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Human Growth Hormone Deficiency in Adults: My Diagnosis Story

Last week I was officially diagnosed with Human Growth Hormone Deficiency in addition to Secondary Adrenal Insufficiency which was diagnosed 27 months ago.

I’ve decided to share my story of how lucky I feel that this has been discovered. You see, No one even considered I may have GHD and it was only by accident that this got discovered.

Human Growth Hormone Deficiency

I have been continuously told for 7 years I must have Chronic Fatigue, yet I’ve always known this is not right because ME is consistent chronic tiredness where you never feel refreshed. I can feel refreshed after lots of sleep- that is not ME.

Anyhow I finally have a diagnosis and here is my story of how my second condition was discovered.

In July 2015, I underwent an Insulin Intolerance Test to check my cortisol levels for Adrenal Insufficiency.  The nurse said, “well we might as well check your GHD at the same time”. I replied “What is that?”. The only GHD I had heard of was the GHD hair straighteners that I had bought as a young adult.

The Nurse replied, “GHD is a hormone that can make your muscles hurt and make you really tired if you don’t make enough of it.

I happily agreed to the test, after all, my health is really poor. The Nurse went away to look at my notes, she then said, oh you don’t need testing for GHD, you only have adrenal insufficiency, we will just test your cortisol levels.

The Insulin intolerance tests is quite a dangerous test and unpleasant and I did not want to have to undergo a GHD test at another date so I asked the Nurse to please check me for Growth hormone Deficiency just in case. At the end of the day it would only be a few extra test tubes and Ive had hundreds of blood tests now, what difference would one more make?

The nurse agreed and tested both my Cortisol and Growth Hormone responses. Four weeks later I was told over the phone that I was Human Growth Hormone deplete. What did this mean? Would I need medication? Do I have a new condition? The Nurse said I would have to wait for the Endocrinologist to look at my results.

I waited with no response. Over the weeks I rang the hospital many times and never got an answer. I was stuck in Limbo. I wrote an email. I sent it to the hospital stating I had been told I had a problem but was not being treated for it. I received an email saying my Consultant had been on leave, however he was now back and wanted me to do a second test to confirm the GHD.

I had to wait another five weeks before I could do another test, the Arginine Test to check confirm a diagnosis of Human Growth Hormone Deficiency. On the 1st of October I had the Arginine Test. I then had to wait to see the Consultant.

On 15th of October I saw my consultant. He told me I do not produce Human Growth Hormone. I was officially diagnosed and met the criteria for daily injections. I was told that 80% of Adults diagnosed with GHD have a significant health improvement and that once I start the injections my health may improve.

Although I still have problems with my cortisol levels and need more tests to try and get the ideal dosage and treatment for my Adrenal Insufficiency, there is a huge chance my symptoms may improve over the next year and I am hopeful this will happen for me.

The Symptoms of Human Growth Hormone Deficiency

According to the London Endocrine Centre these are the following symptoms of GHD in Adults.

  • Increased body fat (particularly at the waist and in the face)
  • Decreased muscle and bone mass
  • Thinning skin with fine wrinkles
  • Poor sweating or impaired temperature regulation
  • Reduced strength and endurance
  • Low energy level
  • Decreased well-being (moodiness, mild depression)
  • Poor sleep
  • Higher cholesterol levels, especially LDL (“bad”) cholesterol
  • Overproduction of insulin (a hormone produced by the pancreas that regulates the levels of sugar in the blood), resulting from overweight

Well, which of these symptoms have I been suffering over the past two yeas?

  • impaired temperature regulation
  • increased body fat
  • reduced strength and endurance
  • low energy levels
  • poor sleep
  • overproduction of insulin resulting in blood sugar hypos.
  • decreased muscle and bone mass.
  • moodiness, stress, anxiety,
  • thinning skin
  • Memory and concentration problems

I HAVE ALL OF THESE SYMPTOMS!!!  Yet Doctors and specialists have continuously tried to tell me for Seven years I must have Chronic Fatigue, ME or Anxiety. I knew I was right and although I feel relieved, I also feel cross as it should not have taken so long to get to this point.

It has been hard for me to take everything in that I’ve heard over the past week. I’ve had a mix of emotions, relief, anger, fear.

I am relieved to have a new diagnosis. I am hoping that when I do eventually start treatment in December or January (Whenever I get my appointment) that the medication will work and my symptoms will improve or go away over the next 9 months. I’m scared just incase it does not- after all I’ve hoped for this in the past and it has not happened.

What is the treatment for Human Growth Hormone Deficiency in Adults?

GH is usually administered as a daily injection under the skin. Because adults tend to have more side effects than children, Adult treatment often begins at a low dose and then is raised gradually.

According to the Endocrine Centre patients starting growth hormone replacement therapy need monthly follow ups. There needs to be a continued monitoring for side effects and optimal replacement dosage.

I will be shown by an endocrine nurse how to inject myself daily. I will have to monitor my blood sugar levels and have my dose increased each month until they get to the optimal dose.

It can take 3-9 months to feel much better- if i’m in the 80% of people who improve.

Human Growth Hormone Deficiency and Adrenal Insufficiency

I still have Adrenal Insufficiency (although my adrenals can produce a small amount of cortisol on there own) and I still need help to work out the correct dose of medication for my body.

I have been persistent on the phone to the Endocrinology team and I will be having a blood test tomorrow at the hospital to check my cortisol level at 4pm before my 5pm meds are due. This will help to see if i’m on the correct lunch time dose of cortisol and see if my medication is lasting until 5pm.

I will also continue to seek a 24 hour day curve as my worst symptoms are always in the evenings between 6-10pm. This is when I’m very unwell and it has a knock on effect the next day.

I want to switch my Cortisol dosing schedule from 3 times a day to 6 times to better fit in with the natural cortisol circadian cycle. I’m going to do this once I’ve had a day curve test to record my results on 20mg at 3 times a day.

My hospital wont do a 24 hour day curve. They don’t do blood tests after 5pm. I need to go private for that. It will be £250 for a consultation and even more for a 24 hour day curve- maybe £3-400. So about £550 all-together. It will be worth it though to get the results and compare this to the 3x a day dosing schedule which is not working for me.

I need to get proof via blood tests that circadian dosing benefits me as talking about my symptoms is not good enough for the Endo to listen.

I’ll also keep trying to access the Adrenal pump. I was told on the phone today that they are sure I will need to stay on Cortisol for the rest of my life and follow the stress dosing rules when I’m ill. I was told to come to hospital if I have continuous vomiting and or diaorreah or an adrenal crisis. I’m still not sure what to do (cortisol wise) for exercise or periods etc.

so I would like to get the best treatment option to get the optimal replacement therapy available. I’ll keep looking for a specialist to work with me to get the adrenal pump and keep raising the funds but first I need to save for the 24 hour day curve results which will demonstrate that circadian dosing is better for me than 3 tablets a day.

I feel better now I have a plan. I’m hopeful things will improve however it is going to take another year or so but at least I have hope that my health will get better eventually and I’ll be able to do everyday things again. Fingers crossed

Angela Milnes xx