DS causing major hormone production/pituitary/hypothalamus problems?
I'm not producing FSH, LH, estrogen, or progesterone in any appreciable amounts. As I've put it, I'm practically going through menopause. I'm exhausted. Sometimes I feel like my muscles don't want to work anymore. I get hot flashes. I wake up in the middle of the night dripping sweat. I have no period. I'm only 22. 2 years post-DS. All in all, it's really not THAT bad. I'm happy, busy, life's good. But some days, I feel run down. I just don't feel right. I want more energy. I want to actually feel like a female again...
But I've seen. an endocrinologist twice now, and she strongly feels that this is NOT pituitary/hypothalamus related. Basically, she blames my DS. She thinks that I have completely depleted my vitamin stores and that is what has exacerbated my problem. One year ago, my LH and FSH were running normal...though my estrogen was low. This year, they are tanked. She says based on my history, She thinks I had some vitamin stores from before surgery that have now been all used up.
Being that this is technically not endo-related, I feel like she's wiped herself clean of me, referring me to a nutritionist. I have my doubts about what a nutritionist can do for me, but I'm going to go see what brilliant things she has to say tomorrow morning. But, based on what my endo said, it's going to take months to correct this problem nutritionally. Four to five more months of feeling like crap and MAYBE I'll feel better? I started bawling in her office and cried all the way home. I just want to feel normal.
The thing I need help with/brainstorming is -- WHY IS THIS NOT SHOWING UP ON MY LABS? What on God's green earth would I be depleted in that I'm not checking for? Nothing is popping out at me. I would assume that if my body has such depletion of minerals despite normal supplementation...there would have to be some way to tell from my blood. Is that not right? I'm not a genius, I have no idea. But I don't want to waste 4 to 5 months listening to some crackpot nutritionist for it to all have been a waste of time.
So far, I've been to: My PCP, my surgeon, my gynecologist, endocrinologist, and now I'm going to be seeing a nutritionist.
I'm really really concerned. No estrogen in my body = poor calcium absorption. And that is something that's already showing up on my labs (high PTH...)
Is this a result of not having enough fat be absorbed do you think? Where do I go? What do I do? What do I test for? I know I need to be proactive, but I'm confused. I'd assume if I'm so malnourished in some particular nutrient, it would have been tested for. I would have seen it. Isn't that what labs are for? I have a good relationship with my PCP and I know he'll run whatever I ask him to run, but as far as interpreting it...he admits that he really has no clue. I just don't know what to ask for and how to code it so my insurace will pay.
I did make the endo give me orders for an MRI just in case. Is this as simple as trying a new endo?
But I've seen. an endocrinologist twice now, and she strongly feels that this is NOT pituitary/hypothalamus related. Basically, she blames my DS. She thinks that I have completely depleted my vitamin stores and that is what has exacerbated my problem. One year ago, my LH and FSH were running normal...though my estrogen was low. This year, they are tanked. She says based on my history, She thinks I had some vitamin stores from before surgery that have now been all used up.
Being that this is technically not endo-related, I feel like she's wiped herself clean of me, referring me to a nutritionist. I have my doubts about what a nutritionist can do for me, but I'm going to go see what brilliant things she has to say tomorrow morning. But, based on what my endo said, it's going to take months to correct this problem nutritionally. Four to five more months of feeling like crap and MAYBE I'll feel better? I started bawling in her office and cried all the way home. I just want to feel normal.
The thing I need help with/brainstorming is -- WHY IS THIS NOT SHOWING UP ON MY LABS? What on God's green earth would I be depleted in that I'm not checking for? Nothing is popping out at me. I would assume that if my body has such depletion of minerals despite normal supplementation...there would have to be some way to tell from my blood. Is that not right? I'm not a genius, I have no idea. But I don't want to waste 4 to 5 months listening to some crackpot nutritionist for it to all have been a waste of time.
So far, I've been to: My PCP, my surgeon, my gynecologist, endocrinologist, and now I'm going to be seeing a nutritionist.
I'm really really concerned. No estrogen in my body = poor calcium absorption. And that is something that's already showing up on my labs (high PTH...)
Is this a result of not having enough fat be absorbed do you think? Where do I go? What do I do? What do I test for? I know I need to be proactive, but I'm confused. I'd assume if I'm so malnourished in some particular nutrient, it would have been tested for. I would have seen it. Isn't that what labs are for? I have a good relationship with my PCP and I know he'll run whatever I ask him to run, but as far as interpreting it...he admits that he really has no clue. I just don't know what to ask for and how to code it so my insurace will pay.
I did make the endo give me orders for an MRI just in case. Is this as simple as trying a new endo?
5'9.5" | HW: 368 | SW: 353 | CW: 155 +/- 5 lbs | Angel to 
When I go on birth control pills...my period starts...and rarely stops.
Just bleed and bleed and bleed. And it doesn't help any of my symptoms. Just ****** me off cause I'm bleeding 2-3 weeks out of every month.
But, basically, FSH and LH are what tell your body to MAKE the estrogen/progesterone. So, I could keep putting the estrogen and progesterone in, but it's not going to do my any good until I find out why my body is not sending signals to have them made on their own.
Just bleed and bleed and bleed. And it doesn't help any of my symptoms. Just ****** me off cause I'm bleeding 2-3 weeks out of every month.
But, basically, FSH and LH are what tell your body to MAKE the estrogen/progesterone. So, I could keep putting the estrogen and progesterone in, but it's not going to do my any good until I find out why my body is not sending signals to have them made on their own.
So sorry you're going through this. I have PCOS and have been through a couple of Endocrinologists. I finally switched to a Reproductive Endocrinologist, and she was much more helpful.
If I were in your shoes, I think I would skip the NUT and find a new endo. Like Bronwen said, for a second opinion at least. It sounds like the current one has made up her mind that the DS is to blame, even though your labs don't seem to bear that out.
If I were in your shoes, I think I would skip the NUT and find a new endo. Like Bronwen said, for a second opinion at least. It sounds like the current one has made up her mind that the DS is to blame, even though your labs don't seem to bear that out.
Reproductive endocrinologist is golden! The fine hormonal balance between the thyroid, parathyroid, pituatary, liver, pancreas and brain sites is amazing but very delicate. You'll feel a zillion times better once this is all straightened out...I'd been through the gamut in my 20's with irregular periods, hair loss, faitgue, inability to focus, bizarre weight gain, body pain, joint pain, etc...all was blamed on my obesity when my obesity was just another symptom!!! Please insist on a referral!
Amy Farrah Fowler
on 10/1/09 4:11 am
on 10/1/09 4:11 am
Hell to the yes on the reproductive endo!
I don't think the other endo had a clue, and just wanted to pass you off to someone else, but it does seem that SOMETHING should be showing up in your labs if a vitamin deficiency was the case.
A second (or even third) opinion is definitely needed here, and a reproductive endo would be the best choice.
I don't think the other endo had a clue, and just wanted to pass you off to someone else, but it does seem that SOMETHING should be showing up in your labs if a vitamin deficiency was the case.
A second (or even third) opinion is definitely needed here, and a reproductive endo would be the best choice.
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