Not sure where to turn now - please can anybody advise!

Member Stories
#1

I’m 36 from the UK and am pretty desperate for any advise/help. I had a perfectly functioning and healthy body before taking Proscar -

I was taking Proscar 1.25mg for around about a year for hairloss. I stopped completely 11 months ago after I had pain/discomfort in my rectum and was worried it may be connected to the drug. This included pain when going to toilet (big jobs) and some blood when wiping.
The NHS doctos checked my prostate and found nothing wrong or sinister. This problem improved within a month or so but soon after I had suddenly developed -

  • Significant pain and discomfort in the right hand side of my testicles, general groin area and right hand side of my lower stomach
  • I was having to urinate up to 10 times a day,
  • veins in my testicles and balls were aggressive and more visible,
  • my testicles and penis felt like they had shrunk with the right hand side ball feeling and looking like it had moved further up in the sack,
  • the balls rarely hung anymore
  • greatly reduced labido
  • semen smells different to how it used too
  • Twitching of veins or muscles in my left leg above the knee occurred intermittently
  • Having to crap more and still getting some twinges in rectum
  • I felt significantly more fatigued than normal.
  • Sleep had also become a problem probably exacerbated by worry.

Over a period of 11 months I have seen 2 NHS GP’s, 2 NHS Urologists, had 2 Ultrasound scans on my groin, testicles and lower stomach and an MRI scan in the whole area. Everything has come back as being normal with no problem pathologically found. The pain and discomfort levels have improved somewhat in my testicles although it is still painful if manipulated and all other symptoms exist to same or slightly lesser extent.
After seeing info on this site I recently insisted upon having a more in depth blood test that returned the following results -
Serum Prolactin level - 203 miu/L
Serum Testosterone level - 13nmol/L
Serum Cortisol level - 419 nmol/L

The GP told me on the phone this was all ok/normal. I asked for a print out of the results and discovered a message from the Lab that stated ‘An overnight dexamethasone suppresion test is recommended to assess the possibility of Cushings. The short Synacthen test is advised to investigate possible hypoadrenalism’
The GP told me that this was not necessary and everything was fine! I was further told by the GP that my condition is likely to be a physiological problem/issue labelled ‘fight and flight’…!!!

I have concerns that although our NHS is fantastic if health problems are either very serious or mild, problems such as mine are beyond their means or willingness to deal with.

Can anybody confirm if my blood test results are actually ‘normal’ and if the lab message has value in further follo up?

I would and will do anything to get myself better as my quality of life has utterly nosedived. I’ve had this problem for nearly a year and I still dont actually know what is definitely wrong with me and how to treat going forward.- Can anybody advise what I could do now?

Are there any more even deeper blood analysis that I should look to get performed to help diagnose my issues?
Is it worth looking to see ie a neuro-endocrinolgist perhaps privately?

Thank you in advance for any advise

#2

This paper just came out, maybe purchase a copy and shove it in his face.

5α-Reductase inhibitors alter steroid metabolism and may contribute to insulin resistance, diabetes, metabolic syndrome and vascular disease: a medical hypothesis
degruyter.com/view/j/hmbci.2 … format=INT

Also… pfsfoundation.org/published-research/

Post ranges beside the results, otherwise results are useless.

propeciahelp.com/testing

It wouldn’t hurt, for more extensive testing. However some of the neurosteroids the drug affects (ie allopregnanolone, THDOC) require specialty tests not available outside of lab settings. Those neurosteroids are typically tested via lumbar puncture to access cerebrospinal fluid… as documented here:

onlinelibrary.wiley.com/doi/10.1 … 9/abstract

#3

Hi, thanks for this. Please can you reply to my response -

This is as printed from the blood test results. The blood test took place at about 10am.
Serum prolactin level 203miu/L (<325) will be filed as 203mU/L
Serum Testosterone 13nmol/L (8-31) age related adult testosterone reference ranges given
Serum Cortisol 419nmol/L
Cortisol reference ranges: early morning (170-540) late evening (60-330)

Can I also ask please - Of the extensive blood testing suggested - if I were able to sort this and get the mass of various results, who would be able to then analyse the results to establish potential abnormalities and then would there be a treatment path known considering the obvious vagueness of this whole area.

#4

Mew, if we can test the neuro-steroids, like allopregnenole…etc that have been effected altered by finasteride isnt that plenty evidence for a proper lawsuit??
its the only thing we can have proof for damage correct?..
maybe I can source out how to do my neurosteroid test?
thanks

#5

Hi Mew, back to my original and previous post/question -

This is as printed from the blood test results. The blood test took place at about 10am. Are these normal? -
Serum prolactin level 203miu/L (<325) will be filed as 203mU/L
Serum Testosterone 13nmol/L (8-31) age related adult testosterone reference ranges given
Serum Cortisol 419nmol/L
Cortisol reference ranges: early morning (170-540) late evening (60-330)

Can I also ask please - Of the extensive blood testing suggested - if I were able to sort this and get the mass of various results, who would be able to then analyse the results to establish potential abnormalities and then would there be a treatment path known considering the obvious vagueness of this whole area.

#6

I am a year older than you but we both have almost the same symptoms and testosterone levels, I would say that yours been 13 is on the low side of normal and certainly won’t be helpling your condition

It may he worthwhile considering TRT like I am
Presently doing

PM if you would like to chat in person

#7

getting any relief in symptoms from the test paul???

#8

heres my t level and a few others from 2010,the last time i had bloods done,

serum testosterone 11.1 nmol/L, 8.4-28.6

SHBG,17 nmol/L, 15-48

serum LH, 2.9iu/L, 1.5-9.3

serum free T4, 15pmol/L, 9-23

serum prolactin, 173, 45-375

all fine and within range apparently for a 35 year old,???,what would i know about hormone levels,any comments anyone???..

#9

Tigershull- if you do TRT, I woukd higly recommend justquitdut protocol of testosterone propionate and regulated armidex. Check out his thread and some who say they feel better in it.

#10

Hey up Robbo, I’m not on TRT at present but I’m probably going to give it a go in the coming months, my T came back at 11nmol which was 2 weeks ago

#11

Hi, I’m reluctant at this stage to take any further drugs without medical advise tied into the problem.
What I’d like to do is talk to people who are in a similar boat and find out if there are any medical specialists anywhere in the world who have helped others ie a neuro endocrinologist who may understand the problem?
I will do whatever it takes and will pass on any findings - I hope and suspect if people are affected like I am that they have seeked medical help.

THETIGERSHULL - I have emailed you via this site, hope we can talk as you invited.

Regards

#12

Hi,

Here are some specialists:

A.M. Traish, Prof. of Biochemistry and Urology, Boston University School of Medicine

Michael S. Irwig, MD, Associate Professor of Medicine, Director of Andrology, George Washington University

Irwin Goldstein, MD, Editor-in-Chief of the Journal of Sexual Medicine

Christine A Ganzer, PhD, Assistant Professor, City University of New York

#13

Got your email, I’ll call you Monday if that’s ok buddy?

#14

That’s great, Monday’s cool for me to chat.
Speak soon
All the best

#15

Hi, thanks for all your replies but I’m still somewhat lost in how to actually implement the suggested tests and who to see.

Looking back at my original question and further to the response about possible doctors who may understand the problems - Is it likely that a ‘regular’ endocrinologist either on the NHS here in the UK or privately likely be able to diagnose such issues - do I need to go more specialist?
Therefore, before I have to go over to the US, has anybody in the UK got any advise about doctors or clinics that may have helped them and understand the issues here?

If I manage to find somewhere where I can get the suggested blood tests done, is there anywhere in the UK that could analyse them and be able to diagnose any potential problems/abnormalities?

If I’m the first person to have gone down this route from a standing start then I’ll happily share my findings to help others in the future. I appreciate that research is being done which obviously suggests people don’t have all the answers but I’d like to think that my approach would be fairly standard and have been investigated before?

Regards

#16

propeciahelp.com/doctors

Dr. Andrew Rynne is in Ireland and has written extensively on the dangers of Finasteride. You might consider a call with him to discuss.

#17

The thing with Dr. Andrew Rynne is that he can’t write a prescription so he needs your GP to be able to sign those off. My GP is totally on board with me but he won’t write a prescription unless hormone levels are way off. Maybe it would be better going to Dr Jacobs since he seems to be working more with PFS people.

#18

From what I understand you need to visit Dr Rynne first then any future prescriptions can be sent through the post.

But I’m not sure if he’s allowed to write prescriptions for people living outside the Republic of Ireland.

You can email him on the address below and ask him if hes able to help you or any other international PFS patients.

drandrewrynne@gmail.com

#19

This is interesting. So, do we actually need to get a spinal tap in order to know what neurosteroids need to be corrected? Essentially normal blood tests are a waste of time?

I was just reading this article which is interesting:
ncbi.nlm.nih.gov/pmc/articles/PMC4064044/

Again it raises my concerns about prostate cancer. I’ve been having rectum pain, so I think I may need to get checked for prostate cancer. Even though they say there are no symptoms for prostate cancer.

#20

I wonder if Abdulmaged Traish is a doctor you can go see, or if he’s just a researcher.