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05/08/2012 09:23 PM

Recently Diagnosed

AbbyLyn
Posts: 8
New Member

Hi!

My name is Abigail and I got diagnosed with Adult Growth Hormone Deficiency 2 months ago. I have been sick for a long 2 years and very excited to get a diagnosis!! It is kind of weird to be diagnosed with an adult disease at the age of 17 without any childhood growth problems.

I started my shots May 7. They don't bother me but i want to start getting better soon!! If any of you have AGHD, how long until i will be able to feel better?

Excited that other people understand my constant struggle! Thats the worst part: no one understands when you appear fine. I hate making excuses for myself!

Thanks!

Abigail

Here were/are my symptoms:

lack of energy/complete exhaustion

unable to exercise (despite running 30 miles a week 2 years ago)

always cold

when stressed, sweating a lot

when i could exercise, i sweated a lot!

night sweats

unable to adapt to new temperatures

losing hair

increased weight

low blood sugars - especially during exercise

THIRSTY ALL THE TIME - i drink at least 80 oz. a day

constipation

nausea

headaches

muscle weakness

food cravings

dizziness

pale - unable to tan

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05/10/2012 07:16 PM
hypomama
hypomama  
Posts: 772
Member

Hello and welcome! I'm curious how they came up with your diagnosis. Growth hormone is from the pituitary, as I am sure that you know, and I haven't heard of it being the only hormone that hasn't worked except in kids (but I certainly don't know everything!) Many of your symptoms remind me of panhypopit. Please share with us your diagnosis process, labs, lab ranges etc. And hang in there - it can take several weeks for growth hormone to work.

05/10/2012 11:41 PM
AbbyLyn
Posts: 8
New Member

Thanks!

I have had these symptoms for a long time. I didn't know where to start so i went to a NaturoPath. I found out i had 2 bacterial infections and 3 different parasites. I took antibiotics for those. then about a month later i got 2 new infections as well as an eye infection. I also found out i have a gluten sensitivity. Then i went to a gastroenterologist because i had a lot of digestive issues. They did a colonoscopy, endoscopy, barium x-rays, you name it! Then after not finding anything I went to an OBGYN because i ended up having an ovarian cyst. After treatment for that I went to an internist because i continued to get worse. At this time I was running cross country and passed out in a race. So then i went to a lung doctor and someone who specialized in Vocal Chord Dysfunction. After lots of tests they found out i have VCD. However i still couldn't run. something was causing my vocal chords to close up. at this point i went to an adult endocrinologist. He thought it was either pituitary or adrenal. I had the Insulin Tolerance test done and mostly everything showed up normal except the growth hormone and i was a little low on cortisol. I don't have the lab results readily available right now. I had an MRI where i had a slight thickening on the stalk of the pituitary gland. They will check again in 6-9 months to see if it has changed.

Most people that have a growth hormone deficiency are kids. I guess Adult Growth Hormone Deficiency is pretty rare...? Its especially odd for me as i am 17 with no clear reason why i got it. My doctor thinks mine is autoimmune because i haven't had any head traumas or surgeries. nothing major stands out to why I have this. also my brother has an autoimmune disease.

Thanks!

Abby


05/11/2012 07:47 AM
kgo
kgo  
Posts: 603
Member

My daughter has all of your symptoms

hot/cold regulation is controlled by several things but could be Hypo-thyroid.

Excessive thirst could be Diabetes Insipidus (lack of Vassopresson from the Pituitary that controls your kidney function) with out her DDavp she could drink gallons of water (ICE water) everyday.

Exhaustion could be lack of cortisol (adrenal hormone) Adrenal Insufficiency.

Have you had a Stim test to check your adrenal glands function?

Have you had an MRI of your head to see if your pituitary gland is having problems?

My daughter had your symptoms except her issue was weight loss, not gain.

She was Dx'd with a brain tumor that took out her pituitary gland among other things.

Take a look at this to see all the functions of Pituitary Hormones

http://neurosurgery.ucla.edu/body.cfm?id=432

Pituitary Function & Hormones

Pituitary Tumor & Neuroendocrine Disorders

Function

The pituitary is a small, bean-shaped gland located below the brain in the skull base in an area called the pituitary fossa, or sella turcica. Weighing less than one gram, the pituitary gland is often called the "master gland" since it controls the secretion of hormones.

Hormones have a dramatic and broad range of effects on metabolism, growth and maturation, sexuality and reproduction, and other important bodily functions.

The pituitary gland produces several hormones:

Prolactin: stimulates breast milk production and controls menstrual periods

ACTH: signals the adrenal glands (situated atop the kidneys) to produce the steroid cortisol

Growth hormone (GH): signals special liver cells to produce somatomedin-C, which is critical for body growth during childhood

Thyroid stimulating hormone (TSH): signals the thyroid gland to produce thyroid hormone which is essential for the regulation of body metabolism

FSH and LH: regulate hormone production by the testes (testosterone) and ovaries (estrogen, progesterone)

ADH: stimulates the kidney concentrate the urine by taking up water back into the bloodstream

Structure

Structurally, the pituitary gland is divided into a larger frontal region (adenohypophysis) and a smaller posterior region (neurohypophysis).

The gland is connected to a region of the brain called the hypothalamus by the pituitary stalk. Directly above the pituitary gland and in front of the pituitary stalk are the crossing fibers of the optic nerves, called the optic chiasm.

On each side of the pituitary gland is the cavernous sinus. Through each cavernous sinus runs a carotid artery that carries blood to the brain, and important nerves that control eye movements.

Because of the close proximity of the pituitary gland to major intracranial nerves and blood vessels, as well as the vital hormonal control the pituitary gland provides, disorders of the pituitary can cause a wide spectrum of symptoms, both hormonal and neurological.

Disease

Pituitary disease may lead to overproduction of certain hormones. In other instances, pituitary tumors are non-functional, meaning they do not produce excessive hormones. As these tumors enlarge, however, pressure on the pituitary gland can decrease or even halt hormone production.

Diseases and disorders involving pituitary function include pituitary failure (hypopituitarism), pituitary adenomas (including acromegaly, Cushing's disease, Nelson's syndrome, prolactinoma, thyrotroph (TSH)-secreting adenomas, endocrine-inactive adenomas, recurrent adenomas, and pituitary apoplexy), meningioma, craniopharyngioma, Rathke's cleft cyst, chordoma, epidermoid tumor (cyst), and lymphocytic hypophysitis.

Pituitary Hormones

Listed below are the specific hormones produced by the pituitary. Hormone over production of deficiencies can cause a host of symptoms:

Thyroid Stimulating Hormone (TSH):

Stimulates the thyroid gland to release thyroid hormones.

Control basal metabolic rate and play an important role in growth and maturation.

Affect almost every organ in the body.

Growth Hormone (GH): Principal hormone that regulates growth.

Adrenocorticotropic Hormone (ACTH): Triggers the adrenal glands, which regulate stress response with the release of hormones such as cortisol and aldosterone.

Luteinizing Hormone (LH) and Follicle Stimulating Hormone (FSH): Control reproduction.

Prolactin (PRL): Stimulates secretion of breast milk.

Vasopressin, also called anti-diuretic hormone (ADH): Promotes water retention.


05/13/2012 01:38 AM
AbbyLyn
Posts: 8
New Member

Hi!

I had an MRI and it showed a 2mm thickening on the stalk of the pituitary gland. My doctor isn't super concerned about it but we will see if the thickening has changed in 6-9 months.

The growth hormone should cover most of my symptoms. hair loss...i'm not sure. I don't know if i've had a stim test... I have had countless blood draws to look at my adrenal and thyroid. Thyroid shows high antibodies which means it is likely to burn out soon. I am taking cortisol so i don't know if that helps adrenal or pituitary....they're all connected so it's hard to tell!!

I know this will be a constant struggle to figure out the correct hormone levels. Does your daughter have AGHD?

Abigail Smile

Post edited by: AbbyLyn, at: 05/13/2012 01:38 AM


05/14/2012 09:34 PM
pinkapple
pinkapple  
Posts: 1578
Senior Member

Hi

Yes, your symptoms so much like a panpit. Your case is interesting. I found a lot of autoimmune cases in hypothyroid (primary hypot) but seldom hear it in panpit.

How's your brother, if I may ask (or you can ignore it). Just wondering how at.immune can do to people.

Hugs.


05/14/2012 10:32 PM
AbbyLyn
Posts: 8
New Member

i don't even know what panpit it. My doctor said there isn't an actual name for an autoimmune disorder in the pituitary gland...im guessing there isn't enough information on it. Is pituitary disorders rare?? i can't find any statistics on it.

My brother has Type 1 Diabetes. He got diagnosed at age 8 and he is 13 now. Dealing with his health has been so much easier than mine!! there is so much research on it and very manageable. With me, sometimes i feel that i know more than the doctors! Very frustrating...

Thanks Smile


05/15/2012 12:56 AM
pinkapple
pinkapple  
Posts: 1578
Senior Member

Yes, we know more than the docs Tongue . We have no choice but to find our way out for a normal life....researching, reading, foruming. One of my endo have asked me to join any forum re this disease.

From my readings, this pit disease is classified as rare disease. Statistic? I can't find it too, idk the ratio. My endo said, "We are very happy that we found you. We haven't met any for so so many years" Dizzy .

At the doc's office, I met a woman, she was accompanying her son, your brother's age, he is diabetes type 1.

Nice meeting you here.


05/20/2012 11:01 AM
hypomama
hypomama  
Posts: 772
Member

AbbyLyn, I am a autoimmune panhypopit person, there is a name for it - it is called HYPOPHYSITIS. I was diagnosed with lupus at the age of 32 but had my first symptoms of it at age 17. I also had my first (probably) hypophysitis flare at the age of 23 or so but no one knew what it was - lot of weight loss, fatigue, nausea, GI work ups, etc. They also didn't have MRI scanners at the time and had just gotten CT scanners. Then it resolved for no known reason. Slowly over the years it came and went. Fatigue for no known reason when the lupus was well controlled. No one knew why, I was depressed, stressed, diagnosed as such and truly was. When my primary care doc found me asleep on the exam table she knew I hadn't been exaggerating about needing to take naps in my car in the corner of parking lots before I could drive home. That was when she really got the ball rolling. Deb, on the adrenal web site, described a "dying" pituitary to a dying star. It has spurts of light and it sputters and then goes dim, sputters again, etc. until it finally has its last gasp.

They are starting to find out more and more about hypophysitis in autoimmune people. I believe that Johns Hopkins is leading the charge. You may be able to find some info out on the hypopituitary web site.

As pinky said above - education is the key. You need to find everything out about this. To give your the diagnosis of adult growth hormone deficiency is a disservice to you. You need to find out about adrenal insufficiency if you are on HC - that is the more critical deficiency. Do you have a medical alert bracelet or necklace? An ID card in your wallet? An emergency injection kit at home? Also, how is your thyroid? Keep a close eye on that as well. All these things are key to stability and health.

Glad to have you hear!

Post edited by: hypomama, at: 05/20/2012 11:04 AM


05/20/2012 02:54 PM
AbbyLyn
Posts: 8
New Member

Hypomama,

thanks for replying! I haven't really thought about the adrenal glands since being diagnosed with AGHD. I thought that being treated for AGHD would stop all my symptoms. The cortisol is only a little deficient but I'm still taking medication for it. I researched a lot when we didn't know what was wrong because no one believed me or my mom. they thought we were crazy!!

I'm not sure how to get more educated. I have never seen or heard of a case similar to mine. I'm confused on how being diagnosed with AGHD is a disservice...? do you mean that you think there is more going on? I would love to hear what you think!! you have been dealing with this for a lot longer than me.

My thyroid shows high antibodies which supposedly means that my body is attacking it and will eventually burn out. We had thought it was thyroid from the beginning, before we even knew what the pituitary and adrenal glands are.

I don't think there is a side effect or complication if i miss a dosage of my shot or meds for cortisol. I have been wondering about getting a medical bracelet. i would like one just incase anything happens but I'm not sure what it would help with...

Thanks for taking the time to respond Smile

Abigail

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