health care problems again

[blue]

it says on the health page of this site that BLO maintains a small list of respectful practitioners but there's nothing actually listed...can anyone tell me of a doctor in the bay area? this is for me, an adult. i have lots of chronic health problems but now i am having a rather personal one and can't imagine discussing it with any of the clowns i've seen in the past, who not only lack knowledge/experience with intersex patients, but can't even be bothered to hide their prurient interest in my body.

i have an intersex friend out here who's in medical school (hooray! someday respectful care will be available!) but she's hard to reach (i mean, she's in med school) so i am trying to look elsewhere for a referral of some kind.

[Betsy]

Hi Blue,

The provider area is lacking. It's reflective of a couple of issues...

Doctors generally are pretty clueless when it comes to anything beyond thinking surgery is a grand idea. There is virtually nothing about people, particularly adults, with intersex conditions in their medical education.

The other issue is simply a lack of resources to really search out good, reliable information on our end.

Depending on your needs, the AISSG has a few clinicians listed that may be of assistance: http://www.medhelp.org/www/ais/

I'm also presenting to a medical conference next month and am planning to talk about this issue. The focus of the talk is not surrounding surgery issues but will revolve around the lack of knowledgeable care we face as adults.

Betsy

[blue]

thanks for that, Betsy. i'm so glad to hear you're presenting on this subject.

i'm pretty appalled by the ignorance/agenda of the majority of doctors. it's dangerous in so many ways.

i have had chronic upper respiratory/sinus problems, chemical sensitivities, and something with symptoms like chronic fatigue or fibromyalgia for awhile, in addition to a repetitive stress injury, and have had the experience that even when i am being treated for these issues, involving my sinuses and lungs, or my arms/back, many doctors are still talking to me about my gonads/genitals and trying to get me in for a pelvic exam! or trying to convince me that i need surgery! as though i would do that, having managed to survive childhood intact in that way...but they think i don't know. one has tried to tell me my gonads are "precancerous" as if that word actually meant anything about my likelihood of developing cancer.

it is so discouraging and also traumatic, not to mention that i am not getting my actual needs and concerns addressed.

i'm scared that my problems are hormone-related but i have had that done to me already in spades, abusively, and have been off all hormones for years and just avoid doctors when i can. i try to do the calcium/weightlifting thing to minimize the early-onset osteoporosis risk but with the fatigue i can't always keep it up.

meanwhile, now i am having an actual problem with my genitals and i am terrified to see anybody about it, though also scared to do nothing.

if anyone's been through anything similar to any of the above-mentioned, i'd love to hear about your experiences.

in the absence of anyone being able to help, general support is, of course, also welcome! i could certainly use it.

[neko]

I've seen a few people here mention fibromyalgia and chronic fatigue. I wonder if this is common with intersex conditions. I know I had similar problems before I started taking estrogen.

I'd be careful with the calcium - the problem is not just eating enough calcium but ensuring that the calcium is metabolized properly and ends up in the right place. Before I got my hormone levels under control, I'd get calcium in all the wrong places, causing pain in my muscles/joints, headaches, and sometimes kidney pain. I was pretty much avoiding all calcium-containing foods because of this.

[Dana Gold]

Dear Blue,

Please understand I am not a doctor, and what I say is an educated guess based upon my own knowledge and experience within the medical field.

The homeostasis (physiological "harmony") of the body is interdependant upon various endocrine (glands and their hormones) factors. The "sensitivities" and respiratory problems described by you suggest an auto-immune (allergic-type response) condition.
Chronic fatigue and gonadal involvment suggest a hormonal cause.

Given the above symptoms, it may be possible that you have a thyroid condition, possibly hypothyroidism or hypoparathyroidism.
The alternative is an adrenal gland involvement. Both involve neuroendocrine hormones originating from the pituitary/hypothalamus axis and also affect calcium and cortisol metabolism. An imbalance of both or either of those have been implicated in Chronic Fatigue Syndrome. Chronic fatigue is also a symptom of hypothyroidism or adrenal gland insufficiency.

It is also possible that the imbalance of sex hormones (or lack of) is manifesting body responses leading to the symptoms you mentioned which are mimicing thyroid and/or adrenal conditions, osteoporosis-like conditions (stress bone fractures?) or generalized anemia....

There is no way to really know unless you see a reputable doctor who will listen to your symptoms and take the appropriate actions to find out your exact condition. Try to be proactive and dismiss the doctor's ignorance and focus on your well-being with him or her. Some suggestions for blood tests to discuss with the doctor/s

TSH, T3 and T4 (thyroid function), cortisol (adrenal function), calcium, magnesium,(minerals)... CBC (complete blood-cells count), iron, hemoglobin and the bilirubins. Inre your intersex condition; you ought to have your estradiol, testosterone, and liver function tested ( ALT & AST)......imbalanced hormones in the body may manifest as osteoporosis, and other disturbances in the metabolic pathways of certain minerals and vitamins ( B12 and folic acid) in the body....again causing fatigue/anemia.

Again, please do not take my advice as "gospel"...it is only a guideline to work together with a doctor, when you find one, to take charge of your medical care and not allow yourself to be passively ignored.

PS: Before they decide to perform surgery to remove your gonads because of possible cancer, they should do tumor-marker blood tests to determine if that is really the case: alpha-feto-protein and beta-HCG are diagnostic indicators of gonadal cancers ( I have had them done for me regularly)....also CRP (C-reactive protein) is good to detect inflammations (pre- pre-cancer) of such tissues, this test is also good to check for heart and arterial health..

Here are 2 websites to educate yourself with :

[http://www.umm.edu/endocrin/

http://www.endocrineweb.com/


Anyway, good luck in finding a doctor and take care.

Dana

[aziatic]

Hello, I dont know if this is related to IS but I was diagnosed with a rare blood disorder called ITP a few years ago and wasn't told too many details about it. I spent a few nights in the hospital and the doctor said I might need to take testoserone but it never got to the point where I needed it I also suffer from chronic fatigue, I am often told that I act like an old man . I hope you can find the right doctor and get the care you need

[blue]

thanks for the responses--these are much appreciated.

Dana, your thoughts are especially interesting. i had some testing done when i was 19 on my hormones, liver function, etc, and the results then were close to one possibility you mentioned--i don't seem to produce "enough" of the so-called sex hormones (estradiol and testosterone) to be within "normal female" or "normal male" range, whatever that means.

although i have had different interpretations of just how inadequate the supply is, all i know is the levels aren't "standard." i don't care about standard, what i want to know is whether i am at risk for things, or what i can do to improve things for myself. which i have been unsuccessful in getting answered by any doctors.

one even gave me fosomax without bothering to check my bone density! (i didnt take it, as she couldn't explain to me what it was, essentially telling me "nobody really knows" but admitting it collects in the marrow and remains there permanently. not something i want to do without knowing it's necessary!)

Betsy kindly gave me leads for a reputable doctor, who in turn gave me a lead for a more affordable reputable doctor, whom I can see anytime after the first of June thanks to HMO bureaucracy. it's not that long to wait except the new problem i am having seems quite scary and more urgent than that, but such is life. at any rate, i have something to look forward to with hope, which is very precious.

re: the ps--the np who recommended i get my gonads removed had actually never examined me for anything but my work-related RSI (arms, neck and back)! she was my worker's comp provider and i have NO idea how she even knew about my condition, cause i sure didn't tell her. when they transferred my care, she used my last appointment with her to urge me in this weird, secret-feeling way to get it "taken care of." it was truly bizarre & shook me up a lot. it filled my head with conspiracy theories and my stomach with bile.

anyway, thanks again for offering your ideas and websites to read! this is so valuable.

aziatic, thanks for responding as well--if you'd like to message me about chronic fatigue management, please feel free.

thanks again to everyone for caring, and i hope you're well!

[Dana Gold]

After reading some of your experiences with your doctors, I sense that your care has been substandard; leaving you with a heavy sense of mistrust and fear. Especially these 2 references:

quote: "re: the ps--the np who recommended i get my gonads removed"

NP is a nurse practitioner; PS?...I gather you meant PA, which if correct, would be a physician's assistant....BOTH of which are NOT qualified to be recommending surgery or doing endocrine work-ups.

I'm glad to hear that you have the possibility to find a doctor to take care of you in a hopefully less mysterious and more informational way. Again; please be proactive and demand to be referred to specialists........most likely you will be seeing a family doctor first (maybe) since HMOs require, in most cases, a referral from him or her to see specialists (endocrinologists, internal medicine, orthpaedics, etc.)

It'll be scary.........but, as you said, there is hope now.

Take care........June.........countdown: T minus 12 days and counting:rolleyes: ........*&%$# HMOs!!:mad: :confused:

Dana:)

[Dana Gold]

I don't know if it could help, confuse, or not apply to both or either of your conditions and circumstances; BUT I thought this particular thread and info within may be of some additional resource material and otherwise:


For you, also, Blue:


http://www.bodieslikeours.org/forums/showthread.php?s=&threadid=809

Dana:)

[Sofie]

one even gave me fosomax without bothering to check my bone density! (i didnt take it, as she couldn't explain to me what it was, essentially telling me "nobody really knows" but admitting it collects in the marrow and remains there permanently.

alendronate sodium (Fosamax)
Alendronate is a hormone that alters the cycle of bone formation and breakdown in the body.

[blue]

it is so great to be getting this information.

on the other hand, why the h*** couldn't my doctor have told me that?!?!

you know what i mean?

*sigh*

i'm very glad to have found you all!