× Adult GH deficiency is now a well-recognized clinical syndrome that includes symptoms of increased body fat, decreased muscle and bone mass with reduced strength and endurance, impaired psychological well-being, reduced vitality, and poor quality of

GH Deficiency Help

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Replied by BRENDA_1 on topic GH Deficiency Help

Hello Kmuir,
Have you been able to resolve the problem? If not, keep trying whatever you can.

I have been asking my endocrinologist about growth hormones for well over a year, and I was finally able to get the test which proved my deficiency. In Alberta, where I live, you must fall into a certain range on the test (can't recall but could look it up) or you may not be approved. The reason I had to wait so long for the test was that my endocrinologist was adjusting steroids, etc. and all of my other hormone tests had to be in the normal range before we could consider growth hormones. Following the clinical evidence, my endocrinologist had to request special authorization for me to take the growth hormones and I had to apply to a separate health care plan in order to get coverage.

I'll be starting growth hormone treatment later this month, but my endocrinologist tells me to be cautious in my optimism because they work very differently in different people and may or may not make a difference. I'm hoping they do, because despite having my other hormones in the normal range, I feel poorly most of the time and cannot work right now.

I agree that all of this is highly frustrating. It's difficult, on top of feeling unwell, to try and navigate the bureaucracy of getting specialty drugs. I hope you are able to find what you need.
3 years 6 months ago #10226

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Replied by Colorcrazed on topic GH Deficiency Help

We have also traveled across the country to see Dr Theodore Friedman, and continue to be monitored by him through phone consultations and the occasional trip to California. He is the best! He was the first endo, after a long list of doctors, who actually went through all of my daughters information and test results, listened to what she was saying, and worked out a plan to treat her. I honestly believe that if it weren't for him and Dr Shahinian ( her surgeon) she would not be the healthy and productive young adult she is today. Our insurance has never covered any of his appointments, though we have been able to receive coverage for tests and labs... I know it becomes very expensive, but in the long run it is worth every penny. I would have done anything for my daughter to receive this treatment. Now the biggest battle I have ( and it is a constant battle!!) is getting the insurance company to approve her growth hormone medication every year. I am not sure WHY this needs to be reauthorized every single year! Her pituitary is damaged...it is not going to suddenly repair itself -- I become so frustrated spending months fighting for approval every year! I don't believe patients with heart disease have to reauthorized??? I certainly do not have to prove the need for my asthma medication every year ( or ever!). If the doctor writes the prescription, I think it is safe to assume a patient may need that medication. I apologize for going off topic- but here it is, April...and I am still fighting for medication for this calendar year. ( and before I forget... I am not familiar with Canadian healthcare regulations, but US insurance companies have all required proof that my daughter has failed 2 Insulin tolerance tests before they will consider allowing her Gh medication). I wish you all the best!!
5 years 4 months ago #10066

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Replied by jamyrogers on topic GH Deficiency Help

I would switch DR's. Getting dxed for me was a nightmare. Even after seeing a specialist with my igf-1 low it took well over a year. Since I started getting sick I learned to go with what you feel and get a new DR. I a now totally pan-pituitary but have been on rGH for a few years. I went to Theodore Friedman who had an associate do my gh test. I see Dr Friedman as a twice yearly consultant on that and a internal medicine for other things. He is at www.goodhormonehealth.com
5 years 4 months ago #10064

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Replied by kmuir2108 on topic GH Deficiency Help

Thank-you colorcrazed. I have sent two letters to my doctor requesting an Insulin Tolerance Test to test my GH. To date no response. He believes GH therapy is to controversial. I also have been in conversation with Dr. Ezzat who is on the scientific advisory board for PNA. After discussing my tests he also believes I need the ITT test and should get a referral to go to his office on Toronto. This is not an easy task in Canada due to provincial jurisdictions. If a test is available in my province Manitoba Health will not cover any costs associated with going out of province and my current endo also has to send the referral documentation. I seem to keep hitting a wall trying to sort this out. Dr. Ezzat has suggested I try another endocrinologist and see if I can get the test. I guess that's my next option.
5 years 5 months ago #10059

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Replied by Colorcrazed on topic GH Deficiency Help

My daughter had pituitary surgery in July 2010 and following the surgery needed hormone replacement ( estrogen, progesterone, GH, 2 thyroid meds, Florinef to increase to blood pressure). Over the course of about 18 months she began to regain some of her ability to produce hormones. We were told to be hopeful, but not to expect this. At this time, she is still on GH, and will remain on it because this is the area of her pituitary that sustained the greatest damage. And yes, her dr keeps her levels at the mid to upper range on the scale. I will say that none of the local endocrinologists would even consider prescribing GH to her and told me it was absurd that she was on it. We traveled to see a specialist in the PNA guide to help her- I cannot imagine what her life would be like if we had not. She is an active and healthy 22 year old!
5 years 5 months ago #10058

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GH Deficiency Help was created by kmuir2108

I had a pituitary macroadenoma (3.5cm x 4cm) removed last year on October 7th. I am currently on Cortisone acetate, Thyroxine and testosterone. I have been struggling health wise and have been trying to get my endocrinologists out here in Manitoba to understand the Growth Hormone portion. I am on my second endo now.

I am a 44 year old male. My IGF-1 test results to date have been 43 (Before Surgery) 58 (November) and now 87 (January) on a reference range of 66-204. My endo tells me that I am in the normal range and I can't seem to convince him I dont feel normal. I read a Lewis Blevins article on pituitary.org that says he tries to keep his patients on HGH therapy within the mid to upper half range.

I am looking for an opinion if what my endo is saying is correct and I need to be patient to see if my GH returns over the next year. I just need answers and I am getting frustrated feeling this way.

Any help or suggestions would be appreciated. :(
5 years 5 months ago #10057

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