Low testosterone
Discussion
With thanks to someone on here who made comments about low-T in another thread on another matter, I was diagnosed with low testosterone about a week ago. I've been referred to endochinology (sp?) and have an appointment at the end of June.
Symptoms:
- basically dog tired, not helped by sleeping badly, and up for the loo in the night once or twice
- lacking energy, enthusiasm, drive, motivation, pizzaz, whatever
- weight gain and hair loss apparently, so I've had it since my early 20s then
- very short tempered and irritable, and in a fairly constant state of stress which I had just put down to work / kids / skint / crap car / 20 more years to retirement
As a result of quite a few concussions over my life, I was diagnosed with post concussive syndrome a few years back, had cognitive assessment, helped me understand my brain shortfalls and had counselling to work around those as best I can. However it has potentially masked some of the low-T symptoms like tiring easily, lacking motivation, depressive symptoms. So I'm not sure what to expect a new me could look like if low-T can be treated (my PCS can't be, really).
I've also got a gastric problem, stomach acid and a touch of Barrett's around the oesophagus (checked every 5 years, next one in July). I take esomeprazole which seems to counter the acid production and I have no real issues with my stomach apart from the fact it's growing quickly at the moment
but the reason I raise it is that I'm having two bowel movements per day at the moment, which never used to be the case. Frequently am aware of my stomach and often feels like I'm an hour away from another poo, even if I've not long been.
Got the doc to also do bloods to check for prostate, come back negative. (also checked vitamins, cholesterol, diabetes, basic blood count - all ok).
So the concern I guess is that I am a bit suspicious about the prostate and the multiple stools, frequent urination. Can the low-T result be masking another issue with the prostate? Would it normally cause increase in bowel movements? And if there's any doubt around the prostate, does that preclude low-T treatment as I read somewhere?
Anyone had low-T treatment? What did it consist of? How soon did you feel any benefit? Any hilarious side effects?
Symptoms:
- basically dog tired, not helped by sleeping badly, and up for the loo in the night once or twice
- lacking energy, enthusiasm, drive, motivation, pizzaz, whatever
- weight gain and hair loss apparently, so I've had it since my early 20s then
- very short tempered and irritable, and in a fairly constant state of stress which I had just put down to work / kids / skint / crap car / 20 more years to retirement
As a result of quite a few concussions over my life, I was diagnosed with post concussive syndrome a few years back, had cognitive assessment, helped me understand my brain shortfalls and had counselling to work around those as best I can. However it has potentially masked some of the low-T symptoms like tiring easily, lacking motivation, depressive symptoms. So I'm not sure what to expect a new me could look like if low-T can be treated (my PCS can't be, really).
I've also got a gastric problem, stomach acid and a touch of Barrett's around the oesophagus (checked every 5 years, next one in July). I take esomeprazole which seems to counter the acid production and I have no real issues with my stomach apart from the fact it's growing quickly at the moment
but the reason I raise it is that I'm having two bowel movements per day at the moment, which never used to be the case. Frequently am aware of my stomach and often feels like I'm an hour away from another poo, even if I've not long been.Got the doc to also do bloods to check for prostate, come back negative. (also checked vitamins, cholesterol, diabetes, basic blood count - all ok).
So the concern I guess is that I am a bit suspicious about the prostate and the multiple stools, frequent urination. Can the low-T result be masking another issue with the prostate? Would it normally cause increase in bowel movements? And if there's any doubt around the prostate, does that preclude low-T treatment as I read somewhere?
Anyone had low-T treatment? What did it consist of? How soon did you feel any benefit? Any hilarious side effects?
Oh I should probably add.
Result was about 5.4 and I understand normal range is 8ish to 20ish.
I'm 48, 6'3", 109kg (I was 98kg ten months ago - but it's been hard to keep the weight down for the last decade, and feels like I'm gaining weight quicker these days).
My wife, once she heard symptoms, reckons I may have had low-T for several years and I tend to agree.
Result was about 5.4 and I understand normal range is 8ish to 20ish.
I'm 48, 6'3", 109kg (I was 98kg ten months ago - but it's been hard to keep the weight down for the last decade, and feels like I'm gaining weight quicker these days).
My wife, once she heard symptoms, reckons I may have had low-T for several years and I tend to agree.
272BHP said:
FNG said:
Oh I should probably add.
Result was about 5.4 and I understand normal range is 8ish to 20ish.
I'm 48, 6'3", 109kg (I was 98kg ten months ago - but it's been hard to keep the weight down for the last decade, and feels like I'm gaining weight quicker these days).
My wife, once she heard symptoms, reckons I may have had low-T for several years and I tend to agree.
That is really low, if you get a similar level on a subsequent test and there are no other underlying factors you are desperately in need of help. Result was about 5.4 and I understand normal range is 8ish to 20ish.
I'm 48, 6'3", 109kg (I was 98kg ten months ago - but it's been hard to keep the weight down for the last decade, and feels like I'm gaining weight quicker these days).
My wife, once she heard symptoms, reckons I may have had low-T for several years and I tend to agree.
How are your finances? not many people get satisfactory care with low T from the NHS. If you could commit to around 60-100 a month to sort this out then there are private clinics that will give you much better treatment and ultimately better outcomes. I know quite a few people on TRT and they are all either go private straight away or they inevitably move over from the NHS to private care after a couple of miserable years.
Re sleeping - getting worse, I sleep terribly, permanently knackered. Work suffering. But am bot sure how much of this is due to head injury and how much is low-T. How much is because of low-T and how much is stress due to money and legals etc.
So am hoping some treatment soon will at least let me unpick the situation somewhat.
I thought it was worth waiting 6 weeks for nhs treatment because money is tight but if the treatment is then dog toffee then perhaps I should enquire about private. I’ll be honest 100 a month is a lot less than I would have expected.
Lots to think about, thanks for all the replies.
I take on board that seemingly the chances of decent NHS treatment are slim, plus the fact I went to the doc with my suspicions about low-T rather than him suggesting it, but given my endo appt is only 4 weeks away I think it's probably best to wait for that and see how I feel about the consultation and next steps before deciding private or giving NHS a chance.
It's good to be forewarned about how patchy it is - plus I'll be going in armed with decent info and the knowledge that if private is needed, it wouldn't be prohibitively expensive. But money is very tight, so I'm going to try the NHS route and see whether they're convincing.
I take on board that seemingly the chances of decent NHS treatment are slim, plus the fact I went to the doc with my suspicions about low-T rather than him suggesting it, but given my endo appt is only 4 weeks away I think it's probably best to wait for that and see how I feel about the consultation and next steps before deciding private or giving NHS a chance.
It's good to be forewarned about how patchy it is - plus I'll be going in armed with decent info and the knowledge that if private is needed, it wouldn't be prohibitively expensive. But money is very tight, so I'm going to try the NHS route and see whether they're convincing.
andyA700 said:
Back in 1995 (In my mid thirties) I was supposedly very fit (cycle racing) but started to get very tired, couldn't sleep well. Went to the doctor and he put me on T patches (Had to give up the racing temporarily). Within a couple of weeks using them I was getting irregular heart beat, so the GP stopped them. From 1996 to 2001, I became more tired went from 70kg to 100kg, gave up sport etc. I then discovered something online called Sleep Apnoea and challenged my GP about it. I was sent to a sleep clinic and they found I was stopping breathing during my sleep at the rate of 68 times per hour. The clinic put me on CPAP and I started sleeping properly. I now have much more energy, do a lot of walking etc.
I just hope the OP comes back, because a lot of what they said was applicable to my case.
I'm still here! Health Matters isn't in my favourites and I'm fI just hope the OP comes back, because a lot of what they said was applicable to my case.
ked if I can find how to add it, so I don't see the thread pop up until it occurs to me and I go looking. Not helped by post concussive syndrome which means my memory is dogst.My appointment is a week on Wednesday. I'm broadly expecting the consultant (hmmm, perhaps expecting too much already!) to be pretty clueless or outline how the target is to get me to 10-15nmol, and then go private so I have a chance of getting myself to the ideal level not a broad brush target level... but am prepared to give them a chance, hence waiting for the consultation.
Regarding sleep apnoea, I'm aware of it and have talked it through with my wife and my doctor in the past, and neither of them think I have it. Having said that, my sleep is worse in the last couple of years than it's ever been, so it may be a thing now.
One thing at a time though. Let's see what treatment for low-t does for me, then I have a chance of seeing how much of my current cognitive limitation is head injury, and if I'm still dog tired then I can start looking at my sleeping.
Well, appointment was today.
Doc heard all about my head injuries (I've had at least 6 concussions).
Checked out down below while I nonchalantly looked at the ceiling, all ok.
Bloods next week to check all hormone levels, to see if pituitary is working.
Commented that my result of 5.4 (or is it 5.6) is "slightly low" which caused alarm bells to ring.
Ultimately he thinks this all started around the age of 19 (I'm 48 now) as a result of my third concussion which was all wrapped up in being beaten severely in a random attack - cue depression, agrophobia, and high stress levels for a few years.
His summary:
- if the pituitary gland isn't working then he can look at supplementing hormones incl testosterone
- if it's working, I need counselling and/or other (unspecified) help to reduce stress levels, or live with it
So I understand the medical position, it's a two way cycle between pituitary and nads, the cycle's broken, need to determine if the gland has been mullered by me hitting my head off hard things repeatedly or whether it's ok and "just" that I've entered a vicious circle / downward spiral of low mood / anxiety / low sex drive / whatever, and it's perpetuated. I recognise that for a number of reasons I'm permanently in a state of stress to some extent or another, so this does seem plausible but I'm not convinced the most likely treatment route (counselling) is credible.
Am concerned at him calling 5nmol "slightly low" - given trans athletes need to be sub-10nmol for a year to be considered female surely 5 is very low?!
Am very concerned at the prospect of a recommended treatment being to reduce stress levels. I had counselling for about 2.5 years as a result of a post concussive syndrome diagnosis and it's helped enormously but still my symptoms of low-T have got worse; I honestly don't see how repeating that is going to be transformational.
So I suspect the answer is "go private" which will kick start me into feeling better and get into a positive loop, and I'm starting to research that now, but would welcome any other comments / experiences that could help, or correct me if my analysis of today's meeting is wrong.
Doc heard all about my head injuries (I've had at least 6 concussions).
Checked out down below while I nonchalantly looked at the ceiling, all ok.
Bloods next week to check all hormone levels, to see if pituitary is working.
Commented that my result of 5.4 (or is it 5.6) is "slightly low" which caused alarm bells to ring.
Ultimately he thinks this all started around the age of 19 (I'm 48 now) as a result of my third concussion which was all wrapped up in being beaten severely in a random attack - cue depression, agrophobia, and high stress levels for a few years.
His summary:
- if the pituitary gland isn't working then he can look at supplementing hormones incl testosterone
- if it's working, I need counselling and/or other (unspecified) help to reduce stress levels, or live with it
So I understand the medical position, it's a two way cycle between pituitary and nads, the cycle's broken, need to determine if the gland has been mullered by me hitting my head off hard things repeatedly or whether it's ok and "just" that I've entered a vicious circle / downward spiral of low mood / anxiety / low sex drive / whatever, and it's perpetuated. I recognise that for a number of reasons I'm permanently in a state of stress to some extent or another, so this does seem plausible but I'm not convinced the most likely treatment route (counselling) is credible.
Am concerned at him calling 5nmol "slightly low" - given trans athletes need to be sub-10nmol for a year to be considered female surely 5 is very low?!
Am very concerned at the prospect of a recommended treatment being to reduce stress levels. I had counselling for about 2.5 years as a result of a post concussive syndrome diagnosis and it's helped enormously but still my symptoms of low-T have got worse; I honestly don't see how repeating that is going to be transformational.
So I suspect the answer is "go private" which will kick start me into feeling better and get into a positive loop, and I'm starting to research that now, but would welcome any other comments / experiences that could help, or correct me if my analysis of today's meeting is wrong.
Edited by FNG on Wednesday 30th June 13:04
Thanks for the feedback, good to know it’s pretty normal and a bit st. Means there’s room for improvement 
My answers to all the questions will have indicated low-T and the numbers don’t lie either - but he fixated on my head injuries and I think convinced himself that’s the reason for low-T.
While that’s highly probable, it’s naive in the extreme to hear that the patient has had years of counselling, but still got worse, and then advise that the patient needs counselling…
To me, it’s in their hands to kick start the system again with injection or gel. Trying to find root cause is lovely but I’m not a lab rat, I’m a patient looking for a viable solution not a recommendation to talk about it and / or change everything in my life so I don’t encounter stress. Even if that was possible.
We will see what the pituitary tests say. But I think I know where this is heading so I may as well get making alternative contacts ASAP.
t. Means there’s room for improvement My answers to all the questions will have indicated low-T and the numbers don’t lie either - but he fixated on my head injuries and I think convinced himself that’s the reason for low-T.
While that’s highly probable, it’s naive in the extreme to hear that the patient has had years of counselling, but still got worse, and then advise that the patient needs counselling…
To me, it’s in their hands to kick start the system again with injection or gel. Trying to find root cause is lovely but I’m not a lab rat, I’m a patient looking for a viable solution not a recommendation to talk about it and / or change everything in my life so I don’t encounter stress. Even if that was possible.
We will see what the pituitary tests say. But I think I know where this is heading so I may as well get making alternative contacts ASAP.
Something interesting in both those abstracts. Thanks for posting them.
The first says treatment for low T can help reduce obesity by improving motivation and energy levels, which gets the patient exercising and eating well and therefore losing weight and thereby naturally increasing T level. Definition of a virtuous circle.
I’ll be honest this is what I am hoping I can use against a reluctant doctor who thinks counselling is the answer - whereas I reckon an external kick start to increase motivation and energy sounds more likely to be a goer.
The second says low-T treatment can exacerbate untreated sleep apnoea, so something very much to be aware of when undergoing low-T treatment.
As I wake up many times a night I’m keeping an open mind about sleep apnoea. But I wake up 20-30 times a night and I know I do - whereas I was under the impression that apnoea means you wake up many many times, but don’t realise it.
The first says treatment for low T can help reduce obesity by improving motivation and energy levels, which gets the patient exercising and eating well and therefore losing weight and thereby naturally increasing T level. Definition of a virtuous circle.
I’ll be honest this is what I am hoping I can use against a reluctant doctor who thinks counselling is the answer - whereas I reckon an external kick start to increase motivation and energy sounds more likely to be a goer.
The second says low-T treatment can exacerbate untreated sleep apnoea, so something very much to be aware of when undergoing low-T treatment.
As I wake up many times a night I’m keeping an open mind about sleep apnoea. But I wake up 20-30 times a night and I know I do - whereas I was under the impression that apnoea means you wake up many many times, but don’t realise it.
Update: got a reply from the consultant stating second blood test still shows a low figure but he doesn't say what it is, or if it's stable / increasing / decreasing.
Says the results suggest the pituitary gland is not responding to low-T, so has ordered an MRI scan next Tuesday... that sadly clashes with my mother in law's funeral. Waiting for another appointment which they reckon will be October...
Next consultant appointment is mid-September and he will be discussing treatment then either by gel or injection.
We are getting there slowly, but it is slowly. Long time to wait from GP diagnosis and I'm sure other sectors and regions of the NHS have much longer wait times.
So all I can say is if you have the means, do as others have recommended in this thread and go private straight away. If I had the means I'd be doing that myself even now, as I bet I'd be under treatment sooner even starting from scratch privately now, than starting via NHS a few months ago.
Says the results suggest the pituitary gland is not responding to low-T, so has ordered an MRI scan next Tuesday... that sadly clashes with my mother in law's funeral. Waiting for another appointment which they reckon will be October...
Next consultant appointment is mid-September and he will be discussing treatment then either by gel or injection.
We are getting there slowly, but it is slowly. Long time to wait from GP diagnosis and I'm sure other sectors and regions of the NHS have much longer wait times.
So all I can say is if you have the means, do as others have recommended in this thread and go private straight away. If I had the means I'd be doing that myself even now, as I bet I'd be under treatment sooner even starting from scratch privately now, than starting via NHS a few months ago.
craigjm said:
OP my first thought when you said you dont sleep well, up to the loo a couple of times in the night and are always tired plus your weight is that you may have sleep apnea and you might want to get a test. This can also lower your testosterone level and give you pretty much all the symptoms you talk about. If your neck is over 17 inches then its even more likely.
Thank you, you're not the first person to mention sleep apnoea.It's something I've been aware of for years and has never seemed to fit my sleep patterns. That said, it's only in the last year that my sleeping has got so bad (although it's been worsening for a few years which I put down to having 2 young children).
My wife doesn't think my sleeping fits the sleep apnoea range of symptoms either.
I'm now about 3 weeks away from the consultation, so the plan remains the same for the moment: get treatment underway, and see which symptoms are resolved as a result. I'm a great fan of not changing everything, and as I have a few medical issues ongoing I want to try to unpick them logically, even if it takes a fair bit of time, so that I know what the symptoms are for each. That way I have a better chance of knowing if a treatment isn't working as well as it used to, for example, or if it's no longer needed in due course.
If, once low-T treatment has taken effect, I'm still sleeping like I have one eye on the phone
then I'll be straight back to the doctors talking sleep apnoea to him.Boosted LS1 said:
I had similar (without the hair loss) and it was diagnosed as sarcoidosis, I have hypercalcemia and had hypercalciuria which had me peeing a lot during the night. Hope you get sorted OP.
Thanks. Was that a correct diagnosis?Update day! MRI this morning, and consultant phone call this afternoon.
I don't have any mobile reception at home, so I made sure to call the department to ensure they called my landline, not my mobile.
Anyone care to guess what's happened?
I've just deleted the rant that followed, because the doctor did just call me back on the landline, after switchboard told me "computer sez no".
Doctor was helpful and informative, said the pituitary looked slightly small if anything, certainly not inflamed. Not sure what damage they were expecting to see, or what size a damaged gland is, but there we are.
We ran through gel vs injection, I've gone for injection on a 3-week interval to start with and see if it's for me. After 4 months we check bloods and see where we are. Possibly adjust dose, possibly move to 12-week injections (from what's been said on here, with the injection lasting 10 weeks, I'm not that keen but let's cross that bridge later). The idea behind 3 week intervals to start with is if there's any adverse reaction or side effects, they're not with me for 3 months but 3 weeks. Seems fair enough.
Dunno if that's the best route. Dunno if I'll be too chuffed should the initial dosage be too low and I've got 4 months til it's checked and adjusted. Don't know how much of my low-T symptoms are actually due to head injury.
But at least as of next week I will start finding out.
Edited by FNG on Wednesday 15th September 15:19
V6 Pushfit said:
How did OP get the interest from the GP here?
I’ve had multiple tests - blood, CSF, urine etc for investigation into an issue I have and despite some coming back out of normal range all I get is a shrug of the shoulders and a ‘nothing of concern’ type response !
I’ll look up my T later but in may it was like OP’s and the urologist involved didn’t even mention it I had to point out it’s low is that a problem and the question got fobbed off.
Sorry for not replying, I don't pop in very often.I’ve had multiple tests - blood, CSF, urine etc for investigation into an issue I have and despite some coming back out of normal range all I get is a shrug of the shoulders and a ‘nothing of concern’ type response !
I’ll look up my T later but in may it was like OP’s and the urologist involved didn’t even mention it I had to point out it’s low is that a problem and the question got fobbed off.
Simple answer is I have a number of other conditions which means I see a GP quite often, and try to make sure it's the same one. After ten years he knows I am not going to go away quietly and he knows that I don't waste his time.
So when I went in there prepared with what I thought the problem was, he agreed to tests. When he got the results, he recognised it was outside his expertise and so referred me to an endo.
The endo, however, is as useless as the majority of them seem to be (in that they don't do a lot of low-T work, and are mostly there for menopause issues etc) and concentrates solely on the numbers, not on the symptoms. Take bloods after a course of treatment, adjust dosage to achieve 15nmol. That's the job jobbed as far as they're concerned. I get the feeling they are scared s
tless that if they treat a patient to get him to a higher level of T, he'll go postal / start looking at peoples pints in pubs / kill his extended family, and then they'll be on the hook - being asked Hard Questions while the hospital manager Learns Lessons.I did get an MRI to see if the pituitary gland is functioning, but didn't get a clear answer as to whether it was or not.
I started on injections but they weren't working well for me - tailing off towards the end of the period "oh no that doesn't happen" sigh, ok lets go to gel then. Which does work in that I have been able to adjust the dose to the point I feel is the right balance for me, but I've no idea what my blood results are as last time out I was due a phone consultation, it didn't happen. Then I was told they needed bloods doing, and were going to send me the details of what tests were being done, to give to the blood nurse. Which hasn't happened, after repeat chases.
So I've decided f
k it I'll stick with self prescribing my levels until I can afford to go private and get it done properly by someone who listens to symptoms in preference to targeting a blood value.I wanted to go NHS and force them to do a proper job of it by being informed and telling them what I want, not them telling me what's going to happen. This is the only way to get a consultant to do anything useful in my experience and it's generally served me well enough. But I've failed and while it's only partly the endo not being a low-T specialist and partly just NHS secondary care being bloody useless, nevertheless I've given up on that route.
TL;DR: don't bother with the NHS if you possibly can. All else you've read here about that route is true. And if you can't avoid them, go for the gel and get it on repeat. At least then you can achieve your own suitable levels by trial and error, which should have a better outcome than relying on the womens health specialist at the local hospital.
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