Hypopituitarism Support Group

Hi

First of all, I am sorry that I speak so bad English but I hope you understand me.

I do not have acromegaly, but I have very high IGF-1 and hypopituitarism and Addison after an accident on the bike as a 12 year old, I am today 20 years. I have no medical treatment for my high IGF-1 because doctors do not know why I have it I have some questions which I very much hope some can answer me!

1. What are the symptoms of high IGF-1?

2. Provides high IGF-1 weight gain and obesity?

3. What can be wrong when I have high IGF-1, but I do not have acromegaly???

Hope someone can help me!!

Best regards

Nanna

Hi Nanna,

I dont know much about tooo much IGF1... mine is too low.

But, have you had an MRI of your pituitary gland recently??

Hi Brenda

Thank you so much for your answer. Its about 2-3 years since my last MRI of my Pituitary and my doctor dont will take a new MRI because she not take it seriously. She think nothing is wrong But i have so many symptoms and i dont feel well.

please list your symptoms for us. Your English is just fine!

My symptoms is:

Headache

High prolactin (that not with treatment with Parlodel can be normal)

Weight gain and obesity (but i eat dont much)

Sweats And have hot flushes

Acne and oily skin

My jewelry for my fingers are too small

Very strong hair growth as a man

Muscle and joint pain

Cramps

Nausea

Visual disturbances

Insomnia

You need an MRI - these are symptoms of too much hormones from the pituitary. Many of them are signs of high cortisol. High prolactin, High IGF1, signs of high cortisol all mean you need an MRI. If your doctor won't order it, can you get another doctor?

I have yet to answer Nanna's post about that on the Addisons group.

http://www.mdjunction.com/forums/addison-disease- discussions/general-support/3053796-symptoms#3053985

She is on 30mg HC/day, I would suspect that is too much. (inducing cushings) I am also thinking prolactoma after her injury. She also list Osteoporosis. The GH deficiency might be the appearance of obesity cause. (not fat, air)

Pls have a look, at it Becky and tell us what you think.

Nanna, what is your height and weight?

Bob

Post edited by: bob3bob3, at: 09/15/2011 01:58 PM

Bob and Nana - I did some quick research. There may be too high of a HC dose but this is still screaming to get more lab work done and an MRI. The acromegaly may not develop right away. Joint thickening (rings tight) and sweating are on the Mayo web site as symptoms of high growth hormone. Here is also a cut and paste from another site :

Other pituitary tumors: Other tumors may block the flow of dopamine from the brain, which normally inhibits its prolactin-secreting cells. Such so-called "mixed" tumors arise in or near the pituitary, and include those that release excessive growth hormone (acromegaly) or stimulate cortisol production (Cushing's syndrome). These can also cause the pituitary to secrete more prolactin.

From Mayo:Effects of Systemic GH Excess

- coarse facial features

- headache

- fatigue

- thick skin

- acanthosis nigricans

- joint thickening

- carpal tunnel syndrome

- cardiovascular disease (most commonly hypertension)

- excessive sweating

- unusual increase in hat, ring, or shoe size

- gaps between teeth

- diabetes mellitus

- sleep apnea

The weight gain may be from too much cortisol or low thyroid. The facial hair sounds like too much cortisol. The oily skin and acne - too much cortisol.

Of great concern is the visual disturbance and headaches - that alone with a history of a prolactinoma says - MRI - NOW.

Bob, if need be, will you cut/paste and google translate? I don't know how to do that.

Post edited by: hypomama, at: 09/15/2011 06:44 PM

Hypomama and Bob: Thank you so much for your answer! Its help me so much

I leave unfortunalety in a small country, so we just have 2 doctors with specializing in the pituitary and the other doctors leave so long time away that i not can visit him, so i cant Get to another doctor

I may just try to say to my doctor that she should take a new MRI of my pituitary, but its very difficult!

i have answered in my other topics in addison group about symptoms, but its easier with 1 topics so please just answer me in this topisc. I quote my self:

Hi Bob!

Thank you so much for your answer both on this group and also hypopituarism group. My doctor also believed that many of my symptoms caused by too much hydrocortisone against my Addison. I was a few weeks ago Hospitalized and they wanted me down to 25 mg hydrocortisone. First I went down to 27.5 mg, it do that I got even more nausea, dizziness, fatigue, and I could not do so many things in my life because of fatigue and lack of energy. After some days I was reduced to 25 mg and then I got a serious Addison-crisis, so now I get again 30 mg. So i dont think my symptoms is caused too much hydrocortisone..

What is a HbA1c tests? ( My doctor have take 2 ACTH-tests and i have non function)

My body temperature is about 36-37*c. I feel often that i has fever but i have not! My clothes are often wet because I sweat so especially at night and other sometimes i freeze so much..

My high is 175 cm and my weight is 81 kg.

Its very scary i NOT eat more and wrong with cakes and pizza and such, but my weight increases by about 5 kg every month!

And i max eat 1500 kcal and sometimes just 800-1000 kcal.

Thank you so much for your answer and translate to danish.

Hi Nanna

Sorry this is kind of long and confusing.

Its important to know that although most of us on this group (and the AI/Addisons one) have experience in temporary high levels of cortisol (a Cushings state) very few of us have had long term exposure to it. This means some of the information you get may be of limited accuracy. It's also true that there are a lot of different root causes for Addisonian states so you have to be careful applying symptoms and treatment methods in a blanket fashion.

My exposure has always been mainly "low cortisol" of a secondary nature. I am also hypothyroid.

First opinion! The drop from 30 to 25mg over a week was way too fast. Anyone that makes that kind of jump from a consistent replacement level will suffer from crisis like symptoms regardless of whether it is "too much". The body gets use to high levels and compensates as best it can with other systems, that then need time to catch up.

At 81kg an 175cm you are just in the overweight range. (You have to add a dosage factor of maybe 10-20%) According to my dosage tables (Uni Sheffield 2004) thats a minimum or starting point of 17.5mg/day at 10/5/2.5 (three doses) in mid BMI area. Add the weight factor and it would be maybe 20mg.

I have to point out that the actual dosage is more symptom set. ie when you commenced the drug they should have started you at this level and looked at energy/endurance/pain. Other body problems can also increase the demand for cortisol. Autoimmune is often a reason for almost doubling the dosage. Mine for example is about twice the table, but thats mainly because I am big and overweight. The emphasis for me is to find some method of averaging my body needs to determine the correct dose. At the moment yours seems more to be a case of the drug causing the problem so averaging methods are not going to be that reliable. You may of cause have that underlying need for more of it!

HbA1c is glycated hemoglobin or in simple terms an average of you blood sugar over the last 3-6 months. Its a common test done by diabetics to determine if their insulin treatment is averaging to reasonable blood sugar values. In your/our case blood sugar is affected by GH, ACTH/Cortisol and TSH/T3-T4. Some endocrinologists use the test and some dont. Fatigue is most often based in low blood sugar and an associated drop in BP. If your daily symptoms include low BP thats a strong indicator for too little of "something" that is affecting your blood sugar.

That your body temperature is 36-37 kind of implies you have an optimal metabolic rate (cells work best at "normal" body temp and people with hypoadrenal and/or hypothyroid have low body temps). I am not sure how useful that is to you though. You may have suffered damage to the hypothalamus where temperature regulation is kind of set. Your fever and sweating events could also be from the fast acting and decay of HC use. You should be taking 3 doses a day after food, in declining dose size. ie something like 15mg/10mg/5mg after breakfast, lunch and an afternoon snack (5-6PM or so). The most common side effect of not following a dosage schedule like this is sleep pattern/insomnia. If you are on thyroid meds you could in fact be taking too much of that and not enough HC!

Are you also on thyroid meds? The hot/cold intolerance is also an indicator of not enough cortisol by the way. Tuning this you need to combine the effects of adrenal, thyroid and GH. Weight gain I think can be GH related but I am not knowledgeable on that. HC can also make you retain water or bloat. Thats where my swollen ankles question came from.

Yes I seem to be jumping back and forth. Right now I am still thinking overdose levels of HC from a consistent too high level dosage plan. I dont quite know how to prove that though and your GH (lack) treatment introduces a variable I dont know enough about.

Where are you at doctor wise? Has anything come out of the failed HC lowering test? Has your entire metabolism been looked at? (incl thyroid etc)

Does your weight gain of 5kg/month associate with drug change some months ago?

(Please others read this and pick any faults. I have been a bit brain foggy recently)

Bob