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My Life With Adrenal Insufficiency

Human Growth Hormone Deficiency in Adults: My Diagnosis Story

Human Growth Hormone Deficiency

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.

 

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

 

29 Comments

  1. Wow, you really had a bit of a battle on your hands to get a diagnosis. I bet you were so relived when you finally got there in the end though! Thanks for sharing your story with the #bestandworst and see you again! x

    1. it has been a battle. I hope these injections make some kind of difference to my life and reduce my symptoms so i can do more as a mother and individual.

      Angela x

      1. Angela,
        Your post was informative! I myself was diagnosed with Adult Growth Hormone Deficiency in 1998. Wow, it’s hard to believe it has been 18 years! I was 21 or 22 when I was initially diagnosed with a low Testosterone level and referred to the Endocrinology Dept at the Children’s Hospital where I had been a patient since my teens in the Neurosurgery Department. I had multiple brain surgeries due to hydrocephalus and a cyst on my optic nerve. Long story short, I was started on Humatrope, which I was on for a while, as part of the HyPOCCS Study through Eli Lilly, however, later on I switched over to the drug Norditropin. Due to being out of work/no insurance, I’ve been off of the Norditropin, however, I’ll be going on Genitropin here soon in place of that.

        Good luck with your therapy!

        Korey

  2. Your article is really informative. I have recently been diagnosed with GHD and have been taking shots for the last month and definitely seeing an improvement. I hope you will see an improvement too.

  3. Hi Angela I also have adrenal insufficiency and growth hormone deficiency I wish you the best of luck and if you ever want to chat I’m here for you 🙂
    Take care,
    Tracy Zeccola

  4. Wow interesting story. I was diagnosed with ME about ten years ago. However my son was diagnosed with GHD 4 years ago. I asked to be tested given Jake’s diagnosis and my diagnosis. I was found not to have GHD. I still can’t quite believe it given the symptoms I have are identical with adult GHD and my son being diagnosed. I had the glucagon stim test. I am wondering whether I should get the actual results for the test and maybe get a second opinion. Any advice gratefully received!

      1. I’m Angela and I had my Insulin Stimulation Test in preston hospital. I then had an arginine test at the same place. I don’t know the results but the diagnosis on my letter says severe Human Growth Hormone Deficiency and it was apparently almost non existent.

  5. Hi,

    I am also GHD and Adrenal Deficient. I had been having many attacks from the AD but then quit eating sugar and started on one 500 mg of metform a night. No more AD attacks/illness for three months now. So far so good. If you can’t get the pump a diet change and one pill of metform did it for me. As I look back the sugar intake like a soda or something sweet seemed to tip me into the AD attack.. I hope you can get yours under “control”. Or at least have less attacks. I don’t think it ever is totally nder contril. I am going to research the adrenal pump as I was told there wasn’t anything like that. Do they also make a tester for cortisol like the glucose tester? Thanks for Sharing.

    1. There is no cortisol tester and the pump is still quite new and they are still doing research but I think it does help. I dot have sugar either as i cant have sugar due to my gastric bypass.

  6. Hello Angela!! I was just recently diagnosed with AGHD! I was born hypothyroid so I have constantly had this battle. About 2 years ago my medication stopped working and I knew something was wrong. One Endocrinologist told me it was in my head. I then decided to try a more natural medication with the help of a NP. That guy was a quack. The medicine helped for about 6 months but I noticed my skin had started to react fairly bad to just about all dairy… Randomly. In May I found a new endo and he immediately after my first round of blood work thought AGHD. In June I had my ITT done. In July I had an MRI to rule out any pituitary tumor or injury. This month I’ll be getting my HGH. I can’t wait to see the difference in my life. Thank you for sharing your story!! I hope all is well with your new treatment plan.

    1. Oh I’m sorry your going through this too but glad to hear you finally got a diagnosis and are about to start treatment. Hopefully it will make a difference. It’s taken 9 months but im so much better than I was without the medication.

      1. How long did it take for you start seeing a difference. I’ve been on the meds for about 4 months and haven’t felt any better doc just up my meds this week .

  7. I have had fibromyalgia & CFS for 10 years. Failed the Glucagon test back Feb 2015, was then asked to have the IST…which I passed. I was told that I do not have HGH deficiency, even though I have most of the symptoms. Every muscle hurts and they cannot tolerate any form ox exercise.
    I passed short synachen test (although biochemist stated, slow response to synacthen).

    Been told that the only reliable (and gold std) test is the IST.

    Would like to have a private arginine test as I can’t get the glucagon stimulation test out of my head…why was it so low?

    Any thoughts, Amy ideas where I could get tests privately.

    Thanks

    1. I’d look up private endocrinologists and make an appointment for one if you can afford it. These things cost money though so do what you feel is right. I paid for private help and it was worth it for me but for everyone the situation will be different.

  8. Thank you for sharing! I’ve been trying to figure play at is wrong with me for several years. I finally seem to be getting somewhere with some bloodwork and now my doctor wants to run the GH suppression test. I have almost all of the symptoms. After trying to find someone to take me seriously for years, I find myself anxious to have the test done. How do you feel your quality of life is now? Will you be on the injection for the rest of your life?

  9. Hi, Angela. I was diagnosed with growth hormone deficiency a few years back. I tried the injections and stopped them about 6 months after I’d started treatment. It must’ve taken about 4 months to see any rise in levels. After finally reaching a low level in the normal range, I noticed my feet were growing and widening so I stopped treatment immediately. I was afraid of additional growth and only feet. Three months later, at my follow up appt. it’d been confirmed my level was back to almost nothing. I’ve yet to meet anyone with the same deficiency which is become increasingly frustrating as I don’t think my endocrinologist understands how the symptoms affect my life on a day-to-day basis. Any suggestions? What have you done to cope with it? My last resort is medical marijuana which I’m seriously considering. Any feedback is certainly welcomed.

    1. My endo prescribes growth hormone and I have regular blood tests to make sure I’m on the right level and it is increased and increased as needed. I am not an advocate for illegal drugs or medical marijuana but hope you can find a good endo to help. Were you on the correct dose before?

      1. The injections worked but the side effect of limbs growing was far too great of a risk I was not willing to take. Luckily, it was only me feet that grew but both are now different sizes. Thanks for sharing your story.

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