer see that GP since he obviously never believed anything I said. By the time I did find a doctor who did the proper testing I was really in bad shape. I had read it takes a long time for the adrenals to recover but I was hoping by now I would have noticed something. I hope you have a great weekend. The weather in NH is beautiful!
Kim
Re: Cortef dosing
May 12, 2007
MaryAnn, hope you are having a good Mother's Day weekend. My mom is up, there on Whidbey, I am here in Texas. I'm glad I could send y'all a little sunshine, wish I could have hand delivered it! does your profile name have anything to do with Boeing? Just asking because my dad works @ Boeing in Everett.
I have a few more weeks left before I have to go back to doc to discuss how Preg. therapy has been going. I noticed that I was getting very shaky and axxious. I couldn't sleep in the morning at all. Was taking the preg. at around 8 am and again at around 6pm. I was taking 50 mg twice a day. I cut that down to one just in the morn. because I couldn't stop with the shaking and wasn't sleeping as well. Like I overdosed on nodoz or something. I seem to be doing better now. It really is a guessing game, what will work, when is the best time to take it, how much. My goodness, couldn't it just be a little easier!! I didn't have these problems as a kid, it all started a few months after my first tick attachment in 1989, but I have had some stressful events happen to me along the way that have caused me to relapse. I haven't felt completely normal in 18 years but I have definately felt much better than I do now! Please both you and Kim keep in touch so we can try to help each other through this! Sincerely, Sarah
Re: Cortef dosing
May 15, 2007
[QUOTE=making777;2981069]Sarah,

I like the idea of keeping in touch. We do have such a rare disorder, and yours and Kim's even rarer still!

How are you doing after you decreased your preg down to one a day? I was wondering if you took the second dose a little sooner you might be able to sleep better at night. But I think I know what you are experiencing. When I was on the Predisone, I felt the same things you did. Sometimes I felt like Wonder Woman, able to get 0 sleep and still function on steriods. Other times I felt like I was manic, and that my self control was the only thing that kept me from running around the room screaming just for the fun of it. :) I finally got to the point where I couldn't take it anymore, and the MD changed me to Cortef, which has been wonderful to me.

Whidbey Island is a beautiful Island. I hope your mother had a wonderful Mother's Day, and I'm sure she missed your presence! Thank you, I have been having a wonderful Mother's Day weekend. My husband had my 4 kids spend the night at the grandparents for the weekend, so that my Saturday was all about sleeping in, going out to eat and a movie, and relaxing. :) He is so good to me! Today we had both sets of Mom's over for a BBQ after church. It has been a good day!

How about you? Have you had a good Mother's Day?
Blessings to you!
MaryAnn[/QUOTE]
maryAnn, thanks for the info. I am doing much better on just one 50mg doase of preg. once a day instead of two. I am taking it around 11:00 am, I do feel better, no more shaking. I just think 100mg a day was too much. I have noticed that with the preg. Biotin, and enzymatic supps. I am getting energy back and not feeling as tired and achy. I still feel bad, but any improvemnt is better than how I felt 3 weeks ago. I also have to relate the fact that I stopped eating any type of bread product. Breads, doughnuts, crackers, cookies. I know this is also helping, and it wasn't as hard to do as I thought. I'm glad the Cortef is helping you. Gig Harbor is beautiful,When I was 13-14 we lived in Auburn (not so pretty, but great view of Mt. Rainier) we used to camp by the hood canal up at Scenic Beach ST PK. And we would go by Gig Harbor to get there. That is a great area for Bike riding. It is so pretty and no humidity. Wa St to me is still the most beautiful state there is. I'm glad you had a great Mother's Day. Mine was good too. Keep in touch, Sarah:)
Re: Cortef dosing
May 18, 2007
Pregnelonone, you guys have me curious. I have been trying to look it up a little but haven't come up with much. Is it more natural than Cortef or the other corticosteriods? Why can it not be patented? Can you give me any direction as to where to look into it more? I would like to see if it a suitable replacement and see if it is worth replacing the Cortef with. The long term effects, as you know, aren't the best, so a more natural replacement seems desirable, at least to look into it!

Kim, will you be trying the DHEA or changing your Cortef around? Just curious if you got the answers you wanted at your appointment!
:) MaryAnn
Re: Cortef dosing
May 21, 2007
[QUOTE=making777;2992368]Pregnelonone, you guys have me curious. I have been trying to look it up a little but haven't come up with much. Is it more natural than Cortef or the other corticosteriods? Why can it not be patented? Can you give me any direction as to where to look into it more? I would like to see if it a suitable replacement and see if it is worth replacing the Cortef with. The long term effects, as you know, aren't the best, so a more natural replacement seems desirable, at least to look into it!

Kim, will you be trying the DHEA or changing your Cortef around? Just curious if you got the answers you wanted at your appointment!
:) MaryAnn[/QUOTE]

MaryAnn, I take preg. because it is safer for me to take than cortef because of the Lyme. Allso I am not in complete adrenal failure. I don't know how bad of shape your adrenals are. When your adrenals have completely stopped working for themselves it is necassary for Cortef or another steriod to be used to rpelace the function of the adrenals. I am not at this point yet and feel that it is not to my advantage to take a synthetic steroid that will completely take over my adrenal functions. So I am taking preg. first to try to get them functioning better and healing on their own without completely shutting them down.
Preg. is the first hormone to be made by Cholesterol and can be converted into cortisol and aldosterone. It is also manufactured in the ovaries and testicles and is metabolized into DHEA. Taking it orally enables your body to choose which other hormones it will make from them according to your bodies needs. Preg can be used also to raise the sex hormone levels in men and women. By supplementing Pre. you are bypassing the steps required by your adrenals to make it themselves and they do not have to work so hard to keep your hormone levels adequate.
Hope this makes sense. Again everyone is not at the same level of adrenal fatigue and only your doctor can give you advice on wether this would be beneficial to you. But then being a nurse, I guess I don't really need to tell you that, but anyone else who is reading this. I am not a doctor, and am under continuos care of an Endo who knows my symptoms and pres. what is needed of my own body. I wouldn't just go out and start taking natural hormones and supplements without the supervision and recommendation of a doctor, and don't advise anyone else to either. I also research everything that the doc prescribes also. anything that I suggest is just a suggestion that can be discussed and evaluated by you and your doc. (my disclaimer, LOL:dizzy:) MaryAnn, I Hope that you are having a good day and hope to "converse" with you again soon. If you have found anything significant about preg. let me know!! Sarah:wave:





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