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Old 01-10-2007, 05:22 AM   #1
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Anyone here on Disability?

Well, I'm just trying to think ahead, considering at the moment I cannot make it a full day of walking around and being active on a regular schedule. My ankles are throbbing for no apparent reason(very low exercise tolerance) and I haven't tried to get on the treadmill in a week(muscle recovery is so ridiculous).

I wonder if anyone here is on disability for Addison's or hypopituitarism, or have been on it temporarily until they got their life back?

I hate thinking like this, but I have to be prepared for everything, and if I can't work in my career field or really work full time I'd like to know my options.

Last edited by chrisS81; 01-10-2007 at 05:23 AM.

 
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Old 01-10-2007, 12:28 PM   #2
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Re: Anyone here on Disability?

I know of a few on disability because of addisons &/or health problems to go with it. You would need your doctor's statement along with lots of good daily documentation noting all the problems & limitations you have. Many end up needing an attorney before getting disability.

Have you started splitting your dose into 3 times daily? Are you taking Florinef? You might consider taking Hydrocortisone instead of Cortef to see if your body likes it better. I don't do well on Cortef, but many do. We are all so different.

 
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Old 01-10-2007, 02:12 PM   #3
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Re: Anyone here on Disability?

Quote:
Originally Posted by WandaB
I know of a few on disability because of addisons &/or health problems to go with it. You would need your doctor's statement along with lots of good daily documentation noting all the problems & limitations you have. Many end up needing an attorney before getting disability.

Have you started splitting your dose into 3 times daily? Are you taking Florinef? You might consider taking Hydrocortisone instead of Cortef to see if your body likes it better. I don't do well on Cortef, but many do. We are all so different.
How ya doing Wanda. Thanks for the information, let's hope I don't need it. I've split it into three doses but doesn't seem to matter with the muscle recovery. I'm cramping and my muscles are sore all over, I'm getting plenty of water, vitamins, protein.. but it don't matter.

I called my doctor today and he wants me to get tested for Heavy Metal Toxicity. I checked the symptoms and I do have the symptoms(they relate very much to hypopituitarism). Because Mercury settles in the pituitary and disrupts function causing low send outs of several hormones including thyroid, gonadtropin, adrenal, and what have you else.

It's rare, but then again, so is hypopituitarism.. and most cases of hypopituitarism are caused by tumors, I have no tumor or can remember any traumatic head damage in my life. So I'll see if I have some of kind metal poisoning soon hopefully.

 
Old 01-10-2007, 02:24 PM   #4
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Re: Anyone here on Disability?

Quote:
Originally Posted by WandaB
I know of a few on disability because of addisons &/or health problems to go with it. You would need your doctor's statement along with lots of good daily documentation noting all the problems & limitations you have. Many end up needing an attorney before getting disability.

Have you started splitting your dose into 3 times daily? Are you taking Florinef? You might consider taking Hydrocortisone instead of Cortef to see if your body likes it better. I don't do well on Cortef, but many do. We are all so different.

Oh by the way, I'm wondering who would you have to fight? Health insurance, government? Sorry I'm ignorant on the whole topic.

 
Old 01-10-2007, 04:53 PM   #5
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Re: Anyone here on Disability?

I know nothing about it either. Wouldn't it be a state/government thing? Might be helpful to do some internet research or look in your local telephone book under the government listings.

What is your TSH level. I became hypo after about a year of addisons.

With your cramping & muscle pain I wonder if you are under replaced. Maybe another 5mg added with the morning dose would help you. Keeping the noon & evening doses the same. That would be 25mg a day.

If I have muscle pain in the legs I know it is because of a lack of cortisol. This happened to me once in awhile when first diagnosed, not lately.

Keep us posted on your metal test.

 
Old 01-10-2007, 07:46 PM   #6
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Re: Anyone here on Disability?

Quote:
Originally Posted by WandaB
I know nothing about it either. Wouldn't it be a state/government thing? Might be helpful to do some internet research or look in your local telephone book under the government listings.

What is your TSH level. I became hypo after about a year of addisons.

With your cramping & muscle pain I wonder if you are under replaced. Maybe another 5mg added with the morning dose would help you. Keeping the noon & evening doses the same. That would be 25mg a day.

If I have muscle pain in the legs I know it is because of a lack of cortisol. This happened to me once in awhile when first diagnosed, not lately.

Keep us posted on your metal test.
My TSH level was 7 something before, but now it's low. Around 1-2 I believe. If I was under replaced, wouldn't I have felt better when my cortef was raised to 20mg over 12.5mg? The bad cough I have has not improved either. I still seem to suffer from nausea and fatigue..actually maybe more so now as I sleep too much lately. My face looks more puffy as well I notice.

How long does the muscle pain last for you? has it ever lasted for a few weeks? Every day I do a little walking seems to aggrevate it, like they don't recover at night.. really disheartening..

Last edited by chrisS81; 01-10-2007 at 07:46 PM.

 
Old 01-10-2007, 10:48 PM   #7
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Re: Anyone here on Disability?

Are you taking thyroid meds? How did the TSH go from 7 to 1-2? It should be under 2.

If you aren't feeling better on 20mg versus 12.5mg, you could try Hydrocortisone to see if you feel better on it. Adrenal problems require experimenting to find what works best for you. You have to be the "driver", getting the doc to OK what you want to try.

Did you have a cold leaving you with the cough? To get rid of it you may need high doses of prednisone which is more anti-inflammatory. If you get a bad cold it is helpful to increase your Cortef for 2 or 3 days. Some don't agree with this, but it has helped me so I do it. For me, better than getting pneumonia or broncitis.

You shouldn't be having nausea & fatigue. The puffy face could be a sign of too much cortisol, but the nausea, fatigue, sleeping too much & sore muscles are a sign of not enough cortisol. Some of this could also be caused by your thyroid. Very hard to figure out so any changes need to be done one at a time to see what helps.

I have only had muscle pain in the legs for an evening at a time. When it was really painful I took 5mg extra in the evening & it helped. Normally it is not good to take extra at night as it sometimes keeps you awake. With adrenal problems it is hard to know what to blame things on. Oh, lack of cortisol can also give back pain.

Have you talked to your doc about all of your symptoms?

 
Old 01-11-2007, 12:10 AM   #8
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Re: Anyone here on Disability?

Quote:
Originally Posted by WandaB
Are you taking thyroid meds? How did the TSH go from 7 to 1-2? It should be under 2.

If you aren't feeling better on 20mg versus 12.5mg, you could try Hydrocortisone to see if you feel better on it. Adrenal problems require experimenting to find what works best for you. You have to be the "driver", getting the doc to OK what you want to try.

Did you have a cold leaving you with the cough? To get rid of it you may need high doses of prednisone which is more anti-inflammatory. If you get a bad cold it is helpful to increase your Cortef for 2 or 3 days. Some don't agree with this, but it has helped me so I do it. For me, better than getting pneumonia or broncitis.

You shouldn't be having nausea & fatigue. The puffy face could be a sign of too much cortisol, but the nausea, fatigue, sleeping too much & sore muscles are a sign of not enough cortisol. Some of this could also be caused by your thyroid. Very hard to figure out so any changes need to be done one at a time to see what helps.

I have only had muscle pain in the legs for an evening at a time. When it was really painful I took 5mg extra in the evening & it helped. Normally it is not good to take extra at night as it sometimes keeps you awake. With adrenal problems it is hard to know what to blame things on. Oh, lack of cortisol can also give back pain.

Have you talked to your doc about all of your symptoms?
Well, I notice when I'm low on cortisol I am fatigued but I can't sleep, when I raised my cortef to 20mg I sleep all the time but wake up tired still usually. Yeah I seem to be gaining weight easily now. I've never been overweight but everyone says it looks like I'm bigger, like I've been working out (my face is just more full and my weight gain is more proportionate than just my stomach luckily. I think only 5 or so pounds so far.

Yeah, I talk to my doctor all the time. I'm always annoying his nurse and then she calls me back with what he says. Every week I call a couple times.

I'm really, really hoping I have metal poisoning.. I know it's a long shot(don' tknow where I'd get it from, but everything fits I guess), but it would definitely explain so much.. I actually called and asked for a Growth Hormone stimulation test because one of the symptoms is poor muscle recovery. He seems sure that IGF-1 Free is a good indicator for growth hormone. (Mine is 55.94 on an 'average' scale from 20-80)

I also did get sick when I went off the cortef completely awhile back. I had a throat infection stay with me for months that slowly disappeared as we raised the cortef dose to the point the infection was all gone, although oddly that's when my cough started up, not with the cold itself but much later.. and it is an only symptom(gagging cough). Only happens several times a day though.

Some kind of interference in my nervous system would be awesome like poisoning(never thought I'd say that.) ..it would answer so many things as to why my recover and extremities recover so poorly.


By the way Wanda, when you were on too much cortisol, how did you feel compared to being on just enough? Did you feel worse? More fatigued? Eyes burning or sore when you woke up? Weight gain? I've been experiencing all of these and wonder what your symptoms were.

Last edited by chrisS81; 01-11-2007 at 03:41 AM.

 
Old 01-11-2007, 02:13 AM   #9
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Re: Anyone here on Disability?

Quote:
Originally Posted by chrisS81
I actually called and asked for a Growth Hormone stimulation test because one of the symptoms is poor muscle recovery. He seems sure that IGF-1 Free is a good indicator for growth hormone. (Mine is 55.94 on an 'average' scale from 20-80).
IGF-1 isn't a good marker of growth hormone since its affect by other things including testosterone levels. My IGF-1 was always normal but I eventually went on full GH replacement with very good results. By the way my IGF-1 barely changed with or without the GH.

You might benefit from taking DHEA. Exercise capacity, lung capacity and immunity can all be increased if your DHEA is low. Anyone on cortisol replacement has very low DHEA so there is no question about you being low.

 
Old 01-11-2007, 03:23 AM   #10
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Re: Anyone here on Disability?

Quote:
Originally Posted by orion
IGF-1 isn't a good marker of growth hormone since its affect by other things including testosterone levels. My IGF-1 was always normal but I eventually went on full GH replacement with very good results. By the way my IGF-1 barely changed with or without the GH.

You might benefit from taking DHEA. Exercise capacity, lung capacity and immunity can all be increased if your DHEA is low. Anyone on cortisol replacement has very low DHEA so there is no question about you being low.
Hey Orion how are you?
How did your doctor diagnose you needed growth hormone? An arginine stim test?.. If so.. maybe I should push for it again.. I'd hate to waste time waiting for this and find out this isn't true and then realize I wasted 2 weeks just waiting to try something if I could have been getting a test at the same time about something else.

By the way, my DHEA last I tested (This was before cortoef though if that matters) was DHEA-S - 2355 (Average 800-3500). What was yours?

Last edited by chrisS81; 01-11-2007 at 03:54 AM.

 
Old 01-11-2007, 10:39 AM   #11
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Re: Anyone here on Disability?

Being low on cortisol keeps you awake the same as having too much. This kind of thing is what makes it difficult to hit the right replacement amount. It is all trial & error. WE have to decide what to try as the docs are mostly clueless beyond the "take the pill & you will be fine"! They just don't know about how we can split doses, try new amounts & etc. to make us feel the best we can. I sometimes take 1/4 to 1/3 of a Benedryl tablet to get to sleep. Maybe once in 2 or 3 weeks.

At the time you had the throat infection you could have doubled/tripled your cortisol replacement for 3 days to help get rid of it. Of course this is not what most will agree with, but it would have shortened the duration of that infection. Increasing for just---- 3 days---- will not shut down your immune system, then right back to normal dose. Have you had a chest x-ray because of the cough? If not it would be a good idea. Perhaps get your thyroid checked again along with the DHEA-S.

With adrenal insufficiency/addisons, recovery is usually slower.

Is it possible you have metal poisoning & not adrenal insufficiency?

It was back in 1998 to about 2001 that I was on too much replacement so I don't recall allot of it. Taking too much gave me more energy & helped me gain a ton of weight. I was working at the time & used to come home, do 1/2 hour on the treadmill (before osteo in one knee), cook dinner & sometimes do some laundry & cleaning. I would have to rest on the weekends. Of course I was younger than.

Happy to see Orion here. He is much more knowledgeable than I am!

 
Old 01-11-2007, 01:46 PM   #12
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Re: Anyone here on Disability?

Quote:
Originally Posted by WandaB
Being low on cortisol keeps you awake the same as having too much. This kind of thing is what makes it difficult to hit the right replacement amount. It is all trial & error. WE have to decide what to try as the docs are mostly clueless beyond the "take the pill & you will be fine"! They just don't know about how we can split doses, try new amounts & etc. to make us feel the best we can. I sometimes take 1/4 to 1/3 of a Benedryl tablet to get to sleep. Maybe once in 2 or 3 weeks.

At the time you had the throat infection you could have doubled/tripled your cortisol replacement for 3 days to help get rid of it. Of course this is not what most will agree with, but it would have shortened the duration of that infection. Increasing for just---- 3 days---- will not shut down your immune system, then right back to normal dose. Have you had a chest x-ray because of the cough? If not it would be a good idea. Perhaps get your thyroid checked again along with the DHEA-S.

With adrenal insufficiency/addisons, recovery is usually slower.

Is it possible you have metal poisoning & not adrenal insufficiency?

It was back in 1998 to about 2001 that I was on too much replacement so I don't recall allot of it. Taking too much gave me more energy & helped me gain a ton of weight. I was working at the time & used to come home, do 1/2 hour on the treadmill (before osteo in one knee), cook dinner & sometimes do some laundry & cleaning. I would have to rest on the weekends. Of course I was younger than.

Happy to see Orion here. He is much more knowledgeable than I am!
I believe he tested thyroid and some other things a month and a half ago, and I've been told recovery is slow, but my recovery is ridiculously slow.

if I had metal poisoning, wouldn't that mean I still had adrenal insufficiency? As in, I do have it, but even minus the metal poisoning, this is a permanent problem isn't it?

I do know that I had no pituitary tumor, and my adrenal problem isn't an autoimmune response. My test was negative of antibodies I recall for thyroid and adrenal glands.

I've been looking up the systems of mercury poisoning, and Metal disease CAN cause addison's as one of the symptoms, as well as affect other pituitary function.

I do have the all the symptoms of mercury poisoning(but they are basically the same considering it causes the same issues). When I was 18 and used to lift weights I'd eat 4 cans of tuna in the day for a few months, and I have 8 amalgram "silver" fillings and two crowns(Do they use mercury to bind the tooth to the crown?) when I had two chipped teeth during baseball.

The studies on dental amalgrams go back and forth though, though I've noticed there are many claims for it from people that made websites to let others know.

Anyways.. I guess we'll see..it'd be too much to hope for I suppose to have metal poisoning at this point..I don't want to get myself excited and get severely disappointed.

Did you or Orion figure out what caused your problems for sure?

Last edited by chrisS81; 01-11-2007 at 02:01 PM.

 
Old 01-12-2007, 12:40 AM   #13
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Re: Anyone here on Disability?

WandaB you are too kind. Are you from Aspen's place? I use to go there before it closed.

Chris mine was a big tumor that crushed my pituitary gland all the while doctors saying I was perfectly fine. All my test were normal including my cortisol tests, so go figure.

 
Old 01-12-2007, 07:04 AM   #14
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Re: Anyone here on Disability?

Quote:
Originally Posted by orion
WandaB you are too kind. Are you from Aspen's place? I use to go there before it closed.

Chris mine was a big tumor that crushed my pituitary gland all the while doctors saying I was perfectly fine. All my test were normal including my cortisol tests, so go figure.

You had a tumor WHILE your doctors said you were fine and your glands were functioning normally seemingly at the time? Did they take an MRI? Or did they still miss it? You were seeing Endos? That'd be horrible. Just wondering because I've had the MRI awhile back.

 
Old 01-12-2007, 10:23 AM   #15
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Re: Anyone here on Disability?

Orion,
Yes, Aspen's site was the first one I found. You must have used a different name there.

Wanda

 
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