Typical brain-fog! Anyway, this just popped into my mail box this morning...
universityspecialtydrugs.co...
What do you think?
Sorry if I shouldn't be posting this, I'm not advertising, promise! I just thought it was interesting for anyone who has a HGH deficiency.
Going back 18 years my son was taken off HGH as UCL said they were not sure it was needed anymore as full growth had been reached in his case (hypopituitarism with septo-optic dysplasia). I have heard various thoughts on this over the years and seriously wonder if he really does need this now. Have to say though that with him recently going on Actavis Levo, his energy level has greatly improved, his voice is stronger and he is not spending so much time on his bed. He has also had a big improvement on his skin. Wish I could take Actavis, but it gave me awful stomach pains.
Do they not test it regularly? They should. It's a myth that adults Don't need it. We need it for repair and reconstruction. It also has a great effect on the brain.
Needless to say they don't grey. They did say they thought it was useful for repair and reconstruction at the time. We are, unfortunately, no longer under UCL and can't get back there - Penny-pinching CCG - and local trust just as bad. Beginning to think I need it. Came off Nutri Adrenal 10 days ago (for a 9am Cortisol test next Wednesday) and am definitely feeling below par.
Could well be, j-bee. Lots of hypos are deficient in HGH because you need T3 to be able to produce HGH!
Well maybe he will do better now as his T3 has just gone to the highest it has ever been 4.8 (3.1 -6.8). I know not really high enough but maybe the best that can be knowing his history.
I hope for him that it does improve. HGH is such an important hormone.
What testing did you have done to discover it was low? My igf-1 is normal, but that doesn't mean GH is and no one will do further testing.
Well, from all I've read if does mean that GH is normal. GH is converted into IGF 1 in the liver. If the IGF 1 is normal, the GH can't be low.
They test IGF 1 because it is stable. HGH isn't, so you can't rely on the readings.
I was told by the Nueroendocrinologist pituitary specialist] that if an image of the Pituitary shows that it may have some damage, than an igf-1 is not enough. You would need a stim test, like a glucose tolerance test to determine an insufficiency. My mri showed the squished pituitary. Have you had an image of yours? A low igf-1 would indicate that you should have had an mri!
Ha! I was Lucky to get the IGF 1! I live in France!! It's not exactly the back of beyond, but it's a far cry from the US when we're talking about médicine. The doctor who tested the IGF 1 is THE best we have, but he's far from perfect. I doubt he knows much about ptiuitaries, he's more concentrated on the thyroid. So, no, I didn't get an MRI, and I doubt if I ever could.
That is terrible. The pituitary is the control center for the Endocrine System. Anyone who has low igf-1, especially needs a Pituitary evaluation.
Well, yes, probably, but... We're still living in the Dark Ages, here!
I just had a look at the phone book for our area - department, which is vast - we only have six endos for the whole department; 8 neurologists, but no such thing as a neuroendocrinologist. However, we do have one Neuropsychiatrist, whatever that is!
Well that is just terrible!! I am very grateful to be in the States, even if i am upset with all the doc's.
There are at least 1 Nueroendocrinologist in every State here. There is a Pituitary Center in Boston, that i have been signed up to go too..2 years ago!
I hurt all over today still..what have i done?
Silly thing to ask, but I need to know if this 'within range' IGF-1 is just classed as 'normal' or 'normal, low' ? faith63
IGF-1 97 (49 - 283)
Thank you.
it would depend on your age. A person in their 70-80's, it may be normal for them to be nearer the bottom of the range, young people, nearer to the top part. Also, if you have pituitary damage, then this tests is not useful.
The IGF-1 blood was done for an 3 year old faith 63, due to the child's tall height and weight. 4 stone at age 2yrs+ head and shoulders taller than others the same age.
I have just googled IGF-1 and it states on one website hypothyroidism causes low
concentrations of IGF-1, but medics have ignored/denied my pleas to check out if it is thyroid or gut issues.
Medics are 'reluctantly' now having to do more thyroid bloods (as we have at long last managed to get hold of old bloods done at a child's hospital several years ago and the child's bloods oddly state 'borderline thyroid' ????)
Also calcium and Albumin both under range and ALT 'over range' (ALT to do with liver.)
Any more info on IGF-1 I would be grateful for faith63. 
I wish i could help you more. I have yet to learn it all myself. I need to see a Pituitary Specialist to learn more.
It would be terrible to be dealing with a child in this situation and outside of the USA too. As much as i get upset by my doctors, we do have the best medical care in the world. The doctors not following through, with this child's labs being abnormal, is criminal!!!
I had forgotten that low thyroid can make low growth hormone and igf-1 too. But, it seems that this child is growing abnormally tall..the child has metabolic issues for sure and it is effecting her organs. We would be getting a Law Suit here for sure. ..Medical Malpractice. With Hypothyroidism it would be typical for the child to be shorter than normal. Did you see a TSH reading?
We just can't get to the bottom of it all, child does not seem to fit well into any category, yet the bloods are reading there is something wrong. Each time we find something that might fit, the child seems to be of the opposite symptom.
The boxes he ticked most, almost all, was of Giantism, but bloods (we were told,) at the time found nothing at all, I asked many times if it was thyroid, gaining vast amount of weight quick, yet years later when we are brave enough to ask for child's blood results it states 'borderline thyroid' low calcium and a few others that are high or low out of range, we were not told about. Bloods done a few years ago due to bone overgrowth found on child's broken elbow pointed towards central hypothyroidism, (I later learnt.) The older bloods showed differently with the TSH rising, but the FT4's were both quite low, within range, (bottom quarter.) Also child has hyper energy.
Like I said it is a mystery, but We have to fight it as the Medics are accusing child's Parents of over feeding the child, which is untrue and have put him on a very low diet, yet child still gains vasts amount of weight, certain months of the year, yet other months he gains no weight. Child's Siblings do not gain weight the same.
Not looking for a reply faith63 as I know you are not too well. X
Coastwalker, have they tested the antibodies?
Hi gg, no they did not test the antibodies back in 2009/ or two years ago, but TODAY at long last, thanks to us getting hold of the old bloods and presenting them to medics they are 'reluctantly' going to do some more bloods for our child. unfortunately this is the months where the child does not put on lots of weight fast, so the bloods will probably not show up. I have made a list of bloods recommended by
Thyroid UK (NHS Choices.)
2 x Antibodies included
and other bloods that were 'out of range' back in 2009
The Medic told Parents off for going on TUK, in front of others at a meeting, but now Parents can point out that
TUK is under NHS Choices.
We will get a result printout from the Doctor ASAP.
I do so hope it works, and you get all the testing you need. It really is disgusting that you've all been treated this way! I suppose they're worried that if you go on internet sites, you'll find out just how ignorant they all are!!!
I have read were a child can actually behave hyper active, when actually it is due to fatigue and low metabolic rate. Please ask for a free t3..it is very important. Can you get an image of the Pituitary..at least request it?
I'm so sorry that this is happening to you and a child..it is criminal.
Thank you for that faith63, I too have read something similar, but cannot remember where, but I do need to find it for proof.
I wrote out a list of recommended bloods from TUK
(TUK is now connected with NHS Choices,)
I found out not all bloods were done.
Well that will certainly go against them.
The 2 hour Blood tests took 6 hours and both glucose intolerant tests were normal Yet 'they' wanted another diabetes one to be sure.' ????
The child had had enough, got upset, had no food since the evening before so they walked out without doing the last test.
Initially Parents went to see a private pediatrician but were not allowed to pay for private MRI or Ultra sound, which was odd, eventually NHS did it reluctantly. Nothing was found, the results we saw did not seem to be in depth enough and the US scan amount of shots taken, (we counted,) oddly did not add up to the amount of result shots we were given. We had asked for the results beforehand.
Not good. I wish i could help more.
All I can remember is that for someone of 60, as I was at the time, so-called 'normal' is 90. But the doctor said 'optimal' was something over 100. Can't remember any more than that. It was 10 years ago. How time flies!!!
Thank you gg, I have written to faith63 above, but also done for you too. Many thanks
I was in Actavis Levo for a while until my pharmacy change the lab, stated feeling really bad and was tested, all my level where down so I ask PLEASE to get Actavis again. Just restarted las week, so hopefully will start feeling better soon.
Hope you can manage to raise levels again hayo. What were you changed to instead?
I would hate to have a child in this situation. The doctors are terrible. I'm so sorry for you both..having to go through all of this.
I think it is Bull Shyte!!! It is just a good dose of Amino Acids...this won't help a malfunctioning Pituitary . They are preying on the sick and desperate.
Um, no, I doubt that. It's a reputable company. Not all low HGH is due to a malfunctioning pituitary - although I agree with you that if that is the case, amino acids won't help.
It was me.
Um… no, not at that time. This post is four years old.
Has anyone discussed an alternative to Levothyroxine? It's the UK preferred Thyroid meds, I was told some doctors are giving NDT
Help: Can anyone send me a safe online address where I can get NDT 
Can other test results be wrong?
Can anyone recommend somewhere I can get a test for all vitamins and minerals.
Do others have a day like this?
