I'm looking for anyone, UK primarily, who might have suffered with secondary hypogonadism, or knows a lot about it, whether they overcame it and how, who they might have gone to see (NHS or private), and what treatment they received that worked? In my case, what would you recommend?
I've been symptomatic for 3 years and have had a real rough time with the NHS, regardless of bloods and symptoms. Symptoms are:
- ED, no morning wood (restored with tadalafil)
- no libido
- general anhedonia
- tiredness and fatigue, unrefreshed sleep, headaches
- decreased strength, endurance and energy
- low mood made worse by ongoing NHS stress
Key endocrine results are:
- Testosterone: 5-8 nmol
- Calculated free T: 0.23 nmol
- SHBG: 10 nmol
- LH: 3.7 iu/l
- FSH: 2.5 iu/l
- Cortisol: 191 nmol (X2)
- DHEAS: 15.5 umol
- IGF1: 33.4 nmol
- Prolactin: 245 mu/l
- Insulin: 57, down to 40 recently
- Ferritin: 45 ug/L
- Serum alkaline phosphatase: IU/L
- Albumin: 44 g/l
- Oestradiol: 74 pmol
- Rheumatoid factor: 10 IU/mL
- Vit B: 241 pmol
- Vit D: 79 nmol
- Folate: 8.9 ug
- Erythrocyte sedimentation rate: 2mm/h
Other tests show that my thyroid is ok, I am not suffering inflammation, lipids are ok, full blood count and haematocrit are ok.
The reason I am writing this and asking is I am feeling very frustrated, at times not wishing to be alive, when these symptoms combine with the logistical nightmare I'm constantly going through.
I started with the NHS GP who just told me to lift weights more.
I was finally referred to an endocrinologist who took bloods, found IGF1 raised at the time and testosterone at 5, did repeats, which came in just within NHS guidelines and diacharged me. They never had cortisol, insulin, DHEAS. They never took SHBG into account.
I waited a long time for urology, who found my bladder doesn't empty properly. Suggested a vacuum pump. Referred me to Andrology.
Waited 6 months this year for that appointment. Checked in and was promised an upcoming appointment. Was administratively discharged without an appointment, communication or an accurate reason for discharge. Was told the letter back to Uro cited that I wouldn't be seen as I hadn't engaged with therapy and believe psychosexual therapy needed doing first (I had engaged with NHS therapy who said I needed to pay for external talking therapy), so that part was incorrect. If they also took the time to see me, they'd also know that tadalafil restores morning wood, so very unlikely with all my bloods and symptoms that this is psychological.
Then on the phone his secretary told me it was because I was unwilling to try Sildenafil?! Untrue. I'd tried and barely got any on the NHS, and bought some myself privately, but it makes me ill. This is also not a good enough treatment for my complex case. Regardless, my GP also prescribed me ongoing tadalafil so I can actually have a sex life with my partner.
I've had to escalate a bloody PALS complaint after all this time and have no idea where that's going or how long it will take to hear back. My GP has written backing my case and arguing I should be reinstated.
In the meantime, my referral from my GP to a specialist wndo has been rejected today. This was a blow. Possibly because it's less in his wheelhouse.
I'm now in talks with The Men's Health Clinic and Balance My Hormones. Both have received my bloods and implied directly they'd treat me based on them. There are a few options between them, such as HCG mono with BMH.
I'm also looking into other private specialist endos, but don't even know where to start looking. I also want to see if there's a NHS hospital that might be worth my time, under the right to choose.
This has all been a massive blow to my mental health. I believe that long term stress aged 14-29 built up, culminating in the worst prolonged year of stress I've faced. While stressed, I was overtraining at the gym, intermittent fasting, masturbating too much as a coping mechanism, drinking too much. Then in the year before this started, almost a year of SSRI sertraline. I then took this for 3 weeks after several weeks of these symptoms to cope with the divorce I initiated and the stress that took on me, combined with new health issues, combined with no seeing my children as much and financially worrying.
I strongly believe it all points to a stress induced burnout on my HPTA axis, a negative loop that no amount of positive change the last few years can or has helped with. I'm physically and financially in a better place, have a good relationship and with my kids too, am in a better job with less stress and better salary, in a better home, with a better diet etc etc.
And yet...
At this point I don't truly know where to turn, and that's why I'm seeking advice, hopefully from people who have been where I am. Or someone who knows what I should do next.
With all my bloods and symptoms well documented, do I just see a specialist endo, and if so, who? I imagine I won't need to pay for many blood tests with my 4 year PDF from the NHS.
Or do I hold out for the NHS? My case has made its way back to the original Endo, but has a new replacement. I don't know how long Andrology could take now, of at all after unjust discharge.
Or do I pursue something like Mens Health Clinic or Balance my Hormones? And then it's a case of different treatments and affordability.
I'm aware of different treatments including clomid, enclomiphene, HCG and TRT, the latter of which I'm most conscious of not wanting as there are so many other bloods that are high or low or not optimal. I've got thos diagnosis on the NHS and no treatment.
So if anyone has been where I am, similar bloods and symptoms, where did you go? What did you take?
Thanks for taking the time.