Hi everyone,
I've been sick for 2 years now and I was wondering if I could tell you guys my symptoms and whether or not you could say if they seem like Addison's Disease.
2 years ago I was on vacation. I was out in the sun alot and didnt drink as much as I should have and I got dehydrated. I collapsed and my heart was racing and when they took me to the ER they gave me fluids and told me to rest. The next few days were hell. I was in and out of conciousness and I could barely walk. Somehow I made it home but after that, things were never the same. I continued fainting everytime I stood and was bedridden that summer.

That October I saw a doctor who diagnosed me with POTS (Postural Orthostatic Tachycardia). He gave me Florinef, Proamatine, and a beta blocker. This has kept me from fainting and my blood pressure is usually stable now but I am still exhausted. I always feel sick and weak and I cannot help but feel something else is going on.

Here's a list of my symptoms...

For one, I have ovarian failure. At 16, they told me my ovaries had failed and they never told me why. I have extremely low estrogen levels due to it.

-Severe Fatigue - some days are better than others but I cannot do the things I used to love like shopping or traveling. Sometimes even going out to see a movie is too much. I spend most of my time at home and some times I'm too sick to get out of bed.

-Dizziness - That worsens when I'm standing or sitting.

-Lightheadedness

-Generally weak

-Achiness - I always feel in pain.

-Ringing in ears - That worsens when I stand

-Shortness of breath at times, usually when I'm walking

-Cold - sometimes I get really cold and can't seem to warm up

-Tingling in my feet and hands

-Can't think as clearly as I used to but I blame that on the fatigue really.

There are others but those are the worst of it. Of course, without my Proamatine & Florinef & beta blocker, my blood pressure is extremely low and my heart rate very high and if I forget to take my Proamatine I end up collapsing...

I have read about the skin getting darker as a result of Addisons. I'm actually very pale though. I have freckles and some places on my skin are darker than others but generally I'm pretty white...

Thank you guys. I really appreciate it! :)

You don't have to have the skin darkening to have addisons.
I don't know much about beta blockers, but I know they can do additional things, so I am not the best one to ask about your symptoms.

Hi, I'm not diagnosed either, still waiting on my appointment. But it sounds similar to what I have going on. I also have really severe appetite loss along with weight loss. I do not have any skin darkening.

Don't know how helpful this is but it sounds very familiar!

Have you been to the doctor's with your concerns yet?

You could have adrenal insufficiency becuase you have many of the symptoms. The only way to know is to get tested by a provocative test that stimulates your adrenal glands and watches to see how much cortisol you make.

You need to see an endocrinologist and demand the test. Make sure you take a diary of your symptoms and how your are feeling each day. A diary makes you look serious about getting to the bottom of this problem. Don't take no for an answer and realize most doctors have no clue what adrenal insufficiency can do to you.

Good luck.

Thanks guys. I made an appointment with an endo for the 25th and I'm looking forward to getting there and getting tested as I'm getting increasingly fatigued and dizzy now. Thanks for the diary idea, I'll definitely start.
Momtobaby, you're in my thoughts. Hope you get this figured out soon!

Have you had thyroid tests? TSH, freeT4 and freeT3 and thyroid anti bodies tests are recommended. Hypothyroidism can explain your problems too. Maybe be a combo or adrenal and thyroid issues, which is common.

Also, check your serum ferritin level and serum b12. These are important nutrients and deficiencies can cause some of your problems or aggravate them. Both deficiencies can cause dizziness and fatigue among other things.

I think it is better to investigate a number of possibilities at the same time. No reason to needlessly suffer, I say!:wave:

I have had low thyroid for years (since I was about 16, I'm 21 now) and I take 50 mcg of Synthroid. I just got it tested the other day and they said its perfect.
Thanks for letting me know about the vitamin levels, Im going to a stomach doctor today and I'm going to talk to her about it and get some tests for that as well.

Yesterday I was too weak to get up from bed a few times during the day. The only thing that seems to help me besides my Proamatine (though I'm still exhausted after it) is Gatorade. I drink so much of it, I could keep them in business, lol.

But thanks guys, I really appreciate your help.

I would check on the thyroid board, lots of people there are still suffering from hypo symptoms, even though they are under treatment. I have learned from the experts on the board, that good drs treat to achieve a TSH of around 1.0 with free T4 and free t3 levels mid range to upper 1/3. Don't always take for granted that your dr is up on the cutting edge. Mine said I was "in range" with a 2.9 TSH on 50mcg of thyroxine. I feel better now on 88 mcg, tho by no means my old self. I learned also, that 50 mcg is a low dose, and that most hypo patients are on 100-125 mcg.

I was also diagnosed with POTS... I feel dizzy all the time too whether I stand or just sit... they want me to start on proamatine but I am afraid to use medications..... What did your endocronologist say?

I see the endo on Friday. I take Proamatine and it has kept my blood pressure stable - when I started it, I was unable to even walk and it definitely helped from that standpoint although I still get dizzy at times and I'm very fatigued still as I mentioned... the only thing I can say about it is that it was really hard to adjust to in the beginning. I was very sick from it when I first started it so if youre going to go on it, I'd definitely do it very gradually and under a doctors supervision. I'll keep you updated on what the endo has to say.

Thnak you... please do... ARe you coping with POTS or have you found certain things to help you with it?




I see the endo on Friday. I take Proamatine and it has kept my blood pressure stable - when I started it, I was unable to even walk and it definitely helped from that standpoint although I still get dizzy at times and I'm very fatigued still as I mentioned... the only thing I can say about it is that it was really hard to adjust to in the beginning. I was very sick from it when I first started it so if youre going to go on it, I'd definitely do it very gradually and under a doctors supervision. I'll keep you updated on what the endo has to say.

There are certain little tips that help me like putting my legs up when I'm feeling really symptomatic, drinking a ton of Gatorade, not doing too much during the day, making sure I get enough rest - I don't faint anymore but I still get lightheaded and I'm very fatigued all the time. So that's why I've been looking into Addison's wondering if there's a bigger picture to this whole thing. Make sure to eat a lot of salt - it'll help alot. Do you have Addisons?

not sure... dont know much about it? what is it?

Addison's is when your adrenal glands don't produce enough cortisol and sometimes, aldosterone - the symptoms are similar to the symptoms of POTs which is why I'm getting tested for it now after 2 years of having POTs.

interesting.. I hould ask my doc about it too... thanks

Hi Dreemilyn,
I'm glad I dropped by the boards to scan the posts as I feel I might have something to contribute to your dilemma. I am 47 years old, but you and I have a lot in common. I too have had ovarian failure, except in my case it was primary as I never had a period or regular puberty until I was put on birth control at 19 (after several tests and abdominal surgery). Then things were quite normal until I reached 28 and things started to fall apart and now I can look back and see that my adrenals were beginning to fail even then. I too know what it is to have low body temp, low blood pressure, blood palps, fainting spells, dizziness, etc. I'm not at all familiar with POTS. I've never heard of that before. I'm now on 75 mgs of synthroid as I was diagnosed as hypothyroid in 2002. After I was diagnosed with hypothy. I was so excited as I thought that once i got my thyroid regulated then my health would finally come back to normal and i could live a normal life again. I was wrong. My symptoms continued and worsened....and it was after much prayer and research that I was pointed to the adrenal problem 2 years ago and now I've been on an adrenal glandular supplement for almost 20 months and it has helped me greatly.....i can now drive again and do most activities and am presently in training and hoping to get a part-time job after being off work for over 6 years. The thing is that it's more than just taking a supplement. Diet is crucial as well as taking certain vitamins and doing low-impact aerobics and pilates exercises as well as taking time for rest each day too. An important source of information for me has been a book by Dr. Wilson called Adrenal Fatigue. Now, at this stage, I'm unable to say whether the glandular supplements (I bought these at a health food store....a naturopathic doc helped me too with all this stuff) will do the trick long term, but I was desperate as 2 endos I saw wouldn't do anything for me as they said the tests didn't show Addison's....my cortisol wasn't quite low enough for that on the test......but i later found out that they didn't do all the testing that they should have done......I sure hope you found a better endo. I'll be looking forward to hearing how your appointment went on the 25th.
Anyway, I may end up needing cortef down the road, but for now I'm just thankful that i can function much better in daily activities.
I'd be happy to answer any questions you might have.

Thank you so much for your reply! I have Primary Ovarian Failure also! I've never had a period on my own except once when I was on estrogen. I stopped taking HRT though because it made me incredibly anxious and uneasy all the time and it got to the point where it was unbearable. I do take Vagifem but like a half of the pill because I can't handle it.

POTs just basically means low blood pressure, high heart rate and it doesnt explain much because when blood pressure drops, the heart rate will naturally rise which is why I'm looking for another diagnosis because its more of a set of symptoms than anything else or atleast in my case.

I'm hypothyroid as well and I take 50 of Synthroid and have so since I was sixteen. (I'm 21 now.)

I'm going to order the book you mentioned. I have an Addison's test scheduled for Friday. I'm really nervous about it - have you had it? Is there any side effects from the injection? Like, should I expect to feel pretty sick during the test from it? I'll probably post a whole other post with that question.

I've been doing better these past few weeks. Did you have periods of time where you do better and then you crash? Thats how it is for me but overall my energy level is just not normal. I have to drag myself everywhere I go. I still have the dizzy spells and while I don't faint anymore, I often feel like I'm about to even though my BP is okay.

My doctors want to blame estrogen all the time. I've had so many tell me that its the lack of estrogen causing all this when I know in my heart it's not.

I'll keep you updated on my appointment - thank you so much for your post. It really helps to know I'm not alone.

:wave: Dreem,
I wish i could help you re the injection, but they never gave me one. Like i said in my previous post, i think i got the 'bare bones' test where addison's is concerned. I'll have to get a copy of my tests from my doc, but i don't think i was tested correctly and sufficiently. The 2 endos I've seen over the last decade don't seem to be too versed on adrenals unfortunately. The endo i had back in my 20's is deceased now and he was one of the best endos in Canada. I'm on a major hunt now for a doc who knows what he's talking about. I'll even be willing to head down to Michigan as I live right on the border. For now, i've been doing the natural way with a local naturopath who basically has given me back my life. I'm ever so thankful for her. She's truly been a God-send!! Two years ago i was practically incapacitated and looking at moving into a nursing home as i live alone. This glandular adrenal supplement (which is recommended in the Adrenal Fatigue book), combined with certain vitamins(vitC to help with the poor immune system,multi-B,VitD)minerals (magnesium being the most important one) and a low-carb (no white flour, no white sugar, no fruit juice, no caffeine and good protein at each meal) diet and regular low-impact exercise is what saved me. Getting rest and going outdoors for fresh air is also good.

As for your question about ups and downs. Generally my health was good until my first bout with anxiety in my late 20's. I'll go back a bit....i was 19 when i was sent to Toronto for a week of tests to determine the cause of my not having normal puberty. They did brain tests for tumors....found none. They did blood work aplenty, etc. The answer came when the abdominal surgery revealed a bit of tissue where the ovaries should have been and no evidence of any eggs. I was then put on birth control and soon after had my first period and my stature grew from 5'2" to almost 5'6" in a 3 year period. About that time i was switched form birth control to HRT (premarin and provera) and for the last5 years or so now I've been on a more natural estrace and prometrium.

There is definetely a connection between all these glands....the ovaries, thyroid and adrenals. I'm not an expert by any means, but i know that in women who go through menopause, the adrenals kick in when the ovaries give out to provide some measure of estrogen to sustain bone mass and sexual function,etc. Those adrenals are busy bees :dizzy: !!!! They release dozens of hormones with a myriad of functions that basically affect every function of the body.

I hope you have found a competent endo who can get to the bottom of why you can't tolerate estrogen, etc. I know they're out there.

Please keep in touch and let me know how you make out with your addison's test. I'm so glad i can help in any way. :)

I just got my ACTH test today and I'm happy that it was quick and easy! No problems at all :)

I definitely agree with you Cosette about all these glands having to do with one another. What I dont understand though is why when I got diagnosed with primary ovarian failure, nobody bothered to try and find out why it happened. I don't know whether or not your doctors were the same way. Mine just blamed it on my ovaries and I have always wondered since day 1 if there was a bigger picture.

I'm really curious about these results - I think I'll hear back in like 5 days or so. I'll keep you posted. :)

Hope you're having a good week.

I got my results and they came back negative. I hate to be disappointed about that but you know how it is - it's awful to feel "undiagnosed". I still feel like there's definitely something not right there though. I'm just not sure what to do next now. I'm thinking of seeing a naturopath for some advice about all of this.

Hi Dreemilyn,
I think you're wise to try a naturopathic doc. I've been much helped by one. I know how you feel. After my last appointment with an endo (late 2005) and lots of blood tests and he came back saying everything came out okay, i was disappointed too and one of my close friends said i should be happy. That was soooooo frustrating to me because she just doesn't get it that i was still not feeling well and was left hanging. She thought i should be thrilled that the doctor didn't find anything. :rolleyes:

Hoping and praying you find help Dreem!! Keep us posted!!

Thanks Cossette. Its so nice to be able to relate to somebody about all this. Like you said everyone thinks I should be jumping up and down happy to not have Addisons. I'm being tested for Celiac Disease in a week or so since my sister just got diagnosed with it and I have a lot of the symptoms and its autoimmune so we'll see what comes out of that - it's an endoscopy. I was interested to find out that it too can cause ovarian failure and the symptoms of POTs from malnourishment.