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Addison's Disease Message Board


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Hi Dial,

I am so glad I saw your post because I was just going through my links deleting things!!

You need salt. LOTS AND LOTS of salt and please buy a blood pressure monitor and take your temps several times a day. See if your BP and temp has gotten lower.

You need to have your Aldosterone + Renin levels tested immediately. I have low aldosterone and cortisol and have the symptoms that you do. I am guessing you are going into shock when your episodes occur. I found a way to stop it IMMEDIATELY when it starts to happen. I sit right down on the floor and chug salt water and I carry salt water with me everywhere now.

I'm guessing that when you have your episodes- your BP and temp has nose-dived- that's what mine does but the salt makes me well. I can't even describe how good the salt water feels when I am sitting on the floor. I will be all shaky and my head is spinning and my legs are cramping up and the salt hits me within seconds and I will feel warmth go down my legs and I will get all tingly and warm and my head clears up and my legs relax and stop shaking.

And even when I'm not having an episode- I have zero energy and I have been a hyper person my whole life!! I honestly had the energy of 3 ppl up untila, year ago and coffee would make me Flyyyyyy!!! Now- coffee does nothing and I'm tired and weak all day long:( I wonder if sunlight is bothering you too like it is me- my eyes burn all the time from bright lights.

But you should make the salt water ahead of time and carry it with you because during the episodes- if you are like me- I can't control my hands very well. They get all sluggish and slow and I can't move my fingers good so making the drink is hard during an episode. Having a little sugar during the day is also important- so munch on raisins or something off and on all day.

And your Cortisol level is horrendous and the Dr that said you should be at least a 5 is an idiot Im sorry to say. Cortisol AND Aldosterone are Diurnal hormones. They should be at the top of the range in the morning and be at the bottom of the range in the evenings- that is how the Human body works. That's why we have energy in the mornings and not much energy in the evenings. Those levels should be like a ski-slope during the day- starting at their HIGHEST points at 8 am.

A normal cortisol test is usually 5-25- thats what my range was on my Lab sheets. You should be around 5 in the middle of the night when you are asleep!! You should be at the TOP of that range at 8 am- ideally 20-25.

Research Aldosterone please. It controls your electrolyte balance and salt+sugar levels and fluid in your body. Aldosterone also plays a part in muscle strength. It controls your BP too. Cortisol is equally important.

Low aldosterone + Low cortisol + High renin/Acth = Primary Adrenal Insuf./ Addisons
Low adlosterone + Low Cortisol + Low Renin/Acth = Secondary Adrenal insuff,/Pituitary gland problem

That's why it's so important to have your Renin and ACTH levels tested too- to see WHERE the problem lies- even though the treatment may be the same. There's lotsa things that cause Secondary Adrenal Insufficiency also- like kidney disease, liver disease, hypopituitarism, pituitary lesions/growths- so please research that too.

Here is a TON of links. The BEST advice I have been given is on the first link.

[url]http://www.webmd.com/a-to-z-guides/Aldosterone[/url]
Aldosterone- webmd

[url]http://www.webmd.com/a-to-z-guides/Cortisol-14668[/url]
Cortisol- webmd.com


[url]http://www.stjohnsmercy.org/healthinfo/adult/endocrin/chart.asp[/url]
Hormone linear chart


I am seeing an Endocrinologist- but he isn't very bright ( he performed the ACTH test wrong and doesn't order the correct blood tests) but I learned from that message board about the salt and some other things I can do to help myself.

Good luck to you. Please get all the information you can and request the tests you want done because Dr's are sadly not very good at diagnosing hormonal problems. Get copies of all your bloodwork too- they can't deny too them BTW. That way- you can research better on what you need for tests and medication.

Good luck and God bless and I'm sorry. It sucks being this tired and weak and shaky but the salt will let you function - at least it does with me until my Endo gets me on the correct meds.


Lori
Well I saw my endo, and she said my base Cortisol was at 11. This to me seems to be in the low normal range. Then after the ACTH test it went to 21. She stated that means your Adrenals are fine. The problem I have with that is the last two cortisol blood draws were at 2.3 and 2.9. they were both at a LAB. quick in and out. the ACTH was done at a hospital, and to say the least I was unconfortable and stressed to have to go to out patient and get an IV in my arm, which would explain my elevated Cortisol level. She said I only need to worry about my low testosterone of 199. I said my DHEA is low, if I take DHEA, wont that bring the Testosterone up? she stated no, I cant make DHEA without Testosterone and wants me to take the shot every two weeks. I'm not sure thats a smart move. Then I said what about my blood sugar issue? its been hitting 195 off just half a cup of soda! She sated there was no corilation between Low testosterone and glucose leves. I've read plenty that states other wise. Also Iv'e read plenty that low Cortisol and low DHEA has a direct effect on blood glucose. Im so frustrated and confused! please help any one!???
Your story is very identical to mine, including the recent ''attack" that I experienced last month June, especially with the tightness in my throat area, and have made an appointment with the thyroid specialist, even though my thyroid results with my diabetes doctor came out normal...


All my other test came out normal and now the doctors are saying its Psychosomatic, though my Cortisol level in the afternoon was only 5 which I think needs further evaluation...


I too have the classic symptoms of either a Thyroid disorder or Addison's.


For many years I had the extreme dizziness, and many failed attempts in finding why I was always hungry; I was finally diagnosed with having prediabetes in 2004, yet I have a very athletic build, BMI at 20.7 and only in my early 30's which dumbfounded the doctor when the results were positive. I am now extremely careful with the sugar intake and bad carbs such as white rice and bread, past and pizza.

You mentioned not being able to find the right doctor; its been a nightmare for me since I no longer live in the States. yet I found very reputable site that lists Endo doctors by their speciality, since a thyroid doctor will not be well informed or keen on diagnosing for Addison's: Online there is the "Hormone Foundation" and you can type your zipcode OR navigate to the site and you can find by speciality...

I would recommend that you find a diabetes specialist from the above site as well. Endocrinology is a very complex field, so I strongly recommend you find someone who can advise with your sugar levels properly.


Also there are a few things you can do:

1) Purchase a wrist cuff blood pressure monitor; see if your blood pressure is hitting too low. You can intake salty water or food to raise it.

2) Start a sugar-banishing diet right now, such as the low bad sugar/ carbs diet, to start eliminating the sugar from your system. There's no alternative when weening off sugar and too much bad carbs. There are a few out there, just do a little research on the internet.


3) Any doctor who behaves unprofessionally, as you don't "NEED" further testing, needs to be dealt with accordingly; find a new doctor. It's your health and you have complete control over who you allow to handle your precious body. Don't allow the narcisisstics in the medical profession discourage you or doubt your health concerns, and lastly your life.

4) Eliminate any unnecessary stress-causing factors from your life, since it negatively affects your hormone levels.


Keep us posted and be well.
Hey, I'm still having a hard time. The lab results show 3 harmones low. Cortisol, which has been showing anywhere from 2-4 and DHEA sulfate, and testosterone. I havn't been on any meds. I am hesitent to take tesosterone shots due to the fact I dont want to shut down my natural production. I'm trying to figure out a natural way to bring it up. I went to the Mayo clynic, they were worthless. The Endo there looked at my charts listened to me, and said "I dont believe your promblem is Endo related, I think you may have Crohns disease, That would explain the irregular bowl behavior and weight loss. I said if it's not Endo related, how do you explain my blood sugar issues. He stated he wasn't sure, maybe I was turning diabetic. Even though I my testosterone was at 199, im only 24 by the way, I was fine cause I can maintane an erection. This is idiotic logic due to the fact not all men experience sexual disfuntion due to low testosterone. I warned him about my low cortisol, and explained how I have had 2 cortisol stim test done prior to seeing him, which came out normal. My problem with the cortisol stim test is it only tells you wether or not your glands are on, or off. it does nothing to show how efficiently they are functioning, and balancing out your body's needs. The doctor I saw stated he doesn't believe in adrenal fatigue, and says it's a myth, since I past the test before I was fine and had no issues with cortisol. He ordered a blood draw before I left. The next day they called me frantically stating we need you to come in and take another cortisol stim test. your cortisol was only at 4! I said "thats what I was trying to tell you! these doctors have a real God complex and dont want to listen to logic! I said what will another stim test do??? It will show normal like the others. I believe Einstein once said "Madness is doing the same over again expecting a different result." I guess by definition, all these doctors are crazy. So....I'm still sick, my Career as a Police Officer is on hold, I had to apply for state benifets and insurance cause im broke and cant make money, My home is getting foreclosed on, Doctors cant figure out how to treat me, and im exhausted and sick every day now. I'm trying to stay focused and vigilant, but it is hard. It has turned into a up hill battle. I was tested for Lyms disease, but was negative. I then found out the test are unreliable and very hard to diagnose. I'm gonna have to look into a West blot test. I appreciate all your help.
-Dial
Thanks for the reply. My main symptoms as of now are feeling extremley weak. tired all the time. I sleep and sleep some more. I get shaky at times, and get very dizzy. shortness of breath often happens with the dizzynes. any physical activity wipes me out. I have lost 30 pounds in 3 months, and have only gained 5 pounds of it back. I was in the top physically in my Police Academy class, now I cant even play with the dog! I all around just feel very very ill. I have had the following test.
* Ct of the brain = Negative
* CT of abdomen = Negative
* Colonoscopy, endoscopy = Negative
* several thyroid checks = Normal
* several ACTH test = Normal
* heart echo = discovered minor Mitral valve prolapse, doctor said no big deal.
*stress test
*CT of the heart = Normal
* blood check for Lymes, and Valley fever, although I later found out these test are unreliable.
* lab work which resulted in discovery of low Cortisol, Testosterone, and DHEA
*Glucose Tolerance test = hit 245, but A1C and AM insulin levels show normal, and me being non diabetic.

Endo Doctor wanted me to take Tesosterone shots, I didnt, due to trying to find a better natural way to boost Testosterone. I dont want to shut my natural production down and be shot dependent the rest of my life.

Natural path wants to test me for the presence of Cancer.
other than this I dont know what else to say. I am lost. I dont believe this is due to a physcological disorder like some docs have pushed.
l
Hi there DIAL, yup .... my story did sound a lot like yours .... when I was reading your story, I was like wow that sounds like me!! Yeap, I have been back and forth to Doctors for a year now. I've been to Cardiologists, family doctors, an Endocrinologist just the other week, and back and forth to my Gyno. doctor. I have had so many tests done ...... and not really any answers.

I've had hormone testing .... by FSH came back a little high (19.0), my LH was normal, my Testosterone was a little on the low side (was 28). I have had to Cortisol blood tests, my morning (10:00 AM came back high at 35.0) .... my 4:00 came back a tiny bit from being high, was 16.9 at 4 PM. I have had 3 sets of Thyroid testing, I have had the CBC's, I had the Ferritin level checked which came back low (21), but not low enough for doctors to be concerned, even though I have been reading those levels should be 70-90 in women. Then last week I had the B12 and Folate tested. My B12 came back low (172) but my folate was normal.

Funny thing was .... I waited two months to get into this Endocrinologist the other week, and here she had NO answers for me. I thought she was a specialist in this stuff?? Obviously not LOL. She said to me "you have several different groups of symptoms, when I think you may have one thing, the other group of symptoms rules out the other group, so I am at aw as to what is wrong with you". I was thinking to myself .... aren't you the Specialist? Isn't it your job to figure out what is wrong with me? The only thing she said to me was "You COULD be low in B12 and that could be why your hair is falling out". I was like .... why don't you test me and know for sure instead of guessing. Maybe some of these doctors didn't pay attention in medical school. I get so angry when some of these doctors don't help your further. I mean .... especially when a person has Health Insurance ..... why don't these doctors run tests that run with a persons symptoms. So yeah, I have several groups of symptoms .... she should have tested me for each group, that way she could have ruled things out. Some doctors don't care I think ...... and they wonder why they get sued???? I mean B12 defiencies CAN be deadly ..... yet all she says to me is "You may be low in B12 that is why your hair could be thinning". I mean come on, she obviously didn't pay attention in school.

Sorry ..... just Venting a little bit there LOL. I just get sooooo mad! But anyway, I am sooooo glad that you are finally starting to figure things out DIAL. I am hoping with my new test results on the B12, I am hoping that this is a start to figuring out what my problem is too. Definitely keep us posted DIAL as to how you are making out ok?? Ohhhhh and one more thing, how do you go about finding a "Natural" type Doctor?? I have NO clue how to even start looking for one. :confused:
Dial,

Late chimer-inner here. I believe you definitely have an adrenal problem - although you may have other, unrelated problems also. Will your naturopath RX you low-dose hydrocortisone to give you any relief? I won't go into my long health history, but recently I have confirmed very low adrenal function via a saliva test done 4x throughout the day - all way below normal. You can get discounted saliva tests kits from reliable labs yourself thru a place online called the Canary Club to confirm your exact cortisol pattern (plus they also include other tests). I am taking 10mg hydrocortisone when I get up and another 5mg by noon. This is helping me get by. I agree with the other posters about supplementing with salt - ideally sea salt which has trace minerals. Avoid high-potassium drinks/foods (Gatorade/bananas). Get the book Adrenal Fatigue, The 21st Century Stress Syndrome by Dr. Wilson for other things you can do to help yourself - he also has a website but his supplements are expensive. Avoid sugar and caffeine at all costs. Eat as much healthy, organic food as possible every 2-3 hours to maintain blood sugar levels even if it's just a few bites. Adrenals need Vitamin C, take 1-2g/day and B5 100-200mg/day. Reduce stress if at all possible. Get to bed by 10pm every night (adrenals repair themselves somewhere between 11pm-1am). This are some of things I've thought of just off the top of my head, I am a work in progress myself. The taser thing and the fact you are a cop are just red flags in my head. Your body system may not have been equipped to handle these stressors and sent your adrenal/endocrine system into a tailspin.

I'm sorry you are having so many other problems with work and bills on top of your health. Good luck.

Holly





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