26 year old with Prolactinoma trying to kick start HPTA

Discussion in 'Men's Health Forum' started by cwoody123, Feb 18, 2007.

  1. cwoody123

    cwoody123 Junior Member

    I have been following these posts over the last week and i am amazed at how many of you seem to be in the same situation as me!
    A little bit of background information about me, Im a 26 year old male. last year i was diagnosed with tumor on my Pituitary, it was a prolactin secreting tumor (Prolactinoma)

    The initial diagnosis of a Prolactinoma was due to being diagnosed with sever testosterone deficiency, I was experiencing cognitive and memory problems to the point where i could not talk properly. I had also had great difficulty in keeping my weight down over the years, by the time i was 17 i had ballooned to 245 lbs in this time i developed Gynomastia and occasionally i started to secret liquid from my nipples!

    At the age of 19 I went on a very low calorie diet and lost 90lbs but was left with horrible Gynomastia. Eventually I got the go ahead from the NHS to have an operation to remove the gyno. All went successful and i thought that was the end of it!

    After that i decided to try and harden my body up a bit and start weight training. Over 2 years i got very minimal gains! I also was experiencing severe anxiety and zero sex drive.

    I meet my now fiance and started to experience severe ED, my fiance was great about it and told me to see the doctor which i reluctantly did.

    He sent my blood off for testing and it came back: testosterone=4 nmol Prolactin 33,000 mul (3,300 ng/dl) they said that this was a sure sign of a Pituitary tumour, I had an MRI which confirmed a 1 cm Prolactinoma.

    They told me that the hormone Prolactin is regulated by a hormone called Dopamine and that they have an effective drug called Dostinex (Dopamine agonist) which has very good results in reducing Prolactin levels. After 1 year my Prolactin went from 33,000 to 156 well within the normal range.

    As soon as i started taking Dostinex my libido started to return with force! And after some time I started to sprout facial and body hair. My last T levels were 13.9 and everything was feeling good, i had consistent morning wood and spontaneous erections.

    I then thought i would try and bump things along for my next appointment as i felt good but not at 100%. I read a great article on the effectiveness of clomid at restoring fertility in men with Prolactinomas. I thought prescription drugs was a bit over kill and looked for an alternative, i proceeded to buy 2 bottles of 6-oxo, within days my libido was high and my balls felt bigger. I started to experience itching in my nipples and thought that 6oxo was causing gyno again so i ceased taking it. Within days my libido went and i felt terrible, looking back i wish i never had taken it!

    I am now worried that when i go back to see my endo in April that see will just chuck me on TRT like she mentioned the last time i was there, i mentioned drugs that could help my HPTA along and she dismissed them! She said the best course of action would be TRT.

    I dont believe this is the case so i am going to try do something about it by April!

    I have had my blood taken a few days ago to see where my hormones are at at the moment, as soon as i get the results back, providing prolactin is still low i am going try and kick start my HPTA with Clomid & nolvadex:

    The cycle i have planned so far looks like this:

    Week 1 Clomid -100mg nolva-20 eod
    Week 2 Clomid -50mg nolva-10 eod
    Week 3 Clomid -25mg nolva-5 eod
    week 4 Clomid -25mg nolva-5 eod

    I will then have just over a week before I get my blood tested for the endo. I was just wondering what you all think of this cycle and whether the addition of hcg would be something to think about?

    Thanks for listening to my ramblings :)
  2. eeso

    eeso Junior Member

    Hey mate,

    I believe I am currently in a similar position to you with a test level floating around 13.

    I did a "Restart" last year after being on TRT for 2 years. During my restart I used 40mg clomid a day, along with 20mg nolva a day. I was very moody and didn't sleep well at all the whole time I was on it. I also got floaty spots on my vision which I still have, and my joints deteriorated very painfully whilst on the SERMS. Anyway, my point isn't to scare u off because many people take SERMS without a problem...but

    Whilst on the drugs my total test went up to 21, and LH and FSH were elevated nicely. However a couple of months after ceasing their use, my test level crashed back to 7 (10-33). I had another test a couple of weeks later and my test was 9, but LH and FSH hadn't risen at all. I lost a lot of strength, lost muscle, and gained fat.

    I stayed off the TRT though, and over the next few months I gradually started feeling better and better, and my libido started returning with a vengence! At first i required cialis for a month or 2, but things have continued to get better and better and I no longer require it. My muscles have filled out again, and the fat I picked up around my waist and handles is disappearing. My stamina is also up.

    However, when I'm feeling run down and out of energy, losing libido etc, I take a quarter of a pill of clomid and a quarter of nolva. So that's 12.5mg clomid, and 5mg nolva. And let me tell u - that's all I need to carry me through another week! I believe that when your testosterone levels are low but not disastrously low, like ours (im guessing I might be up to around 13 now, same as u), then just a gentle push from a low dose clomid/nolva is all u need. Just a gentle push in the right direction, rather than hammering your HPTA with massive doses of clomid/nolva which really pump things very hard, and throw other hormones out of balance, and everything u throw out of balance your body has to try and re-stabalise once u come off the heavy doses.

    My thinking is along the lines of some others on this board who believe that an extremely slow taper of nolva is required after doing a heavy restart attempt with high doses of clomid and nolva to begin with.

    Your case is different in that you are not doing a "restart" as such, but u want to optimise your levels. I think a gradual approach may be your best bet to start with. Something I've learned first hand is that your body takes time to adjust, so small changes can be the most harmoneous.

    I would like you to try very low doses of clomid and nolva together, and just see how they make you feel. If you respond positively, then try only taking this small dose when you "feel" u need it. This is what I'm doing, and I'm finding I am going longer and longer without feeling like I need another dose. However if u ingest large doses of clomid and nolva straight away then you're going to completely miss any window of feeling great.

    I say go with the feel of things instead of just following a plan you've written down.

    If the gentle approach doesn't work, you can always try your plan b later.

    I know I haven't given an indepth scientific view here - all I offer is my first hand experience on what I believe has been a success restart of my HPTA. Although I haven't had any recent labs done (I dont want to jinx things), I think having sex 3 times a day every day of the week, awesome pumps at the gym, and sleeping deep and soundly are a good indication that I am recovering well.

    Best of luck mate!
  3. BigAk

    BigAk Junior Member

    I'm with full agreement with eeso on his advise.... I've come to the same conclusions myself.
  4. cwoody123

    cwoody123 Junior Member

    No thats sounds like very sensible advice mate. I think the thing that made me want to be more agressive is the time fram before my next visit too the endo.

    I got some of my blood work back today:
    prolactin 198 mul
    LH 2.4
    FSH 2.0
    Estrodial 80 pmol/l.

    I will defiantly consider starting on a low dose to see how i react to clomid, the floaters certainly don't sound like much fun. Im a bit worried about the Tomaxofin i got, there called Genox tomaxofin 10mg tablets, anyone else used this brand?

    Thanks for all your help :)
  5. pmgamer18

    pmgamer18 Member

    What happened when you took the 6-0X0 is you got your Estradiol down lower and this made your testosterone go up. A rise in T will make your nipples act up. Your stopping it gave you a surge in your estradiol it comes back with a vengeance. Here is what I would do go back on it do the lower dose because I don't like 6-0X0 it is a suicide inhibitor this kills what makes Estradiol and if you go to low it takes longer to come back up. So do a lower does when your wood comes back your Estradiol is in the best range. Keep taking it but the day you can't get wood stop taking it until wood comes back the go back on it but take less. You can't just start a bad Pituitary Gland I have a bad Pituitary there is no way to start it again. Best if your T levels are to low to try hcg start at 100 IU's everyday.
  6. cwoody123

    cwoody123 Junior Member

    I see what your saying. Unfortunatly i do not have any 6oxo left as i sold it to a friend :-( See the thing is i don't actually know if my Pituitary is damaged. prolactin directly acts on The Hypothalomus iwhich inhibits GNRH secretion which then stops LH production and thus causes low testosterone, my system has been suppressed for years and has become desensitized.

    When my T was measured at 13.9 i was very ill so maybe it was higher. Before 6oxo I was experiancing morning wood almost every morning and my balls felt large, my sex drive was also very high, it took over a year to get to that point!

    I honestly think i have a good chance of firing my HPTA up permantly.

    Will the estrodial rebound balance itself out by itself?

    Has anyone had any negative effects on libido after taking nolvadex?

    Thanks for your input! :)

    O incediently my mate who i sold 6oxo too has reported he has lost his libido upon ceasing taking it. Ooops
  7. eeso

    eeso Junior Member

    I actually have empty sella syndrome which is bizzare to think it doesnt seem to be affecting me anymore? lol. But i haven't spoken to an endo about it so maybe it isnt affecting me at all anyway.

    Something else I forgot to mention about SERMS...

    We all know they have an effect on LH, FSH, Test, and estrodiol. However something people don't mention on this board is that they also affect other hormones. I don't have a list on me right now, but they seriously through a lot of other things out of range for me like progesterone and TSH too.

    I remember my progesterone was 5 (<3) on one lab when i was on 20mg nolva. My doc was quite concerned about all these things out of range, but a couple of months after ceasing all serms things settled back into range.

    However, I don't see how good it is for a restart to throw even more hormones out of whack.

    I'll do a thread on my recovery soon and things I learnt along the way. Only thing holding me back is I don't have a recent lab test to back up how i feel - i dont want to get one just yet because i feel great and if the numbers arent great too then they may affect things psychologically...
  8. cwoody123

    cwoody123 Junior Member

    Day 1

    50mg of clomid. 20 mg of nolva before bed.

    Obviously nothing to report yet.
  9. pmgamer18

    pmgamer18 Member

    See I understood you to say you got wood from 6-0X0 now that you said this it made your Estradiol go down to low and it can take you some time to get it back up. I just wish all of the guys would test this first before taking anything to lower Estraiol. Low Estradiol will mess you up big time.
  10. cwoody123

    cwoody123 Junior Member

    Day 2

    I have nothing to report really other than feeling pretty drowsy and a bit of acne on my chin. Balls are each about the size of a meduim sized plum and hard. Not sure you guys needed to hear that but i said it anyway lol

    Sorry i might have confused you a bit. I had morning wood every morning even before i took 6 oxo.

    I do have a concern that it is now the nolvadex holding back my libido more than anything. Has anyone ever noticed libido loss after taking Nolvadex?

    Thanks for your input ;)
  11. eeso

    eeso Junior Member

    Yes, nolva killed my libido completely. That's another reason I went to all the trouble of typing my previous posts for u so you would at least try low dose SERMS first to see how u responded. Using just enough to FEEL good is better than taking large doses just for the sake of taking large doses.
  12. cwoody123

    cwoody123 Junior Member

    I really do appreciate you taking time to relpy eeso. I guess i am a bit guilty of shooting from the hip sometimes rather than evaluating what people have already told me. :eek:

    I read your "Cured" post through and was quite shocked to see your crash after such good progress!

    I think i will continue nolva for a couple of weeks/month more after i finished clomid and gradually tapper down my dosage.

    So far i cant really say wether 100 mg of clomid is too much as i dont really feel any side-effects, i will be sure to reduce it if i do start feeling s**t thou.

    Thanks for all the advice mate ;)
  13. cwoody123

    cwoody123 Junior Member

    I just got my Total T results back and they are 12.6 nmol (about 365) My last T levels come in at 13.9 (400) Hosptials REF range is (10-38)

    There are a few varibles that might effect my T results im thinking:

    Low calorie diet = I have been dieting for 2 and a half weeks. I have lost 5lbs so far. I suppose i should have mentioned this before but i did not really know the effect of diet on androgens until i read a study today.

    6 oxo Rebound = This is where it all started going wrong, no doubt it have had a massive effect on my body!
  14. eeso

    eeso Junior Member

    Re: cured thread,

    I was taking high doses clomid/nolva during restart, and yes I crashed a couple of months after ceasing them. I never felt good on them anyway, and never felt good until a month or 2 after my crash labs where I had been off everything for quite a while.

    This is why I was suggesting u try steering away from high dose kickstart - it seems common people crash after them so I don't really see them being that successful. However the people have toughed it out after the crash and let things start up by themselves more gradually/naturally are having more success.

    So I think maybe clomid/nolva kickstart is helpful, but perhaps we need to be more gentle with it from the beginning...
  15. eeso

    eeso Junior Member

    If you see this thread:

    The doctor seems to be restarting kapri's nuts gradually with a reasonably dosed hcg, and "massaging" his pituitary back into action with low (low compared to what u normally see) dose clomid over time.

    And lastly I'll mention again, my high doses of clomid/nolva really messed up a bunch of other hormones that are normally fine for me, so I don't see how doing that can be good for recovery even if LH, FSH, and total test are raised quickly (and they crashed anyway, so what exactly did i get out of the high dose restart?? not much!)
  16. cwoody123

    cwoody123 Junior Member

    Well i will be watching this post with interest mate, what works for one may well not work another thou. If it turns out that i crash from my cycle then i will be sure to consider my options.

    I know we both have Pituitary issues but there are some very large diffrences in how they are affecting our HPTA.

    Day 3

    yesterday afternoon i started to think naughty thoughts and by the time i got home my libido was in full flow.

    Today when i woke up i had morning wood for the first time since the ceasing 6oxo.

    No side effects really, maybe get a little bit dizzy when i close my eyes when i go to sleep, but other than that i feel Tip-Top. My mind feels clear :)
  17. cwoody123

    cwoody123 Junior Member

    Day 4

    Everything feels fine at the moment, I can't say i have experianced any visual problems. Libido was high last night, everything remotley erotic seems to trigger my brain off lol

    Gym was a bit of a toughy last night, i didnt seem to have any energy in my lifts. i think is largerly due to my diet to be honest, i might start increasing my cals and add some cardio.

    I have got my next blood test on the 21st March.
  18. cwoody123

    cwoody123 Junior Member

    I just thought i would let you all know how i got on with my clomid cycle.
    I had my blood drawn 4 days ago, i had been off Clomid for 5 days by that point, here are my results:
    Serum testosterone: was 12.6 mnol(363) it is now 30.3 (873)!!
    SHBG was 39nmol.
    TSH 3.1 M/ul (Normal)
    Estrodial- 257 pmol was 80pmol (Big jump)
    LH 9.0 mnol was 2.4
    FSH 6.0 mnol was 2
    Prl 141 m/ul (about 7 ng/ml) was 198 m/ul (9.9 ng/ml)

    My estrodial was very high but i was informed that could be because of the SERMS skewing up the results as my SHBG is in the normal range. I just hope i don't crash now, so far i still feel good and have had good results in the gym.
  19. pmgamer18

    pmgamer18 Member

    You need to be off clomid a long time before you can get a good test on E2.
  20. cwoody123

    cwoody123 Junior Member

    what sort of time frame are we talking about it here before i should re-test, a month, 2 months?