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GettingWellAgain 11-08-2005 09:16 PM

How do I know how far along my adrenal insufficiency is?
 
From what I have researched, adrenal insufficiency may be the early stages of Addison's Disease. Adrenal insufficiency, so I've read, is Adrenal Exhaustion in its last stages; high cotisol levels begin to drop to cortisol levels that are too low. But, if standard medical tests often show "normal" cortisol levels when in fact cortisol levels are way too low, how do I know where I'm at? How do I know that I'm not in the Adrenal Exhaustion stage where my cortisol is actually too high instead of the stage where the adrenals produce insufficient steroids and cortisol levels are low? I have no insurance and am having SUCH a problem getting ANY treatment anywhere at all. I even tried the ER, but since my vitals were still okay, they refused to treat me or even consider that I possibly have Addison's or adrenal insufficiency. My symptoms are that of Addison's, minus the vomiting. I have the extreme weakness, constant low blood pressure, horrible fatigue, hyperpigmentation (my face tans dark during stress), headaches, and nausea. What kills me the most though is my profound inability to deal with ANY, ANY, ANY stress whatsoever. I have had unrelenting stress almost my entire life and now I believe I'm experiencing some sort of autoimmune problem/virus due to my symptoms, and am REALLY having a VERY hard time dealing with life due to my symptoms. I am NOT depressed; when I'm not feeling my symptoms at their most intense, I'm the happiest person in the World. Anyway, anytime something moderately stressful in my life occurs, I get a terrible headache, neckache, severe backache, joint pain in my fingers and all over my body, nausea, weakness, and fatigue. It's so bad that I feel like I'm going to die. I don't recover for at least 24 hours or more. Does anyone deal with this/has anyone else ever dealt with this? I'm really having a hard time. Oh, but back to my original question:) Although I'm very thin, I DO have somewhat of a large abdomen and VERY thin arms and legs, which is consistent with HIGH cortisol levels. If standard doctor interpretation of cortisol tests if off, how will I know if I have Adrenal Fatigue or Adrenal insufficiency/Addison's?
Thanks,
Katalina

marcy3 11-09-2005 12:53 PM

Re: How do I know how far along my adrenal insufficiency is?
 
Hi Katalina,

Sorry you are going through such a rough time.
I don't know much about Addison's, but are you seeing an endocrinologist? With symptoms like yours, there may be more sensitive tests which, combined with your symptoms, might help diagnose what is going on.

Take care,
Marcy.

GettingWellAgain 11-09-2005 03:13 PM

Re: How do I know how far along my adrenal insufficiency is?
 
Hi Marcy,
Thanks for your post. I'm actually not seeing an endocrinologist due to having no health insurance. I'm 20 years old, going on 21 in a month, and was told that I'm not eligible for State insurance until I'm 21 (very soon!) and I guess my mom makes just over the limit for me to get State because I live with her. It's very frustrating. I've pretty much exhausted all of my options in trying to get medical treatment at the moment. My mom payed for insurance for me for a few months, and in that period of time I saw a naturopath who strongly suspected adrenal insufficiency, but we couldn't pay for the tests or my insurance anymore, unfortunately. I'm thinking about trying to go to a local clinic in my area. I probably should've done that a long time ago, but I've heard SUCH horrible things about this particular clinic that I figured that they couldn't diagnose something that seems as complicated as what I seem to have. Anyway, I suppose I have to wait one more month (actually, my b-day is all the way at the end of the month, but that's okay) and I'll be able to get medical treatment. Anyway, I am optimistic that they will eventually be able to find out exactly what's going on.
Thanks for your reply, Marcy.

~Katalina

Tzu 11-09-2005 06:28 PM

Re: How do I know how far along my adrenal insufficiency is?
 
Hi Solstice,

I have suspected I have Adrenal insufficiency for ages. Have lots of symptons but damn near impossible to get a doc to listen. I think medical practioners really only recognise adrenal crises or full blown addisons disease. I don't think they are too interested in adrenal fatigue as far as I can tell. However I have read as much as I can and find the best way to handle myself is to try and avoid stress as much as I can .. and when I have it .. to try and rest more. Try to get some gentle exercise and take all my supplements. I stay on an anti depressant as I feel less fatigued on it ... but still have a fair bit of fatigue. It is for anxiety also which drains the adrenal gland ... so I take it for that too.

I do have far too much sugar still and battle to control that ... sugar of course hypes us up and does not help the adrenal gland at all but adds to the problem .. caffeine too .. any stimulants in fact.

Also any poisons to ur system even such as artificial food colourants and flavourings will make the adrenal gland work harder. U really need to nurture it as best u can.

Quite frankly .. getting a doc to diagnose it can only result in cortisone ... because as far as I know that is all a doc can treat with ... and that is such a dangerous drug ... so really it's probably best to recognise u have a problem with ur adrenal as I have done ... and work on resting it ... u may find that if u look after it carefully it may repair itself, ur young still. Unfortunately for me ... my stress has gone on too long (I am now in my early 50's and have a damaged thyroid as well). I have thyroiditis which is an immune disorder .. so I don't see myself ever making a full recovery ... but I can help myself a lot with diet, rest and exercise. I cannot go out to work as the stress would just finish me off. Fortunately I can stay at home.

It would be nice for u if u can get a doc to work with u and give u some sort of diagnosis ... but as I said ... unless u have full blow addisons .. I think u will find yourself talking to fresh air :rolleyes: ... Good luck anyway :wave:

GettingWellAgain 11-09-2005 08:43 PM

Re: How do I know how far along my adrenal insufficiency is?
 
Tzu,

Thanks for your reply! Although I have yet to approach a mainstream medical doctor with what I KNOW is adrenal insufficiency, I have heard many stories about how hard it is to get a doctor to understand. I used to have a big problem with Candida overgrowth, and now have it about 70% under control with diet, but I actually had a doctor laugh hysterically in my face and tell me that Candida overgrowth only exists in patients with HIV/AIDS. It's so frustrating when you know your own body and have a good idea where the problem lies and doctors you rely on to help you turn their backs. The only doctor that "believed" me was a naturopath, who I can unfortunately no longer afford to see. I tried Licorice Root for my adrenals, but I really didn't feel any results whatsoever. See, what I'm worried about is that my adrenals may already be too far "gone", despite my young age. I had IMMENSE stress and some trauma almost my entire life, and no matter how much I have changed my diet, rested, reduced stress, relaxed, quit smoking a couple of years ago, etc., I seem to be worsening with every passing day. It started off as very mild and has just progressed rapidly in the last year to where most days I'm worried that I might just actually have an adrenal crisis since I feel so sick. I have to admit, I haven't been very good with staying away from the sugars lately, but I absolutely do avoid caffeine and all stimulants. It seemed like my adrenal problems plummeted downhill when I got a Paragard Copper IUD placed in my uterus about 5 months ago. I have read that an IUD can stress the adrenals, but I don't really plan on getting it removed because it's pretty much the most effective form of birth control and I also cannot deal with the physical stress and pain of the removal at this time. I shutter thinking about it :)
I do realize that getting diagnosed pretty much results in getting a prescription for Cortisone, and I also realize this is a dangerous drug, but I might have no choice. I don't want to be on steroids, but others have said that a REPLACEMENT dosage, replacing what your body is missing is not as harmful as taking a high dose of steroids. I really hope this is true. Although I am totally against succumbing to the use of drugs due to side effects, as a 20 yr. old that is almost non-functional, I want my life back. It kills me to see my friends partying and drinking coffee and...even working. I wish so badly that I could do those things. BUT, don't get me wrong, on my good days, I am the happiest, most optimistic person in the World; I have hope that I will someday recover from this! I'm curious- what supplements are you taking? Do they help? Are you by any chance taking adrenal glandulars from a bovine or porcine source? I've considered that option by am actually a little afraid to go for it. By the way, I also think I have thyroid problems related to my illness since I have an extremely low body temperature, a million and one other symptoms, and a very high incidence of thyroid problems in my family. Anyway, thanks for your response:)
~Katalina

Tzu 11-10-2005 09:10 AM

Re: How do I know how far along my adrenal insufficiency is?
 
[QUOTE=Solstice1221]Tzu,

Thanks for your reply! Although I have yet to approach a mainstream medical doctor with what I KNOW is adrenal insufficiency, I have heard many stories about how hard it is to get a doctor to understand. I used to have a big problem with Candida overgrowth, and now have it about 70% under control with diet, but I actually had a doctor laugh hysterically in my face and tell me that Candida overgrowth only exists in patients with HIV/AIDS. It's so frustrating when you know your own body and have a good idea where the problem lies and doctors you rely on to help you turn their backs. The only doctor that "believed" me was a naturopath, who I can unfortunately no longer afford to see. I tried Licorice Root for my adrenals, but I really didn't feel any results whatsoever. See, what I'm worried about is that my adrenals may already be too far "gone", despite my young age. I had IMMENSE stress and some trauma almost my entire life, and no matter how much I have changed my diet, rested, reduced stress, relaxed, quit smoking a couple of years ago, etc., I seem to be worsening with every passing day. It started off as very mild and has just progressed rapidly in the last year to where most days I'm worried that I might just actually have an adrenal crisis since I feel so sick. I have to admit, I haven't been very good with staying away from the sugars lately, but I absolutely do avoid caffeine and all stimulants. It seemed like my adrenal problems plummeted downhill when I got a Paragard Copper IUD placed in my uterus about 5 months ago. I have read that an IUD can stress the adrenals, but I don't really plan on getting it removed because it's pretty much the most effective form of birth control and I also cannot deal with the physical stress and pain of the removal at this time. I shutter thinking about it :)
I do realize that getting diagnosed pretty much results in getting a prescription for Cortisone, and I also realize this is a dangerous drug, but I might have no choice. I don't want to be on steroids, but others have said that a REPLACEMENT dosage, replacing what your body is missing is not as harmful as taking a high dose of steroids. I really hope this is true. Although I am totally against succumbing to the use of drugs due to side effects, as a 20 yr. old that is almost non-functional, I want my life back. It kills me to see my friends partying and drinking coffee and...even working. I wish so badly that I could do those things. BUT, don't get me wrong, on my good days, I am the happiest, most optimistic person in the World; I have hope that I will someday recover from this! I'm curious- what supplements are you taking? Do they help? Are you by any chance taking adrenal glandulars from a bovine or porcine source? I've considered that option by am actually a little afraid to go for it. By the way, I also think I have thyroid problems related to my illness since I have an extremely low body temperature, a million and one other symptoms, and a very high incidence of thyroid problems in my family. Anyway, thanks for your response:)
~Katalina[/QUOTE]

Hi Katrina ... Gosh you sound just like me ... I think I have also ended up this way from excessive stress in the past and perhaps the way my personality dealt with it.

The supplements I take are just vitimins .. I have been using a mega dose one of slow release vit B complex .. and also try to always take an antioxidant supplement. I have thought of trying the natural gland extracts ... but so far have not.

I have been referred to see an endocrinologist for my thyroid as I have a small nodule on it and have thyroiditis. That would be the specialist who would also deal with adrenal problems ... so I intend to ask him if he can check my adrenal gland too. But I am going through the NHS in the UK and will have a bit of a wait for that .. which is fine as I have lived so long already like this ... I'm just glad for the opportunity to see a specialist in this field.

I feel if you could find an understanding doctor who would recognise that you could very well have tired adrenals and perhaps try you on a little treatment ... it would be worth it ... I can fully udnerstand ur frutsration at not being able to keep up with ur friends. U need to pester the doctors until u get results. As they say ... the squealing hinge gets the oil ... thats what I have been doing and as I said ... have now been referred. Keep in touch here with ur progress ... I hope in time you get well again ;)

GettingWellAgain 11-10-2005 09:09 PM

Re: How do I know how far along my adrenal insufficiency is?
 
Thanks, Tzu, I will keep up on pestering those docs until I get the treatment I need. Thank you once again for your understanding and encouragement! :angel:

k_c_lady 11-17-2005 12:57 PM

Re: How do I know how far along my adrenal insufficiency is?
 
[COLOR=DarkGreen][FONT=Comic Sans MS]Hello, I was just diagnosed with adrenal insufficiency in Aug. I read somewhere that you won't show any symptoms until your adreal gland is 90% gone. My body attacked mine. It wasn't removed like some. Kiesha [/FONT][/COLOR]

skcoffman 11-17-2005 01:35 PM

Re: How do I know how far along my adrenal insufficiency is?
 
I was like you...misdiagnosed and sick. In fact, the doctors said it was arthritis. I took tylenol until my head was dizzy, no relief. This was the early stage. In 1986, I began to sleep most of the time. I would sit and think I needed to get up, but couldn't move because of no energy. I finally went to an internist. He put me in the hospital for tests and I began vomiting and freezing. I was poked and prodded, until someone did an adrenal stimulation test...zip, zero, nada...very little function. I was given predinisone, salt tablets, and synthryoid, because I now had a name...Schmidt's disease.

I did pretty well for 5 years if you can call blowing up like a balloon - good. I had another stimulation test and was transferred to cortisone because it was "less dangerous then the predinisone".

I didn't have enough stress to have much trouble until 2002, then I had two surgeries to remove thyroid cancer. I have had more trouble since. I keep Gatorade at all times and enough medicine to take more if I suddenly get the chills, fevers, joint pain, vomiting, or diarrhea that strikes suddenly and without warning. I have had the pigmented skin and white patches, dry itchy skin, depression, and salt cravings for 20 years. It's really been a "fun" disease, but I am still alive.

I would suggest you find someone to do an adrenal stimulation test. It should be done in a hospital setting, because it has to be precisely done, chilled, and sent to whatever lab does them. Addison's disguises itself as a number of other diseases. Good luck on finding help. It is out there if you can make someone do the tests.
SK

WandaB 11-17-2005 02:37 PM

Re: How do I know how far along my adrenal insufficiency is?
 
SK, Are you taking Florinef?

Wanda

skcoffman 11-17-2005 04:05 PM

Re: How do I know how far along my adrenal insufficiency is?
 
Flornef, no. It makes me break out...allergy? I take cortef, 7 mg a day, more if I'm in trouble. As long as I stay calm, it works pretty well.

I read that someone is having trouble with yeast infections. That goes with this desease. I take Nature's Bounty Probiotic Acidophilus. It also works to helps to lower blood sugar....usually 1 or 2 a day. I have trouble swallowing since the mess with the thyroid, but this pill goes down pretty well. Hope this helps.
SK

WandaB 11-17-2005 06:43 PM

Re: How do I know how far along my adrenal insufficiency is?
 
SK, Why do you take only 7mgs of cortef? Do you have the problems you mentioned often? (suddenly get the chills, fevers, joint pain, vomiting, or diarrhea that strikes suddenly and without warning)

20mg is pretty much the min level of cortef although I know of a guy taking just a bit less than that.

Wanda

skcoffman 11-18-2005 07:44 AM

Re: How do I know how far along my adrenal insufficiency is?
 
7 mg is the dosage my endocrinologist put me on three years ago. The doc thinks I have a small amount of function left??? The symptoms have been worse since my thyroid was removed. I had iodine radiation treatment after and the syliva glands do not work well any more. I also have problems swallowing. I do not always drink enough water and ingest enough salt. The more severe symptoms are brought on by stress. I have learned my limits and what to do when I'm over or under them. I have lived with this disease for 20 years and it is never going to get better. I hate taking steroids because of the side affects, etc., but I will take the bare minimum that I have to to keep functioning.

WandaB 11-18-2005 11:05 AM

Re: How do I know how far along my adrenal insufficiency is?
 
SK, You didn't mention how often you have the problems mentioned before. There are side effects from taking too little cortef also. Taking a replacement dose of cortef should not cause a problem. I would guess after this long you do not have any adrenal function left. A minimum dose would be more like 15mg.
I am discussing this with you because being ill often is really not part of addisons unless there are other complications or illness like infection or whatever. I have not been sick since being diagnosed & consider myself VERY lucky. I'm sure I will have my turn at it! I get by on 20mg HC & 1/2 tab of Florinef. What I miss most is stamina & strength.

Some people have to increase their steriod dose after an increase in thyroid med.

I am wishing you well & just don't want to see you ill when you shouldn't be!
Wanda :)

GettingWellAgain 11-18-2005 12:43 PM

Re: How do I know how far along my adrenal insufficiency is?
 
Hi Sk,

Thank you for responding. I'm so sorry that you had to deal with thyroid AND adrenal problems, but I have heard that thyroid and adrenal problems go hand in hand, at least with some people. Although I am still undiagnosed, from everything I have read, it does seem like your dose of Cortef is very low. I've also heard that yeast/Candida problems are common in those with low adrenal function, and I definitely fit that category, although my Candida problems aren't half as bad as they used to be. I was just saying on the CFS board how I no longer have problems with low blood sugar like I used to, but now for three days I've been struggling with the blood sugar problems. Did you also have low blood sugar issues before becoming diagnosed?

Thanks, :wave:
Katalina


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