I'm finally having a pituitary stimulation test to determine if I'm adult growth hormone deficient, and I was wondering if somebody knew the ranges that are acceptable according to NICE guidelines.
I had injections as a teenager, so was growth hormone deficient- and I've never been tested since.
My life really isn't great at the minute, and it's like the doctors don't believe me.
I turned 32 2 days ago, male, 6" 2, 82kgs
I had to really assist the whole process, and it was me who told them I had growth hormone deficiency as a teenager etc I could go on part by part of the saga- it's been an awful woeful experience.
Any assistance would be greatly appreciated and its good to be part of the community!
Welcome to our forum and sorry to hear you are feeling unwell.
I thought a growth hormone deficiency diagnosed at birth//in childhood is a lifelong condition ? ? ..necessitating the monitoring of and//or treatment forever ? ? .
NICE recommends a peak growth hormone response of less than 9 mU/litre should warrant treatment, when the insulin intolerance test is used..
Other hormonal// glandular disorders frequently coincide with diminished growth hormone production and many symptoms overlap ; weight gain, blood sugar issues, high cholesterol, etc, as cortisol becomes compromised and GH interacts with TSH levels. (TSH tells the thyroid to produce hormone needed for good metabolism).
As all hormones are reliant on each other, have you had thyroid hormones checked ? ? . Also thyroid antibodies (TPOAb & TGAb denoting Hashimotos) as GHD can be associated with autoimmune disease. Hypophysitis is lymphocytic infiltration of the anterior pituitary and Hashimotos, lymphocytic infiltration of the thyroid (one autoimmune disease predisposes us to others).
Also ask for a 9am cortisol serum blood test and sex hormones to be tested as testosterone is mostly produced in the testes but production directions are based from the pituitary gland.
If tests are inconclusive, members use more comprehensive testing from private labs for all hormones but you may as well get what you can from the National Health first.
I can confirm that they tested my thyroid and it came back okay, however they've put me on levothyroxine 50ml.
I can confirm that although I don't have anymore energy with it, I at least don't feel like I'm going to faint/ fit whilst taking it. ( this all got too much 6 months ago when I kept feeling lightheaded and like I was going to fit, which is what prompted the initial consultation).
They did my 9am blood tests for cort, TSH, igf-1 etc and said they came back all okay.
My IGf-1 was 17 from a range of 15-35 at 9am.
I need to really read up to familiarise myself with this subject because parts of your answer I was unaware of I must say.
All through my twenties I've had issues with dizzy spells etc but the reason all this came to a head was the fact that i was dizzy and low on energy to the point where I've stopped socialising, going to the gym and really doing anything, ( plus as above I felt like I was going to fit)!
I never knew I should've been getting checked regularly. When I stopped my injections I was 19-20 I think. Worse part is I stopped them thinking I didn't need them anymore as I'd grown taller! I got signed off by the hospital and have never been monitored since!
I eat a pretty much flawless diet and really look after myself, but now literally can't exercise, feel lower than low and the only thing I still do well is eat well.
On a side note I've always had bad low spells throughout my twenties but just got on with life. To be fair a lot of people have to do that.
If it's the case that it can't be cured, it's a shame that they're really putting me through my paces despite being diagnosed- I mean not every other person has it right?
After waiting 45 days to see her initially the endocrinologist was trying to send me away without even doing any blood test! She said I sounded stressed and to come back in 3 months!
Anyway, I'm doing all I can to ensure that my body is working as well as it can.
I'm not consuming any alcohol and have a sleep diary .
Honestly, I just want be on a level playing field and they way I feel every day- man.
It's hard to explain to people why you're acting in a certain way.
Today is a primary example- work are going to the races for hitting targets followed by drinks then food but I'm not going because I'd simply rather read my books and do some work. I don't go out anymore.
There's people a lot worse of than me in terms of medical issues so I shouldn't moan, but something's definitely not right and given that I've already been diagnosed, surely it can't be this difficult!
I really appreciate the answer and would have saved up to do some private testing but apparently if I did, the NHS would still make me do their tests anyway! Because they wouldn't recognise the results from an external body.
What's worse, the reality is I couldn't afford the prescription.
I know one day I'll have private medical, but I'm not from a rich family at all, so just need a little more time to get myself I a position where that's feasible.
I'd love to go a specialist endocrinology clinic and have a full range of tests done, but worry if I did then I'd have no hope at all of getting prescribed the mess even if the results come back low.
Thanks again for your answer, it's much appreciated.
Glad there's people out there because genuinely, I've never felt like there's no body to turn to- especially when it seems the doctors I'm dealing with sadly just aren't interested.
You don't need to initially spend loads of money because there is so much info available on the net. Educate yourself so you can make informed decisions. I am not familiar with your condition and have only advised what I have read myself.
All hormones work together and being deficient in one, will have repercussions elsewhere that may initially appear quite unrelated. Doctors are rubbish at joining the dots as only consider and treat one symptom at a time as opposed to looking at the whole picture.
You will get good support on here as we have lots of lovely members but j_bees suggestion below of also joining The Pituitary Forum is excellent as they may hold more knowledgable on your condition.
Never accept a doctors "normal" as normal. A GP is only a general practitioner and works within huge ranges & general guidelines that don't suit everybody.
If you post any results complete with ranges (numbers in brackets) as a new question (particularly thyroid & cortisol) members will comment.
Private specialists appear to becoming more open minded in that mine asks my GP to do all bloods and prescribe meds on the National Health, so keeping on-going costs down. However, all doctors work differently, so this would need discussing during your first consultation.
Considering your symptoms, IGf-1 looks very low to my untrained eye ! ! ...
Hidden ,my special needs son has Hypopituitarism with Septo-Optic Dysplasia and was on Human Growth Hormone from the age of 2.5 years to 7 years. He then had a gap of a year, because of worries of Creudtzfeldt-Jakob Disease and then went onto Synthetic Growth Hormone. He stayed on this until he was 19 when they (Great Ormond Street Hospital) said he had reached his full growth and would not be staying on it as they were not sure it was doing anything after this. I believe it is now known that it is necessary for repair of tissues, but cannot find a link to substantiate this. You might get help from The Pituitary Foundation
I can quite understand what a woeful experience it has been, and still is, for you, as I can see how it is affecting my son. He got fantastic treatment from GOSH, but this has all fallen by the wayside since he left there at 19. He originally got passed over to UCL, but as my health deteriorated I asked if he could be referred locally (Chelmsford) and now wish I hadn't done so. Although UCL was not much better.
If I can be of help further, please feel free to ask. Wish you well.
I was just replying and then radd replied already!
You guys are very helpful and I feel great that there's actually people out there.
Hopefully I too can help others in the future.
I'm so sorry to hear about your son, that sounds very familiar.
My experience years ago at Leeds hospital was amazing- genuinely.
I went to the doctor one day, next I was at the hospital getting the tests followed by being prescribed.
Completely changed my life.
I really hope he gets the attention he needs.
Funnily enough I joined the pituitary foundation about a month ago, donated a little money and they've been great!
I understand your health has deteriorated? My thoughts are with you- is your son at a centre of excellence? The pituitary foundation said there's different centres of excellence that's all, ( I presume you know about these to be fair).
Hi Hidden ,I think that radd is so knowledgeable and gives good links. I also joined The Pituitary Foundation, but must admit until you have just mentioned it, I had forgotten all this. I must give them a look in now and see what is going on near me. At the time I joined (about a couple of years ago) I could not get to one of their meetings and then promptly forgot all about them. My health has taken over a bit since then, but I feel I am back on track at the moment. My problems are all to do with Thyroid (Graves then operation and then Hypo) and since Levothyroxine was changed from Goldshield Eltroxin to Mercury Pharma Levothyroxine I have been going downhill, resulting in an operation earlier this year. Have improved from that so can now concentrate on my son a bit more. He is now 39 and went into supported living 3 years ago. I still feel as though I have to keep an eye on his health as the staff are not very knowledgeable on his problems.
It has been so useful to me to know how you are suffering, as it gives me an insight as to how my son is suffering (I wish neither of you were though). Although his speech is good, he does not choose to talk much and only then about things he is really interested in. He is fairly good with a computer until it goes wrong and is selective in what he watches on TV. He also reads well and again is selective. A lot of his day is spent sitting and/or laying down, which I feel is to do with his lack of energy. His Thyroid levels could be higher, as indeed could mine at the moment, but our Endo is not very forthcoming on giving advice at the moment (has been better in the past) and I cannot treat my son any better unless everything goes on a special treatment sheet. At the moment I am trying to get either the Gp or Endo to put some vitamins and minerals on this sheet, but they are reluctant to do this. I feel it is because of cost, but I am happier paying for these myself as they are in a form more acceptable to my son. About once a year I have both our blood tests done via Blue Horizon, details on the main Thyroid UK site.
Talking of vitamins and minerals, have you checked that yours are optimal for your condition. There are others on this site who are so much more knowledgeable than me about this, but I do know that you need Vitamin B12, D3, Ferritin and Folate to be at least half-way through their respective ranges.
I do not think there is a Centre of Excellence anywhere near us, but believe I read of one near Portsmouth. I will try and find information about this. I know it was posted on this site once. This was private, of course.
You might get a bit more information from a site called Savinglivesforsteriod dependants. It is a fb site.
Please contact me if you need any further information.
Good luck to you and I really do appreciate you taking the time out to compose such a message.
It must be hard on your son but it's great you're there for him!
It's a worrying prospect the first time you realise that there's not always someone there to help medically and that there's a huge responsibility on the individual to educate themselves on their condition.
Its like the endocrinologist I saw had made up her mind before I opened my mouth.
Anyway I wish you and your son all the best and thanks again 👍
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