time to jump in

[Guest guest]

Hi everyone,

I've been lurking for a few days, and I've learned so much from you all

already; but I figured it was time to introduce myself and ask for your

opinions on the stuff I'm trying to work out.

I'm sorry this e-mail turned out to be so long. If you're sick to death of

peoples' stories about unhelpful doctors and want to jump straight to the

questions, scroll down to the 3 asterisks.

I'm and I'm 26. In a few months time I will have been noticably

sick for 10 years. I've been given various diagnoses during that time:

iron deficiency anaemia in 1997; asthma, chronic fatigue syndrome and

fibromyalgia syndrome in 2000; sleep apnea, arthritis, insulin resistance

and epilepsy in 2001; hypoglycemia in 2002; polycystic ovarian syndrome

and endometriosis in 2003. Some of the diagnoses have been right (there

the ones like PCOS that I knew for years before I could get a doctor to do

the proper tests), some like CFS have served a purpose, and some like the

epilepsy were just plain wrong. After a year of medication that did

nothing but make my life hell, my partner realised and pointed out to me

the connection between my seizures and me not having eaten for a few hours.

In a couple of hours of research I came up with the answer that the

neurologists had missed for the last year: I figured I was hypoglycemic,

and probably hypothyroid too.

I changed my diet and the seizures happened much less often. So I went to

my doctor with that evidence. He agreed with my diagnosis of hypoglycemia

and agreed to me reducing the epilepsy medication slowly until it was out

of my system. He's a GP, a CFS specialist, and he also has a good

knowledge of natural therapies. He's the only good doctor I've found, and

I've seen a huge number of them over the last 10 years. At the time my big

concern was the epilepsy medication because I knew it was doing nothing but

making my life hell, but I did more reading on hypothyroidism and was

amazed at how it seemed to describe my situation.

Early in 2003 I saw my sleep specialist who agreed that hypothyroidism may

be a problem and ordered a blood test for me. I was so excited when I got

the results back and found that my TSH level was at the very top of the

normal range (3.7). Here finally was evidence a doctor couldn't ignore! I

went to my CFS specialist with my results. He was happy for me too and

hoped that this may be the cause for my health problems. However

hypothyroidism is something he's not an expert on so he referred me to an

endocrinologist. I chose the endocrinologist. I searched the internet and

chose one who people said cared about them more than there blood tests.

I actually e-mailed him and asked if he wanted me to get any tests done

beforehand. He wrote back and said he thought it was best practice to

order the tests once he'd seen me, and I thought that was positive. At the

first appointment he just gave me a form for the blood tests. At the

second appointment he was horrible. My TSH had dropped back to 1.9 (it'd

been 2 months since the last test) and he saw nothing significant in my low

free T3 level. I asked him why he thought the TSH level was so different

and he said my thyroid problem had probably just been temperary due to an

illness of some kind. I asked him to explain my other symptoms. He said

iron deficiency anaemia can cause tiredness and insulin resistance causes

weight gain. I said what about my other symptoms like cold intolerance,

emotional instability, heavy painful and irregular periods and chronic

fatigue just to name a few. He didn't have any explanation for those and I

walked out and vowed never to go back.

I couldn't understand why my TSH levels were so different and just couldn't

bear thinking about the thyroid thing for a while. I was scared back into

thinking about it a couple of weeks later when my skin became flakey. And

I knew something had to be done when I got that tight feeling in my throat

like someone had their hands around my neck and was squeezing hard.

At this time I was reading a lot about hypothyroidism and came across a

phrase that rang a bell. The phrase was " low basal metabolic rate " and I

remembered it from when I was in my early teens and my stepfather said I

should ask the family doctor why I get cold so easily and can cope with the

heat when everyone else is complaining. So I asked her and that was the

answer. " nothing to worry about " she said. I was absolutely furious!

A couple of weeks later the tightness in my throat was hurting so much I

just couldn't take it anymore, so I went to a local GP who I could get an

appointment with that day and she referred me for an ultrasound of my

thyroid. That happened a couple of days later and the report said my

thyroid was slightly enlarged and I had a nodule. I was scared about what

the nodule might be and I knew that it would take a couple of months to get

into see a new endocrinologist so, reluctantly, I went back to the old one.

Predictably, he was no help and the appointment was a complete waste of

time and money. He could not have cared less about the nodule that I was

so stressed about. He said you could go to a bus stop and half the people

there would have a nodule. I said the difference was that mine wasn't

there before. He said it probably wasn't serious and, even if it was

cancer, we could do nothing about it for 6 months and it wouldn't matter.

I said that at the very least it was evidence that my thyroid problems

weren't temperary like he had thought and asked for the results of the

latest batch of thyroid levels I'd just had done. My TSH was back up to 3

and he admitted then that things weren't stable and examined my thyroid.

He didn't have much to say about it though and would've been happy to just

" monitor things " . I insisted on medication and he would not give me armour

but, for the sake of getting rid of me I think, wrote a prescription for

oroxine (the Australian equivalent of synthroid.

I went back to my CFS specialist and told him all about my bad experience

with the endocrinologist and asked for a referal to a good one, and for

armour in the meantime. He was happy to prescribe me the armour, but we

talked about it and decided that I should try the oroxine first for 6

weeks. We both thought it probably wouldn't help but at least we could

then tell the next endo that I'd already tried it - plus, in Australia,

there's quite a substantial price difference and oroxine is much much

cheaper. After the 6 weeks I was feeling no better and so he started me on

half a grain of armour. This was meant to be a temperary measure until I

saw the good endo.

It was October by this time, and I was leaving in early November to spend a

month with my partner who lives in the US. I tried to get an appointment

with the endo before I left but he was booked up until the end of the year

and they didn't have the diary for next year yet. When I got back home I

called his office again, answered all their questions, and then they called

me back a couple of days later and said they wouldn't take me because I

don't have private health insurance.

I asked my CFS specialist for a referral to another endo and, while I will

go and see her because she's one of the best reproductive endos in the

state, I think I need to approach my thyroid and adrenal issues in a

different way. So I've found a GP who's also a nutritionalist and

specialises in hypothyroidism and adrenal insufficiency. I feel like I

need help dealing with this rather than doing it on my own because I feel

so overwhelmed by all the stuff I've read about my various conditions I

just don't know where to start, or how to approach things in a way that

will demonstrate what's working and what isn't.

***

So my appointment with the nutritionist is a week from today, and I'd like

to get your opinions on a couple of questions before I see her: One thing

is, I take my half grain of armour first thing in the morning, but at night

I'm often hot, particularly my legs. I feel like I'm badly sunburnt, or

like I'm radiating heat. Does that sound like it's related to a hyper

state, or adrenal problems, or both?

Another thing is that, for a couple of weeks now, I've been getting goose

bumps every so often just on one part of my body like my lower leg or upper

arm. Here in Australia we're right in the middle of summer so it's

definitely not cold-related. I've never read about this anywhere. Has

anyone ever experienced this? And do you know what the cause was for you?

Also, I'm confused about adrenal insufficiency and exhaustion, and

wondering which category I belong in. I have symptomes like taking a long

time to feel awake in the morning (actually, it's usually not until the

afternoon), startling easily, and having a very low tolerance for stress,

but I also seem to be able to produce adrenaline when I need to. For

example, I helped organised a weekend-long convention a year ago, and I

felt better than I usually do all weekend and was able to get lots done;

but as soon as it was over I crashed. By that I mean I collapsed on the

floor, I could not respond to things for a couple of minutes although I was

aware of what was happening around me, and I was completely exhausted and

unable to do anything. Also it feels to me like, for me to have a

productive day like anyone else, my adrenaline needs to kick in at a level

that can't possibly be healthy. So for me to have a good day which is like

everyone else's average my body needs to release the amount of adrenaline

that most people only need in an emergency. Is this making sense?

Thanks for reading, and for any suggestions or ideas you might have.

.

--

Tink: atink@...

I'm not an angry girl,

but it seems like I've got everyone fooled,

everytime I say something they find hard to hear,

they chalk it up to my anger and never to their own fear (Ani DiFranco)

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