Promises, Promises

It’s been about five months since I first noticed my hair loss and I still don’t have any real answers. By now I’m pretty fed up with doctors and all this bullshit. I’ve been bouncing between depression, near violent anger, and apathetic defeat. I haven’t felt much like writing about it this, but today I decided to sit down and do it.

~~~~~~~~~~~~~~~~~~~~~~~~~~~

I’d already been through general blood tests ordered by my primary care, and additional blood tests with a pelvic and abdominal ultrasound ordered by my gynecologist when I went to see the endocrinologist for the first time in mid October.“You’re a puzzle,” Dr. R said during the physical exam, as if this would somehow comfort me. All my blood work was normal. Nothing was wrong with my thyroid, hormones, or blood levels. Yet, something was amiss because not only was I losing the hair on my head; Dr. R could see I was losing hair on my arms and legs too.

“You’re a puzzle” he repeated, while poking and prodding at my at my skin, “There should at least be evidence of stubble. You should be able to see hair under the skin, even if you had just shaved.”

Actually it had been about three weeks since I’d last shaved. I’d been so obsessed with the hair on my head that I hadn’t even noticed my legs or arms. This realization sort of freaked me out. Dr. R was confused; in black and white everything said I was normal, but my body was saying something different. He ordered more blood tests, told me not to worry and come back in a month. He promised he would not let me go bald. Leaving his office I felt a sense of relief. I didn’t really have much faith in his promise, but I felt relieved that I’d found a doctor who was listening and looking for an answer.
That was the last time I felt any relief.

Before I return to Dr. R I have my follow-up GYN appointment with Dr. A where I’m told my hormone levels are fine. Dr. A doesn’t feel the hair loss is being caused by hormones and she doesn’t want to prescribe HRT because taking hormones can actually cause hair loss. She casually reads the ultra sound test results and tells me I have small cysts in both the right and left ovaries, and a uterine fibroid, but she says, “that’s nothing.” She prescribes Lysteda for my Stephen King inspired menstrual cycles, and urges me to get an endometrial ablation. And she’s out the door. (So absolutely zero help or advice for the hair loss or the peri menopause symptoms, and now I’m left with the added confusion about these “nothing cysts and fibroids.”)

Back to Dr. R he again calls me a puzzle and says all the new blood work came back normal. I’m about ready to tell him to shove his puzzle up his ass, but I don’t. I like him for the most part. He mentions autoimmune disease as a possible cause for everything. He does another exam and this time notices that I am not tolerating pressure on my stomach. Yes that hurts, don’t poke me there. He feels something is wrong with my gall bladder. Apparently really wrong, because he keeps repeating it…or maybe this guy has mild Tourette’s and repeats things like puzzle and gall bladder for no reason? I insist that Dr. A just told me that my abdominal ultrasound showed nothing.
“My gall bladder is fine.”
“No it isn’t.”
He calls for a copy of the test results. The test results are normal. “But you still have something wrong with your gall bladder, even if you don’t have gall stones; you could have a sluggish or slow gall bladder you need to have this checked.”

Then he tells me,“Hormonally speaking you are a perfectly healthy woman. You are not even in menopause; you could have a baby if you wanted to.” WHAT? Of course I could have a baby if I wanted to. That was never the question!  I can feel myself begin to scream. “I know I’m not in menopause because I am still having periods. But I also know damn well I’m in peri menopause and it’s making me crazy!” For several years now I’ve been suffering with hot flashes, erratic sleep, mood swings and dry itchy skin. And over the past 18 months I’ve been having trouble with memory and “brain fog” and I’m even “losing my words.” (I get confused and seem to have trouble finding even simple words.) Dr. R tells me that the memory problems are being caused by the stress of my hair loss. I call bullshit and tell him that all of this was happening well before any hair loss.

Now I’m angry, “Three years ago the GYN tested my hormone levels and confirmed I was peri menopausal. And basically what you’re telling me now is that this test three years ago was wrong, but the test today is correct, even though it’s the same FSH test?” (The FSH test is not a reliable test because when you’re in peri menopause your hormones can fluctuate dramatically!) As far as I’m concerned, peri menopause was NEVER in question; the only question was if it was causing the hair loss.

Now I’m in tears. Dr. R looks uncomfortable. I think about the first time I saw him and his promise to not let me go bald. I want to tell him he should never promise something he cannot deliver. But instead I just sit there staring at him, mascara running down my cheeks, and wanting to die. Another doctor who thought they could cure anything but when they can’t find the answer easily they just wash their hands of you. He writes orders for more blood work and again tells me to check my gall bladder. I leave Dr. R’s office knowing that I am just wasting my time. I sit in my car and cry for another 10 minutes before returning to work. I just want to give up. But I’m still hoping that somehow I won’t go bald.

Back to my primary care doctor; ask him about the gall bladder. He tells me nothing is wrong with my gall bladder I have acid reflux, take these pills. My primary care doesn’t think anything is actually wrong with me at all. He tells me that I should just use Rogaine for the hair. “But it’s not just my head” I tell him, “it’s my legs, arms, arm pits, and eye lashes too.”  He seems to ignore that and simply asks, “What are we going to do about your cholesterol?” All he ever cares about is cholesterol. I am tired I have a headache, “I’m sorry but, I really don’t give a shit about my cholesterol right now!” Dr. J tells me to get a HIDA scan (but doesn’t write the order) to check the gall bladder and he prescribes something for acid reflux. That’s the last time I go to this primary care doctor.

And back again to Dr. R where he is still insisting my gall bladder has a problem. He acts like he wants to remove it right there. He shakes his head about my primary care doctor, and recommends a new one. He writes the order for the HIDA scan. Then he drops the bomb that he believes I have an autoimmune disease. Apparently I’ve tested ANA positive. “What does that mean?!” He tells me that it means I have some sort of autoimmune disease, but doesn’t explain any more than that. He rattles off a whole slew of possible diseases, Lupus being one of them. My head begins to spin. Then he says the rheumatologist I’m going to see in two weeks will need to explain. He tells me that being an endocrinologist there is nothing more he can do for me. He wishes me well. And just like that, my relationship with Dr. R is over.

I feel dazed and angry leaving his office. Why in the world would he even bother to mention something like being “ANA positive” or tell me I have “some autoimmune disease” if he wasn’t going to explain it? He’s left me to wait two weeks for an explanation? He should have just kept his damn mouth shut!  I need a drink, and a cigarette. I sort of want to punch something, but as I’m walking out of his office I feel like my knees are going to give out. I went to the doctor with some hair loss issue; positive that I would be told I was losing my hair due to hormones, stress, and poor diet. I truly believed the doctors were going to tell me that the hair loss was due to lifestyle. But going to the doctor has only caused more stress, and now I’m worrying about some “nothing cysts,” a “mystery sluggish gall bladder disease,” some unexplained ANA test, and a million possible autoimmune diseases! If my hair wasn’t falling out from stress before, it sure as shit is now!

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4 Comments

  1. Anonymous

     /  February 12, 2012

    So what do you do now? The HIDA is easy enough, I had one back in the fall. No biggie. You lay there for an hour and feel nauseous and crampy for 2 minutes, every time they inject the tracer or whatever the heck you call it. But you have to find someone who cares that you’re losing your hair. Another doctor?

    Reply
    • No one cares that I’m losing my hair. What’s worse is most of the doctors make jokes like, “join the club.” It’s just not a big deal to anyone. And that is fueling my anger. I had the HIDA scan, it didn’t make me nauseous at all, but I kept laughing to myself thinking, “what’s the best treatment for hair loss?…Let’s inject nuclear material into your veins.”

      Reply
  2. Tanika

     /  February 12, 2012

    We are all behind you Christine, surrounding you with love and prayer. After three years of IVF, I can agree that doctors suck! Keep searching, wholistic practitioners may be helpful as well.

    Reply

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