Dana !

[Sunshine1]

Dear Dana,

In a prior post, you mentioned anemia, folic acid, and sex hormones. This caught my attention because I've had trouble with anemia for over 15 years. It would be great to have more information about this. I've been hospitalized twice because of the anemia and the Endo didn't consider that it was endocrine related. My CAH, according to the Endos has always come back with hormone levels that they are pleased with. Just the same it is interesting to read that anemia could be linked to an endocrine condition.

Thanks,

Aimee, Intersex Princess

[Dana Gold]

Hi Aimee,

Your anemia may not be a direct effect from CAH, rather as an indirect result of the medicines taken for it. Your testosterone/estradiol levels may now be normal due to cortisol administration (are you taking estrogen, too?) ; however, the long-term effects of hydrocortisone administration may suppress immune function (that actually is its function: anti-inflammatory, inflammation IS an immune response/prostaglandins ); that function determined by certain lymphocyte and helper cells production by glands that produce them (thymus) and levels of blood constituents that support their production. The bone marrow is the original source for ALL blood cells; of which some go to thymus for differentiation into "helper cells/T-lymphocytes". What I am suggesting here is that anemia has 2 considerations of causes. 1) reduced production of blood cells 2) reduced levels of macronutrients such as folic acid (folate) and B-12 which are crucial to the production of blood cells (especially red ones) and maintenance of hemoglobin levels.

Altered/imbalanced sex hormone levels may cause depletion of B-12 and folate levels, especially in those who are receiving exogenous estrogen. The long term use of ANY steroid medicine (cortisol, estrogen, progesterone, testosterone) should ALWAYS take into consideration depletion/side-effect factors!)

My sugggstion would be to have your B-12, folate, and hemoglobin levels checked, as well as CBC count. I am assuming that other constituents such as electrolytes (sodium, chloride, potassium) are done as a matter of course. Any metabolic disturbances by electrolyte imbalance may cause acidosis or alkalosis so you should always have CO 2 checked also..
Sex hormone levels and overall hormonal profile can only be determined accurately when the following tests are done TOGETHER:

total testosterone; free testosterone; estradiol; estrone; DHEA, LH and FSH. (blood for these tests should be drawn in the AM)

Hopefully you are taking your cortisol in a "circadian" dose cycle to accurately mimic your body's natural production of cortisols (early AM).

More info on anemia and related blood "disorders":

http://www.lef.org/protocols/abstracts/abstr-009a.html

More info on long-term side-effects of corticosteroid administration: (refer to table 2.)

http://www.emedicine.com/ped/topic1068.htm

If not being done already, therapeutic drug monitoring for cortisol levels should be done periodically to maintain consistent levels within applicable range for adrenal regulation.

I hope this helps some. I dislike the fact that doctors (some) take priority in considering genital and sex hormone factors first, and homeostasis/general health second in intersexed bodies.

That's why I am a strong advocate of "patient" self-education and doing research on one's condition....its called "right to know" and some docs insisit upon thinking we're dummies (or shouldn't be told... to perpetuate the "secret") and don't need to or can't be able to "understand" our own bodies and related conditions.

Anyway....bye, take care.

Dana

[Sunshine1]

Thank you so much !

When I saw the word bone marrow, it reminded me of another web page and my PCP mentioned bone marrow also. http:aafp.org/afp/20001115/2255.html

"Endocrine Deficiency

Endocrine deficiency states, including hypothyroidism, adrenal or pituitary insufficiency, and hypogonadism, may cause secondary bone marrow failure because of reduced stimulation of erythropoietin secretion. Hyperthyroidism may also cause normocytic anemia.

Decreased red blood cell production

Secondary causes

Chronic renal failure
Liver disease
Endocrine deficiency states
Anemia of chronic disease
Sideroblastic anemias" [Normocytic Anemia-November 15,2000- American Family Physician]

This is fantastic! I do have doctors now that are willing to talk with me because I'm not going to yell at them for the surgery that was done to me along time ago. I see all the tests results and they draw me pictures if I don't understand, I make them work for that BMW out in the parking lot : ) I have mouth and an attitude, I figured out along time ago that they work for me and because of the genital surgeries they are going to come clean with everything. I hired them and made sure that they were of course intelligent but also able to talk with me and not at me. Caring and open plus it turned out that that they are all on the cute side too. Medicine is about discovery and to me that is the fun part NOW but when I was younger, I always felt like a lab rat ( I work hard on not feeling that way but the feeling comes to the suface not matter how sensitive the doctor thinks he or she is ) and I developed post traumatic stress disorder from my contact with the medical establishment. When people want to poke around in your genital area and pull it apart like silly putty or measure your breast area with you being between the ages of 5 to 16 it messes your head up. It makes you paranoid about them when they with all the enthusiasm in the world want to take pictures of your genitals as an example of how not to be and then take pictures of surgery they are so proud of. To be honest there are times when I just want to get what I need from the Endo OR any other doctor (prescription, blood work orders) and get the hell out of there. BUT, other times I have the need to talk and it's nice to know that they are open to that. I actually write the questions down as an outline to follow. One doctor in paticular for another condition that I have is amazing. He is patient like you have all the time in the world with him, he explains things in great detail, he looks at you like you are a human first and a condition second. He validates my feelings about CAH by not down playing what I say or ignoring it. Plus, he's very funny and I can't be mad or frustrated when someone is making me laugh. He is no different from the rest but he is better at talking with people and deep down I have no trust for him either. I actually wanted to shove him away when he was examining me. Humor only goes so far : ) and I don't like doctors to come near me or let alone touch me anymore. My Endo stays on the other side of the room and I like that very much. Only his nurse practitioner gets in my face and it's hard not to slap that cunt across the top of her head.

There is a good chance that the anemia isn't from my endocrine condition but it is cool to even consider that pathway. When I was in my 20's, this woman Endo told me not to read anything about CAH which of course only made me more interested in reading everything that I could find on it. " Medicine isn't always right but it is forever changing" and I so like that sentence. I was ten years old and flipping through my medical records because it got boring waiting for all the residents to mobilize. I remember reading pseudo- hermaphrodite and thinking yeah that makes sense. For me, the words are no different than she has hazel eyes or he has brown hair. What bothered me was all the genital exams on the clitorectomy and some sort of a vaginoplasty. We care, We are learning, We are sensitive good people. YEP, that's their view but it's different when you are the one on the table with their hands inside of you. It's ironic that the same university medical center that I went to now has members on the ISNA medical board.

I do follow the circadian dose schedule but I was following it before I knew what the cicadian schedule was. When I was younger, I would always wake up around 5 am anyway and in my 20's I would get home from going clubbing which I did every night until 3 am and that's when I would take the med. Work starts at 7am so I usually take it before 6am these days also. My dosing is like this 25mgs hydrocortisone/day (10mg between 11pm -12am, 10mg between 4am-6am and 5mg between 2pm-4pm) The last time I was in the hospital the nurses came in at 9:30 a.m to give me my medication and I said" Ladies, you're to late" and then I tried to explain to them about the cicadian rythm. My water jug was more interested than they were.

I've never had estrogen but my folic acid feriten (sp?) level was 1 and I think the B12 was in range but I have to go through the hospital tests results again to make sure . Feriten is now 6 along with my hemoglobin going from 4 to 9.8 because of 4 pints of blood and iron treatments. I'm grateful for the pints of blood and the iron treatments but I want to know the reasons behind all this so I don't have to keep going for iron treatments.

I've had therapeutic drug monitoring for cortisol levels every three to six months since birth. Ambiguous genitals mean nothing when you can die from adrenal insufficiency because you don't have enough cortisol in your body.

I don't write much anymore but I do read and enjoy all of your posts.

Thanks,

Aimee

[Dana Gold]

quote:

"I'm grateful for the pints of blood and the iron treatments but I want to know the reasons behind all this so I don't have to keep going for iron treatments".

Dear Aimee,

Your ferritin and hemoglobin were WAY too low and diagnostic of severe iron-deficiency anemia. Iron (in the diet and oral supplements) are not not very well absorbed by the body...maybe 10 % at the most...so iron supplementation, even large doses may not have been enough to restore the body's level of needed iron. Therefore you were given intravenous (IV) for a rapid and lasting "restoration" of iron/ferritin AND red blood cells (RBCs) to offset and prevent perhaps dangerous complications of chronic low levels of those constituents.
Below you will find 2 links to relate more info of your condition.

http://www.jctonic.com/include/minerals/iron.htm

[http://www.ucdmc.ucdavis.edu/ucdhs/health/a-z/57Anemia/doc57full.html


PS: I'm glad you are in relatively "good hands" with your doctors. Once I had a "snickering" nurse's aide talk to me like I was a "joke" while taking my temp and pulse prior to going into the doctor's office. I felt like slapping the thermometer out of her hands and telling her "get away from me, you freak!!".....I almost really did:rolleyes: ...took a lot of restraint on my part not to.

Take care.:)

Dana

[Dana Gold]

PS: The link you provided in your previous post was very good, so I copied the link's url here for easier access (just click on) for others:

http://www.aafp.org/afp/20011115/1717.html

Bye!! :) :D :cool:

Dana

[Sunshine1]

I always like to know the how,why, and when of things.

How did I get to the point of having a pint of blood or iron being funneled into my arm ? I don't just blindly follow like the the lady Endo ten years ago wanted me to without investigating the reasons behind it. I couldn't just take the iron supplements without knowing what was causing the reasons for the loss of hemoglobin. I understand that some things have no explaination but you have to at least make and attempt of discovery. I don't need another pill and I don't need another condition. Besides those iron pills are way to harsh on the stomach.

It's amazing how many nurses are blase about anemia and unfortunately I took the lead from them and that's no excuse for putting my health in danger. "Oh, you don't eat enough foods with iron" one said. "My sister has thalasanemia (sp ? ) she always has hemoglobin as low as yours, we did you a favor by giving you the IV iron" said one ER nurse. "You don't belong here and how long do you think that you will be getting these IV iron treatments" from a nurse in the out- patient treatment part of the hospital (my hemoglobin was 5 at the time and I WAS directed by my PCP to be there). That nurse made me so frustrated that I burst into tears. Prior to that I told another nurse at the same out - patient part of the hospital about CAH and how when I was born with external ambiguous genital with a urogenital track. Her response was " Nothing bothers me but ambiguous genitals look weird." She was nice enough to say that the clitorectomy was "brutal" but she also said that, "Someone like me couldn't be left with what I was born with" and the idea of that caused her to laugh as she walked out of the room and passed me on to another nurse. The acumulation of all this made it easy for me to kid myself that I felt fine regardless of what the hemoglobin was and solved nothing except put me back in the hospital again but this time another nurse told me that I was "playing with fire" by not having the anemia managed.

As much as I like going to the Hematologist office for my iron, I'd much rather be driving by on my way to the beach. I have a feeling that he is waiting until the hemoglobin gets up to normal (12) before he discusses my options of why this happened and when I may stop completely with the iron or this is going to be something that is going to be monthly for a lifetime. I'm going to bring up the question of the bone marrow but mostly it isn't a card that he wanted to play yet because getting the hemoglobin up so that I wasn't a "walking dead person" was his first priority.

I enjoyed all the posts.

Aimee