T Nation

Ex-Propecia User. Major Crash. Endo is Clueless, Help


#1

Hi all,

Hoping I can find some help and support here for what seems like a dead end situation Ive got myself into…

Started taking propecia for hairloss for 5 years (1mg a day)
Came off propecia after noticing a significant drop in sex drive and ED
During these 5 years I go from top performing sportsman to lazy and overweight and unmotivated
I breeze through university but then this new found fatigue causes me to take the easy options in life and walk away from my chosen career path
I also develop severe psoriasis during this period while on propecia
I literally go from top performing alpha male to rock bottom

I have been off propecia 5 years and somehow managing to exist with all these symptoms and just get by
Then after training in the gym for 3 months before a holiday to Las Vegas I crash majorly
(was taking grenade fat burners twice a day for 3 months during this period)

I now

  • Find it impossible to get up in the mornings my eyes sting and my body is so weak I can barely stand up without assistance
  • Can not remember anything and have no concentration
  • Can not play any sport as I am out of breath instantly and my body is so weak
  • Can not train in the gym as I am then in pain for upto 7 days
  • Have no regular digestive routine and am always constipated
  • Never ever have morning wood
  • Erections are weak and orgasm is almost non existent
  • Testicles / penis have shrunk and always feel like they are trying to go inside
  • Severe depression and feel like I have lost my personality

Having been to see a private endo he has done the attached tests and also recently and SST for Cortisol which came back normal

He is at a loss and seems completely unaware of any permanent damage caused by Propecia / Finasteride and says maybe I have ME which I feel is a complete cop out

Please can anyone point me in the right direction

I suspect TRT may be the best route to go

Thanks
Daniel


Estradiol: Why You Should Care
#3

Labs I have had done as follows

Total Protein 71 ( 60-80g/l)
Albumin 48 (35-50g/l)
Total Bilrubin 10 (0-21umol/l)
AST 20 (0-37IU/L)
ALT 28 (10-41IU/L)
Prolactin 190 (86-324mu/L)
Oestradiol 46 LOW (99-192pmol/L)
Testosterone 13.3 (9.9-27.8pmol/L)
VitaminB12 424 (180-2000ng/L)
Serum Folate 9.48 (4.6-18.7ug/L)

P3NP 10.4 HIGH (3.3-9.7ug/L) (Liver test to take methetrexate)

SHGB Normal
Vitamin D 138.9 nmol/L

Serum TSH level 2.58 miU/L
Serum prolactin level 273 (86-324mu/L)

Serum FSH level 9.2 (1.50-12.40IU/L)
Serum LH level 4.9 (1.70-8.60IU/L)

Anti Nuclear antibody Normal

SST test for Cortisol has also come back normal


#4

Any help would be great as I am now at rock bottom with this issue

Is there a issue here with ny Oestradiol level showing as low?

Any other ex propecia users have any experience they can help me with?


#5

I took propecia for 10 years and it caused me a lot of issues related to estrogen and prolactin. In your case you have lowish T but high FSH meaning it a problem with your testes. I believe propecia would affect your HPTA and not your testes direct but I could be wrong. If you are primary hypo which your labs indicate a highe T level via TRT should raise your E levels too. You prob feel pretty nasty with low t and low E.


#6

Thanks for your comment BLshaw

Have you managed any sort of recovery?

My life is a living hell and all my endo can come up with is he says I have ME


#7

Propecia in a few guys causes an epigenetic change in gene expression. Typically we see very low LH/FSH, but that is not you. Many be changes in testes.

Your posted details also suggest changes from DHT deprivation.

When FSH is a lot higher that LH in young men, we suspect possible FSH secreting testicular cancer. Ask to get examined if any tenderness or something feels odd.

Need SHBG result and range.

Vitamin D? Vit-D25?, Vit-D2, Vit-D3?

AM cortisol?

Low E2 indicates low average FT, FT varies a lot and lab may have hit a peak.
TT is mid range, doc may not see that you need TRT

You crashed on stimulants and over training. Could be adrenal fatigue.

TSH should be nearer to 1.0
Were you not using iodized salt?
Outer eyebrows sparse?
Feeling cold easier?

Please check oral body temperatures as per the thyroid basics sticky to eval your overall thyroid function.

Labs: - fill in the gaps
TT
FT
E2
prolactin
LH/FSH
TSH - post body temps and we can firm up need for following
fT3
fT4 - please not T3, T4
CBC
AM cortisol ???
CBC
hematocrit
fasting cholesterol
fasting glucose
DHEA-S

Changes to testes and penis really do not make sense with your current LH/FSH, suggesting that something deeper is going on. Maybe low DHT shut down your junk. DHT is essential for development of male sex organs, not just T. If you get high normal TT and FT, then FT–>DHT may help things. TRT will shutdown LH/FSH and you would need hCG to maintain/restore testes as well.

Is your scrotum tight as well?

So the above covers major hormones and cortisol. What is missing is Vit-D25 hormone, made from Vit-D3. Take 5000iu Vit-D3, find tiny oil based caps.


#8

Ksman thank you greatly for taking the time to look at my results!

I am new to all of this so please excuse my lack of knowledge

  1. I will ask my GP for my SHBG range and get this posted up

  2. My vitamin D came back normal, should I be having a more detailed test?

  3. I took a secretion tablet the night before and had a cortisol test in the morning which came back normal

  4. I just use normal salt, what action should I take in regards to iodized salt? Eyebrows are fine but yes I do feel the cold easy

  5. Yes my scrotum is tight like my testicles are trying to go inside

  6. Is there a test for DHT levels?

I am having major problems with my endo who just says this looks like ME

Do you think super high levels of testosterone could solve this?

Thanks in advance…Daniel


#9

The list you provided already has LH/FSH etc on it

Just to confirm I don’t need retesting for these you just want me to get the ones that are missing?

I have given testosterone but you need free testosterone right?

Thanks for bearing with me - like I said Im on the ropes right now and practically bed bound


#10

Need to know what the Vitamin D test was? D2, D3, D25?
And range.

Can’t work with “normal”

A test to stimulate cortisol is not the point. The result indicates that your pituitary was able to be stimulated to release cortisol, but we do not know what your cortisol levels typically are.

You need FT measured directly, not calculated.
Very low E2 suggests very low FT.

Yes, there is a DHT test. But if FT is low, DHT will be low and we do not learn very much.

What is “ME”?

Your body is not responding to what LH you have. Seems like hormone receptor and gene espression cascade is damaged.

Please check oral body temperatures a per the thyroid basics sticky. This will tell us something about your overall thyroid function.

Read these stickies found here: About the T Replacement Category

  • advice for new guys
  • things that damage your hormones
  • protocol for injections
  • finding a TRT doc - your biggest problem
  • thyroid basics

#11

Brilliant thank you KSman!

So I will get FT done (This is free testosterone I assume yes)

I have had tests for hashimotos etc which all came back normal

I will order a therometer and get my body temps for thyroid

This forum has given me a glimmer of hope, propecia has really dragged me down to rock bottom

Can I ask are you a doctor Ksman or someone who has aquired alot of knowledge along the way? You’ve taught me more in this post than years of GPs and private doctors


#12

As stated in the post if stickies I refer to; I am a retired engineer who reads too much.

??ME??


#13

Hi Ksman

ME as in

It is similar to CFS

The private Endo I am seeing has said he hasn’t been able to find out anything from my test results so he is now at the stage of saying I have ME /CFS

Are you aware of this condition? Whats your thoughts

Thanks
Daniel


#14

We still do not what your vitamin D test was or result.
Do not know AM cortisol.
If tested before, find them or retest.

Please try these things:

  • fish oil, nuts, flax seed oil meal
  • Ubiquinol form of CoQ10, get the spelling right, 100mg for trial, 50mg later
  • Vit-D3, 10,000iu per day, 25,000iu first 5 days, find 5,000iu tiny oil based caps
  • all of above are oil based, take with a meal that has fats/oils and avoid high fiber foods

Your TSH is a mess and you are iodine deficient.
Need those oral body temperatures to see how bad things are.
Thyroid hormone FT3 regulates your mitochondria which product ATP, the source of cellular energy, which you do not seem to have. All of that is part of your body temperature control loop, so we need those temperatures that I request. And CoQ10 is essential for mitochondria function as is selenium that you need along with iodine.


#15

Ksman - thanks

Vitamin D
D2 + D3 lvl

138.nmol

How should I approach the Iodine issue with my endo?
Also how do I treat myself with Iodine

Ive been tested for hashis etc

My mum and sister both have underactive thyroids fyi

Thanks in advance


#16

I also forgot to mention that the doctor diagnosed with me a small goiter

He then seems to now ignore this and says my thyroid is functioning fine

Thanks


#17

Top of the morning to you Ksman

My temps as requested

Am 36.5
Mid afternoon 36.8
Night time 36.6

Also something else I have noticed recently is muscle twitching in my arms, almost like a throbbing heartbeat followed by pins and needles in my hands

I have an appointment with my private endo next Thursday fyi

Thanks in advance
Daniel


#18

I discuss iodine replenishment in the thyroid basis sticky and refer you to that. Do pay heed to the need for selenium.

What is the time line for the sensations in your arms?
Doc should have you do some muscle work that he is opposing to judge strength and nerves. Lifting straight arms up/down, grip strength etc.
Seems like you have developed a nerve function issue. Any numbness on face or ears?
Any parts of your skin that seem numb, little sensation?

TRT probably would help getting you normal and higher DHT might be useful, and learn to live with hair loss as the price of admission.


#19

Thanks KSman - again Im so greatful and would like to donate £££ to this forum when I begin to recover

I get the nerve issue when ever I am lying down or sat down relaxing

My main issues at the moment

Are my extreme bed bound fatigue
Low libido, ED and my penis feels different and shrunken testes
My poor brain function and depression
My stamina, at present I cannot play any football due to being out of breath instantly
Weight gain in stomach legs and ass

Im off propecia and would never touch the stuff again its poison

Hopefully the increase in test and estrogen help alot of these problems

As requested I will get my doctor to test FT, Cortisol AM, FT3 & 4 and DHEA

Thanks again Daniel


#20

You have a major problem with your metabolic rate.
This can be adrenal fatigue increasing fT3 that blocks fT3.
And cortisol can be low as part of adrenal fatigue
See references to adrenal fatigue and Wilson’s book in thyroid basics sticky.
And/or you have a CoA10 deficiency.
You need to do more labs and self-experiment with things that I suggested.
Probably a long road to recovery, it will take a lot of work and reading.


#21

Hey Ksman

I have began CQ10 and Iodine

I am seeing my private endo on Thursday

I have had a couple of tests for Adrenal Fatigue but will ask for moring etc

Would you recommend treating this with Hyrdocortisone?

I believe I am also going to start Androgel and HCG on Thursday! As per above I have very Low estrogen and low normal testosterone, do you think getting these in high range will make me feel a lot better?

He is saying maybe it is CFS/ME

Let me know your thoughts

Thanks
Daniel