jimmypage92
Member
- Messages
- 10
Hi all,
I have been reading the stories of other members and thought I would post my own thread to see if some of you highly knowledgeable people can point me in the right direction/improve my quality of life even marginally.
My name is Tom, I'm 29 and living in the UK. At the age of 14, I was diagnosed with type 1 diabetes. I struggled to maintain good control of my blood glucose levels in the early stages and I really struggled both mentally and physically as a result. Within 12-18 months after diagnosis, my hair (which had previously looked perfectly healthy) began to shed excessively and looked very dull. Concerned, I made a private appointment to see a dermatologist, who informed me that I was suffering from male pattern baldness.
I was prescribed Propecia and told that I should take it in bursts of 3-6 months at a time, due to financial concerns. This meant taking time off for almost the same period as I had been on, then repeating the process.
Around two weeks before my 16th birthday, I was waiting for my GCSE exam results on a family holiday in Gozo when things went really wrong. My left testicle became extremely swollen and felt like it was going to explode. I was convinced it was testicular cancer, due to a very good friend having recently been diagnosed with terminal cancer. I got extremely drunk on red wine that evening with a friend, while my parents and our family friends went out for tea. I was so sick I thought I was dying. By the following evening, still being sick but ejecting only water, I was admitted to hospital for a few days (missing out on the rest of the holiday) and diagnosed with gastroenteritis.
At this stage, I had no idea that finasteride could have caused my problems and I carried on regardless. I started sixth form college and found myself so overcome with anxiety that I would often not get to sleep until 3 or 4am. This is a problem that stayed with me until this very night (3:28am at the time of writing), although I sometimes go through a few days where my sleep is better.
At the age of around 18 when I took my last dosage of finasteride, it wasn't long before I had the complete crash. At this time, I was at university and everything went so wrong that I still feel traumatised at the absolute breakdown of my life to this day (much more so than the ongoing nature of PFS, which I have almost become acclimatised to, aside from the odd horrendous day, when I genuinely want to die.
I used to be a very keen sportsman, playing tennis and rugby for my school team and playing football for a local weekend team. My muscles became extremely tense almost overnight and made running a physical impossibility. I suffer crumps, tremors, spasms etc and my legs (most badly affected area) are so inflexible that they feel like they are made of wood. At the same time, I started suffering extreme anxiety attacks that forced me to miss out on the overwhelming majority of seminars (I couldn't face discussion with anybody due to my intellect being severely blunted and struggling to string sentences together). My sleeping pattern became so poor that I would stay awake until 7 or 8am and then sleep until 6 or 7pm. I lost my job at a local restaurant where I had worked for two years due to becoming extremely unreliable, I vandalised property/objects, hospitalising myself on one occasion and requiring a number of stitches to my hand after punching a window. Then I had the misfortune of finding that my girlfriend had been seeing someone else, as she accidentally left her email account logged in on my laptop and avoided women for 7 years afterwards. I started drinking very, very heavily and put myself in all kinds of dangerous situations. My entire metabolism crashed, I gained a massive amount of weight within a few weeks, my face became extremely puffy and I developed extremely severe responses to the overwhelming majority of foods. For at least five years now, I have avoided gluten, dairy and soya like the plague and I try to limit carbohydrate wherever possible. It took me a long time to pick up on these things, but I realised over time that certain foods were doing extreme damage. At the time of the big crash itself, I was also diagnosed (by my uncle - optician) with cataracts in both eyes. These cataracts have not developed at all since they first formed and have always been a point of contention with medical professionals. Having only been diabetic for four years, I find it highly unlikely that it would be the cause (something which I have had backed up by numerous people in the know).
My diabetes has been a major problem regarding my finasteride issues, simply because it has always acted as a smokescreen for healthcare professionals. When I have complained of problems with my eyes, muscles, digestion etc I have always been reminded of the importance of good diabetes control. So it wasn't until the last two or three years when I stopped listening to anything my healthcare team had to say to me. Having exhausted every test/treatment in the book - brain MRIs, muscle biopsies (legs), Doppler ultrasound (legs), myofascial compartment release (legs), orthotic prescription to correct gait, trips to physiotherapists, massage therapists and more recently a kinesiologist (where I have definitely seen some improvements) - I turned my back on the doctors and decided to just try to experiment with things for myself. In the UK, most doctors do not take PFS seriously at all.
So I spent the last couple of years trying out all kinds of different supplements - largely as discussed by the majority of users on any post finasteride sites. These included vitamin/mineral boosts such as magnesium/calcium, vitamin D3 and zinc, testosterone boosters, amino acids, quercetin, among all sorts of other things. Some of these things have really helped at times and a handful of them I am still taking regularly - magnesium, milk thistle, acidophilus, D3, arginine, one particular testosterone booster by Iron Labs called T19 Extreme (which I don't think I could live without now, it provides me with just enough libido and erectile function to get by).
The long and the short of it is that I am tired of stabbing in the dark and guessing at what might improve my problems. I have pumped far too many tablets into my system in recent years and I am aware this is not good especially for my liver. I also cannot afford to keep buying these supplements all the time, as a self employed musician.
The issues that are most prominent these days are as follows:
1. Severe muscle weakness in forearms (to a lesser extent) and lower legs (fluctuates - sometimes improves with relaxation and magnesium supplementation, but largely terrible).
2. Digestive system absolutely terrible - struggle to eat anything heavy and cannot touch gluten, dairy or soya at all without horrendous consequences. Some improvement with acidophilus.
3. Struggling to get to sleep, then struggling to wake up - requiring up to 12 hours where possible to avoid exhaustion.
4. SEVERE face and stomach swelling and general body swelling on a regular basis.
5. Congestion/sinus and throat problems - runny nose regularly and had to give up singing.
6. Frequent urination with very little end product.
7. Extremely poor memory, particularly of the first 15/16 years of my life.
8. Gum disease and extreme plaque buildup, as recognised by my dentist as not having anything to do with the quality of my dental care.
I have been so impressed by some of the people I have seen on here and I am really hoping someone can offer me advice on what to do next. I am very keen indeed to try hair mineral analysis, but I need to know which one is best in the UK really before I can order a kit. I am also considering paying to see an endocrinologist privately to obtain tests on the big red flags like total testosterone, free testosterone, prolactin, LH, FSH, SHBG etc - I was hoping someone might be able to provide me with a comprehensive list of what needs testing in this regard.
If I can just get rid of one or two of my more problematic symptoms, I think I could live much more comfortably than I am doing currently. Numbers 1-4 are currently the most problematic for me, but obviously the other three are not much fun either! I thank you all very much in advance for taking the time to read and for anything you might be able to suggest to me. I am in a bit of a mess, despite being significantly better off than I was aged 20. I don't know whether being so young caused a particularly severe crash, but if I had to go through those years again, I think I would just kill myself. I don't currently have any wish to do anything drastic, however - I just want to keep up the battle to get better.
I have been reading the stories of other members and thought I would post my own thread to see if some of you highly knowledgeable people can point me in the right direction/improve my quality of life even marginally.
My name is Tom, I'm 29 and living in the UK. At the age of 14, I was diagnosed with type 1 diabetes. I struggled to maintain good control of my blood glucose levels in the early stages and I really struggled both mentally and physically as a result. Within 12-18 months after diagnosis, my hair (which had previously looked perfectly healthy) began to shed excessively and looked very dull. Concerned, I made a private appointment to see a dermatologist, who informed me that I was suffering from male pattern baldness.
I was prescribed Propecia and told that I should take it in bursts of 3-6 months at a time, due to financial concerns. This meant taking time off for almost the same period as I had been on, then repeating the process.
Around two weeks before my 16th birthday, I was waiting for my GCSE exam results on a family holiday in Gozo when things went really wrong. My left testicle became extremely swollen and felt like it was going to explode. I was convinced it was testicular cancer, due to a very good friend having recently been diagnosed with terminal cancer. I got extremely drunk on red wine that evening with a friend, while my parents and our family friends went out for tea. I was so sick I thought I was dying. By the following evening, still being sick but ejecting only water, I was admitted to hospital for a few days (missing out on the rest of the holiday) and diagnosed with gastroenteritis.
At this stage, I had no idea that finasteride could have caused my problems and I carried on regardless. I started sixth form college and found myself so overcome with anxiety that I would often not get to sleep until 3 or 4am. This is a problem that stayed with me until this very night (3:28am at the time of writing), although I sometimes go through a few days where my sleep is better.
At the age of around 18 when I took my last dosage of finasteride, it wasn't long before I had the complete crash. At this time, I was at university and everything went so wrong that I still feel traumatised at the absolute breakdown of my life to this day (much more so than the ongoing nature of PFS, which I have almost become acclimatised to, aside from the odd horrendous day, when I genuinely want to die.
I used to be a very keen sportsman, playing tennis and rugby for my school team and playing football for a local weekend team. My muscles became extremely tense almost overnight and made running a physical impossibility. I suffer crumps, tremors, spasms etc and my legs (most badly affected area) are so inflexible that they feel like they are made of wood. At the same time, I started suffering extreme anxiety attacks that forced me to miss out on the overwhelming majority of seminars (I couldn't face discussion with anybody due to my intellect being severely blunted and struggling to string sentences together). My sleeping pattern became so poor that I would stay awake until 7 or 8am and then sleep until 6 or 7pm. I lost my job at a local restaurant where I had worked for two years due to becoming extremely unreliable, I vandalised property/objects, hospitalising myself on one occasion and requiring a number of stitches to my hand after punching a window. Then I had the misfortune of finding that my girlfriend had been seeing someone else, as she accidentally left her email account logged in on my laptop and avoided women for 7 years afterwards. I started drinking very, very heavily and put myself in all kinds of dangerous situations. My entire metabolism crashed, I gained a massive amount of weight within a few weeks, my face became extremely puffy and I developed extremely severe responses to the overwhelming majority of foods. For at least five years now, I have avoided gluten, dairy and soya like the plague and I try to limit carbohydrate wherever possible. It took me a long time to pick up on these things, but I realised over time that certain foods were doing extreme damage. At the time of the big crash itself, I was also diagnosed (by my uncle - optician) with cataracts in both eyes. These cataracts have not developed at all since they first formed and have always been a point of contention with medical professionals. Having only been diabetic for four years, I find it highly unlikely that it would be the cause (something which I have had backed up by numerous people in the know).
My diabetes has been a major problem regarding my finasteride issues, simply because it has always acted as a smokescreen for healthcare professionals. When I have complained of problems with my eyes, muscles, digestion etc I have always been reminded of the importance of good diabetes control. So it wasn't until the last two or three years when I stopped listening to anything my healthcare team had to say to me. Having exhausted every test/treatment in the book - brain MRIs, muscle biopsies (legs), Doppler ultrasound (legs), myofascial compartment release (legs), orthotic prescription to correct gait, trips to physiotherapists, massage therapists and more recently a kinesiologist (where I have definitely seen some improvements) - I turned my back on the doctors and decided to just try to experiment with things for myself. In the UK, most doctors do not take PFS seriously at all.
So I spent the last couple of years trying out all kinds of different supplements - largely as discussed by the majority of users on any post finasteride sites. These included vitamin/mineral boosts such as magnesium/calcium, vitamin D3 and zinc, testosterone boosters, amino acids, quercetin, among all sorts of other things. Some of these things have really helped at times and a handful of them I am still taking regularly - magnesium, milk thistle, acidophilus, D3, arginine, one particular testosterone booster by Iron Labs called T19 Extreme (which I don't think I could live without now, it provides me with just enough libido and erectile function to get by).
The long and the short of it is that I am tired of stabbing in the dark and guessing at what might improve my problems. I have pumped far too many tablets into my system in recent years and I am aware this is not good especially for my liver. I also cannot afford to keep buying these supplements all the time, as a self employed musician.
The issues that are most prominent these days are as follows:
1. Severe muscle weakness in forearms (to a lesser extent) and lower legs (fluctuates - sometimes improves with relaxation and magnesium supplementation, but largely terrible).
2. Digestive system absolutely terrible - struggle to eat anything heavy and cannot touch gluten, dairy or soya at all without horrendous consequences. Some improvement with acidophilus.
3. Struggling to get to sleep, then struggling to wake up - requiring up to 12 hours where possible to avoid exhaustion.
4. SEVERE face and stomach swelling and general body swelling on a regular basis.
5. Congestion/sinus and throat problems - runny nose regularly and had to give up singing.
6. Frequent urination with very little end product.
7. Extremely poor memory, particularly of the first 15/16 years of my life.
8. Gum disease and extreme plaque buildup, as recognised by my dentist as not having anything to do with the quality of my dental care.
I have been so impressed by some of the people I have seen on here and I am really hoping someone can offer me advice on what to do next. I am very keen indeed to try hair mineral analysis, but I need to know which one is best in the UK really before I can order a kit. I am also considering paying to see an endocrinologist privately to obtain tests on the big red flags like total testosterone, free testosterone, prolactin, LH, FSH, SHBG etc - I was hoping someone might be able to provide me with a comprehensive list of what needs testing in this regard.
If I can just get rid of one or two of my more problematic symptoms, I think I could live much more comfortably than I am doing currently. Numbers 1-4 are currently the most problematic for me, but obviously the other three are not much fun either! I thank you all very much in advance for taking the time to read and for anything you might be able to suggest to me. I am in a bit of a mess, despite being significantly better off than I was aged 20. I don't know whether being so young caused a particularly severe crash, but if I had to go through those years again, I think I would just kill myself. I don't currently have any wish to do anything drastic, however - I just want to keep up the battle to get better.
