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Old 01-25-2013, 09:44 AM   #1
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Boomersmom12 HB User
Addison's??

Hello
I have not been diagnosed with Addison's as of yet although the term has been thrown around a few times and I will have additional testing done soon. My doctors say my symptoms point to adrenal insufficiency yet this nightmare has been going on for almost 17 months now and while I try to be positive that I will finally get an answer and some relief...the road has been full of many letdowns and ridiculous explanations by doctors that say they are not familiar lol
Hoping someone here with experience and might be able to she'd some light or some form of advice lol
It all started 17 months ago after a crazy year of trying to balance full time job and upgrading for licensing at night wile trying to juggle the kids, the house and the extra kid(my hubby lol), I got strep throat for the first time in my life and got it four times in 6 months lol. I always felt weekly like I had some flu of some kind and we get really sick to my stomach but wouldn't throw up . Then I started getting these shaky, dizzy spells which turned out to be my sugar dropping as low as 1.5 and actually 0.7 as per first 911 call. So after a myriad of tests I was dx with reactive hypoglycemia of unknown cause however as months went on my body could not handle any form of carbs, sugar, etc. Then around March of last year my blood pressure started dropping to 70's over low 40's. started spending a couple days at a time in bed by so weak to get up. With that I started having really heavy periods but docs won't do surgery by of low low bp In June I collapsed at work as my Bp must have really bottomed out and then it skied to 200/160 as a defence mech so the paramedics told me. Still no explanation at this point. I have not been back to work( not my choice) and I have found that although the hypoglycemia is somewhat under control as long as I eat no breads, no carbs, no natural or processed sugars and exist on protein, dairy and water and veggies that I can keep it at a 4. That and eating every couple hours of course lol. The blood pressure continues to plague me month after month as well as the palpitations and tachycardia. It seems to be some form of a cycle. About a week before my period I spend two days with blood pressure bottoming out and often at hospital with iv fluids as no amount if water, salt. Etc seems to help followed by a couple days of the tachycardia which I've been kept overnight for too the my period comes and about a week later I feel somewhat normal until the next cycle. I can't handle small stressors anymore while I spend my first 38 years a go go go everything on my shoulder no matter now tired I was lol.
The one interesting thing is back in October I had a bad virus and was placed on antibiotics and prednisone for a week. I never felt so normal on the prednisone. My blood pressure and blood sugar stayed stable without even trying lol. My internest says this indicated that perhaps the steroid made the adrenals do what they are supposed to b doing but lack to do on their own. He mentioned addisons back in August but said sometimes if takes time to present itself. The endo did send me for a cortisal test but it was done in the afternoon via look and the internest says that it has to b done first thing in the am to get accurate result and that he wants me to do as soon as low bp presents itself which will be any day now lol
My heart has been tested to max and the cardiologist is positive this is not heart related but suggest hormonal/ adrenal. I've had so many suggestions in past 17 months but nothing concrete which is so frustrating
The internest said there are meds he is sure would help but can't give them without documentation of the condition via tests. One more thing I will add is tht I was dx with celiac when I was 2 but was told at 8 to go off diet and now all these years later I have tested positive again and have been gluten free for 6 months now. As well other things going is my hair falling out and headaches. Ive also just been diagnosed with lichenn sclerosis.
My pregnancies were both life threatening with some major artery bursting and causing blood to pour out my nose and mouth for ten days each time requiring transfusions and all the rest and although many docs tried to figure out cause all they could conclude was that they had never seen it before, have no more children, and that there was some hormonal component they were just not sure what.
Anyhow if you have made it this far I thank you sincerely as it felt really good to get this all out, especially if someone is familiar. I am just at the end of my rope and so tired of telling the kids mommy too tired to do this and do that . It feels as though I am a shell of the super mom, super office girl, super wife that I used to be. I just want my life back and if it is Addisons I just want some meds to do that lol
Thanks you sincerely

 
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Old 01-25-2013, 06:30 PM   #2
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sonyamom HB User
Re: Addison's??

Quote:
Originally Posted by Boomersmom12 View Post
Hello
I have not been diagnosed with Addison's as of yet although the term has been thrown around a few times and I will have additional testing done soon. My doctors say my symptoms point to adrenal insufficiency yet this nightmare has been going on for almost 17 months now and while I try to be positive that I will finally get an answer and some relief...the road has been full of many letdowns and ridiculous explanations by doctors that say they are not familiar lol
Hoping someone here with experience and might be able to she'd some light or some form of advice lol
It all started 17 months ago after a crazy year of trying to balance full time job and upgrading for licensing at night wile trying to juggle the kids, the house and the extra kid(my hubby lol), I got strep throat for the first time in my life and got it four times in 6 months lol. I always felt weekly like I had some flu of some kind and we get really sick to my stomach but wouldn't throw up . Then I started getting these shaky, dizzy spells which turned out to be my sugar dropping as low as 1.5 and actually 0.7 as per first 911 call. So after a myriad of tests I was dx with reactive hypoglycemia of unknown cause however as months went on my body could not handle any form of carbs, sugar, etc. Then around March of last year my blood pressure started dropping to 70's over low 40's. started spending a couple days at a time in bed by so weak to get up. With that I started having really heavy periods but docs won't do surgery by of low low bp In June I collapsed at work as my Bp must have really bottomed out and then it skied to 200/160 as a defence mech so the paramedics told me. Still no explanation at this point. I have not been back to work( not my choice) and I have found that although the hypoglycemia is somewhat under control as long as I eat no breads, no carbs, no natural or processed sugars and exist on protein, dairy and water and veggies that I can keep it at a 4. That and eating every couple hours of course lol. The blood pressure continues to plague me month after month as well as the palpitations and tachycardia. It seems to be some form of a cycle. About a week before my period I spend two days with blood pressure bottoming out and often at hospital with iv fluids as no amount if water, salt. Etc seems to help followed by a couple days of the tachycardia which I've been kept overnight for too the my period comes and about a week later I feel somewhat normal until the next cycle. I can't handle small stressors anymore while I spend my first 38 years a go go go everything on my shoulder no matter now tired I was lol.
The one interesting thing is back in October I had a bad virus and was placed on antibiotics and prednisone for a week. I never felt so normal on the prednisone. My blood pressure and blood sugar stayed stable without even trying lol. My internest says this indicated that perhaps the steroid made the adrenals do what they are supposed to b doing but lack to do on their own. He mentioned addisons back in August but said sometimes if takes time to present itself. The endo did send me for a cortisal test but it was done in the afternoon via look and the internest says that it has to b done first thing in the am to get accurate result and that he wants me to do as soon as low bp presents itself which will be any day now lol
My heart has been tested to max and the cardiologist is positive this is not heart related but suggest hormonal/ adrenal. I've had so many suggestions in past 17 months but nothing concrete which is so frustrating
The internest said there are meds he is sure would help but can't give them without documentation of the condition via tests. One more thing I will add is tht I was dx with celiac when I was 2 but was told at 8 to go off diet and now all these years later I have tested positive again and have been gluten free for 6 months now. As well other things going is my hair falling out and headaches. Ive also just been diagnosed with lichenn sclerosis.
My pregnancies were both life threatening with some major artery bursting and causing blood to pour out my nose and mouth for ten days each time requiring transfusions and all the rest and although many docs tried to figure out cause all they could conclude was that they had never seen it before, have no more children, and that there was some hormonal component they were just not sure what.
Anyhow if you have made it this far I thank you sincerely as it felt really good to get this all out, especially if someone is familiar. I am just at the end of my rope and so tired of telling the kids mommy too tired to do this and do that . It feels as though I am a shell of the super mom, super office girl, super wife that I used to be. I just want my life back and if it is Addisons I just want some meds to do that lol
Thanks you sincerely

 
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Old 01-25-2013, 06:43 PM   #3
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Join Date: Sep 2005
Posts: 23
sonyamom HB User
Re: Addison's??

I lived life with all of the symptoms of Addisons till 1998 when I finally had an all out Addisons crisis. I was 41 and that is how I found out I have Addisons. With cortisone my life is so normal now. I was always the skinny, weakly sick little kid and now it makes so much sense. The cortisone helps but the florinef keeps the salt and potassium in balance and it makes the big difference. Forget being super anything anymore! It is ok and it will get better as you get used to it.

 
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Old 01-26-2013, 09:01 PM   #4
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Join Date: Jan 2013
Location: Birmingham, al
Posts: 26
tfisher817 HB User
Re: Addison's??

Boomersmom I know how frustrating it is to feell so bad and not know why. I was like you...very active with my kids, coaching their ball teams, etc. Worked full time as a nurse did photography on the side and i've noticed talking to others with full blown Adrenal Insufficiency that we all seem to have the worked our butts off and pushed ourselves to the max. You said you had strep well mine was Mono. I got it when I was 34. A case of Mono to an adult is WAY worse than on a teen or a child. I never could get back up and go...my skin over a year and a half time frame was so tan you could hardly see me in photos, i lost 40 lbs,extreme shortness of breath. It got to be a chore just to roll over in the bed. Everytime i went from a sitting to a standing postition i could feel my pressure bottoming out as my heart was racing. The dr i worked for at the time, told me to go see a pysch...he was very compassionate...NOT! So i let it go another month until i couldnt handle it anymore I went to see my mother's physician so I could get an honest opinion by a dr not one who just wants me at work....thank God for the tan because it seems I was very lucky and easily diagnosed as many people go years and from dr to dr trying to figure it out and I got my DX on first visit. The skin was the giveaway according to the dr. apparentlly I was "text book" Addison's. I hope for your isake its not addison's. Some people take our meds, cortisone and florinef and feel almost back to new and live a completely normal lifestyle.
Then there are those of us who can say we're alive but don't feel anything close to our old selves nor will we ever. I've unfortunetly had 4 crisis since diagnosed in 09 and have filed for disabilty. I hope you get some answers

 
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