PFS or something else?

[IthinkFingotmetoo]

@Chrisis

Does anyone know if PFS can evolve and trigger new symptoms in time?

I seem to be one of the lucky ones that gets worse with time. It’s been a year and a half since I stopped Fin, and I’m getting new sides every few months while keeping the old ones. So far, it seems to be a cascading effect in my case.

[genetix1]

Something else. Most definitely.

Long story short: I have been to many doctors in the last 2 years. I Got a CT scan which showed atrophic left kidney and the right kidney is larger to compensate. That was followed by nuclear renogram which showed the left kidney is only functioning at 20%. Why is that important? Because when i quit Finasteride and got the crash, I went to a internal doctor who did ultrasound all over my organs. At that time, which was 7 years ago, the left kidney was very swollen. He wanted another exam but i did not have time to complete the tests. I was working all the time and did not really think it is a big deal.

Now, after 7 years, the left kidney is dying.

The CT scan also showed a couple of diverticulosis in the sigmoid colon

Now, the next step should be seeing nephrologist to examine kidney blood supply and possible glomerunlonephritis. Still, we need to figure out the constant congestion in the suprapubic area and the tenderness in the lower left quadrant of the abdomen.

Within 10 years, most of the old member in this form will have end stage renal failure. It is that serious.

[Len]

oh no. i do get bad pain in BOTH kidneys since taking finasteride. is there anything that can be done to stop this?

[xptriado]

i just don’t stop getting surprised in this forum…

[nopecia]

Well this has scared the shit out of me.

genetix1, what should I be doing now? Are you saying I am likely to die?

I’m so scared at the moment. I’ve had trouble sleeping the last two nights because the pain keeps waking me up.

[genetix1]

of note. my serum creatinine has always been 1.2 t0 1.4 since i have stopped finasteride. Members who are worried should get blood work at least to check on serum creatinine , and then go from there.

[xptriado]

looking for creatinine values, i found they were normal when i stopped fin…but Gama Glutamil Transferase was 9, when the lower limit was 8…omfg…

[nopecia]

I’ll check my blood test info when I get home. What should they be to be “normal”?

[mehhhhh]

Your kidneys aren’t located in your groin…if you’re having pain/burning/numbness/aching in your groin, then you’re experiencing what a ton of people on here experience. I’d suggest seeing a neurologist. The corticosteroids really did help me, at least while I was on them.

[nopecia]

mehhhhh have you got a way I can contact you privately? PM me? We could IM on Skype?

It’s a good point by the way, genetix1, did you actually suffer the same symptoms as me? Just wondering how you arrived at this scary forecast.

[Tubman]

You’ve got penile numbness and pain due to the effect the poison has on the dorsal nerve. Damage to the nerve also effects libido.

Worth trying liquid magnesium oil.

[dannyfc]

@genetix1

of note. my serum creatinine has always been 1.2 t0 1.4 since i have stopped finasteride. Members who are worried should get blood work at least to check on serum creatinine , and then go from there.

My serum Creatinine was tested just above range. 109 umol/L. What units were you tested against? And are there any other tests to check kidney function.

[xptriado]

just a quick googleing

http://www.patient.co.uk/health/routine-kidney-function-blood-test

Urea is a waste product formed from the breakdown of proteins. Urea is usually passed out in the urine. A high blood level of urea (‘uraemia’) indicates that the kidneys may not be working properly, or that you are dehydrated (have a low body water content).

Creatinine is a waste product made by the muscles. Creatinine passes into the bloodstream, and is usually passed out in urine. A high blood level of creatinine indicates that the kidneys may not be working properly. Creatinine is usually a more accurate marker of kidney function than urea.

Estimated glomerular filtration rate (eGFR) provides a guide to kidney function. Although the level of creatinine in the blood is a useful guide to kidney function, the eGFR is a more accurate measure. Blood creatinine can be used to estimate the eGFR using age, sex, and race. This is often calculated by computer and reported with the creatinine blood test. The normal value for eGFR is 90-120 ml/min. An eGFR below 60 ml/min suggests that some kidney damage has occurred. The value becomes lower with increasing severity of kidney damage.

Dissolved salts that are routinely measured are sodium, potassium, chloride and bicarbonate. They are sometimes referred to as ‘electrolytes’. Abnormal blood levels of any of these may be due to a kidney problem. (Some other conditions may also alter the salt balance in the blood.)

Who has a blood test of kidney function?

Routine kidney function is one of the most commonly performed blood tests. It may be done:

As part of a general health assessment.
If you have suspected dehydration (when the urea level increases).
If you have suspected kidney failure. The higher the blood levels of urea and creatinine, the less well the kidneys are working. The level of creatinine is usually used as a marker as to the severity of kidney failure. (Creatinine in itself is not harmful, but a high level indicates that the kidneys are not working properly. So, many other waste products will not be cleared out of the bloodstream.) You normally need treatment with dialysis if the level of creatinine goes higher than a certain value.
Before and after starting treatment with certain medicines. Some medicines occasionally cause kidney damage as a side-effect. Therefore, kidney function is often checked before and after starting treatment with certain medicines.

Other tests of kidney function

The routine kidney blood test is a general marker of kidney function. If the blood test is abnormal it cannot say what is causing the kidney problem. Therefore, if you have an abnormal result you may need further tests to find the cause of a kidney problem. For example: urine tests, other blood tests, scans, X-rays, kidney biopsy, etc.

[nopecia]

So according to that, both dannyfc and genetix1 have normal levels for functioning kidneys…

[Luckfax]

Hyperbolic nonsense. We have members of the forum who’ve had PFS well in excess of a decade and haven’t had kidney failure, nor is there anything to suggest it will develop. I had pains there in the few weeks post crash, especially after touching alcohol, but nothing at all since. Show me a link between androgen deprivation and kidney failure…woah wait, actually a quick google reveals this jama.jamanetwork.com/article.asp … id=1713592 so maybe there is something here. Although not sure if kidney injury corresponds with ‘end stage renal failure’.

Nonetheless, genetix I recall you stating before here we were all in a precancerous state or something. Enough already with the apocalyptic warnings.

[nopecia]

Reassuring, thanks Luckfax. Truly feel I’ve enough on my mind without worrying my kidneys are breaking down too.

[nopecia]

Back to the topic: groin discomfort/pain: if anyone else has information about the possible cause of this pain and discomfort, please respond.

[genetix1]

I’m not telling you theories based on googling. I’m actually seeing doctors and I did exams that cost around 15000 dollars, and my copay was around 1500 dollars. You ignore the exam results and prefer a state of denial. My renogram showed 20% function in the left kidney. My creatinine is in the upper range and It has always been in the upper range since I quit fin. My left kidney is atrophied. I’m still following up with my PCP and a urologist, and I have an appointment with a nephrologist soon. I think the problem is either chronic glomerulonephritis or a problem with kidney blood flow. I will need kidney arteriogram and venogram to check kidney blood flow. Also, just after quitting finasteride, my left kidney was swollen and double the normal size. now it is atrophied. My be it is just me. I will keep following up with my doctors and I’m sorry if I scared anyone here. That was not my intention. I was just highlighting an issue that is overlooked here, based on my exams findings. I still have to figure out The relationship between the sluggish kidney and sexual dysfunction. I will keep digging. I will let everyone know when I find out something. Like I said, I’m following up with my doctors and I will see what they find out. I will not post here again until my problem is solved.

Thanks.

[genetix1]

of note, chronic kidney disease develop over decades. It is a very insidious disease. Please get your kidneys checked.

Thanks

[xptriado]

thanks for the tip.
One more exam to add to my to-do list…