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Old 09-21-2011, 03:31 AM   #1
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Empty sella syndrome, causing low T, high prolactin, can i get off TRT?

Hi to all,

I am male and mid 30's been in good health most of my life, but a couple of years ago my health turned for the worst.

Fatigue, lethargy, aching muscles, brain fog and forgetful, dizzy and spaced out and also lost my libido and could not get an erection.

I was diagnosed with Low T secondary hypogonadism caused my secondary empty sella syndrome.

This was diagnosed by, initial blood tests discovered high prolactin (just over double the normal range) and low T FSH and LH were low.

I went for an MRI suspected with a prolactinoma. The MRI was not very clear, they could not see any tumours BUT they could also not see much of my pituitary as it appeared damaged/ missing.

I have been on sustanon250 shots every 3 weeks for 6 months and felt appaling with it. Absolute rollercoaster ride. I am now on Testim Gel due to the shortage globally of Sustanon.

I have been feeling a bit better on Testogel.

But what I am asking for is, I know that high prolactin can naturally lower Testosterone. I would have been put on cabergoline if they had found a tumour. But apparently the MRI was not overly clear.

The endo said it was secondary hypogonadism and that my testes were probably ok but it was to do with having low LH and FSH. Could these (LH and FH) be lowered because of Prolactin?

I guess that what I am asking you guys is now after having been on TRT for over 6 months I recently had my bloods redone and my prolactin and doubled again in the last six months.

Should the endo have considered using cabergoline to lower my prolactin before just putting me on TRT? just to see if my T levels got closer to normal?

BEFORE TRT my blood results 6 months ago

Testosterone 6 (range 11-36nmol/L)
LH (U/L- no range on my printout) 2.6
FSH(U/L- no range on my printout) 2.6
Oestradiol 86 pmol/L range not on printout

Prolactin 1200 (range 1-550)


Bloods just in: (After being on Test for 6 months- still on TRT)

Testosterone level - test spoiled in lab bloods being redone(will repost later)
LH is now <0.5
FSH is now <0.5
Oestradiol is 169 pmol/L

Prolactin is now 1970 (range 1-550mu/L) probably for men and women?


Should I be concerned that my Prolactin has almost doubled in 6 months?
My oestradiol has also increased but I guess that is due to all the replacement Testosterone.

So do you think that these Prolactin results would have been suppressing my natural T ? With the prolactin results increasing and an unclear MRI scan that didn't show a prolactinoma then it's probably a tiny non functioning tumour??

I just wish that perhaps my endo had at least tried to use dostines or cabergoline just to see if my T levels increased naturally as my prolactin readings came down. I really do want to come off the T replacement if my body has a fighting chance. Especially as the longer I leave it being on TRT the more my options shrink, especially as I have noticed shrinking testicles etc.

I am due to see the endo in another 2 months time(unless it gets pushed back again!) I am seeing my GP in weeks and he mentioned it was strange that the endo didn't do anything with the prolactin levels. He has in fact even wrote to the Endo to let him know that the prolactin has increased.

I would like to go back now and see if they could try and restart me naturally because I don't feel good on T therapy. Even if it was a long shot.. Is it worth me looking into it? Got a feeling that endo's nowadays just seem quite happy to dish out TRT too easily.

Please let me know what you think guys.

Thankyou

 
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Old 10-21-2011, 09:02 AM   #2
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Re: Empty sella syndrome, causing low T, high prolactin, can i get off TRT?

i have this same issue as you with virtually nonexisting pituitary, i mean it is there but completely compressed due to empty sella syndrome.....I have all my pituitaty hormones low and currently on Testosterone injections and hydrocortisone, but still not 100%, always tired, no constant energy, mood problems......

wondering how this is going for you, i dont think this is an easy problem to solve....am losing faith on treatment to be honest

 
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Old 12-05-2011, 07:43 AM   #3
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Re: Empty sella syndrome, causing low T, high prolactin, can i get off TRT?

I also have these problems with a partially empty sella with low testosterone and high prolactin. Have been taking androgel for 5 weeks to treat low T, but instead of raising my testosterone levels it has shut me down. I would also like to get off T therapy. Wondering how you guys are still doing on TRT, or if you have found other ways to treat low testosterone.

 
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Old 12-05-2011, 08:37 AM   #4
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Re: Empty sella syndrome, causing low T, high prolactin, can i get off TRT?

Quote:
Originally Posted by JM26 View Post
I also have these problems with a partially empty sella with low testosterone and high prolactin. Have been taking androgel for 5 weeks to treat low T, but instead of raising my testosterone levels it has shut me down. I would also like to get off T therapy. Wondering how you guys are still doing on TRT, or if you have found other ways to treat low testosterone.
HI there JM26 How long you been Empty Sella? and how old are you? How did you know something was wrong with you.

Don't worry you are not alone. I have had it for 2 years now unfortunately. Still on TRT and stopping shortly, going to try and go for something to get my Prolactin down first.

I have been on Testogel and feel rough, stil feeling low testosterone and all my bloods came back as low even on TRT. I am more than happy to chat with you either on this board or through PM's.

Why did they not look at lowering your prolactin first? before TRT. What are your lab results please. I will try and help.

Good luck

 
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Old 12-05-2011, 07:10 PM   #5
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Re: Empty sella syndrome, causing low T, high prolactin, can i get off TRT?

Thanks Carlos,

I don't know how long I've had empty sella syndrome, I only found out about it two months ago when I did a pituitary scan. But Iíve known for several years that something was wrong, I was always feeling tired, constantly fatigued, had poor memory and concentration, low libido, aching bones/joints, constant anxiety and depression. A few months ago I did these tests:

September 2011

Total Testosterone: 197 ng/dL (280-1000)
Free Testosterone: 8.9 pg/mL (8.7-55.0)
Estradiol: 14 pg/mL (0-56)
Prolactin: 34.2 ng/mL (1.6-18.8)
Growth Hormone: 0.6 ng/mL (0.0-4.0)
SHBG: 13 nmol/mL (10-57)
TSH: 3.08 u IU/mL (0.34-4.82)
LH: 11.5 mlU/mL (2.0-12.0)
FSH: 10.2 mlU/mL (1.0-12.0)

My doctor put me on a 10-day trial of clomid to determine if my low T was primary or secondary. After the trial period, I tested again and the results were:

October 2011

Total testosterone: 458 ng/dL (280-1000)
Estradiol: 27 pg/mL (0-56)
Prolactin: 11.2 ng/mL (1.6-18.8)
SHBG: 21 nmol/L (10-57)
TSH: 1.79 u IU/mL (0.34-4.82)
LH: 13.7 mlU/mL (2.0-12.0)
FSH: 20.8 mlU/mL (1.0-12.0)

Afterwards we determined that my low T was a combination of primary and secondary. I decided to take androgel for treatment. However, after a month on androgel, I had the following results:

November 2011

Total Testosterone: 129 ng/dL (280-1000)
Estradiol: 6 pg/mL (0-56)
Prolactin: 16.1 ng/mL (1.6-18.8)
LH: 3.1 mlU/mL (2.0-12.0)
FSH: 4.3 mlU/mL (1.0-12.0)

My doctor says this is all normal, that these low numbers do not count as suppression/shutdown, and that if I increase the dose and continue on TRT, my testosterone levels will stabilize, but I am not sure. What are your thoughts on this? Please tell me what you guys think. Thank you.

 
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Old 12-06-2011, 03:57 AM   #6
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Re: Empty sella syndrome, causing low T, high prolactin, can i get off TRT?

Hi JM

I guess that you are 26? If so then unless you really have to be on TRT. TRY and not go any further just yet. (This is my opinion based on the research that I have done) I am in the same boat as you..But maybe a little worse as I am 37 and my thyroid labs are all over the place..i.e TSH from between 3 - 7. My testosterone was a little below yours before starting TRT too, my LH and FSH were also very low before starting any TRT. Which makes it look like my Pituitary.. Although my testes way well now be shot too.. (but I don't know this because I never had any clomid.

But from what I can see, before you started TRT your LH and FSH were fine i.e high (screaming at your testes to make more testosterone). Your prolactin was high.. twice over the range -the same as mine. But that has become normal too now. maybe the clomid but I'm not sure..?

Don't believe what ANY doctor tells you about not being shutdown. ANY amount of testosterone WILL shutdown ALL of your own supply that is a fact. For the first few days you will feel the benefits of TRT. This is because your body still has it's own supply plus the extra T being supplied through the gel. But your body once seeing the extra supply. Will completely shut down your own and you will then be reliant upon the gel. Your Testes will atrophy without taking HCG. Important if you want to have kids. TRT is never to be used without warning you about this.

This is where I feel I was let down. They never really went into all of this. TRT is for life, it's not something to take or leave. Once you are shutdown it makes it alot more difficult to get your own Testosterone back up and running especially the longer you are on TRT.

My advice, look for a different doctor if they think this will not shut your own testosterone down.. they are inept. Find a good endo.

I am trying to stop TRT as soon as my prolactin comes down to normal. I will have been on TRT for approx 9-10 months at this point. It will take at least a couple of months for my body to make its own again (if it ever will now). This is going to hurt... do not end up in my boat if you can help it.

Get them to look at WHY your testes are not supplying the goods because as far as I can see your pituitary is not at fault (you have high lh and fsh..this is good!) maybe a urologist to look at getting your testes checked out. Your testes gave out a good level of T when on clomid.

If you want to stay on TRT then you will need to adjust your dose definitely to a higher amount of gel. But this is for life and if you are young, maybe take a year or so now you are diagnosed to try ALL or any alternatives to getting your own supply working. IF it doesn't then you can always fall back on it as a last shot. But I would not give up without a fight.

To get off TRT you just need to stop and let your body try and make it's own again.


Good luck mate

Last edited by moderator2; 12-06-2011 at 10:57 AM. Reason: please do not post a commercial website, for any reason.

 
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Old 12-06-2011, 05:54 PM   #7
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JM26 HB User
Re: Empty sella syndrome, causing low T, high prolactin, can i get off TRT?

Thank you for your advice, Carlos. Iím not quite sure what to do right now, whether I should continue on TRT or just stop completely. Iím looking for a new doctor but itís difficult to find one who knows how to properly treat low T. I feel slightly better after raising the dosage and applying it twice a day, instead of once, for the past few days. I donít know if this will cause further suppression or not. I will probably continue with TRT until I find a new doctor who can determine exactly why my testes aren't working and try a different treatment. Hopefully continuing on TRT for a short period wonít cause any further harm, especially regarding fertility.

Have your prolactin levels improved? How will you raise your natural T production after coming off TRT, with clomid/HCG or another method? I wish you all the best with your treatment, it sounds like a tough situation, hopefully youíll find a solution.

Good luck

 
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Old 12-12-2011, 12:30 PM   #8
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Re: Empty sella syndrome, causing low T, high prolactin, can i get off TRT?

Hi JM

Thanks for your reply mate. You would be best staying on TRT for now just while you get a better doctor maybe a urologist if it's an issue with your testes? continuing on TRT won't do you any further harm but you do want to find the root of the problem and not stick the proverbial band aid that TRT is seen to be. But bare in mind ANY supplementing of T WILL shut your testes down, that is a fact. regardless of the dose. As soon as you supplement your LH and FSH will drop to near zero. This indicates you are shutdown as your body doesn't see any point in making your own T. You could look at them giving you HCG this will keep your testes from shrinking and should prevent you becoming sterile.

As for me? Well, I should be finding out very soon if my Prolactin has lowered by using thyroxine (my tsh was about 6, so trialling levo) If this fails to lower it then they will look at using cabergoline or similar. Once I know for sure my Prolactin is low. THEN I will just stop TRT, and see what happens, my testes should start making their own within 8 weeks or so. Not sure what the levels will be, could well still be low. But I'm hoping that all along it's been the high PRL which kept my LH and FSH fairly low.. thus inhibiting my own T production.
I'm in the UK and they don't really go in for PCT drugs i.e clomid or nolva. I too figure that adding all these other drugs just makes the whole thing more cloudy. After all with my TRT being poorly managed i.e poor dosing frequencies and only choice of androgel ,sustanon or nebido. How badly will they manage all these other drugs!!

I just want to stop feeling the joint aches and fatigue and dizziness and the bad anxiety that my low T seems to cause. I figure at least my body may have a fighting chance of getting better if I let it get on with it. But those couple of months will be absolute hell thats a fact. Zero testosterone until my body starts up..not looking forward to it.

But I will keep you updated on how things go and I really wish you the best of luck getting a solution, please let me know what is happening with you.

Best wishes

 
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Old 01-18-2012, 04:04 PM   #9
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dp14 HB User
Re: Empty sella syndrome, causing low T, high prolactin, can i get off TRT?

Hi to everyone
I have been told I have empty sella-low T and high prolactin. This is new to me
I had thought it was an adrenal issue. I found out Dec 11 -last month and I have a appointment with a endo feb 3. Any advice, it seems like you guys have been working on this for a while.

testosterone 198
prolactin 35

thanks dp

 
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Old 02-05-2012, 05:15 AM   #10
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Re: Empty sella syndrome, causing low T, high prolactin, can i get off TRT?

dp14, so what did you find out so far?

 
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Old 02-05-2012, 03:40 PM   #11
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Re: Empty sella syndrome, causing low T, high prolactin, can i get off TRT?

imrj I went to the endo fri hes not sure. I had more blood work done. I should find out in about ten days. The new tests are prolactin-acth -cortisol.
I also started seeing a holistic doctor about a week ago because my health was so bad. I could hardly walk up stairs. almost no energy.
The holistic dr thinks its clearly adrenals. the endo thinks adrenal problems are rare. I am now taking 4 supplements from holistic dr and I feel better than I have in yrs. dp

 
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Old 02-23-2012, 07:12 PM   #12
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Re: Empty sella syndrome, causing low T, high prolactin, can i get off TRT?

Hi all-my tests came back from the endo
testosterone 202
prolactin dropped to 25 from 35
acth 21 range 10-46
cortisol 5.8 range 3.1-16.7

the endo prescribed Cabergoline to lower prolactin level.
then when lowered the t level should rise.
However since taking the supplements from the holistic dr
my prolactin has dropped 10 points. He thinks my t level
will rise given about 2 months. I guess I will wait and see.
my acth seems ok from the pituitary
but my LH was 1.5 range 1.5 - 9.3-- to me that is low.
Im feeling better but still have some poor numbers
Has anyone had any success raising their testosterone

dp

 
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