Anyone on TRT?

Author
Discussion

anonymous-user

Original Poster:

61 months

Sunday 25th August 2019
quotequote all
I'm currently undergoing testing and after a long while I'm at the stage where I'm off for an MRI scan next weekend for a pituitary check for ruling out a tumour.

Without a full insight into my problems one of them is low T and its associated symptoms.

Consultant reckons TRT can be given to alleviate things and get me feeling normal again.

While this all sounds great I'm always one who researches real world side effects rather than the endless list of possible effects listed in a disclaimer style.

I remember a friend having to be treated with steroids years ago for some totally different issue and within weeks he'd blown up like a balloon - hamster face et al.

So, what can I expect if I go on this topical gel? Will I just start to function again and all be well? Or will I end up looking like violet beauregarde with a load of other unwanted side effects?

Any feedback from people actually taking it in some form would be greatly appreciated.

TIA

Four Litre

2,109 posts

199 months

Tuesday 27th August 2019
quotequote all
Yes! for 2 years now. Think your confusing medical steroids with 'royds!

I have a tumour which stopped the signal going out from the Pituitary, hence being on injections. Im not sure if your private or NHS, be aware that the treatments from the NHS are nowhere near as good as going private as this seems to be an area that the NHS really dont understand very well.

Once your treatment starts to work you should notice loss of body fat, increased cognative function, lack of joint pain, increase in strenght and turning into a sex maniac again - both a gift and curse!

I suffered for years due to the NHS not bothering / understanding the condition. Feel free to PM me if you like as I can reccomend a very good clinic which may save you months of messing around if your going to the wrong person. If your doc mentions taking Nebido, run a mile! Its the NHS weapon of choice and as a TRT replacement its far down the list (works for very few). Again I wasted half a year on this crap!

budgie smuggler

5,539 posts

166 months

Tuesday 27th August 2019
quotequote all
Not on it yet, but in the process of trying to get on it (or solve whatever the underlying problem is).

I'm age 34 and my last reading was 7.9ng/dl and the NHS have simply washed their hands of me and said there is nothing they will do.
I said to the doctor basically that I understand why they need numerical guidelines but I didn't come to you telling you my number was wrong, I came to you with symptoms. And it's those I want to treat. But it seems to be a black and white yes/no based on the number.

I do have private cover through work so may pursue that as my next attack.


smiffy180

6,021 posts

157 months

Tuesday 27th August 2019
quotequote all
I'm on the injection but had to go private.
I was fobbed off when my result was 1.92nmol and offered anti depressants as an alternative because I wasn't showing symptoms.
I wasn't aware of them because I've had low test for 8 years or so - 6-9nmol with the odd blip a bit higher.

Made such a difference and kinda wish I'd pushed it sooner, private however cost a fair bit but at least I'm getting sorted.

budgie smuggler

5,539 posts

166 months

Wednesday 28th August 2019
quotequote all
smiffy180 said:
I'm on the injection but had to go private.
I was fobbed off when my result was 1.92nmol and offered anti depressants as an alternative because I wasn't showing symptoms.
I wasn't aware of them because I've had low test for 8 years or so - 6-9nmol with the odd blip a bit higher.

Made such a difference and kinda wish I'd pushed it sooner, private however cost a fair bit but at least I'm getting sorted.
How does that work with the ongoing costs of the injections? Are you now paying for the treatment yourself forever?

Halb

53,012 posts

190 months

Wednesday 28th August 2019
quotequote all
ears

8Ace

2,759 posts

205 months

Wednesday 28th August 2019
quotequote all
Raises hand.

With three young children, having no energy was normal, but it was when the hot flushes started that I began to get worried. Had a few blood tests and my T level was 3, about what you'd expect from a 95 year old. It had also started to affect my bone density (not THAT bone) so I now take calcium to top it up a bit.

I was able to go privately and was prescribed TestoGel and it's made a great difference. I've probably put on a stone in muscle, I'm much less lethargic and I'm up more quickly in the morning, in all senses of the word.

I'm now on Tostran and I don't like it to be honest as it takes ages to dry. Nebido I tried once and it was rubbish. Didn't absorb it at all and after 2 weeks I had the hot flushes again meaning my level was plummeting towards single figures.

As your body is getting the T from elsewhere, it doesn't need to produce any so there is , er, shrinkage, but who cares. I suspect it'll mean I need to be on this for ever, but I'm not bothered about that.

Four Litre

2,109 posts

199 months

Wednesday 28th August 2019
quotequote all
budgie smuggler said:
Not on it yet, but in the process of trying to get on it (or solve whatever the underlying problem is).

I'm age 34 and my last reading was 7.9ng/dl and the NHS have simply washed their hands of me and said there is nothing they will do.
I said to the doctor basically that I understand why they need numerical guidelines but I didn't come to you telling you my number was wrong, I came to you with symptoms. And it's those I want to treat. But it seems to be a black and white yes/no based on the number.

I do have private cover through work so may pursue that as my next attack.
My advise to all is to go private. From bitter experience the NHS has no clue about this treatment and will be happy to see your life fall apart. I battled on for years being told nothing was wrong, turned it they hadnt even bothered doing the tests.

anonymous-user

Original Poster:

61 months

Wednesday 28th August 2019
quotequote all
thank you all for chipping in guys.

It's been a long road for me that resulted in the most productive referral (eventually) to an endocrinologist at the local hospital.

After numerous blood tests and appointments then the current state of affairs is that I have 3 X-ray booked - this Sunday (MRI pituitary scan) Monday (DEXA scan) and Tuesday (Midriff)

Endo has said once the MRI is done and looks OK then I can immediately go on the T Gel and has written to my GP stating so.

Soooo hopefully in a few weeks I'll be back on form.

Googling the symptoms of the pituitary tumour then I've got a lot of them including the low t at 3.

I can't wait to be honest as I've been feeling st for a good while now. I'm just concerned about side effects.

I'm one of those that tends to get them with most medications mad

anonymous-user

Original Poster:

61 months

Wednesday 28th August 2019
quotequote all
Four Litre said:
Yes! for 2 years now. Think your confusing medical steroids with 'royds!

I have a tumour which stopped the signal going out from the Pituitary, hence being on injections. Im not sure if your private or NHS, be aware that the treatments from the NHS are nowhere near as good as going private as this seems to be an area that the NHS really dont understand very well.

Once your treatment starts to work you should notice loss of body fat, increased cognative function, lack of joint pain, increase in strenght and turning into a sex maniac again - both a gift and curse!

I suffered for years due to the NHS not bothering / understanding the condition. Feel free to PM me if you like as I can reccomend a very good clinic which may save you months of messing around if your going to the wrong person. If your doc mentions taking Nebido, run a mile! Its the NHS weapon of choice and as a TRT replacement its far down the list (works for very few). Again I wasted half a year on this crap!
If it turns out I have a tumour then may I ask how it is treated and what other effects it has on your life?


cqueen

2,631 posts

227 months

Wednesday 28th August 2019
quotequote all
budgie smuggler said:
Not on it yet, but in the process of trying to get on it (or solve whatever the underlying problem is).
Try no fap for 10 days, see if your symptoms change

smiffy180

6,021 posts

157 months

Wednesday 28th August 2019
quotequote all
budgie smuggler said:
How does that work with the ongoing costs of the injections? Are you now paying for the treatment yourself forever?
Yeah but it's not too bad.
NHS almost point blank refused to help, only just had the pituitary scan done but she said they're unable to offer treatment because I'm unwilling to come off the private prescription for at least 12 weeks to see what happens even though they have 8 years of blood work.

Could be worse, at least I'm back to normal which I'm happy with.

budgie smuggler

5,539 posts

166 months

Wednesday 28th August 2019
quotequote all
cqueen said:
budgie smuggler said:
Not on it yet, but in the process of trying to get on it (or solve whatever the underlying problem is).
Try no fap for 10 days, see if your symptoms change
I have absolutely no interesting in sex or having a cheeky wk tbh and that's the clearest symptom for me. I would have regarded myself as high libido before now it's simply gone.

smiffy180 said:
Yeah but it's not too bad.
NHS almost point blank refused to help, only just had the pituitary scan done but she said they're unable to offer treatment because I'm unwilling to come off the private prescription for at least 12 weeks to see what happens even though they have 8 years of blood work.

Could be worse, at least I'm back to normal which I'm happy with.
Thanks thumbup

Halb

53,012 posts

190 months

Wednesday 28th August 2019
quotequote all
smiffy180 said:
Yeah but it's not too bad.
NHS almost point blank refused to help, only just had the pituitary scan done but she said they're unable to offer treatment because I'm unwilling to come off the private prescription for at least 12 weeks to see what happens even though they have 8 years of blood work.

Could be worse, at least I'm back to normal which I'm happy with.
How much was a test test private, Smiffy?

cqueen

2,631 posts

227 months

Wednesday 28th August 2019
quotequote all
budgie smuggler said:
I have absolutely no interesting in sex or having a cheeky wk tbh and that's the clearest symptom for me. I would have regarded myself as high libido before now it's simply gone.
Ah okay fair enough then.

smiffy180

6,021 posts

157 months

Wednesday 28th August 2019
quotequote all
Halb said:
How much was a test test private, Smiffy?
They're about £20/30 for testosterone only but I'd get the full hormone profile for £40/50.
I've also had the full works for about £150 which helped push for the scan as some markers were normal which ruled out 1 issue.

Also I'd use a proper blood sample one, I don't think a fingerprick one will provide enough blood for accurate results.
Medichecks who I've been using are also doing something with the NHS so blood samples are free whereas previously it was £5 at my local hospital.

Four Litre

2,109 posts

199 months

Thursday 29th August 2019
quotequote all
lord trumpton said:
Four Litre said:
Yes! for 2 years now. Think your confusing medical steroids with 'royds!

I have a tumour which stopped the signal going out from the Pituitary, hence being on injections. Im not sure if your private or NHS, be aware that the treatments from the NHS are nowhere near as good as going private as this seems to be an area that the NHS really dont understand very well.

Once your treatment starts to work you should notice loss of body fat, increased cognative function, lack of joint pain, increase in strenght and turning into a sex maniac again - both a gift and curse!

I suffered for years due to the NHS not bothering / understanding the condition. Feel free to PM me if you like as I can reccomend a very good clinic which may save you months of messing around if your going to the wrong person. If your doc mentions taking Nebido, run a mile! Its the NHS weapon of choice and as a TRT replacement its far down the list (works for very few). Again I wasted half a year on this crap!
If it turns out I have a tumour then may I ask how it is treated and what other effects it has on your life?
Very strange one as it all came to a head and I totally crashed out - collapsed at work and ended up laying on sofa for quite some time. The UK seem to treat tumous very differently to USA and seem very happy to leave in place if its not growing or touching the optic nerve. Ive ended up feeling generally ok but suffer a lot with extremely dry eyes and mouth, both of which cant be fully explained (one of the profs I see said they dont fully understand the relationship yet and hormones are extremely complicated, especially the relationship with the eyes) but my energy is a lot better. The dry eyes are quite a kiiler as driving over 15 mins is massively painful and pretty not possible . Ive pretty much exhausted all treatments the UK have (NHS and Private) so just hoping it improves slightly. The only other thing I notice is I get quite angry from time to time which again from speaking to other sufferers world-wide is also quite common, could be hormone inbalance or depression as it is quite limiting and constand eye pain is not for the faint of heart!

It turns out the endocrine system is so complex and very much in the earlier stages of being understood in comparison to other bodily systems. Ive seen so many docs, some plainy havent got a clue and other at least are honest. I have thought about going all out and travelling to the states and having it removed, but the killer is that you can have it taken out a it either fixes the problem (sometimes), does nothing or makes it worse! So a big gamble.

The NHS pretty much deny anything is linked to it, which is nuts, most of the time its because they wont admit they dont know, hence having to go private.




Scabutz

8,172 posts

87 months

Thursday 29th August 2019
quotequote all
I am on it. Testogel daily. Had the MRI scans etc and nothing was found so it was put down as unknown cause.

I haven't noticed that many side effects except one, well 1.5. The half is my balls are a bit smaller than they used to be, but not massively.

The main one is when first starting, then when my dose is adjusted it throws my mood and general feeling about. Have had to take a couple of days of work because of it. But that passes in a few days and then its all good.


xx99xx

2,251 posts

80 months

Friday 30th August 2019
quotequote all
Also on testogel here. To cut a long story short, it took about 10 years through the NHS with blood levels ranging from 3-13 over the years. My previous GP who I'd only seen once about this issue put me on testogel straightaway, no endo referrals. Had a repeat prescription ever since, about 3 years now.

I suppose the only downside of letting the GP handle this is that they do not do any monitoring of bloods or investigation into cause. They're fine with me asking for an annual blood test though.

I have the usual side effect of ball shrinkage but that is of no concern. Ball shrinkage also = infertility so bear that in mind if that's an issue. Some people report excessive hair growth at application site but I've not had that. I've had some excessive hair loss from my head but unsure if that is due to testogel. I did find that the positive effects can wear off after a while so rather than increase my dose, I stopped using it for a few months and then restarted. The few months were unpleasant but got the positive effects back once restarted.

Testogel is better than Testim gel and from what I've read from others, injections are better than gels.

Four Litre

2,109 posts

199 months

Friday 30th August 2019
quotequote all
xx99xx said:
Also on testogel here. To cut a long story short, it took about 10 years through the NHS with blood levels ranging from 3-13 over the years. My previous GP who I'd only seen once about this issue put me on testogel straightaway, no endo referrals. Had a repeat prescription ever since, about 3 years now.

I suppose the only downside of letting the GP handle this is that they do not do any monitoring of bloods or investigation into cause. They're fine with me asking for an annual blood test though.

I have the usual side effect of ball shrinkage but that is of no concern. Ball shrinkage also = infertility so bear that in mind if that's an issue. Some people report excessive hair growth at application site but I've not had that. I've had some excessive hair loss from my head but unsure if that is due to testogel. I did find that the positive effects can wear off after a while so rather than increase my dose, I stopped using it for a few months and then restarted. The few months were unpleasant but got the positive effects back once restarted.

Testogel is better than Testim gel and from what I've read from others, injections are better than gels.
Just to let you know - if you take HCG its stops your ball shrinking!!! You wont get this on the NHS though, only private.