Hello,
I am a woman with Inattentive type ADD and also part of a family with a "rare" hormone disorder. We have a serious defect in the production of Dhea which endocrine reseachers find interesting since we are able to reproduce normally.

Every member of the family with this hormone disorder also has ADD. We feel, as does the neurosteroid researcher studying us, that the two disorders are related in a cause and effect manner- that the Dhea deficiency is causing the ADD symptoms. (Dhea is made by the brain in large quantities.)

We are wondering if the disorder we have is all that rare or just rarely identified since doctors, including endocrinologists, seldom test for Dhea and even if they do, often misinterpert the results due to laboratory reference ranges that are not age specific.

I would appreciate your taking a moment to see if you have any of symptoms listed of Dhea deficiency and then respond to me indicating which symptoms you have. Many of these physical symptoms may not develop until adulthood even though the ADD expresses in childhood.

If there are other women out there with the same disorder we have, they need to know, as do the researchers working with us.

Appreciate your help!

K8t1


Symptoms of Congenital Dhea Deficiency

Constant fatigue

Low blood pressure

Autoimmune disease - Hypothyroidism, Fibromyalgia, Lupus, Arthitis, Diabetes, Scleroderma, etc.

Low Libido

Drive to eat high sugar foods

Feeling queasy with normal physical movement like loading the dryer

Frequently feeling faint while standing in one place for an extended period or upon standing up

Muscle weakness - may be experienced as inability to perform or sustain physical tasks

Cold and/or heat intolerance - this means you seem to be much more uncomfortable than others in cold and/or heat

Unusual fat distribution - much more fat on the hips, thighs and buttocks than on the upper half of the body (two or more sizes difference between pants and blouse size)

Overweight but with slender face, neck and hands

Dislike of physical activity - just about any physical activity

This also sound like the link between lack of Omega-3 and people who have AD/HD. Have you read the book The LCP Solution?

I'm shocked at how closely I match this!

Constant fatigue Yes
Low blood pressure On the low side of normal
Fibromyalgia Yes!
Low Libido Hard to tell since I'm on prozac, but I would say on the low side of normal
Drive to eat high sugar foods Yes! the majority of my diet is sugar
Feeling queasy with normal physical movement like loading the dryer Yes!
Frequently feeling faint while standing in one place for an extended period or upon standing up Yes!
Muscle weakness - may be experienced as inability to perform or sustain physical tasks Yes! I even have nightmares that I can't move my legs.
Cold and/or heat intolerance - this means you seem to be much more uncomfortable than others in cold and/or heat Yes! Yes! Yes!
Unusual fat distribution - much more fat on the hips, thighs and buttocks than on the upper half of the body (two or more sizes difference between pants and blouse size) Yes! I'm thin, but my upper half is a size 4 and my lower half is a size 6-8
Overweight but with slender face, neck and hands No
Dislike of physical activity - just about any physical activity Yes. For one thing, I break into hives if I get overheated.
k8t1,
How can I get diagnosed for this? Is there a treatment?
thanks!

Wow, I too have a lot of these symptoms.

Has research shown any benefit from taking Dhea supplements?

Symptoms of Congenital Dhea Deficiency

Constant fatigue yes

Low blood pressure No

Autoimmune disease - Hypothyroidism, Fibromyalgia, Lupus, Arthitis, Diabetes, Scleroderma, etc. No

Low Libido yes

Drive to eat high sugar foodsyes

Feeling queasy with normal physical movement like loading the dryer not all the time but yes

Frequently feeling faint while standing in one place for an extended period or upon standing up OMG yes !

Muscle weakness - may be experienced as inability to perform or sustain physical tasks again, not all the time but yes

Cold and/or heat intolerance - this means you seem to be much more uncomfortable than others in cold and/or heat yes

Unusual fat distribution - much more fat on the hips, thighs and buttocks than on the upper half of the body (two or more sizes difference between pants and blouse size) yes

Overweight but with slender face, neck and hands more than others I see my size, but not very slim

Dislike of physical activity - just about any physical activity yes

Wow I just thought this was all about age and my being over weight... Some of these are new to me, I didn't have them before I was 35-36.

Wow,
I'm 29 and some of these symptoms Ive never had but Im starting to get for some strange reason.

I was very athletic in my teens and early 20s but now its like I have no coordination and at times I feel like fainting. I cannot believe how weak my muscles are now. Im always tired and Im always colder than those around me.

Ive always had low blood pressure, I have a VERY low libido. Though Im not overweight, I do have a slender face, neck, and hands.

Symptoms of Congenital Dhea Deficiency

Constant fatigue ALL.THE.TIME

Low blood pressure Not Really

Autoimmune disease - Hypothyroidism, Fibromyalgia, Lupus, Arthitis, Diabetes, Scleroderma, etc. Not that I know of

Low Libido Unfortunately

Drive to eat high sugar foods Yes! I feel sick if I don't have enough sugar - Doc says it's Hypoglycemia

Feeling queasy with normal physical movement like loading the dryer A bit

Frequently feeling faint while standing in one place for an extended period or upon standing up VERY

Muscle weakness - may be experienced as inability to perform or sustain physical tasks

Cold and/or heat intolerance - this means you seem to be much more uncomfortable than others in cold and/or heat Yes! I *hate* heat!

Unusual fat distribution - much more fat on the hips, thighs and buttocks than on the upper half of the body (two or more sizes difference between pants and blouse size) Not really, besides my massive boobs :p

Overweight but with slender face, neck and hands Kind of

Dislike of physical activity - just about any physical activity YES!!


Freaky. I've gotta ask my doc about it.

Symptoms of Congenital Dhea Deficiency

Constant fatigue Yes -- extreme fatigue

Low blood pressure No

Autoimmune disease - Hypothyroidism, Fibromyalgia, Lupus, Arthitis, Diabetes, Scleroderma, etc. Yes -- Type 1 (juvenile) Diabetes. Also, mild arthritis starting in my late 20's

Low Libido Yes & No -- I'm not driven to find a man, but when I'm in a relationship, my libido seems fine. But it's been 2 - 3 years since my last relationship, and it was 6 - 7 years prior to that relationship.

Drive to eat high sugar foods Yes

Feeling queasy with normal physical movement like loading the dryer No

Frequently feeling faint while standing in one place for an extended period or upon standing up Yes

Muscle weakness - may be experienced as inability to perform or sustain physical tasks Maybe -- not sure what this means exactly. Could you give a few examples. When I was moving, I took more breaks than my family members who were helping me to move, and I wanted to take even more breaks than I actually took ...but maybe this was due to ADD? Seems like I wasn't driven to finish lugging all the boxes & furniture in.

Cold and/or heat intolerance - this means you seem to be much more uncomfortable than others in cold and/or heat Yes

Unusual fat distribution - much more fat on the hips, thighs and buttocks than on the upper half of the body (two or more sizes difference between pants and blouse size) No

Overweight but with slender face, neck and hands No

Dislike of physical activity - just about any physical activity Yes

A few other oddities about myself...

I think I have a low body temperature. Whenever I take my temperature, it is almost always 97 point something (and this is my temp when I feel sick/feverish. I've never gotten around to check my temp when I'm healthy. In the past 10 years, I can only remember having a fever over 100 degrees once --but I've been sick plenty.

After eating, I feel cold. Most people don't notice a change in their body temp, or they feel hot. I frequently feel cold after eating.

I prop my head up with my hand/support my head when seated. Could this be muscle fatigue/weakness? In formal work meetings, I need to concentrate really hard to sit up straight and hold my head up without my hands.

Iam new to this forum. I was diagnosed with ADD 1 year ago and was prescribed adderall. I recently went to the doc for a physical and blood tests revealed my DHEA level at 85 which is at the low end of normal limits. She told me that my age (39) my levels should be over 200! She gave me the name of something to try....Bioadrenal.....get it at GNC or somewhere similar. I haven't gotten it yet. She also put me on thyroid medication. My lab tests did not show to be low thyroid, but she said that she thought I was having a low conversion of T4 to T3. Anyone else ever heard this? This was my first experience at going to a holistic physician, thats why I am questioning a little!

Symptoms of Congenital Dhea Deficiency

Constant fatigue YES

Low blood pressure DID UNTIL FIRST PREGNANCY, NOW BORDERLINE HI

Autoimmune disease - Hypothyroidism, Fibromyalgia, Lupus, Arthitis, Diabetes, Scleroderma, etc. FIBROMYALGIA, GESTATIONAL DIABETES, STRONG FAMILY HX OF DM

Low Libido YES

Drive to eat high sugar foods TAKE SPELLS OF IT

Feeling queasy with normal physical movement like loading the dryer FREQUENTLY

Frequently feeling faint while standing in one place for an extended period or upon standing up YES

Muscle weakness - may be experienced as inability to perform or sustain physical tasks YES

Cold and/or heat intolerance - this means you seem to be much more uncomfortable than others in cold and/or heat YES...VERY HOT NATURED ... OM IS VERY COLD NATURED...

Unusual fat distribution - much more fat on the hips, thighs and buttocks than on the upper half of the body (two or more sizes difference between pants and blouse size) NO

Overweight but with slender face, neck and hands SLENDER HANDS

Dislike of physical activity - just about any physical activity YES YES YES

Iam new to this forum. I was diagnosed with ADD 1 year ago and was prescribed adderall. I recently went to the doc for a physical and blood tests revealed my DHEA level at 85 which is at the low end of normal limits. She told me that my age (39) my levels should be over 200! She gave me the name of something to try....Bioadrenal.....get it at GNC or somewhere similar. I haven't gotten it yet. She also put me on thyroid medication. My lab tests did not show to be low thyroid, but she said that she thought I was having a low conversion of T4 to T3. Anyone else ever heard this? This was my first experience at going to a holistic physician, thats why I am questioning a little!
I have had my thyroid and iron levels checked repeatedly, but I test WNL (within normal limits). Did you have to ask to have your DHEA level checked or is it included in the standard blood tests done during a physical?

Constant fatigue........Always no matter how muc sleep I get.
Low blood pressure.......90/60 and I am 43
Drive to eat high sugar foods.........I have to have sugar daily. My weakest is starbucks sugary coffee....frapps. I have one daily. I crave chocolate, cookies...all of it.
Low Libido......Only time I want sex is close to my period. Otherwise I coluld go without.
Feeling queasy with normal physical movement like loading the dryer....Negative
Frequently feeling faint while standing in one place for an extended period or upon standing up.....Especially when standing. But lately while I stand awhile I get woooosy.
Unusual fat distribution - much more fat on the hips, thighs and buttocks than on the upper half of the body (two or more sizes difference between pants and blouse size).........My hips/butt / and thighs are heavest.
Cold and/or heat intolerance - this means you seem to be much more uncomfortable than others in cold and/or heat......Im always cold.
Autoimmune disease - Hypothyroidism, Fibromyalgia, Lupus, Arthitis, Diabetes, Scleroderma, etc.......Im hypothyroid.
Dislike of physical activity - just about any physical activity.........Im not too active, but I dont mind working out. Just getting there is a drag.



Livn

Symptoms of Congenital Dhea Deficiency

Constant fatigue <CONSISTENTLY< font>consistently
Low blood pressure consistently<CONSISTENTLY< font>

Autoimmune disease - Hypothyroidism, Fibromyalgia, Lupus, Arthitis, Diabetes, Scleroderma, etc. NO. checked for the thyroid. no problem there..<NONE. font <>

Low Libido NOOOOOO i felt like a rabbit **** in my early twenties (i'm monogamous) after baby a normal dip, and now i'm heading up to a peak that will only keep climbing into my forties! <NOOOOO. font least< at week a times few again. good pretty i?m now and more, some away went it deppressed was i then normal, totally baby, my after dip through monogamous) (i?m ****. rabbit like felt younger when>

Drive to eat high sugar foods -- pound cake phase, cookie phase, ice cream phase, twinkie phase, now: donut phase. i don't eat a lot of sweets now b/c of my drugs. hence my weightloss i'm sure (that and my lack of vodka) i don't allow myself to eat donuts. so i just dream about them.<UM...THERE font the at a now and was i my through them.< about dream just all. often donuts eat don?t sugar. restrict but loss. weight hence now. month once maybe donut. one only can god. thank cravings limit drugs sweets. LOVE love phase- donut years, teenage phase cookie childhood, cake pound twenties, throughout twinkie>

Feeling queasy with normal physical movement like loading the dryer < yes. i gag all the time..its worse with adderall + wellbutrin..i get queasy easily. i've always felt that i have a weak stomach, or a hyper sensitive system

Frequently feeling faint while standing in one place for an extended period or upon standing up < i have felt faint while getting up from a sitting position and whoozy

Muscle weakness - may be experienced as inability to perform or sustain physical tasks weakling , i am the anti hero "muscleless woman"<IF font would ever i?ve i?m now and was i (i?m younger when often but usually..< 140-50 am 118lbs. 8? 5? as fragile looked strong. active extremely now) 29 weak!! damn so why wondered ?rubbermuscle?, dubbed be comics, in hero anti an there>

Cold and/or heat intolerance - this means you seem to be much more uncomfortable than others in cold and/or heat << i'm usually colder than most ppl. the only time this wasn't true was during my pregnancy. i live in texas and when its in the middle of the summer i'm wearing jeans and a sweater, ppl freak out on me b/c they think i look so hot, but i work in an office with major A/C and my car has A/C that is too frigid! so i have sweaters and jackets in my car ALWAYS for restaurants, movies, stores, and i have a blanket at work. yes. a blanket. i can't even stand walking by the fridge section in the grocery store..the open cases with cheese and meats etc? hate that!

Unusual fat distribution - much more fat on the hips, thighs and buttocks than on the upper half of the body (two or more sizes difference between pants and blouse size) --- large on bottom , smaller on top<I'M top font would i?ve the < a and was i my just weight an there hourglass. perfect or apple vs. shape? ?pear called that thought always size. body lower upper btwn difference is say then) since 40lbs. lost christmas last avatar..that on pic than (more slender, face relatively are arms nowadays. medium bottom, 10 to 8 anywhere>

Overweight but with slender face, neck and hands my face gets fatty too. check out the avatar. (old from last year) <WHEN font the was i my so face anymore.< much not avatar. see fat. overweight more>

Dislike of physical activity - just about any physical activity ---yes. i was very active when i was younger. now i feel like an old lady. if i could feel 'well' and not do any serious physical activity then i'd be a happy girl. but part of me really like the <I>idea </I>of physical activity..its like i used to have legs and now i just have a couch or a chair, so i remember what it was like flying up stairs and running. <USED do font i?m now and i about only love that to quick!< something need LOL 29. though even physically 40 probably puff. huff stairs, up fly used it. hate><!-- / message -->

WOW! crazy! how does one go about finding about supplementation? and these symptoms have been worse since I started on strattera. very interesting

I take DHEA everyday, and I also have every symptom listed. The DHEA deficiency was addressed with my Lupus and I began taking the supplements 2 years ago.

It is wierd . I have this ablitily to stay in cold weather.. can hack it.. like it but I can sometimes get a chil in my body that makes me tremble bad.. nothing to do with the area due to it can happen in warm rooms too but can not get rid of it unless I take a very long pipping hot shower .. the only other thing that has taken it away was body heat. I just don't like to rely on that.. donno just me.

Very interesting! I won't bore you with all the details, but I've got 8 of the 10 symptoms listed.

My doctors always thought it was so curious that my blood pressure was constantly on the low side, yet I'm overweight and have high cholesterol and diabetes.

I'll have to see what my DHEA levels are when I go for bloodwork later this spring and enquire about taking DHEA supplements.

BS"D

I have 9 of the 10 for sure. I would love to know more about this!

The only one I don't have is the Autoimmune disease...at least as far as I know.

Keep us informed!

Yocheved, as far as I know, allergic reactions are essentially a form of autoimmune disease...and as we all know the link between allergies and ADD is well established. Who else thinks that allergies count?