New member from the UK

Member Stories
#1

  1. Where are you from (country)?
    UK

  2. How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)
    Google

  3. What is your current age, height, weight?
    31, 5’10", 73kg

  4. Do you exercise regularly? If so, what type of exercise?
    Gym 2-3 times a week, mainly running/cycling. Usually one hour of walking per day.

  5. What type of diet do you eat (vegetarian, meat eater, raw, fast-food/organic healthy)?
    Meat eater. Moderately healthy with lots of vegetables and fruit.

  6. Why did you take Finasteride (hair loss, BPH, other)?
    Hair loss.

  7. For how long did you take Finasteride (weeks/months/years)?
    1 year and 9 months.

  8. How old were you, and WHEN (date) did you start Finasteride?
    26 - Nov 2007.

  9. How old were you when you quit, and WHEN (date) did you quit?
    28 - Aug 2009.

  10. How did you quit (cold turkey or taper off)?
    Cold turkey.

  11. What type of Finasteride did you use – Propecia, Proscar, Fincar or other generic?
    Propecia.

  12. What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?
    Standard dose (1 pill per day).

  13. How long into your use of Finasteride did you notice the onset of side effects?
    No major side effects during use except watery semen, greying hair. Most side effects occurred after stopping drug.

  14. What side effects did you experience while on the drug that have yet to resolve since discontinuation?

Put an X beside all that apply:

Sexual
[X] Loss of Libido / Sex Drive
[X] Erectile Dysfunction
[ ] Complete Impotence
[X] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[X] Loss of Nocturnal Erections
[X] Watery Ejaculate
[X] Reduced Ejaculate
[ ] Inability to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[X] Emotional Blunting / Emotionally Flat
[ ] Difficulty Focusing / Concentrating
[ ] Confusion
[ ] Memory Loss / Forgetfullness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[X] Lack of Motivation / Feeling Passive / Complacency
[ ] Extreme Anxiety / Panic Attacks
[ ] Depression / Melancholy

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[X] Genital numbness / sensitivity decrease
[X] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[X] Persistent Fatigue / Exhaustion
[X] Stomach Pains / Digestion Problems
[X] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Increased hair loss
[ ] Frequent urination
[X] Lowered body temperature

[X] Other (please explain)
Weight gain.

  1. What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?
    Tried improving diet and increasing exercise but have not been consistent enough to know if it was helpful.

  2. If you have pre or post-Finasteride bloodtests, what hormonal changes have you encountered since discontinuing the drug (pls post your test results in the “Blood Tests” section and link to them in your post)?
    I have had post-Finasteride blood tests and will post results in the Blood Tests section.

  3. Anything not listed in the above questions you’d like to share about your experience with Finasteride?

  4. Tell us your story, in your own words, about your Finasteride usage and side effects experienced while on/off the drug.

While on the drug I noticed watery semen but no other sexual side effects. I decided to stop the drug because I had gradually become less concerned with hair loss. I also noticed a dramatic greying of my hair. Prior to starting Propecia I had a few grey hairs on the sides of my head but mostly my hair was dark brown. I noticed a massive increase to the point where the sides of my head were mostly grey. This apparent “ageing” effect made me wonder what else the drug was doing to my body.

After stopping I didn’t notice any adverse effects at first. Within a few weeks I was losing my erection during sex. The erectile dysfunction continued and got worse over the following months, to the point were I had almost no libido. I am able to have sex, but erections are very weak with poor sensitivity.

About six months after stopping Propecia I also developed digestive problems and constipation which has continued despite many attempts to resolve it. I also put on weight; I’ve always been very thin without doing much exercise, but I quickly put on about 6kg(13lbs).

I was in denial about all these issues for a long time, but I finally realised I have some serious problems which are not going away on their own.

What have I done towards resolving this so far?

I went to a GP and described all my symptoms. She ordered a range of blood tests. I didn’t request any specific tests at this point as I wanted to see what they came up with. The results mostly came back within the “normal” ranges. I will post more details in the Blood Tests section.

Thanks to the creator of this forum for setting it up and I hope I can contribute something useful in our quest for answers.

#2

Just added my blood test results here:

viewtopic.php?f=4&t=6768

Please take a look and let me know your thoughts.

#3

This is exactly what many feel, a little bit bad on the drug, but after stopping they crash and become worse.

#4

Sp, Not everyone who crash’s get’s worse. A lot of people get improvements. Everyone is different.

#5

they feel better because they start taking so many vitamins and herbals stuff, if you don’t take any thing leave yourself like before fine, you will feel worse over time.

#6

-_-’

#7

can you tell me any one who did not take any thing after stopping fin, I mean absolutely nothing and got better and better?

#8

I think the question of whether you gradually get better or worse over time is difficult to answer.

I felt I got worse initially (3-6 months) after stopping propecia. But I’m not sure if I’ve continued to get worse since then or levelled off.

I think that becoming more aware of your problems could make you feel they are getting worse, when that may not be the case.

Also, I’ve seen other people report that their body has gone through various ‘phases’ in the months/years of having PFS. I have experienced this too. I guess this is probably imbalances/problems which eventually lead to other issues which produce new symptoms.

#9

About a week ago I noticed a small rash on my stomach that looked like insect bites. It started spreading and became quite painful so I went to a doctor and he diagnosed it as Shingles. I got a prescription for Aciclovir which seems to be reducing the rash.

The doctor said you get Shingles when your immune system is very weak, and/or you are under a lot of stress. I was feeling particularly stressed out when it started - partly with PFS issues and also work problems.

It made me think about how important it is to maintain your state of mind in order to get better. I don’t think positive thinking will heal us - but negative thinking can certainly make things worse or prevent improvement.

#10

I’ve been reading a lot about the Paleo diet recently (inspired by some posts on this forum) and after some research I decided to try removing gluten from my diet.

I was amazed to find that after 2-3 days of being gluten-free, some RSI pain which I had suffered from for years had completely gone.

The RSI pain was basically carpal tunnel syndrome in both wrists, which started pre-Propecia. I developed it after some intense computer work (long hours working on my business). However I now realise that the pain dramatically worsened a few months after stopping Fin.

I didn’t mention it in my first post as I didn’t connect it to Fin, however it now seems that it is yet another symptom that I can blame on Fin use.

Has anyone else had results from going gluten-free?

I’m quite excited by this development, it’s really the first real glimpse I’ve had into what is going wrong inside my body.

I don’t think removing gluten is a cure for anything, in fact it’s just fixing a symptom of a larger problem (gut health), but it’s a start at least.

#11

Today I met with an Endocrinologist after being referred by my GP due to a low “LH” blood test result.

I told the doctor all my symptoms in detail. He used some device to look into the back of my eyes (not sure what he was looking for) and also did a check of my testicles. He said everything was fine.

I mentioned Propecia and my suspicion that it caused all my issues. He said that was impossible (as expected) so I showed him a printout of the recent study in the Journal of Sexual Medicine. He said the study was irrelevant in my case since I didn’t experience side effects while on the drug, only after it. I didn’t see any point in pursuing the issue.

Based on my symptoms he felt the problem was likely to be low thyroid or low testosterone, and his initial solution? Viagra. I was really hoping for a better response from this specialist doctor than from my GP, who also suggested Viagra.

He has requested more blood tests, including Testosterone again, but this time to be done at 9am when Testosterone is high. The other tests include some I’ve already done and some new ones:

LH/FSH
Thyroid Function Tests
Urea & Electrolytes
Liver Function Tests
Full Blood Count (coulter)
Prolactin
Testosterone
Androstenedione
Dehydroepiandrostene Sulphate (DHEAS)
Vitamin D
SHBG

I knew that I shouldn’t expect much from this meeting after reading some of the posts on this forum, but still, it was disappointing.

The latest test results wont come back for a few weeks so I’m thinking about what to pursue in the meantime.

#12

Your RSI was probably made 10 times worse due to finasteride. As a result of muscle loss, your tendons may be put under more strain.

One question for you vanish:
Will you be going to see another endo in the UK??

This may be my next plan of action -to go see someone like Professor Monson at the london clinic:
thelondonclinic.co.uk/consultants/monson,_professor_john_patrick.aspx

#13

Yes I do plan to see another endo privately, I think I’ve taken the NHS route as far as it will go.

The only problem with going to a standard endo like the one you mentioned is that they are likely to have the same narrow mindset as any NHS endo would. It’s still worth a try of course and hopefully they will take a closer look at the problems since you’re paying.

Ideally I want to find a “functional” endo who is open to alternative solutions and willing to figure out the underlying cause of low thyroid/testosterone rather than just throwing a drug at it.

I’d be very interested in hearing what Professor Monson says if you go ahead and meet him.

#14

That will require extensive testing, if they even have any idea where to look.

Otherwise, scientific research may be required to try and figure out the source of the issue.

#15

Professor Monson is an expert in pituitary disorders.

I’m sure he would be open to ‘BASELINE INVESTIGATIONS’ or ‘DYNAMIC TESTING’ as outlined here:
endotext.org/neuroendo/neuroendo12/neuroendoframe12.htm

BASELINE INVESTIGATIONS:
Basal concentrations of the anterior pituitary hormones and hormones produced by their respective target glands should be measured. Serum samples should be taken unstressed, with no physiological or pharmacological manipulation, between 7 and 9am when serum cortisol and testosterone levels are highest. This is important given that the decision to proceed to dynamic testing is based on these levels. The pituitary hormones may remain within the normal range despite low levels of target hormones indicating that target gland failure is consequent upon understimulation by the pituitary. Baseline investigations are sufficient for the diagnosis of secondary hypothyroidism and hypogonadism and will also confirm virtually complete ACTH deficiency.

Baseline investigation of pituitary function:
•Adrenocortical axis: serum cortisol (0900)
•Thyroid axis: T4 or free T4, TSH
•Gonadal axis: men -testosterone (9am), SHBG, LH, FSH;
•Prolactin
•Insulin-like growth factor-1
•Paired plasma and urine osmolality

DYNAMIC TESTING:
Dynamic pituitary function tests may assess the hypothalamic-pituitary unit (e.g. insulin tolerance test, glucagon and arginine tests) or directly stimulate the anterior pituitary with pharmacological doses of synthetic hypothalamic peptides and the pituitary hormone response measured (e.g. TRH, GnRH, GHRH tests).

#16

I agree that finding the ultimate underlying cause will be very difficult.

I just meant that I’d like to find a doctor who is at least willing to investigate things further… the doctors I’ve seen so far have shown little interest. Of course that could be because they have no idea where to look.

#17

This does sound promising - let us know if you visit him. My endo did mention some dynamic tests like those described in the list (stimulating the pituitary etc.) depending on blood test results. Now I just need to wait 6 weeks for the results (that’s the NHS for you) and if he doesn’t proceed further I may visit Professor Monson or someone similar.

#18

I finally got my latest blood test results back from the Endo. He commented that LH/FSH were low and Prolactin was too high. Next he wants to re-test and then possibly do an MRI of my pituitary gland.

Have other people gone through this process with Endos? I assume he’s looking for a pituitary tumour which would explain the low function, but I wonder if it’s worth it.

#19

Many ,including me,have done MRI with negative results. I am 100% sure your MRI will be negative too.

#20

If your endo wants a scan of your pituitary, he is probably looking for a Prolactinoma/macroprolactinoma.
I would definitely go ahead with the test.