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Addison's Disease Message Board
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Old 06-30-2009, 09:27 AM   #1
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luminescent HB User
Another "is it possible?" topic.

I went to my doctor a couple months ago suspecting that I had either hypothyroidism, an adrenal problem, or anemia. After a few tests, we found that my TSH is great (1.0), I believe it was a hemoglobin test that ruled out anemia, and he wasn't interested in any adrenal consideration. A CT scan was done on my brain and it came out fine. He's now set me up for an appointment with a neurologist in August, but I have a hard time believing that's the best specialist for me to see. I strongly feel like there's a hormonal issue going on.

Here are my symptoms:
Fatigue (constantly)
Loss of appetite
Acne (on my back, never had it there before)
Cold extremeties
Depression and anxiety (had it before, but worsened)
Weakness
Palpitations
Low blood pressure (usually between 85/60 and 100/70, but can be higher)
Light-headedness upon standing
Light-headedness after periods of standing (randomly, although happens often when it's hot)
Daily headaches (always after napping but otherwise no other apparent cause)
Dry skin
Hair loss
Memory loss/brain fog
Decreased libido
Shakiness
Frequent UTIs
Nipples have recently turned brown in the center?

(Sorry for the seemingly long list, just wanted to make sure I covered everything!)

Because headaches were my main symptom, that's what my doctor was focusing on. He did start me on an antidepressant which I recently found out is also a migraine preventative. My headaches have mostly gone away, but now they do sometimes only accompany the light-headedness. Now it's the light-headed feeling that bothers me most.

I am also fairly certain that I had postpartum thyroiditis a couple years ago but had no insurance to see a doctor for confirmation. That's fine now though.

So am I crazy in thinking this could be adrenal related? Is there anything else that could follow these symptoms? Thanks!

Last edited by luminescent; 07-01-2009 at 06:26 AM.

 
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Old 07-01-2009, 11:37 AM   #2
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downen HB User
Re: Another "is it possible?" topic.

You are absolutely NOT crazy! I had almost every one of your symptoms, except no headaches or acne. You may need to push really hard for a stim test, but I believe that's what you need. My internist refused to send me to an endocrinologist, but I found one on my own who ran the test and confirmed what I suspected - Primary Addison's. Please, listen to your gut and do what you have to do to get those tests! I was dxed in March '08 and am figuring out the best way to live with this disease, but am feeling 1000% better than I was before my dx. I agree that a trip to the Neurologist is a not indcated, with your symptoms. Your hunch that's it's hormonal is probably spot on, as I feel hormonal changes are what kicked my Addison's into crisis a little over a year ago. I also have hypothyroid and MS, so things went all wacky when I hit my late 40s.

Best of luck to you! Mary Jo

 
Old 07-01-2009, 02:01 PM   #3
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Re: Another "is it possible?" topic.

listen you need to do what you have to when it comes to your health, My son is now 10 yrs old but when he was three years old and had almost died on me.. my persistance payed off when a very wise doctor told me know one knows you or your child as well as you so even when everyone thinks your crazy you need to keep fighting if you feel soemthing isn't right..this was also the day I found out my son had Primary Adrenal Insufficiency, TYPE 1 ADDISONS. althoug very scary, we make the best out of it. So push for a test on your Adrenal Glands because he had several 0o9f the same symptoms and more. Good luck and God Bless.
kmickey0818

 
Old 07-20-2009, 02:06 PM   #4
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Re: Another "is it possible?" topic.

I agree with the other two replies here and I would stress the importance of seeing an endocrinologist. It is my opinion that primary care or family doctors really don't even know how to read the results of a cortisol stimulation test (I even had my family doctor tell me this) and generally think in terms of what is the "most likely" cause of your symptoms. Since adrenal insufficiency issues are rare, they're really not even on a family doctor's radar. An endocrinologist, however, will be thinking along the lines of endocrinology health issues and will be more likely to run that test for you.

Your insurance may allow you to just schedule an appointment directly with an endocrinologist. If you must have a referral, you may just say to your doctor, "Look, I know you don't think this is an endocrine problem, but for my own peace of mind would you please just give me a referral?"

I've noticed that the "my own peace of mind" or "please just run this test to placate me" line of reasoning works well with doctors. I've been dealing with this with my own rare health issues (adrenal insufficiency, thyroiditis, pernicious anemia) as well as my daughter's (growth hormone deficiency) so I've been down this road too many times. Fortunately, I work in the medical field, so I don't take "no" for an answer. The fact is, when it's a rare condition, you really have to be your own advocate and insist on the tests. And if they won't listen the first time, keep going back until they do. There's a saying that doctors have--"When you hear hoof beats, think horses, not zebras." Yeah, that works most of the times, but sometimes it's a zebra!

 
Old 07-24-2009, 06:18 AM   #5
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reemu HB User
Re: Another "is it possible?" topic.

i also had every symptom you listed, minus the UTIs and the acne, plus a few others: alternating diarrhea and constipation, vomiting, loss of appetite, extreme pain in legs and hips, darkened skin and freckles in places i never had them before, and weight loss.

I mostly lost hair from my body, the hair on my head just looked dull instead of shiny. I did get frequent ear and throat infections, which i believe ultimately help send me into crisis.

if you have addison's something will likely show up as odd on either your thyroid tests or electrolytes, which i think GPs tend to check more often then cortisol.

my advice to you is keep complaining til you get the help you need. it might not be addison's but you are obviously not well!

 
Old 07-30-2009, 09:33 AM   #6
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luminescent HB User
Re: Another "is it possible?" topic.

Hi, thanks everyone! I'm definitely taking all of your suggestions and advice to heart. I have the appointment with a neurologist on Monday, and I think I'll ask if he can refer me to an endocrinologist since I'm sure he might agree that he's likely not the person for me to see. If not, then I see my regular doctor on Thursday as well, so I'll bring it up again for sure. I'll also ask my nurse while she's taking my blood pressure to check it after I stand, just to try to get that a bit numeralized and brought to attention.

I have a question on this hyperpigmentation thing. Of course now I'm looking for symptoms so this comes to mind, but I feel like it could be normal. One sign is darker knuckles, right? Like, how much darker? My knuckles are indeed darker than the rest of my fingers, and when I've looked at other people's hands theirs seem to be a pretty uniform color, but it's also not the hugest shade difference for me and I don't want to look hypochondriac by asking a doctor and it be completely normal. That along with the fact that my nipples have turned brown, but from what I read the Addison's symptom is the areola turning brown, not so much the nipple itself. Maybe that doesn't make a difference, maybe it does... can anyone shed some light on this subject?

 
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