Looking for some advice

[delshaya]

Greetings everyone.

I'm Del. I've been an addison's disease/schmidt's syndrome patient for over 20 years. I also have been diagnosed with clinical depression, have had a deep vein thrombosis, one child and during that time have had a slowly declining health state.

In the last five years I have gained 100 pounds which I am unable to lose. I've lost my hair, twice. I have vitiligo.

My need for advice concerns mainly the last five years as my health has declined drastically. I'm tired all the time, yet have frequent insomnia. I have pins and needles in my hands and feet, a burning sensation in them which often progresses to a twitch or muscle spasm in my toes and knees.

I've had repeated tests for the usual cortisols and ach, plus t1 and t3, to determine according to the doctors that I am absolutely fine.

I take 15 mg of prednisone and .5 of fludrocortisone plus 225 micrograms of levothyroxine, plus lexopro for my depression.

I've tried adding B complex supplements to my diet, milk thistle for my liver, chondroitin for my joints and beta carotene for general malaise. I recently started juicing to up my natural vitamin intake.

Nothing works. I cannot hold a job. I can't concentrate. I've been given flexeril for the muscle spasms which do no good whatever. My knees and hips ache making any kind of gentle exercise such as simple walking or gliding impossible and still the doctor's claim that I am fine and that I am not disabled.

Say again?

Anyone have any good advice for me? I was reading the threads on dhea, do you think this might help me? I was tested for estrogen because I feared I might be starting menopause early and was told my estrogen levels were fine but I have /no/ testosterone whatever. (Most women have a small amount)

Help!

[Tzu]

Hi there delshaya,

I sympathise with you as I have bad health also and it is very disheartening I know when you feel so awful and your doc says you are fine. Well if you were fine your doc would not have you on any meds ... so obvioiusly you have problems and obviously if you don't feel well, the meds are not doing the job 100%. But of course if your doc doesn't agree, you are up against a brick wall. I don't have much advice as I have not conquered my own problem and have recently, after much reading, decided I have tired adrenals. All I can suggest is you try supporting your adrenal glands with natural supplements .... as I plan to do .... good luck and I hope you find something soon that will help

[gertie]

Hi Del:

My endo said I need to take dhea, my numbers were awful in that department. I think it is helping, because I feel so much better than before I was diagnosed with addisons/schmitts. I don't know if it is my imagination, but my skin even seems to be better.

I take 200 levoxyl for my thyroid, 5 prednisone and 1 of fludrocotrosone and 25 dhea a day. I feel like my old self again for the most part. I have gained 10 pounds back from when I was diagnosed and have stablized there for the most part. I needed to gain weight though I looked like I had anorexia before.

It sounds like you are very prone to autoimmune problems. I am too. As a teen I had guillain-barre syndrome, in my thirties hashimoto's hypothyroid and now autoimmune addisons. I too have uncontrolled muscle spasms in my toes and my legs twitch as I go to sleep in bed at night. I don't know what that is, but I live with it. Probably some other hormone I am lacking in.

Maybe you should see a new doctor, sometimes a fresh look at a patient can help. It just doesn't sound right that you feel so awful. I am new with addison's though, just diagnosed in Nov. 2003 so I don't have to much experience of living with this at all. One thing the journey with this disease has taught me is that I will never be poo pooed out of a doctors office agian. I know my own body and if one doctor will not listen to me I will find another one who will.

[HeatherW]

Hi Del,
Are you sure your taking .5 of floricortisone, if you are your taking 5 x as much as I am (.1mg) and more than anyone that I know with addisons. That is a tremendous amount of meds. I think your also on a very high amount of prednisone too though. Dont quote me on that though as I have never taken pred. I take dexamethesone. I too have had this for almost 28 years I am thirty now. I truley think that you are over replaced on all your addiosns meds. I am sorry I have no Idea about the other stuff. My suggestion would be to find another doc quick. It will take you time to come down off all that medicine but your definatly displaying signs of cushings and something way more dangerous if that is your true floricortisone dose. Too much in the medication department can manke you feel just as bad as too little. PS You would probobly be very happy with DHEA. I cannot believe how it increased my endurance. HeatherW

Originally Posted by delshaya

Greetings everyone.

I'm Del. I've been an addison's disease/schmidt's syndrome patient for over 20 years. I also have been diagnosed with clinical depression, have had a deep vein thrombosis, one child and during that time have had a slowly declining health state.

In the last five years I have gained 100 pounds which I am unable to lose. I've lost my hair, twice. I have vitiligo.

My need for advice concerns mainly the last five years as my health has declined drastically. I'm tired all the time, yet have frequent insomnia. I have pins and needles in my hands and feet, a burning sensation in them which often progresses to a twitch or muscle spasm in my toes and knees.

I've had repeated tests for the usual cortisols and ach, plus t1 and t3, to determine according to the doctors that I am absolutely fine.

I take 15 mg of prednisone and .5 of fludrocortisone plus 225 micrograms of levothyroxine, plus lexopro for my depression.

I've tried adding B complex supplements to my diet, milk thistle for my liver, chondroitin for my joints and beta carotene for general malaise. I recently started juicing to up my natural vitamin intake.

Nothing works. I cannot hold a job. I can't concentrate. I've been given flexeril for the muscle spasms which do no good whatever. My knees and hips ache making any kind of gentle exercise such as simple walking or gliding impossible and still the doctor's claim that I am fine and that I am not disabled.

Say again?

Anyone have any good advice for me? I was reading the threads on dhea, do you think this might help me? I was tested for estrogen because I feared I might be starting menopause early and was told my estrogen levels were fine but I have /no/ testosterone whatever. (Most women have a small amount)

Help!

[Christina155]

Dear Friends,

I am sorry that you feel so awful, but I am thankful to know that others are experiencing the same pain as I am. The part about being poo pooed from the Drs office is soo true! I am a different person than I was two years ago; it is true, if the Dr won't listen, then find another who will. And they are out there!

Best,
Christina

Originally Posted by gertie

Hi Del:

My endo said I need to take dhea, my numbers were awful in that department. I think it is helping, because I feel so much better than before I was diagnosed with addisons/schmitts. I don't know if it is my imagination, but my skin even seems to be better.

I take 200 levoxyl for my thyroid, 5 prednisone and 1 of fludrocotrosone and 25 dhea a day. I feel like my old self again for the most part. I have gained 10 pounds back from when I was diagnosed and have stablized there for the most part. I needed to gain weight though I looked like I had anorexia before.

It sounds like you are very prone to autoimmune problems. I am too. As a teen I had guillain-barre syndrome, in my thirties hashimoto's hypothyroid and now autoimmune addisons. I too have uncontrolled muscle spasms in my toes and my legs twitch as I go to sleep in bed at night. I don't know what that is, but I live with it. Probably some other hormone I am lacking in.

Maybe you should see a new doctor, sometimes a fresh look at a patient can help. It just doesn't sound right that you feel so awful. I am new with addison's though, just diagnosed in Nov. 2003 so I don't have to much experience of living with this at all. One thing the journey with this disease has taught me is that I will never be poo pooed out of a doctors office agian. I know my own body and if one doctor will not listen to me I will find another one who will.