PDA

View Full Version : A Desperate cry for help


GottaBeMe
04-01-07, 04:01 AM
Hello,

I am a longtime on again, off again visitor to this site. I have 17hydroxy CAH, and a few other medical problems (chemical diabetic, etc).

At the beginning of last year, I was diagnosed with Asperger's syndrome, as well as anorexia. During that timeframe, I simply stopped eating.. I had managed to get my weight down (with a combination of a 900 calorie diet and tons of exercise) down 219lbs. Unfortunately, the combination of life, the diet, everything, I ended up in the hospital with an emotional breakdown/suicide attempt. Part of the treatment regimen I undertook was to increase my caloric intake, and not weighing myself...

Fast forward a year.. In that time, I have maintained a fairly consistent 1200 calorie diet (overeating as I call it). My last endrochonologist appointment showed that my weight is 300lbs. My endrochonologist suggested that I was overeating, and I agreed.. (to me, 1200 calories is overeating). Doctor suggested that I am slipping into binge eating.. I should cut back, don't eat so much comfort foods, and exercise more.

Anyway, a recent therepist trip informed me that I am in fact, NOT overeating, and I would have to maintain a 4000 calorie a day diet to weigh what I currently weigh. My therepist instructed me to maintain a diet log, with what I eat and my weight throughout the day. I did this for 2 weeks.. My intake was consistantly around 950-1200 calories (any lower and I get fainting spells). I faxed over the documents to my doctor, who then immediately instructed me to eat more. She also warned me that she thinks I am anorexic again. So.. at her request, I began eating more.. (around 1400 calories). Of course, my weight shot up almost 15 lbs within days..

I have been trying to call and call. I never get any return call. She tells me thru her nurse, that I need to see the therepist and eat more.. She is unconcerned with my current weight, and the increases.

At this point.. from yesterday 11am, to a few minutes ago, my weight has increased by 8lbs. Yesterday, I ate 2 turkey burgers, brown dry pasta, eggs, and turkey bacon. I also had vegetarian lasagna. Normally I wouldn't eat so much, but I was within my calorie intake for the day. My normal intake for a given weekday is: 1/3 cup dry slimfast optima + 1/3 cup dry milk + water, lean cuisine, and 2 turkey burgers with wheat pasta. (I have very little variety in what I eat).

I am afraid for my life. I have extreme difficulty breathing, moving and everything. I am to the point that I can no longer exercise even. I just saw a new endo and she is very frightened about my condition. She ordered round of tests but will not have results until 6-8 weeks. Current doctor is NOT helping one bit.. Anybody have any thoughts as to what I can do? Today being sunday, I am going to just not eat.. I can't do that during the week, as the headaches, and fainting, and mistakes I make interfere with my work.

Peter
04-01-07, 02:32 PM
Welcome to Bodies Like Ours. I am impressed that you managed to loose 219 lbs. You obviously know how to loose weight. If your weight is increasing, and you are keeping caloric intake constant, then I suspect that high salt intake is leading to excess water retention. From personal experience, I believe it can lead to frustrating short term weight gain. I would watch the salt intake, and also perhaps substitute green leafy vegetables for some of your pasta intake. I am diabetic, so I have almost eliminated alcohol and pasta from my diet. Good luck.

Peter

GottaBeMe
04-05-07, 02:39 PM
Welcome to Bodies Like Ours. I am impressed that you managed to loose 219 lbs. You obviously know how to loose weight. If your weight is increasing, and you are keeping caloric intake constant, then I suspect that high salt intake is leading to excess water retention. From personal experience, I believe it can lead to frustrating short term weight gain. I would watch the salt intake, and also perhaps substitute green leafy vegetables for some of your pasta intake. I am diabetic, so I have almost eliminated alcohol and pasta from my diet. Good luck.

Peter

Hi,

Thanks for your reply.

This is what I am consistantly experiencing. The medical profession keeps blaming diet, and exercise. Yes, I KNOW how to lose weight. I know that pasta adds to glucose levels, and I KNOW that salt intake contributes to weight gain. I only added pasta (limited amounts) due to a dietitian's recommendation that I was not getting enough carbohydrates. I don't comsume excess salt. I do not add additional salt. I do not drink. I do not do anything. Yet, I am now 7lbs heavier today than I was yesterday. If I could, I would simply stop eating, but experience shows that bad things happen as a result of that.

This whole thing is driving me over the edge. I am trying my best and failing.. I simply do not know what else to do.. I fear its causing me to have a breakdown.

Peter
04-05-07, 05:55 PM
Hi,

I find that weighing myself on a daily basis is sometimes counter-productive. I tend to get upset on days when I gain several pounds, even though I have consumed less than 2000 calories for the day. Knowing that one pound of body weight is about 3500 calories; I tend to get frustrated and stressed out. I have found that when I get emotional over this, that it is best to stay away from the scale for a few days. My weight tends to settle back down. It sounds like you are taking sensible steps to control your weight. As diabetes and CAH are stress sensitive, you might consider some stress reducing activities, such as listening to music you enjoy.

Peter

Clouds
04-07-07, 07:06 PM
I have 17hydroxy CAH, and a few other medical problems (chemical diabetic, etc).


We need to talk... Unfortunately for some reason I can't PM you as the PM option doesn't appear on the list - anyone got any idea how to make it work?

Kate

Clouds
04-07-07, 07:19 PM
OK, back to the point!

What I was going to say was, to gain 7lbs you would have to eat 24,000 calories more than you expend, and it's just not possible in one day, and probably pretty difficult in a week.

That leaves 2 possibilities I can think of, first being water retention and the like (I have this problem) or alternatively, dodgy weighing scales! So don't worry too much, if you can help it. Think about the weight of the food going in and the weight of the various things that come out including the carbon dioxide in your breath. You can't gain more weight than you eat in food.

I should add that the reason I'd like to talk with you is I'm fairly sure that 17h CAH is the cause of my problems too. I'm still waiting for the endo on that one as I'm on the NHS.

GottaBeMe
04-12-07, 10:53 PM
Hi,

Yes, it happens.. In fact, it happened again last night..

I would tend to agree with you about the scale, though I confirm weight gain on 2 other scales.

I know its not possible.. my internist doctor says its not.. He says I am not retaining water because my ankles aren't swollen.

Pretty much my breathing is worse.. but I am trying to manage

Kailana
04-18-07, 09:52 AM
well i really noticed that you stated that you dont really vary your diet much. I am deffinately not a nutritionist. But, i was wondering if maybe your body is trying its best to store more fat because your really not getting enough nutrition from what you are eating.

I'd think you might try adding fruits and vegetables. I believe Peter mentioned the green leafy vegetables allready. I was thinking that the carbs your getting from the wheat pasta may be the wrong kind of carbs for you.

As for fruits: All fruits in the Berry family are very healthy for diabetics. I beleive blue berry's are supposedly one of the healthies. I also would caution from just eaiting berry's. Im sure youd get sick of them after awhile. But fresh fruit do provide much healthier carbs then pasta.

as for the green leafy veges, i really don't eat enough of them to give any good advice, and i've kinda forgot what my dietician told me a few years ago. But add them in, they are suppose to be good for people too.

Nuts, like Walnuts are also suppose to be great too, As long as your not allergic.

I do know from experience that when i eat natural foods, i generally feel alot better. I still like a nice 8-10 ounce steak now and then, but i do eat alot better then i used to. Oh and im borderline diabetic, im ok as long as i eat well. Labs tend to say im in the normal range most of the time, and just a little high on a few things like triglicerides, and cholesterol. I am not as worried now, and i have lost some weight with not too much exercise. I am hoping to improve my exorcise regimen as the weather is alot nicer now. Winter i tend to add a few pounds with less activity, spring i start losing, summer and fall i am at my fittest, only to add the weight back in winter.

As i said im not perfect when it comes to nutrition or fitness. and i am carring around alotof extra weight right now that i really have wanted to lose for awhile.

lets see, have you tried Soy Milk? it may help some too. im only guessing though. Also Oatmeal for breakfast, suppose to help lower cholesterol. Try not to add too much brown sugar though. that will rune its benefits.

ok now i may be rambling, but there are some good guideline, books on diabetic meals at most librarys. You can probably research a few online that will help and add some variety to your diet, and you may enjoy as well.

best wishes

fraulein_Maria
04-26-07, 09:34 PM
pardon me, but i am unaware of a form of CAH called 17 hydroxy. i know that 17 hydroxy progesterone tends to be elevated in most forms of CAH, but they are named after the enzyme that is missing on the cortisol pathway.

the most common form of CAH (80-90%) is called 21-hydroxylase deficiency. the next most common is 11-beta hydroxylase deficiency (5-10%). both forms have elevated 17-hydroxy progesterone levels.

Mine is 3-beta hydroxysteroid deficiency which actually LOWERS my 17 hydroxy progesterone.

the other 2 forms i know of are LOCAH (late onset CAH) which is almost always 21-hydroxlase, and the rare Lipoid form (about which i admit much ignorance).

am i missing something?

Clouds
04-27-07, 01:14 AM
am i missing something?

Seems you might be -

http://www.emedicine.com/ped/topic1046.htm

http://en.wikipedia.org/wiki/Congenital_adrenal_hyperplasia_due_to_17_alpha-hydroxylase_deficiency

hope that helps.

fraulein_Maria
04-30-07, 01:05 PM
I think i remember someone posting a link that showed ALL the forms of CAH (think it was mellissa) including the really rare ones... i just thought it would be more likely that folks were mixing up the effects of CAH with a type of CAH. But, ya learn somethin new everyday. :)