hello everyone, I have been taking levothyroxine for over 30 years now and in the last six years my GPs have seemed obsessed with reducing the dosage. I now take 100 µg per day and I do feel slightly hypo, gaining weight, feeling tired et cetera. I am a person who feels that they have never been fully restored by Levothyroxine , so, after much discussion and argument about reducing further with one of the GPs at my local practice, he decided to do a raft of tests because I insisted I have never had any Pituitary screening, which he felt must’ve been done right at the beginning of my diagnosis, but I am absolutely certain that none was done. The outcome of this testing is that my human growth hormone (HGH) is low.
My GP said he didn’t know what to make of this and would refer to endocrinology, endocrinology would not accept the referral saying they don’t know what my HGH should be at my age (65). I feel this is very unfair, that this may have been my problem, all along, given my poor response to Levothyroxine and that perhaps HGH could be the answer even after all these years.
Has anyone else experienced this or does anyone know anything about the role of HGH in hypothyroidism? I should add that I display several signs of low HGH, including the aforementioned weight struggle, tiredness, and I am only 5 feet tall, shorter than all my sisters and my parents, which seems to fit with that profile. Many thanks for any contributions at all.
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I don't have knowledge of HGH. It may be that you have always had low levels. It is not usual to measure other pituitary hormones when hypothyrodism is diagnosed, especially if TSH is high.
About 80% of growth hormone is produced during deep sleep. So, it's important to get good quality sleep. I find I need the correct dose of liothyroine to get proper deep sleep although my hypothyroidism is complex.
It would be worthwhile getting a cheap private test of TSH, fT3 and fT4 to see what your hormone levels are, expecially as you have symptoms.
It seems that growth hormone levels fall as we get older, this article ncbi.nlm.nih.gov/books/NBK2... has some information (I haven't read it).
Thank you for your reply. My TSH is low and this prompted my GP to reduce but my TSH has always been low. It is less than 1 and has not changed despite the reductions from 250 to 150 then 100mcg. I will arrange a private test of TSH, fT3 and fT4. I often don't sleep well, so that may be worth addressing. Thanks again.
It is likely that this effect is not caused by GH per se inasmuch as reduced T4 to T3 conversion is a common observation in catabolic states with concomitant GH hypersecretion. It remains to be shown whether insulin-like growth factor I (IGF-I) stimulates peripheral deiodination.
My GP cannot request any test apart from TSH as he says that is the only reliable test. All other tests must be ordered by Endocrinology and they have refused to accept a referral. I have requested copies of my recent bloods which I will post when I receive them. Many Thanks for taking time to respond, it is much appreciated.
Sadly this is the spiel that medics spew out...and it is rubbish,
If their knowledge is poor they hide behing guidelines instead of taking an open minded approach.
The response you get from a medic will only be as good as his knowledge allows....med students are not taught much about thyroid disease and TSH is highlighted as the gold standard test.
Fine.... if patients have uncomplicated hypothyroidism but many patients do not respond well to levothyroxine and that lack of knowledge causes then great suffering.
Approaching 300,000 have alreadyarrived here!!
Cut backs don't help either
Science proves that TSH is not a reliable marker....see the links I added above
But getting a closed minded medic to understand this is well nigh impossible....and it's causing thousands of patients to suffer unnecessarily
Treatment like you are being subjected to Is unjust!
It took me nearly 50 years to discover why life was slowly draining out of me!. Yes 50, I'm now aged 77!
Might you consider doing a private test...again, links in my previous post....the results should give you the clout you need to be listened to by a knowledgeable medic.
I suggest Monitor my Health ( see link in my earlier post) for an initial test... and testing is done in an NHS lab so medics cannot be sniffy about the results!!
Monitor My Health private thyroid tests in the UK are carried out at the Royal Devon and Exeter NHS Foundation Trust laboratory. They provide an easily accessible, safe, regulated service that promotes disease prevention and wellness.
Order a thyroid home testing kit and get a 10% discount using the code THYROIDUK10
We can have a look at your historic labs but given what you say they may still not be comprehensive enough.
Sorry, I'm ranting again but this treatment causes the red mist to drift in....it is appalling!
More comprehensive labs will point the way forward!
Thank you so much for this. I know my health issue has never been fully resolved and you are right that medics just refuse to hear it. I find ordinary living so tiring and have to save energy to do things like book and attend an eye test ! I will definitely have these private blood tests done. It makes such a difference being ‘heard’ in this forum.
Hi, I am taking growth hormone because I have pituitary failure and it has made a great deal of difference to my energy levels. My Endo is a pituitary specialist and has told me that my gh levels needs to be towards the top of the range to help me. My blood level was well below 150 at first but has slowly increased as the dose was increased. He says an average dose is around 0.4 although my dose is just 0.3. I inject gh at night just before I go to bed. I feel that it helps all the other endocrine systems to function properly if they are all in the appropriate level so I am taking T3, hydrocortisone , growth hormone and a small amount of oestrogen. I will probably need some testosterone too at some stage.Heather
Of course, I am 67 and started growth hormone last year after a long period of almost 16 years of having problems which had not been acknowledged. My local Endos were completely useless and don't "do" growth hormone treatment. It's taken me this long to find someone who would take my pituitary failure seriously.Heather
Thank you Heather. Your message is so encouraging and dispels the idea that I am too old for it to be addressed. I wonder if you could share the details of the person who is treating you. I think I need to see them!
Brilliant! It’s quite a distance for me but I want you to know that I will be making contact with Dr Levy. I feel hopeful for the first time in a very long time. Thank you x
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