Should I investigate any more?

[geenie98]

My symptoms or complaints included lots of fatigue, menstrual irregularities (long, heavy periods, cycle getting longer and longer, bad mood swings during menses).  I was also losing a lot of hair (head, no particular pattern) and suffered from hirsutism (that appeared suddenly around the age of 23, I am now 28).  I also had very sensitive nerves in my arms and legs, which hurt if you put a small amount of pressure on it.  

About 2 years ago, I was put on effexor and wellbutrin to try to help with the bad mood swings I had during pms (it was getting THAT bad).  I took it for 6 months, with little effect on the actual mood swings (which only appeared during pms).  However, It seems that I was getting more and more tired.

I finally stopped both meds gradually and for a while, it seemed that the fatigue was completely gone... but it came back.  I sometimes start to feel fine but then I will catch a cold or any little infection and will end up being sick for a month and just go back to being lethargic for weeks and months after that.  

I had to move abroad for my work in 2008.  While I was there, I saw a gynecologist.    The gynecologist noted galactorrhea on both sides (I don't have children) and ordered a few hormonal tests as well as an ultrasound.

The ultrasound and tests clearly indicated PCOS.  The gynecologist sent me to an endo (in a very good hospital) for further testing.  The endo suspected some kind of adrenal hyperplasia (mostly because of my symptoms) and ran a few more tests.  I had the tests done at day 6 of my menstrual cycle at 8:30 in the morning.  Here are the various results I got :

Testosterone: 0.74 ( 0.10 - 0.85)
*Delta 4 Androstenedione : 4.3 (0.45 - 2.45)
*Oestradiol : 26 (40-100)
Inhibine B : 63 (60 - 125)
*Anti Mullerian Hormone : 114 (14-48)
FSH: 3.9 ( 4-9)
LH: 5.7 (4-9)
Prolactin : 13 (<20)
*17-OH Progesterone : 1.1 (0.30 - 0.60)
*Cortisol (plasma) : 25.2 (8am range 9 - 23)
ACTH (plasma, morning) : 17 (10-50)

Now my problem is, I was supposed to have further investigation of my symptoms, but, being an expat, I had to come back home before I could see that doctor again (and getting hold of said doctor has been impossible, I tried for months).  I am not familiar with cortisol / acth levels etc and my results don't seem to look all that bad, although on the fax I got, they circled my ACTH level.  I'm wondering if I should try to find an endo here and pursue the investigation of CAH or if those results alone can show that I'm doing just fine adrenal-wise.  I have a general practician taking care of the PCOS but he told me that any adrenal problem should be addressed to an endocrinologist.  

Any input would be greatly appreciated.  

[rumpled]

Thanks for coming back and letting us know! I hope know that you know, you continue to get treated and feel better.

[geenie98]

So, it's been almost 2 years since this post.  And I have been suffering from multiple symptoms for a little over 6 years, with the worst symptoms in the last year or so.  I had to reduce my working hours, had a few hospitalizations due to me passing out and having very low blood pressure, angina and dizziness.  Had tons of tests done... they never figured it out.  Or when they thought they did, the treatments never worked for more than a month.  I had some periods where I would feel better from time to time, but they were getting rarer and shorter over the years.

I am posting because I finally found out what is wrong with me, and if there is one other person going through the same kind of hell I've been through, maybe this can help them.  Also, It would be nice if there were more posts around here with people actually giving feedback on what actually went wrong with theme, after asking questions in forums.  Just a thought...

It is funny because I just read my post on April 12, 2010, and well, I can't believe how many doctors have been this close to finding what was wrong with me...  Well here it is : Iron deficiency anemia.  Simple, right?  How, just *how* I managed to walk around Dr's offices for 5 years looking like I was tanning under neon lights / about to audition for a remake of M. Jackson's thriller video I do not know.  The thing is, every single Dr I had seen tested my hemoglobin levels, which were low, but not too low, nothing too bad, nothing alarming really.  I also kind of had given up the hope that anyone would ever figure out why I felt like crap on a daily basis, and that It was just a normal part of aging for me...  Until one day, where during a routine checkup with a new family doctor, I was on my period and had such a heavy flow that I bled through 3 layers of protections, my pants and onto the wax paper of the exam table, considering I had changed less than an hour prior to the appointment... I half jokingly said "you know, that can't be too good for me... bleeding like that".  It wasn't the first time that I had mentioned this to a doctor, but it was the first time one could notice how severe it actually was...  Others always dismissed it, even after I fainted I told the ER Dr that I had been bleeding a lot during my period a few days prior to fainting and he just brushed it off.  This time my Dr decided to check my ferritin levels as well as hemoglobin levels, and to my surprise (I really had given up), I learned that I was severely anemic.  My ferritin levels were close to none, and this time around, my hemoglobin was really, really low (cause yeah, I did the blood test a couple of days after the heavy flow to put all the chances on my side).

I had always assumed that they had checked for that, how could they not when Dr after Dr told me "you're pale, we'll check for anemia"?  They just never checked my ferritin levels.

I now agree 100% with rumple, Get copies of everything.  When they tell you all your tests are fine, don't assume they actually tested for all the right stuff unless you can see it with your own eyes...

[rumpled]

Ah, they ruled out Cushing's on that one test - which is very unreliable IHMO... I failed all those suppression tests and still had it as did hundreds of my Cushie buddies... so that indicates a mild case (as in test levels), pituitary source and that you need to see an expert to get to the bottom of it. I was cyclical - my tests came back largely normal but I was sick sick sick.
I started out by lactating too.. er, but I ended up having a second tumor. That can happen too.
Get thee to a doctor and while it may take a while to find one who is competent, do keep up the search. Get copies of everything.

[geenie98]

Thank you for the replies, I actually forgot to mention a couple of things related to my results.  I had those tests done twice within a period of 3 months.  They both came back with approximately the same results, with normal prolactin levels etc.

I also had a dexamethasone suppression test which came back normal (I don't have the actual results at the moment, I must have misplaced them when I moved).

I had numerous thyroid and full blood tests when I first started complaining about being tired, which all came back normal, if not optimal.  Other routine blood tests have also shown no abnormalities.

I also should mention that every time I see a doctor for the first time, they systematically check me for anemia, because they say I look pale (almost like a ghost at times), but everything always come back normal.

I'm also severely addicted to caffeine, which probably doesn't help my cortisol levels.

I have to say that the galactorrhea alone is starting to really bug me, so I'll make it a point to see an endocrinologist to investigate further.  I'll post if I eventually find out more about my issues.

Thanks again.

[pacaplace]

Abnormal Lactation in men or women is called Galactorrhea.  It can be caused from problems with your pituitary, hypothalamus, Cushings, or several other problems, even some medications.  The suggested tests are MRI, prolactin levels, and Thyroid tests, among some others.  And Endocrinologist or Meuro-Endocrinologist are the specialts to be seen, but a regular doctor can get the tests done, too, to start the process if that would be faster.

[rumpled]

Your symptoms are of Cushing's syndrome. The high cortisol and ACTH testing are for that. Now, the ACTH was normal, however the cortisol was high but ACTH is easily bunked, but a normal ACTH can indicate adrenal source. Lost yet? Good.

The Cushing's symptoms mimic PCOS, although it is not improbable that you have both. I did.

The hair growth, depression, period issues, fatigue, etc, are all symptoms of Cushing's. It needs more testing. The lactation should be looked into - that can be thyroid (oddly, I see no testing) medication or the PRL - which although was low, can be suspect.

I would get an endo to run more testing.