Well.

[TracyL1975]

My doctor called me today.. She is concerned about the very high level of steroids I am now taking (20 + 20 hydro + .25 of dex). My body is a mess --- weight gain, bad arthritis, badly thinning bones, uncontrolled diabetes (despite 2000x mg of metformin a day). Apparently, the care I have been receiving over the last 10 years was shoddy. I got an inkling of this when I repeatedly questioned my doctor about 10+20 lb a WEEK weightgain, to which her reply was 'don't eat so many comfort foods'. New doctors are horrified by the amount of steroids I take.

Anyway, as far as the surgery, they are going to do the remaining corrective surgery piece, as well as the adrenalectomy in one shot.. Kinda scary.. Any thoughts or advice?

[peaceandparty]

relax
dont get frightened by the doctors estimates
dont worry too much
there is plenty of time to work wonders with your body
with
better nutrition
good vitamin and calcium supplements
massages at least every month

and keep talking here
and tell us every little nitty gritty detail you desire to share

i for one am listening!

peace be with you

i also have osteopaenia in my neck and god knows where else
i suspect arthritis is setting in at the ripe age of 31

[Sunshine1]

Dear Tracy,

Would you consider going to the U of Mich @<hidden> Ann Arbor?

They did lots of things wrong like the genital surgery, finger dialation, genital exams by Resident students and the Endo (all taking a peek, pull, and poke) but I know they meant well after I've had about six martinis and 2 shots of JD wiskey ........I could kill myself tommorow with the peace that they issued me an apology over everything and that was pretty classy of them. I was just a fucking lab rat and this is good shit " Medicine isn't always right but it is forever changing "BUT the one thing that they did right for the the most part was the dosing - They had me on the right dose for CAH until this one endo in training but ....give them a shot to help you with the Dose of Hydro and I don't have a clue as to why you are on the Dex. I think they might be of help as they've learned a lot since me.

I was on Pred for years ( 8 times as stronge as pred) and moved out of state and now take 25mgs of hydro/day ..it's Ok but haven't felt that great since the pred.

For they Osteophrosis? they have medication to help with that.

Have you had your thyroid checked?

Why the adrenalectomy?

Good luck

[TracyL1975]

I am going through the henry ford health system.. They seem to have their crap together. My new endo has run a battery of tests.. She lowered my dose from 40/day to 30/day.. + the .25mg dose of dex. So far, I have had 3 ad. crisises and counting (I am going for the high score).

At this moment, my thyroid has been tested. Seems to function properly. I go in front of the entire board of doctors at henry ford in a few weeks.. (Run the little maze like a good lab rat, but at least my clothes remain on).

The osteo-arthritis is purely caused by the high dose of hydro I am on. I have the spine of a 60 year old, according to them. The diabetes is scary as well. I am on a specially designed diet of adult 'baby formula' for the last 2 months.. Ie --- VERY calorie restricted diet. I still weigh over 300lbs. This diet, as calorie restricted as it is, is more food than I am used to.. (I have had my goings around with weight management and got a diagnosis of anorexia just recently).

A side note, since I did never have the corrective surgery done - they are going to do it.. (its a matter of plumbing at this point) -- I have never been treated with as much respect as the doctors at henry ford have treated me. Like you I still deal with the crap that this life brings.. I have had exactly ONE consensual sexual experience, and that one caused me to become so violently ill, I do not care to repeat. I only get thru every day because of the 'tricks' I have honed so well.. (The tricks I have are coping mechanisms purely related to autism, but they work well enough for the CAH stuff).

[Sunshine1]

Dear Tracy,

I actually was treated at Henry Ford as well from 1970 -73.


Best Wishes

[Kailana]

I just wanted to sayhello and welcome to BLO.

I am curious about the adrenalectomy, are they going to remove both? or just one? I have lived most of my life now with only 1 adrenal gland. I was diagnosed with CAH but currently its still debatable whether or not i actually have CAH, It actually looks like i have Cushings, but at the same time am suffuring from Addisons. or at least Addison like symptoms, With Cushings, its very confusing when dr's dont actually talk/discuss my bloodwork.

Anyways, do you know what they expect to have as an outcome with the adrenalectomy? I am curious, but want to say best wishes as well. Surgery all surgeries can be dangerous. Keep your spirits up.

With love,

[peaceandparty]

sorry but i cant help myself!

but doctors need to discuss much more with their patients-their theories and every avenue explored that the patient feels necessary
too many patients -too few doctors
too much risk,leaving our lives in just their hands

there are so many routes to take and we intersexed are being underheard
and not properly examined and the results that some doctors get need to be seen by other specialists....its a crock of....blahblah.......too many times
not all the time,but toooooooooo much .........

blood work is a simple process and most of the time its not done enough or the results are not analysed enough or well enough!

anyway:clock: :roll:

[TracyL1975]

Sorry.. I've been away.

I guess the plan is to remove both. I meet with the board of doctors on Tuesday, so I will know more then. As an upshot, they are going to complete the stupid CAH corrective surgeries (hopefully -- I have had my hopes dashed before on this one). Aside from everything else, all I know is that its something different, rather than the answer to increasing cortisone.. (I was on 40mg/day hydro and .5 mg dex, and old dr wanted to increase that to 50mg/day hydro + the dex... I have pretty severe diabetes, and lots of bone loss. I hate my life the way it is now.




I just wanted to sayhello and welcome to BLO.

I am curious about the adrenalectomy, are they going to remove both? or just one? I have lived most of my life now with only 1 adrenal gland. I was diagnosed with CAH but currently its still debatable whether or not i actually have CAH, It actually looks like i have Cushings, but at the same time am suffuring from Addisons. or at least Addison like symptoms, With Cushings, its very confusing when dr's dont actually talk/discuss my bloodwork.

Anyways, do you know what they expect to have as an outcome with the adrenalectomy? I am curious, but want to say best wishes as well. Surgery all surgeries can be dangerous. Keep your spirits up.

With love,

[TracyL1975]

Well.. An update.. Of sorts. I am back to square one. Sort of.

I met with a board of approximately 20 doctors and surgeons at Henry Ford. My doctor was presenting my case, and her thoughts of adrenalectomy.. Well. She was shot down faster than imaginable. Lots of arguing.. Until another doctor (practically shouted)... "The dosage of hydrocortisone she is on now is not much higher than adrenal replacement which is 25-35mg of hydrocortisone. To sustain her body mass, she would have to be consuming a minimum of 3000 calories a day. We need to rule out patient intake in this case. I recommend a gastric bypass. And all of the doctors agreed. Even after explaining to them that I have a diagnosis of Anorexia that is NOT under control emotionally. I only eat the bare minimum that the diet program I am on allows. I pulled out one of the meal packets for the doctor to examine, but he still kept insisting.. I left that room as hopeless and defeated as I have ever been.

The next day, the semi - retired endorchologist that 'helps out' at the william beumont weight control center called me.. He said that gastric bypass surgery should be the very last option, after everything else had failed. He made me promise not to pursue it.. He also stated that the dosage of Dexamethasone I am on is the equivelent of 20mg of hydrocortisone.. thus blowing the other doctors theory out of the water. He recommended I contact a semi-retired Cushing's syndrome specialist at the University of Michigan, and get his opinion.

I have been googling "Cushing's syndrome". One site in particular has photographs of a certain kind of 'stretch mark' that a person with Cushing's have. Surprise, I have those exact same color stretch marks in all of the noted places on my body. my torso and face shape match.. I even have the 'hump' in my back.

Througout my whole life, I have always assumed my weight was my own fault. Assuming of course, I am told that I simply 'eat too much'. Of course, I believe what I am told. I think I mastered the ability to ignore hunger pains by the age of 23. I stopped eating red meat and candy at the age of 24.. I gave up all forms of carbonated drinks around the same time. At the time, my heaviest weight hovered around 240. Around the age of 28, I was given Dexamethasone to help control the CAH symptoms. That is around the same time that I first exceeded the 300lb mark. Sometime in August 2005, I stopped taking dexamethasone (I was rather interested in dating, and had met someone). In a matter of a few months, my weight dropped to around 210. In december, I was hospitalized due to an overload/breakdown (breakup + buying a house + stress of holidays). They diagnosed me with an eating disorder. They also forced me to resume taking dexamethasone as my protests to the drug were chalked up to the eating disorder. Besides, the doctors knew best, right? Upon checking into the hospital, my body weight hovered around 200lbs. Upon checkout two weeks later, I was 220. 1 year later, I was at 300lbs.

4 months ago, my primary care physician asked me to join the weight control to 'prove' to the endos that there is a real problem. I have been faithful to the program. I work out in the gym.. I work out very hard, and I spend as much time there as I can.

Overall and especially the events of the last week has had a devastating impact on my mental well being. As I type this post, I cannot help but cry. Over the past few months, I have become a loner. The few people left in my life are always saying things like -- if you don't love yourself then nobody else will love you. The funny thing is? I LOVE myself.. I love everything -- except what is on the outside. On the outside is not me. The outside does not match the inside. On the outside is a grotesque distorted image that doesn't even RESEMBLE me. I look in the mirror, and the image I see back is that of sloth. Lazy, uneducated, overindulgent sloth. I see someone who spends her time eating boxes of twinkies in front of a tv displaying jerry springer. I see it, and I know others see it. my own distorted mental image aside, I know that my body cannot survive like this. Besides, I do not want to live like this. If the UofM doctor cannot help, then I do not know what is left.

Tracy

[Sunshine1]

Hi Tracy,

Do you have an Endo that follows your CAH?

What type of CAH do you have?

I've been tested for Cushings myself.

Also:bounce: What about thyroid conditions? Have you been tested for anything like Hashimoto's thyroiditis? What a name but a very common condition and I have this as well as Simple -Virilizing CAH.

and:bounce::bounce: I really don't care about weight in how people judge me but I need to lose weight for my health now. I've been 128 and hated it because of attention from men. I've weighed 150 and still the attention and so on ...know its guys that like chubby women as I weighed 180 and 209 but I had to lose some weight becuase it was affecting my health ...sooo I've gone from 209 to 195 with taking the Cortef 25mgs/day and the synthroid .125 for the thyroid.

I'm glad that you didn't go the adrenalectomy route until more consideration about that and it's good that you are going to the U of Mich as they really get the dosing part but all the genital exams by the students and Endo and that surgery to top of the surgeon and his finger dialation destroyed any sense of boundaries/self esteem that I had and violated my childhood/teenage years to where nothing matters but .....the only good point is yes can help you with this as they've had years of practice.

also:smile: i was wondering what type of food do you eat? i touch pasta/bread/potatoes/corn and I'll gain weight no matter what.

I'll write more later

[peaceandparty]

"I cannot help but cry. Over the past few months, I have become a loner. The few people left in my life are always saying things like -- if you don't love yourself then nobody else will love you. The funny thing is? I LOVE myself.. I love everything -- except what is on the outside. On the outside is not me. The outside does not match the inside."

i can totally relate to this....but not presently but from memories of the past

i get the feeling also that many of you probably feel i dont belong here
and that is mostly because of how you see me or perceive me!
and your point above that i quoted you on brings my opinion to the forefront
because
"the outside does not match the inside"

i would really appreciate it if we could all try and feel more like an intimate community here and on other forums
i think sometimes that its very much more necessary with hormone takers especially to make sure we,you and i feel like are posts are not being skipped-
i know that i am not perfect in this myself...
but if we could encourage eachother by simply posting something like:

]hello all....i read everything here in this thread...thanks for it![/COLOR]

and then we can magically turn "views" into "hits"
or continue to go down a dark road of not knowing who really cares
obviously those that dont care-dont write-just read

i hope that all of you who are reading
will also give it a shot
and hit our hearts with love

[TracyL1975]

Hi. i am posting this from my motorala Q smartphone, so i appologize if it doesnt come through correctly.

i have 21 hydroxy CAH, of the virilzing variety.

my daily diet consists of:
4 HMR meal replacement packets @<hidden> 110 calories a piece.
4 oz Turkey pattie
1 HMR vaccum packed meal @<hidden> 210 calories
salad consisting of lettuce, tomatoes. spinich. and cucumbers.

i cannot physically make myself eat anymore, so I dont.

i honestly do not know if i have been tested for those other conditions, but i know that the weight control doc said my thyroid was normal.

i know i am judged, sometimes i care, sometimes i dont. i have nothing a man wants, and a man has nothing i want. it works out. like you i know that the violations never ever go away, despite how much my mom says i am being silly. i maintain that i do not ever to have that boundry crossed again... even by myself... maybe one day i will feel different.

at this moment i would be extrordinarly pleased with a body weight of 200. i doubt i will get any less given my chemistry, and i was quite happy with what i saw.. when i was that weight the outside matched the inside.
Hi Tracy,

Do you have an Endo that follows your CAH?

What type of CAH do you have?

I've been tested for Cushings myself.

Also:bounce: What about thyroid conditions? Have you been tested for anything like Hashimoto's thyroiditis? What a name but a very common condition and I have this as well as Simple -Virilizing CAH.

and:bounce::bounce: I really don't care about weight in how people judge me but I need to lose weight for my health now. I've been 128 and hated it because of attention from men. I've weighed 150 and still the attention and so on ...know its guys that like chubby women as I weighed 180 and 209 but I had to lose some weight becuase it was affecting my health ...sooo I've gone from 209 to 195 with taking the Cortef 25mgs/day and the synthroid .125 for the thyroid.

I'm glad that you didn't go the adrenalectomy route until more consideration about that and it's good that you are going to the U of Mich as they really get the dosing part but all the genital exams by the students and Endo and that surgery to top of the surgeon and his finger dialation destroyed any sense of boundaries/self esteem that I had and violated my childhood/teenage years to where nothing matters but .....the only good point is yes can help you with this as they've had years of practice.

also:smile: i was wondering what type of food do you eat? i touch pasta/bread/potatoes/corn and I'll gain weight no matter what.

I'll write more later

[Sunshine1]

Tracy -

Are from you first post taking 20+20 grams of hydro PLUS the .25 of DEX?.
I'm no expert but I've never heard of people taking this much ...this is like 80 grams total and this is per day ? I can understand hydro or dex but both???

[TracyL1975]

I am taking 20+10 of hydro and .25 of dex..
Tracy -

Are from you first post taking 20+20 grams of hydro PLUS the .25 of DEX?.
I'm no expert but I've never heard of people taking this much ...this is like 80 grams total and this is per day ? I can understand hydro or dex but both???

[Sunshine1]

That still is alot of cortisone combined cortisone - I have simple virilizing CAH myself and take 25 mgs of Cortef (brandname of hydrocortisone) only why the hydro and on Dex ? TOO? so it's like you are taking 50mgs of cortiosnes combined and that ...again I'm no expert but you don't hear people on that much or I guess if someone weighed 300 hundred but still that amount of cortisone does have a role in weight gain and apperance.

Are you followed by an Endo or is another Doctor trying to manage the CAH?

[TracyL1975]

I never really realized how strong the dex is.. the dex was prescribed by a doctor about two years ago.

just now i got off the phone with my endo... seems there is quite a bit of a disagreement. she admitted i do have drug induced cushings, but there isnt much that can be done.. i dont know.. i am at such a loss.

i am going to still give the uofm doctor a try.

i hate this crap. i barely made it out of the building i work at nwithout crying.

That still is alot of cortisone combined cortisone - I have simple virilizing CAH myself and take 25 mgs of Cortef (brandname of hydrocortisone) only why the hydro and on Dex ? TOO? so it's like you are taking 50mgs of cortiosnes combined and that ...again I'm no expert but you don't hear people on that much or I guess if someone weighed 300 hundred but still that amount of cortisone does have a role in weight gain and apperance.

Are you followed by an Endo or is another Doctor trying to manage the CAH?

[Sunshine1]

Wouldn't the side effects change if you got the right dosage? (i read that on a cushing site)

All the Best in you're search.

I think the U of Mich can help .....cross fingers here.


I don't post that much because it really
isn't my thing anymore but felt I needed to post to yours
as not many people post here w/CAH. I did post often but it wasn't really wanted and I've moved to other things.

Maybe the National Insistute in Maryland can also help?
Called caresfoundation.org even though they aren't for me - maybe they can help?

[TracyL1975]

I appreciate the advie you have given me.. believe me when i say that this is pushing dangerously close to the edge. i hope uofm can help... otherwise.. i dunno.

i do not understand a lot of this stuff in regards to dosage levels. i am a voip expert, not a doctor. i can tell you in intracite details including mathmatical formulas how to route voice phone calls over a data network, and the internet. but these doctors talk fast in with words i do not understand. they do not explain things to me. i feel almost swept under a rug most times.

i will try caresfoundation.


Wouldn't the side effects change if you got the right dosage? (i read that on a cushing site)

All the Best in you're search.

I think the U of Mich can help .....cross fingers here.


I don't post that much because it really
isn't my thing anymore but felt I needed to post to yours
as not many people post here w/CAH. I did post often but it wasn't really wanted and I've moved to other things.

Maybe the National Insistute in Maryland can also help?
Called caresfoundation.org even though they aren't for me - maybe they can help?

[peaceandparty]

firstly sunshine

i had that feeling on blogs before...that i was posting and nobody really wanted it
but i can tell you that i like your intention of trying to help with your words in your posts

i would say-sunshine...please start again...a new beginning......start writing again and notice the change
because in time everything can change
and i for one am here listening ,reading and commenting
i am a carer and interested in what it is like for other quarters of the intersex community

if you got the feeling sunshine of you shouldnt bother posting as much-then please get the feeling to just do what you are doing the last few days
especially because tracy needs it


now

tracy!

i am xxy chromosomes
naturally intersex and in some way or another
it can be really bad in my life too because ultimately i feel intersexed
and i am treated just as a plain man

my hormone imbalance has caused many a dis--ease
i am not at ease sometimes
and through my life i have had many imbalances
i would say that your treatment seems to be imbalanced-yet it is trying to balance you

i think from what you have said in your above posts that....you tracy are amnother classic example of a case that doctors are not treating the best at all........
why are you crying for instance when you left work?
is it something to do with you feeling alone or helpless?

or that you feel like giving up?

you obviously need assistance
and coming to a blog...at least this one for the moment will certainly give you a bit more ease.........

so hope at least you are reading!
everything!
like me!

[TracyL1975]

I appreciate Sunshine posting here, as she has gone through similar circumstances to my own. As odd as it sounds, I feel less alone. But Sunshine has her own reasons for not wanting to post as much. I respect those, and would not want to have her post simply on my accord. I would hope that nobody else would feel that either.

I spend my life alone. I deal with the torment of my childhood alone. I deal with the battle for my health and weight alone.

I do not wish to be alone, it is where I am in life. As cliche as it sounds, I often hear that if you do not like yourself, others will not like you. Such is the paradox of my existence. I cannot like myself. I am repulsed by myself. I only get through the end of each day sane, simply because it is what is required.

Do I need assistance? Probably. Do I have deep emotional scars from this disease, and its treatment? Without a doubt. This stuff has a way of making a person feel helpless and hopeless. I do have neat tricks for coping.. but those methods are not permanent.

Again, I just get through the day, one day at a time. Sometimes by closing the door to the past, and forgetting it exists, sometimes by distraction -- I can spend hours on the internet researching the physics behind a cathode ray tube for example. Sometimes, I spend large amounts of money on material things. thusfar, I have resisted the urge to use chemical escape methods (drinking and drugs). The scariest thing in life I face is losing hope for tomorrow. Losing hope that I will no longer spend my life alone.....



firstly sunshine

i had that feeling on blogs before...that i was posting and nobody really wanted it
but i can tell you that i like your intention of trying to help with your words in your posts

i would say-sunshine...please start again...a new beginning......start writing again and notice the change
because in time everything can change
and i for one am here listening ,reading and commenting
i am a carer and interested in what it is like for other quarters of the intersex community

if you got the feeling sunshine of you shouldnt bother posting as much-then please get the feeling to just do what you are doing the last few days
especially because tracy needs it


now

tracy!

i am xxy chromosomes
naturally intersex and in some way or another
it can be really bad in my life too because ultimately i feel intersexed
and i am treated just as a plain man

my hormone imbalance has caused many a dis--ease
i am not at ease sometimes
and through my life i have had many imbalances
i would say that your treatment seems to be imbalanced-yet it is trying to balance you

i think from what you have said in your above posts that....you tracy are amnother classic example of a case that doctors are not treating the best at all........
why are you crying for instance when you left work?
is it something to do with you feeling alone or helpless?

or that you feel like giving up?

you obviously need assistance
and coming to a blog...at least this one for the moment will certainly give you a bit more ease.........

so hope at least you are reading!
everything!
like me!

[peaceandparty]

i love all the posts so far on this site

thanks so much people for being so open!

all i do is try my best!!

peace be with you

:cfs_flowe
hope this flower represents peace as much as possiblo!!ho ho!:razz:

[Sunshine1]

Ok first to Gavin- I read your post and know that you mean well.

Tracy- Did you look at caresfoundation.org ? they are having a conference in Nov.

I post every once in a while as I have other conditions besides CAH our adrenal gland condition- I also have Celiac Sprue which I need to follow the no wheat diet better then I'm doing and I also have hashimoto's thyroiditis besides being a gyno cancer survivor for three years....so much medical stuff on my plate besides school.

[TracyL1975]

Sunshine,

I have consulted with the CARES foundation, who have proven quite useful.. I even spoke with someone in similar circumstances as I am.

Today I got the results of the MRI of my 'lower region'. After years of of phrases as "abnormal, uncorrectable, or even -- "why bother" by doctors, today I was told that repair would be 'fairly routine' and that all of my reproductive organs are normal and fairly typical, and they all exist.. this does 2 things to lift my spirits -- 1.. I am female.. 100% beyond a doubt (despite another doctor long ago's assertation that I had no internal female organs), 2. Using the new doctor's words "repaired' not 'created' not 'artificial', just 'repaired'. I cannot explain, but the word 'repaired' means the world to me. 'Repaired' to me means simply that something's broken -- not something that was never meant to be.

[Sunshine1]

:wavey: I'm glad things worked out.

It's not my thing but maybe you will go to their conference?

take care :smile:

[peaceandparty]

thanks sunshine!for the mention!:star:

[steve/lisa]

I just found u on here glad ur here maybe now i can get info on how to use this dumb machine of mine,anyway please call me lisa. My handle is steve/lisa u should go to members names and read my posts and see if I'm close to u or not anyway wecolm to BLO.Lisa

[Labrador]

Hi Tracy,

I'm new on the site. Just wanted to let you know I appreciate your sharing. It helps to know that others have similar fears. .... yep, and now I'm feeling a bit shy. So I'll just leave it at that.

lab