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Testosterone replacement therapy in men - experiences?


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#1 Paddlepop

Posted 22 September 2019 - 09:23 PM

Does anyone have experience with a man in their life having testosterone replacement therapy (TRT)? My DH's testosterone is low, and we're seeing a GP tomorrow to find out the next steps in diagnosis/treatment of it. I'm interested in others' experiences, or any knowledge that anyone has to share about.

Some questions in particular I'm wondering about are:

- Were tests done to determine the cause of the low testosterone or did they just undergo TRT with no exploration of the cause?

- What specialist did they see? Urologist? Endocrinologist? (PM recommendations of good ones in Brisbane are welcome!)

- How long did they undergo TRT?

- Side effects of TRT?

- Things we should ask the GP about?

- How long until your low testosterone man was back to his usual self in terms of mood, energy, strength, etc.?

Thanks.

#2 purplekitty

Posted 22 September 2019 - 09:32 PM

Controversial unless proven hypogonadism.
It is being prescribed outside recommendations in the last few years.

#3 Paddlepop

Posted 22 September 2019 - 09:38 PM

pk: Why is it controversial? I'm new to anything to do with low testosterone.

#4 purplekitty

Posted 22 September 2019 - 09:50 PM

View PostPaddlepop, on 22 September 2019 - 09:38 PM, said:

pk: Why is it controversial? I'm new to anything to do with low testosterone.
As far as I know there wasn't evidence that it was useful except in hypogonadism which isn't just low testosterone results.

There are risks to testosterone supplementation.

I would discuss it with your GP.

#5 Paddlepop

Posted 22 September 2019 - 10:53 PM

pk: Wasn't that when healthy older men were given supplementation to see if they'd feel better, in the absence of low testosterone? They had a marginally improved libido but that was all. Not enough benefit to justify the risks of routinely supplementing older men. In this case I think older was defined as over 60 or 70yo.

#6 zenkitty

Posted 22 September 2019 - 11:12 PM

I’d ask for a referral to an endocrinologist, I don’t think a GP will be fully across all of the potential causes and issues (nothing against GPs, but I think hormonal supplementation is worthy of a specialist).

#7 purplekitty

Posted 22 September 2019 - 11:24 PM

View Postzenkitty, on 22 September 2019 - 11:12 PM, said:

I’d ask for a referral to an endocrinologist, I don’t think a GP will be fully across all of the potential causes and issues (nothing against GPs, but I think hormonal supplementation is worthy of a specialist).
I agree.

#8 Acidulous Osprey

Posted 22 September 2019 - 11:31 PM

I think you have me blocked but if you want I can recommend a couple of excellent endos in Brisbane.  No way would I use a GP for this.

#9 Paddlepop

Posted 22 September 2019 - 11:43 PM

AO: I've unblocked you. I'd really appreciate the names of the endos that you could recommend. Thank you.

#10 born.a.girl

Posted 23 September 2019 - 06:22 AM

Endocrinologist definitely.  I know heaps of people from a health board on it, who are mostly panhypo though. (Zero pituitary function.) You'd know if you were panhypo, so I'm not suggesting for a second that it's that.  They do find an amazing difference with it, but because it's not relevant to me, I've not been involved in any discussions about the downside.

#11 Kallie88

Posted 23 September 2019 - 09:36 AM

Following because we need to know about this too. Dh has had blood tests that show very low testosterone twice now (once when initially ttc 4 years ago and once this year to get a referral). I'm pretty sure his referral was to an endocrinologist but he hasn't got around to using it yet so he probably needs another and to actually deal with this soon 🙄 i've heard (though I'd like to find better sources) that not getting replacement hormones when it's abnormally low can also have long term negative side effects.

#12 purplekitty

Posted 23 September 2019 - 12:21 PM

Interpretation of results,being up to date with current research and recommendations and clinical diagnosis is what Physicians get paid the big bucks for.

#13 Paddlepop

Posted 23 September 2019 - 09:05 PM

GP ordered a bunch of tests for DH today, and gave us a list of about 7 endos to contact for an appointment. Once we choose one she'll do a referral. I'll be ringing the endos tomorrow to find out their waiting times.

Blood tests for testosterone and cortisol; x-ray of chest; echocardiogram of heart; and CT of abdomen and adrenal glands. Tests are booked for tomorrow and Wednesday. Depending on those results the GP will order more tests.

Turns out that TRT can't be prescribed by GPs. It has to be done by a specialist. So women can have HRT prescribed by a GP but men have to see a specialist. Actually, not quite true. If GPs prescribe TRT it won't attract rebates from Medicare/PBS and will be billed privately and is apparently very expensive.

#14 sqawk

Posted 23 September 2019 - 09:36 PM

Only an endo can prescribe
The key blood test are morning testosterone (0800), and 3 pituitary hormones LH, FSH and prolactin.
The chest XR, CT and echo are not investigations for low testosterone. They may have been ordered to investigate other issues/symptoms.
The endo will investigate for a cause

#15 Paddlepop

Posted 23 September 2019 - 09:41 PM

He has symptoms of Cushing's and Addison's, so yes the GP is investigating other things at the same time. I'll ask about those three hormones at the next appointment, thank you for mentioning them.

#16 halcyondays

Posted 23 September 2019 - 09:46 PM

Reandron injections TRT cost about $114 and lasts about 12 weeks. Kliovance/kliogest HRT cost 39 a month roughly and the old progynova/provera HRT together cost about $28 monthly. On private scripts.
Not much difference in cost without pbs subsidy.

The restrictions on testosterone prescribing is because it was/is incorrectly over prescribed leading to a big problem with androgen misuse.
Once the endo decides testosterone is needed, a gp or any other doctor can do the continuing scripts.

#17 coolbreeze

Posted 23 September 2019 - 11:44 PM

happy if you pm me about this. I may be able to give you some advice regarding my dh personal experience re low testerone and treatment.
CB

#18 born.a.girl

Posted 24 September 2019 - 06:14 AM

View PostPaddlepop, on 23 September 2019 - 09:41 PM, said:

He has symptoms of Cushing's and Addison's, so yes the GP is investigating other things at the same time. I'll ask about those three hormones at the next appointment, thank you for mentioning them.


Cushings AND Addison's?

#19 purplekitty

Posted 24 September 2019 - 12:24 PM

View PostPaddlepop, on 23 September 2019 - 09:41 PM, said:

He has symptoms of Cushing's and Addison's, so yes the GP is investigating other things at the same time. I'll ask about those three hormones at the next appointment, thank you for mentioning them.
Who has observed this?
What was the GP looking for who ordered the original tests that found low testosterone levels?
I'm a bit confused about the timeline.

I wouldn't want management except by a specialist Physician.

#20 Paddlepop

Posted 24 September 2019 - 01:50 PM

View Postborn.a.girl, on 24 September 2019 - 06:14 AM, said:

Cushings AND Addison's?

Yes. Hard to tell them apart on symptoms alone which is why he's now having a crapload of tests. He's been increasingly ill all year and now can barely function. Cushing's can cause Addison's once it's damaged the body enough.

View Postpurplekitty, on 24 September 2019 - 12:24 PM, said:

Who has observed this?
What was the GP looking for who ordered the original tests that found low testosterone levels?
I'm a bit confused about the timeline.

I wouldn't want management except by a specialist Physician.

DH and I have observed this, as well as the specialist who ordered the testosterone test. His usual GP refused to check testosterone because it's apparently a current fad for men to request testosterone tests. Never mind that perhaps men are finally being informed about their health and being proactive about it. It's not like women are questioned much if they want their hormone levels checked and feel like crap. But a man presenting with a myriad of symptoms, including erectile dysfunction and zero libido? Nope, don't bother testing because fad. It's bullsh*t.

We'll get to a specialist physician but that's going to take months. In the meantime DH is getting tests done by a GP at our usual practice who actually listened to him yesterday and took him seriously, especially after reading the letter sent by the specialist who ordered the testosterone test and it also mentioned investigating adrenal and pituitary issues. No point in waiting to have the preliminary testing done when I know from experience that if you present at an initial specialist appointment with it all done that they can then get on with the actual diagnosing or specialised testing, and treatment.

DH is sick and getting sicker. We need to get him better ASAP. I hate seeing him suffering so badly.

#21 Paddlepop

Posted 24 September 2019 - 02:07 PM

DH is now booked into two endos. One doesn't want to take him on if it's mainly just for TRT so depending on these tests we might cancel that appointment. They recommended someone else if he does need TRT. The other one is taking over from a more experienced endo who is no longer taking new patients, and will do TRT if required.

#22 purplekitty

Posted 24 September 2019 - 03:10 PM

View PostPaddlepop, on 24 September 2019 - 01:50 PM, said:


DH and I have observed this, as well as the specialist who ordered the testosterone test.

Can this specialist follow the results up and refer you more quickly to the Endocrinologist?

The GP may not be right in this case but they are right that there has been inappropriate diagnosis requiring supplementation and treatment of low testosterone.

#23 Paddlepop

Posted 24 September 2019 - 03:21 PM

We're seeing an endo in either two weeks or three weeks, depending on the preliminary results and who DH wants to see. That seems pretty quick to me.

#24 purplekitty

Posted 24 September 2019 - 03:40 PM

View PostPaddlepop, on 24 September 2019 - 03:21 PM, said:

We're seeing an endo in either two weeks or three weeks, depending on the preliminary results and who DH wants to see. That seems pretty quick to me.
That's good then.

#25 Paddlepop

Posted 07 October 2019 - 06:39 PM

For anyone interested, we're off to the endocrinologist tomorrow. Hopefully he can give us some answers as to what's happening to DH's body. I've prebooked parking so we don't need to worry about getting a park near the specialist, and now I just hope that Extinction Rebellion's protests don't cause traffic delays tomorrow morning.

DH has low vitamin D. I asked the GP to check his vitamin D level and she wasn't very convinced but requested the test anyway. When DH rang her for the results she was genuinely surprised to find it was low. He's taking a supplement now. His PSA level has halved since it was last tested nearly 2 years ago. It's usually very steady so that's weird.

A repeat testosterone blood test showed low testosterone again. Cortisol was high but normal. Still waiting on the 24 hour urinary cortisol result. It's a public holiday here today and the GP didn't work on Friday otherwise we'd have it by now. Heart echo was perfectly normal and consistent with DH's age, which is a huge relief. Chest x-ray showed some bronchial inflammation but DH has had a cough which probably explains that. Abdomen CT showed normal adrenal glands, a few hernias DH didn't know about, and fatty liver which is no surprise, and everything else was normal.

DH is impatient for answers and to feel healthy again. He's being a bit of a grumpy a*s*hole about it even though I managed to get him an appointment so soon.

I really hope that the endo is a good one and treats DH well. We've had a bad run with specialists lately apart from the lovely rheumatologist who took him seriously and told the GPs to start looking for answers to why he's so tired and weak.




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