Had a bit of a rocky ride for about 4 years now and still haven’t got the answers or a clue as to what I should/can do.
Just over 3 years ago I was diagnosed with low T. After months of me pushing for tests and investigation as no doc would take my symptoms seriously. Probably because im young and in good shape/active with no other health issues .
My T was pretty much none existent. 74ng/dl and it was a further 8 months before a was put on TRT. I was never given an official cause - but I had a pituitary MRI which was ok and a LH/FSH test which concluded my diagnosis was secondary hypogonadotropic hypogonadism.
I’ve been on TRT for nearly three years in the form of Tostran gel and find it doesn’t really have a massive effect. I’ve also recently done research that would suggest, especially at my age , says TRT is the worst thing the doc could’ve put me on. Most information saying HCG would be a better alternative for preserving or maintaining any fertility but also encouraging the testes (which may still respond) to produce testosterone .
If anyone out there has any further advice or info or similar experience, input would be much appreciated.
James .
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Not sure on the free test levels. It’s never even been mentioned to me.
I’ve seen an endocrinologist numerous times at the start of this . Testes examined etc . Never taken drugs/steroids .
In the last year I’ve also developed somewhat of a cycle of numerous symptoms that come and go - no idea if it’s linked. feeling really weak/fatigued, severe upper back/rib pain when I Inhale (this never goes) , aching joints, shortness of breath , difficulty focusing, facial flushing and Fever and then it suddenly goes - (except the back pain)
CT’s and X rays so far have shown nothing lung related.
Again, were the initial low values, including LH/FSH drawn and repeated before starting TRT?
And was the LH/FSH done on the same lab draw?
Has your adrenal function been assessed?
What dose of TRT & what are the actual values now?
What were the actual #s of T, LH/FSH, etc.before and now?
When you have had blood tests did they also check prolactin and cortisol? That would give you a better idea of the health of your pituitary gland. I have had 2 MRIs and no tumour was found. It was noted, however, that my pituitary gland was smaller than expected. I have been on TRT for a number of years now via 11 weekly injections. My trough T level is now normal. I have experienced the usual symptom of TRT - some atrophy of the testes. I also had a DEXA scan which showed normal bone density.
All my blood tests were done at the correct times before and regularly after, commencement of TRT. They were also done at the correct time of day. I was, for a few years, under the care of a consultant Endocrinologist.
The LH/FSH was all done prior to me starting TRT, I’ve no idea on any of the actual values. This was all done over 3 years ago when I was first diagnosed.
At the time cortisol and prolactin levels were all declared as normal.
The TRT I’m taking at the moment is 6 x squirts of tostran 2 % gel per day. I apply every morning at 7-8am.
The endocrinologists I’ve seen are a joke and I’ve been lost in the loop of the national health system in the uk. I’ve not had an appointment for over a year . The last time I was tested my levels were just
Endocrine issues can be quite complex so in assessing one’s history and clinical course it is absolutely essential to assemble all your lab data - times-dates-lab, etc (historical and ongoingly) with normal ranges for each lab report. These ranges maybe different with different labs.
Creating a spreadsheet is most helpful. Also with documentation and timing of any medications.
Everything is connected so to appreciate the big picture (i.e. YOU), this can be most helpful. To do otherwise can create circle upon circle with no clear picture and next to impossible to decipher a meaningful approach and much wasted time!
Only you can do this. It takes time. It is worth it. You have many years ahead and you want to live them to the max.
It is important when reporting results to list the actual value and not just “normal”. “Sometimes normal may not be normal”.
I know, it’s getting me a few sleepless nights anyway trying to do research and trying to get appointments and tests done.
I just cannot rely on anybody I’ve seen so far as it’s just shrugged off everytime and forgotten about for months/years . I’ve still no definite cause of why I have the condition.
I was told by the endocrinologist to expect the worst (for a pituitary Tumor) when the LH/FSH tests were initially done 3 years and it showed no pituitary response . But then the MRI came back ok and I was tossed to the side really. Given no conclusion or real investigation etc.
I was Just told it was one of those things, but how at 22 does that just happen - to have a T level of under 100ng/dl despite being active, no underlying conditions/diabetes/obesity etc...
Yeah, it’s only come in the last 12 months or so with a host of other symptoms. Fatigue, severe joint pain, muscle wasting in my thighs, chest pain with exertion, constantly flushed cheeks and being breathless after minimal movement - climbing stairs etc.
The back/rib pain doesn’t really occur with movement/twisting or any physical touching - only when breathing in but recently it’s turned into a persistent dull ache even without inhaling.
I’ve been on testosterone treatments for 12 years now and sadly I’ve had the same hopeless responses as you. Because it’s all so complicated and I have other ongoing health issues, I’ve just given up.
My libido just disappeared 12 years back when I was 52 and has never recovered. I’ve been on Nebido 3 monthly injections most of that time and my T has been low as well as high, but with no noticeable differences?
I have heard you really have to go private when it comes to this as all the NHS endos throw at it is T injections, but know little else about the field.
In my case I’ve been on opiate based painkillers (Tramadol) for 20+ years so I figure that’s what’s caused it, as they’ve also messed up other things in my body.. although 12 years ago the consultants reckoned that it would have little effect?
I wish you well as there IS something causing this at your age. Speak to as many experts in the field as possible, as some doctors are miles better than others. Unfortunately it’ll take your efforts to get to the bottom of this, as it’s areas like this where the NHS is positively Useless. Good Luck.
Secondary hypogonadism. Initially without treatment 3 years ago - loss of libido, fatigue , loss of muscle mass.
Started TRT treatment 3 years ago - tostran gel 2% - symptoms got slightly better .
In the last 12 months (treatment still the same) I’ve developed Fatigue, breathlessness, chest pain/back pain when inhaling and during exertion, joint pain all over , lymph nodes Also intermittently enlarged - one day they can all be like olives , the next day unnoticeable.
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