Hi guys I'm a 37 year old male and here is my story, sorry for being so long winded but it's been difficult trying to sum it all up! 6 months ago I was diagnosed with Low T. I went through a complete nightmare of getting a diagnosis. I was feeling fine about 2 years ago working overseas and was flying (commuting) alot. One flight I was coming in to land and felt that I had something like a stroke. Massive pain in the centre of my head and feeling really weird like I didn't know what was happening to me. Later that day I felt a bit better Gradually after this experience I noticed more fatigue, aching joints especially in hips and legs and finger joints. Dizzyness and light headed etc. This all coincided with getting laid off and I came back to the UK.
I wasn't working and was at home gardening, childcare etc. I felt that perhaps I had a bug or virus and would just get over it. Also I was hoping it would go away and I would start to feel better. After about a year I was feeling worse and it was getting me down. I was crying and called the GP to get seen.
Went in and had bloods done etc. The only thing that came back abnormal was my TSH at 6.3 they redid them and they kept coming back around the 4-6 area the range is <6 but they don't treat until greater than 10. The docs thought this was normal and I was imagining things.
I went back and they suggested maybe drinking too much or that I was depressed. I kept pushing them and then referred me to an endo (my GP's words were "Only referring you to shut you up and if you don't believe me you can believe him". They did further bloods that showed my prolactin to be too high (range 1-550 mu/L) mine was at 1200. They tested LH FSH and Testosterone
My LH/FSH was low 2.0 and 2.7 my T was 5.2 (range 11-36 nmol/L)
The endo suspected a possible pituitary tumour. I had an MRI scan and they couldn't see much. No visible tumour but the gland looked flattened not pea shaped. It wasn't very clear in the image. Hence my diagnosis with empty sella syndrome.
So the Endo said my prolactin was too low for a microprolactinoma and they would monitor it. He recommended TRT
about 5 months ago. I started on sustanon
250 every 3 weeks and was on it for 4 months until the sustanon worldwide dried up. No follow up bloods or anything had been done in the meantime. The endo's next appt was cancelled 3 times and I am due to see him in November (instead of August). My experience on sustanon was horrific. I felt awful about 30% of the time, really bad anxiety, panic, racing heart etc.
Been on Testogel for 4 weeks now and those panicky things have gone pretty much. Got my bloods checked before starting Testogel 5 days before my sustanon had run out. They came back with: Test
10.3 range 11-36
Prolactin in now 1966 (range 1-550)
estradiol 169 pmol/L
So it looks like my T was low while on Sustanon. Feel some of the Low T symptoms still on Testogel so the Doc has asked me to go back for more bloods to see how I am doing on 1 sachet a day. (Think he wants to try 2 a day after my bloods come back)
What I guess I am asking here is do you think my Prolactin is actually causing my Low T ? I cannot stand being on TRT. My doc was confused why this has been overlooked. I guess it's the usual NHS wait forever between appts and bloods and reappointments etc.
My testicles have shrunk over the last 4 months by about 30% and I really think that maybe if I get something like Cabergoline it may lower prolactin and actually let my boys work. (The endo said the results showed it wasn't my boys that were the problem but whats in my head).
I cannot believe that this option was not tried earlier. I mean it may be a long shot? but to pump me full of hormones and with no follow ups is pretty poor. I bet my dog would get better care at the vets!!
Going to try and push for it when I see my endo next. Do you think it's possible I can recover my Testicles? Will they offer HCG
? I do have kids and I have had the snip. Just hope that you guys have some good advice. Just as a sidenote.. My TSH has come down to 2.6 so I don't think its thyroid related anyway. No family history or antibodies etc.
What should I do guys and what are my chances of getting off TRT
and working again?
Sorry for the long winded post but it seems there really is no-one to talk to and the UK seems to really overlook mens hormone issues. But I have been an awful person at times, angry, moody, easily snap at people including my poor wife and kids. Plus my sex drive in only 20% of what it used to be.
When I look at it in laymans terms, I've been on treatment for 5 months and without follow ups etc t my T level is pretty much similar to where I started! And at least it was my own T !
I do realise that what I want and what the endo is willing to give may differ. But if need be I will self medicate if absolutely necessary to get right or at least better than I feel now.
Does anyone know of anyone else having improved by lowering prolactin?
Would my T recover naturally without HCG etc if my prolactin was dropped?
Could my e2 keep dropping if I kept on losing weight? I had put on all the fat and weight around my gut and I'm now about a 35 inch waist
Would my shrunken balls get bigger again and be enough to produce my own stuff? I will accept this TRT
as lifelong if it doesn't work out for me but it really does seem a second best approach.
Please any advice would be welcome.