Low IGF

[Fox78]

Has anyone experienced this? And has a growth hormone deficiency?

My latest igf-1 test has come back low and I’m now being retested and going for a pituitary mri scan

[greygoose]

Yes, I had low IGF1/HGH. I had HGH injections for a couple of years, and went onto T3 only. I think it's ok, now, but I haven't had it retested for years.

[Fox78 in reply to greygoose]

Hi Greygoose

Ok thank you what was your caused by as I assume they think mine is a pituitary problem hence them sending me for a scan?

And what were your symptoms? I haven’t felt well now for a long time I take t3/t4 levels are fine... but I still feel exhausted and I just cannot do anything like exercise without being shattered weight gain which I cannot loose and pains in my back and legs

[greygoose in reply to Fox78]

Difficult to know what the symptoms were - I don't know what was thyroid, what was adrenals and what was low HGH. It's not always clear-cut. But, I do know that when I started the injections, I lost weight, had more energy and was less depressed.

What caused it? Possibly a level of FT3 that was too low for me - you need good levels of FT3 for the pituitary to produce HGH. But, I don't know for sure. Don't think I've ever had a problem with my pituitary. Do you have Central Hypo?

[Fox78 in reply to greygoose]

Not that I’m aware no. My tsh was high 46.9 when I was diagnosed however it’s been untraceable now for two years even though my t3 t4 levels were not optimal but my tpo antibodies were tested and were highish but again that’s been a few years ago but they always class me as AIT when they send letters etc so I assume it’s not secondary hypothyroid

My t3 is quite high now since I’ve been taking armour so I don’t think that’s the problem last tested it was 6.4 (2.9-7.1)

It will be interesting to see what the scan says as I’ve thought there was something else going on for a long time I just don’t feel well they’ve tested every hormone going and the only thing they can find is PCOS and pre diabetes other than my thyroid :/

[greygoose in reply to Fox78]

Have they tested your adrenals?

And have they actually tested your HGH, or just the IGF1? When I was having HGH injections, my IGF1 stayed low, even though my HGH must have been quite high, but we can't get that tested here - difficult enough to get IGF1 tested! Doctor said something about low vit A. Have you had that tested? And your liver, is that ok?

[Fox78 in reply to greygoose]

I have periodic liver tests yes I think the last one was about 6 months ago and was ok

They also test vitamins but not sure about A I don’t think so

I’ve had my cortisol tested which was high but not over range they’ve also done a 24hr urine for cortisol and a dexamethasone test which I suppressed so they ruled out Cushings even though I’ve gained lots of weight stretch marks etc

No not had the HGH done this had literally just came from me saying at my last appt I still don’t feel well mainly tired lack of energy cannot exercise or loose weight so he asked for my latest tests to check back to see what my igf levels were which came back as 8.9 (12.4-39) so since then they have asked for an mri with contrast and another igf-1 test to be done

[greygoose in reply to Fox78]

If there was a problem with your pituitary, one would expect the cortisol to be low, not high. So, I really don't know. Might be worth getting vit A tested, though.

[Fox78 in reply to greygoose]

Thanks Greygoose I will ask them if these tests come back clear on the mri

[greygoose in reply to Fox78]

You're welcome.

[Wired123 in reply to greygoose]

This is very interesting.

A previous Endo wanted to trial HGH on me but then it never happened.

I’ve started on T3 since theb so from what I’m reading of your posts that T3 meant you no longer needed HGH? Am I right?

I’m having IGF-1 tested to see what the levels are like. Perhaps T3 has improved things?

[greygoose in reply to Wired123]

No, not at all. I had to stop the HGH injections because I couldn't afford them anymore. But, seem to be ok without them, now. Probably because the injections raised my level and for whatever reason my pituitary was able to carry on from there. The T3 may have helped, but I certainly wouldn't claim that it was due to the T3 that I can now manage without the injections. Even though I was on a very high dose at that time - 225 mcg a day at that point. And, I'm not convinced that testing IGF1 levels gives you a true idea of your HGH levels. Because, as I said, my IGF1 level stayed low, even though I was on HGH injections. Which can't be right.

[Wired123 in reply to Fox78]

Have you had an Insulin Tolerance Test as this is another measure of Growth Hormone deficiency.

If your body doesn’t respond well enough to the test a GH deficiency can be diagnosed.

If your pituitary is damaged or sun-optimal, GH deficiency could be possible. Google empty sella syndrome which is diagnosed through brain MRI.

The one thing to caveat is that obesity (and I’m not implying you are obese) can in itself cause an impaired GH response so it is worth considering.

[Fox78 in reply to Wired123]

No only had an igf-1 test which they did as I was still complaining I felt ill 3 years later after all other tests have been exhausted I still get chronic fatigue pains no energy exercise intolerant out of breath etc had multiple ecgs lung function all clear

Yes I am obese I’ve gained 4 stone in 3 years without eating any different periods randomly stopped last year too when I started gaining abdominal weight

I take t3 too have done for over a year now so if it does improve GH it’s not helped mine!

[Wired123 in reply to Fox78]

Your situation is not dissimilar to mine.

If MRI shows empty sella (ie, reduced/non-existent pituitary gland) then push for the ITT as it’s considered the “gold standard” test. You can Google more info on the test.

That can determine if you have GH deficiency.

Now going back to obesity I too gained a lot of weight after becoming hypo.

Endo was umm-ing and ahh-ing over GH treatment because his view was that obesity could be a factor. Therefore his preference was to try lose weight and see if GH levels resolve rather than add another drug/hormone in the mix as all hormones have side effects too. GH injections can also cause weight gain so it can just lead to a negative spiral too so I was pleased at the Endo’s caution rather than hitting the injection straight away.

Now the difficult part is how to lose weight. We all know the theory but in practice it’s hard when you have low mood, low energy and cravings - all too common in us hypos.

Let’s see what your results are and if on T3 and T4 combo you can lose some weight. I’ve actually gained a stone on combo and my new Endo thinks too much T3 can raise appetite so we are trying with a reduction of T3 now.

Hope the above helps, happy to help any more if I can.

[Wired123 in reply to Wired123]

Also ask for investigation for PCOS especially if you’re missing periods now.

Again Google this and see if you have symptoms and write them down to discuss with Endo. There’s also images online of PCOS visual signs which can also be useful - things like facial shape, etc.

[Fox78 in reply to Wired123]

Thank you Dk123

That’s really helpful

So just to give you a quick overview on me yes I do have PCOS was confirmed two years ago I’m under a consultant for this too.. think I’ve probably had this for years I’ve had an ultrasound which confirmed multiple follicles on both ovaries high testosterone etc I’m 43 next week and they say I’m not perimenopausal

I was taking metformin but I stopped this about two months ago as I just don’t see it’s doing anything I still get hair (not much) and it never regulated my periods all it did was give me terrible bloating even on the slow release

I am pre diabetic too but my blood sugars do swing quite a lot from quite high to low which is why the endo said about an igf-1 test in the first place

They’ve done numerous tests as i mentioned previously so everything related to hormones they’ve even included things like MEN etc

I’ve also had a dexamethasone and 24hr urine for cushings which was negative even though I have a lot of symptoms like stretch marks which came from no where weight gain buffalo hump loss of muscle exercise intolerant etc

I also have the dio2 gene abnormality so they give me t3 on the nhs I have been taking armour though recently the past 6 months to see if this would help

It’s helped marginally but not enough to keep it up as i was getting it private and to be fair I don’t think my thyroid is the issue a lot of my thyroid symptoms like dry hair constipation have gone since being on combination therapy

I put the weight on before I started taking t3 /t4so again not sure it’s that I’ve not really lost much maybe half a stone

They have now started me on saxenda but I stopped taking it as I felt ill and I don’t want to add to my symptoms!

So yes not sure really I’m kind of clinging to the hope that it’s possibly low GH as it explains my symptoms and so far nothing else has shown up on the blood tests I have had done

[Wired123 in reply to Fox78]

It’s quite tough and you have a lot going on.

Can be quite chicken and egg. Hunger causes weight gain which causes high insulin which increases hunger. Vicious cycle.

You need a doctor who will take the time to consider all the various things you’ve got going on and come up with a treatment plan.

You need to be careful with stuff like metformin and saxenda as your sugars can go up if you stop them suddenly.

Do you have medical insurance or savings to go privately? Might be worth finding a good doctor who will look at you properly and give you enough time to explore fully. Sadly NHS doctors are time constrained and can’t spend enough time on complex issues. Get all the tests done on NHS and see where you get to, if no joy you can take copies of results to a private doc for their opinion and it won’t cost much.

[Fox78 in reply to Wired123]

I’ve already been private and he didn’t do anymore than the nhs to be honest :/ I’ve been to a few people over the years

They initially thought I was diabetic as my fasting was high ish and my ogtt was just above range and as soon as the private endo knew that he blamed it all on my diabetes..now they are saying I’m not as my last few hba1c have come back in normal range and that was never in diabetic range in the first place!

Then I’ve also seen dr boardman at warwick who gave me armour they just want to prescribe metformin for pocs which I don’t believe has helped me which I know it doesn’t help everyone

To be fair I’m quite clued up on it all as I’ve done my research and I have pushed for a number of tests like dexamethasone which I don’t think they’d have done if I hadn’t asked

But I know something else is going on as I just don’t feel right plus I keep getting dizzy spells runny nose especially the left side headaches for the past year but I’ve never really thought about it and thought these symptoms were anything relevant until they mentioned a pituitary adenoma which would make sense with my symptoms so we shall see

I really appreciate you taking the time to comment thank you

I will let you know what the mri says x

[Wired123 in reply to Fox78]

Could you HbA1C be fluctuating up and down due to meds like Metformin and/or dietary change.

DM me who you saw privately? May have a good female Endo for you but need to wait 2 weeks to see if she’s any good as someone I know is seeing her for PCOS. She has great reviews so far but want to see if she’s as good as the reviews.

[Fox78 in reply to Wired123]

I’ve sent a private message

[linda96]

I have growth hormone injections; diagnosed aged 67. I could barely move, legs were like stone, couldn't move, and everything was an effort, worse than ever brain fog and weight gain. Just before this I started to self source T3 which does not help if you have growth hormone issues. I don't have ACTH issues, as it seems the pituitary apoplexy left me ACTH but took most of the rest away.. My TSH is constantly 0.0005..

[Fox78 in reply to linda96]

Thanks Linda this is how I feel my thyroid levels are relatively stable but my tsh is non traceable too I noticed last year around March that I just felt worse than I had since being diagnosed 3 years ago hypo but put it down to Covid situation working from home etc

I gained so much more weight I’d already gained about 3 stone in 3 years but then just seemed to ballon my back being the worst I went up 3 bra sizes due to fat around my back and tummy

Feel knackered all the time even though I sleep 10-12 hour days

Feel exhausted just walking a while I do swim but it takes it out of me my legs feel like lead when I get out the pool

Bloating headaches dizzy spells periods stopped

So did you have a pituitary tumour?x

[linda96 in reply to Fox78]

I had an apoplexy in 1978, while pregnant. not diagnosed for 40 years.. not until I pressurised one of my Drs for more answers.

It’s assumed it was a prolactinoma that burst.

[Fox78]

Ok thank you

I will see what the results of the mri say