Kallmann Syndrome & TRT

[optimuswind]

Hey,

I was diagnosed with Kallmann Syndrome in my late teens and then put on HGH for a couple years to grow, ended up at about 5'9" height, then I was put on sustanon (can't remember dose amount or interval) for a while until they said they couldn't get it anymore and I've been on nebido for a couple of years now. I'm 26 now.

The only number I know from my last appointment was "9.6" for my testosterone, this was whilst I was on the nebido. According to the nebido site, between 15-50 is normal levels, so isn't that really low?

I have been taking 4ml nebido every 12 weeks.

I asked my endo about it being low and said something like "if I didn't have the syndrome affecting my pituitary gland etc, how do you know my normal levels wouldn't be a lot higher?" He didn't have an answer, and also it took about 4 appointments for me asking for bone densitometry scan to check my bones and after he finally gave me it told me I had osteopenia and prescribed me some calcium tablets..

I got my GP to refer me to a different endo in another hospital, I met him once and then had blood taken, and I am waiting for my next appointment with him now.

I decided to just take my next nebido shot 2 weeks earlier than usual since I think he will probably tell me to take them in shorter intervals anyway.

Aftering thinking that my levels were really low and probably the cause of my ongoing anxiety and depression that I have had for the past 8 or so years, I got angry at the ****ty service from my previous endo and I requested another ampoule from my GP and stuck that in my other leg the other day. Did I **** up there and give myself too much? Is this going to cause some big imbalance and increase my eostrogen levels or something? I wasn't really thinking and just wanted to take things into my own hands and give myself more test.

So I have had 2 full ampoules in each leg in the space of 2 weeks, 10 weeks since my last. I don't feel different at all so far.

I plan to get my full blood details in my next appointment to bring home with me.

Also, if it matters, if my memory serves me the problem kallmann syndrome is the hypothalmus not releasing GnRH to the pituitary, so that's where my problem lies.

Any advice / info would be really appreciated. It's hard to find help for this, and steroid forums like this seem to be the only place where people know what they're talking about, probably even more so than my 'specialist' endocrinologist.

Thanks in advance.

 

[Megatron28]

How long have you been taking nebido for? And long long were you using sustanton for prior to that? Any gap of time between the two?

By taking more nebido than they prescribed, you are going to do two things. You will most likely have a spike in your testosterone which will then result in a higher amount of aromatization (conversion of testosterone into estradiol which is a potent form of estrogen). Sounds like you are not using an aromatase inhibitor medication, so yes -- you will probably get a spike in estradiol. Two, as I said, you are going to increase your testosterone levels. When you go in to your doc for your next blood test, he will see that your numbers are high. This may result in them determining that your current dose is too high and they could reduce it. Based on your TT numbers, that would be a bad outcome.

You should probably tell them that in a flash of anger and immaturity you made a bad decision.

You have found a great place for learning about TRT. You are going to be doing this for the rest of your life so take the time to learn about it. With a lot of reading here I promise you that you can understand TRT better than your doctors. That will allow you to help guide your treatment. Go through old posts. Learn all about hypogonadism diagnosis and treatment. Aromatase enzyme. Normal levels in men. Estradiol. How to read your lab results. HPTA. Medications used. Side effects. And so on. Hunker down and read here until you can't read anymore. Most importantly, keep asking questions along the way.

Lots of docs, including endos, have no clue about TRT. Very easily, you can know much more than them.

 

[optimuswind]

How long have you been taking nebido for? And long long were you using sustanton for prior to that? Any gap of time between the two?

By taking more nebido than they prescribed, you are going to do two things. You will most likely have a spike in your testosterone which will then result in a higher amount of aromatization (conversion of testosterone into estradiol which is a potent form of estrogen). Sounds like you are not using an aromatase inhibitor medication, so yes -- you will probably get a spike in estradiol. Two, as I said, you are going to increase your testosterone levels. When you go in to your doc for your next blood test, he will see that your numbers are high. This may result in them determining that your current dose is too high and they could reduce it. Based on your TT numbers, that would be a bad outcome.

You should probably tell them that in a flash of anger and immaturity you made a bad decision.

You have found a great place for learning about TRT. You are going to be doing this for the rest of your life so take the time to learn about it. With a lot of reading here I promise you that you can understand TRT better than your doctors. That will allow you to help guide your treatment. Go through old posts. Learn all about hypogonadism diagnosis and treatment. Aromatase enzyme. Normal levels in men. Estradiol. How to read your lab results. HPTA. Medications used. Side effects. And so on. Hunker down and read here until you can't read anymore. Most importantly, keep asking questions along the way.

Lots of docs, including endos, have no clue about TRT. Very easily, you can know much more than them.

I'll tell the new endo what I did when I see him. What are the consequences of me having too much estradiol? I had a quick look at the wikipedia page for it, and it says that it is used for healthy bones - and as I said I was diagnosed with osteopenia - could that help me then? maybe I didn't have enough of that in the first place too since my T was so low even on nebido?

Should I request an aromatase inhibitor? Is there anything specific I should ask them about my bloodwork to bring home with me, or any other questions or things I should ask?
The main thing seems to be the development of gynecomastia? I had that slightly a few years ago when I was overweight, but now I am about 65kg and rather thin. The wikipedia page for aromatase inhibitor says nicotine is one - I recently began using an e-cigarette so maybe that will help in this one instance?

If I don't see my endo before my next shot (it is usually 6 months between appointments for me (UK, NHS)), when do you recommend I take it? wait the full 3 months or do a single one again in 10 weeks, based on my level of 9.6?

Thanks again