Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop trt?

Discuss Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop trt? at the Men's Health Forum; Hi guys I'm a 37 year old male and here is my story, sorry for being so long winded but ...

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  #1  
Old 10-04-2011, 06:18 PM
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Unhappy Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop trt?

Hi guys I'm a 37 year old male and here is my story, sorry for being so long winded but it's been difficult trying to sum it all up! 6 months ago I was diagnosed with Low T. I went through a complete nightmare of getting a diagnosis. I was feeling fine about 2 years ago working overseas and was flying (commuting) alot. One flight I was coming in to land and felt that I had something like a stroke. Massive pain in the centre of my head and feeling really weird like I didn't know what was happening to me. Later that day I felt a bit better Gradually after this experience I noticed more fatigue, aching joints especially in hips and legs and finger joints. Dizzyness and light headed etc. This all coincided with getting laid off and I came back to the UK.

I wasn't working and was at home gardening, childcare etc. I felt that perhaps I had a bug or virus and would just get over it. Also I was hoping it would go away and I would start to feel better. After about a year I was feeling worse and it was getting me down. I was crying and called the GP to get seen.

Went in and had bloods done etc. The only thing that came back abnormal was my TSH at 6.3 they redid them and they kept coming back around the 4-6 area the range is <6 but they don't treat until greater than 10. The docs thought this was normal and I was imagining things.

I went back and they suggested maybe drinking too much or that I was depressed. I kept pushing them and then referred me to an endo (my GP's words were "Only referring you to shut you up and if you don't believe me you can believe him". They did further bloods that showed my prolactin to be too high (range 1-550 mu/L) mine was at 1200. They tested LH FSH and Testosterone.

My LH/FSH was low 2.0 and 2.7 my T was 5.2 (range 11-36 nmol/L)

The endo suspected a possible pituitary tumour. I had an MRI scan and they couldn't see much. No visible tumour but the gland looked flattened not pea shaped. It wasn't very clear in the image. Hence my diagnosis with empty sella syndrome.

So the Endo said my prolactin was too low for a microprolactinoma and they would monitor it. He recommended TRT about 5 months ago. I started on sustanon 250 every 3 weeks and was on it for 4 months until the sustanon worldwide dried up. No follow up bloods or anything had been done in the meantime. The endo's next appt was cancelled 3 times and I am due to see him in November (instead of August). My experience on sustanon was horrific. I felt awful about 30% of the time, really bad anxiety, panic, racing heart etc.

Been on Testogel for 4 weeks now and those panicky things have gone pretty much. Got my bloods checked before starting Testogel 5 days before my sustanon had run out. They came back with:

Test 10.3 range 11-36
SHBG 20
Free TEST 260
Prolactin in now 1966 (range 1-550)
estradiol 169 pmol/L
So it looks like my T was low while on Sustanon. Feel some of the Low T symptoms still on Testogel so the Doc has asked me to go back for more bloods to see how I am doing on 1 sachet a day. (Think he wants to try 2 a day after my bloods come back)

What I guess I am asking here is do you think my Prolactin is actually causing my Low T ? I cannot stand being on TRT. My doc was confused why this has been overlooked. I guess it's the usual NHS wait forever between appts and bloods and reappointments etc.

My testicles have shrunk over the last 4 months by about 30% and I really think that maybe if I get something like Cabergoline it may lower prolactin and actually let my boys work. (The endo said the results showed it wasn't my boys that were the problem but whats in my head).

I cannot believe that this option was not tried earlier. I mean it may be a long shot? but to pump me full of hormones and with no follow ups is pretty poor. I bet my dog would get better care at the vets!!

Going to try and push for it when I see my endo next. Do you think it's possible I can recover my Testicles? Will they offer HCG? I do have kids and I have had the snip. Just hope that you guys have some good advice. Just as a sidenote.. My TSH has come down to 2.6 so I don't think its thyroid related anyway. No family history or antibodies etc.

What should I do guys and what are my chances of getting off TRT and working again?

Sorry for the long winded post but it seems there really is no-one to talk to and the UK seems to really overlook mens hormone issues. But I have been an awful person at times, angry, moody, easily snap at people including my poor wife and kids. Plus my sex drive in only 20% of what it used to be.

When I look at it in laymans terms, I've been on treatment for 5 months and without follow ups etc t my T level is pretty much similar to where I started! And at least it was my own T !

I do realise that what I want and what the endo is willing to give may differ. But if need be I will self medicate if absolutely necessary to get right or at least better than I feel now.

Does anyone know of anyone else having improved by lowering prolactin?

Would my T recover naturally without HCG etc if my prolactin was dropped?

Could my e2 keep dropping if I kept on losing weight? I had put on all the fat and weight around my gut and I'm now about a 35 inch waist

Would my shrunken balls get bigger again and be enough to produce my own stuff? I will accept this TRT as lifelong if it doesn't work out for me but it really does seem a second best approach.

Please any advice would be welcome.

Thankyou
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  #2  
Old 10-04-2011, 07:01 PM
Michael Scally MD's Avatar
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Default Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

I apologize for needing to go back and read your post in detail, but I was struck right away by the TSH. Do you have thyroid function studies? BTW: A TSH over 5 is considered hypothyroid, particularly with the more precise assays.
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  #3  
Old 10-04-2011, 07:15 PM
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Default Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Thankyou for your reply. I had various tests T3, T4, TSH all carried out various times. My TSH was 6.3 when I had not had any treatment. Before having that pain in my head during flying I had NO issues whatsoever. I guess my pituitary must have been going through a trauma hence the empty sella syndrome.

My doctor was concerned but here in the UK the range for TSH is <6 despite all the studies I read suggesting 95% of the global population were around 1. My Endo and doctor see no concern at all with that value and I was told they would never treat any suspect Hypothyroidism unless the TSH was 10 or over. That is a UK wide policy and my Endo/ doctor will put it all down to empty sella.

I have no family history of thyroid problems and I don't have Hashimotos. Both of my last TSH tests were around 2 or 3 since being on TRT. I also had a short synathen test and apparently this reading was ok.

I feel that I was put on TRT prematurely without trying to bring down my prolactin beforehand and seeing what that would do with my levels.

I am not sure but I don't think that they actually will try restart PCT's here in the UK under ou NHS system.

Would I be able to get back to normal if it was prolactin causing the low T ? Even if I had to crash could it come back naturally while keeping prolactin low? I will have been on TRT for 7 months at this point.

I probably would not get any HCG or Arimidex or any other drug through the health service. If I had to I would consider buying from an overseas pharmacy. My problem then would be my Endo would not allow it or assist me through it...

I just wanted to find out all of my options prior to seeing the Endo at the end of November.. forewarned is forearmed as they say!

Thanks for any advice offered.
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  #4  
Old 10-04-2011, 07:56 PM
zkt zkt is offline
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Default Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

FUCK! I`m reading it for the third time.
My first impression is that you have a prolactin secreting tumor and this is at least partially responsible for your low T and some other symptoms.
If you were an electronic circuit the problem would be trivial to troubleshoot. But applying the cure befor the problem is confirmed is frowned upon in medicine. Never the less, cabergoline will control your PRL enought to observe the results diagnostically.



Quote:
Originally Posted by angrydad View Post
Hi guys I'm a 37 year old male and here is my story, sorry for being so long winded but it's been difficult trying to sum it all up! 6 months ago I was diagnosed with Low T. I went through a complete nightmare of getting a diagnosis. I was feeling fine about 2 years ago working overseas and was flying (commuting) alot. One flight I was coming in to land and felt that I had something like a stroke. Massive pain in the centre of my head and feeling really weird like I didn't know what was happening to me. Later that day I felt a bit better Gradually after this experience I noticed more fatigue, aching joints especially in hips and legs and finger joints. Dizzyness and light headed etc. This all coincided with getting laid off and I came back to the UK.

I wasn't working and was at home gardening, childcare etc. I felt that perhaps I had a bug or virus and would just get over it. Also I was hoping it would go away and I would start to feel better. After about a year I was feeling worse and it was getting me down. I was crying and called the GP to get seen.

Went in and had bloods done etc. The only thing that came back abnormal was my TSH at 6.3 they redid them and they kept coming back around the 4-6 area the range is <6 but they don't treat until greater than 10. The docs thought this was normal and I was imagining things.

I went back and they suggested maybe drinking too much or that I was depressed. I kept pushing them and then referred me to an endo (my GP's words were "Only referring you to shut you up and if you don't believe me you can believe him". They did further bloods that showed my prolactin to be too high (range 1-550 mu/L) mine was at 1200. They tested LH FSH and Testosterone.

My LH/FSH was low 2.0 and 2.7 my T was 5.2 (range 11-36 nmol/L)

The endo suspected a possible pituitary tumour. I had an MRI scan and they couldn't see much. No visible tumour but the gland looked flattened not pea shaped. It wasn't very clear in the image. Hence my diagnosis with empty sella syndrome.

So the Endo said my prolactin was too low for a microprolactinoma and they would monitor it. He recommended TRT about 5 months ago. I started on sustanon 250 every 3 weeks and was on it for 4 months until the sustanon worldwide dried up. No follow up bloods or anything had been done in the meantime. The endo's next appt was cancelled 3 times and I am due to see him in November (instead of August). My experience on sustanon was horrific. I felt awful about 30% of the time, really bad anxiety, panic, racing heart etc.

Been on Testogel for 4 weeks now and those panicky things have gone pretty much. Got my bloods checked before starting Testogel 5 days before my sustanon had run out. They came back with:

Test 10.3 range 11-36
SHBG 20
Free TEST 260
Prolactin in now 1966 (range 1-550)
estradiol 169 pmol/L
So it looks like my T was low while on Sustanon. Feel some of the Low T symptoms still on Testogel so the Doc has asked me to go back for more bloods to see how I am doing on 1 sachet a day. (Think he wants to try 2 a day after my bloods come back)

What I guess I am asking here is do you think my Prolactin is actually causing my Low T ? I cannot stand being on TRT. My doc was confused why this has been overlooked. I guess it's the usual NHS wait forever between appts and bloods and reappointments etc.

My testicles have shrunk over the last 4 months by about 30% and I really think that maybe if I get something like Cabergoline it may lower prolactin and actually let my boys work. (The endo said the results showed it wasn't my boys that were the problem but whats in my head).

I cannot believe that this option was not tried earlier. I mean it may be a long shot? but to pump me full of hormones and with no follow ups is pretty poor. I bet my dog would get better care at the vets!!

Going to try and push for it when I see my endo next. Do you think it's possible I can recover my Testicles? Will they offer HCG? I do have kids and I have had the snip. Just hope that you guys have some good advice. Just as a sidenote.. My TSH has come down to 2.6 so I don't think its thyroid related anyway. No family history or antibodies etc.

What should I do guys and what are my chances of getting off TRT and working again?

Sorry for the long winded post but it seems there really is no-one to talk to and the UK seems to really overlook mens hormone issues. But I have been an awful person at times, angry, moody, easily snap at people including my poor wife and kids. Plus my sex drive in only 20% of what it used to be.

When I look at it in laymans terms, I've been on treatment for 5 months and without follow ups etc t my T level is pretty much similar to where I started! And at least it was my own T !

I do realise that what I want and what the endo is willing to give may differ. But if need be I will self medicate if absolutely necessary to get right or at least better than I feel now.

Does anyone know of anyone else having improved by lowering prolactin?

Would my T recover naturally without HCG etc if my prolactin was dropped?

Could my e2 keep dropping if I kept on losing weight? I had put on all the fat and weight around my gut and I'm now about a 35 inch waist

Would my shrunken balls get bigger again and be enough to produce my own stuff? I will accept this TRT as lifelong if it doesn't work out for me but it really does seem a second best approach.

Please any advice would be welcome.

Thankyou
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  #5  
Old 10-04-2011, 08:02 PM
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Join Date: Jun 2010
Posts: 259
Default Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

i have this same condition of empty sella....PM me and I can give you details, i was born with it thou so its congential...as you can see from the MRI pic on a normal person the pit is suppose to filled the entire sella but in my case a cranial defect allows cerebo spinal fluid (which is under pressure) to enter the sella and compress the pit all the way against the well.....the pit can still function somewhat under this compressed condition however as you age the ability of the pit to keep up with demand under such compressed stress can leave it on a state where it barely functions, so in essence we are left with a barely functional pit....it should be noted thou that some people can still show totally normal pituitary function with empty sella....other factors influence this such as degree of CFS pressure, compression swath, etc......

anyways, PM me if you want more details, I have exhaustive research on this, but cant tell you that I have had success controlling it with hormone replacement, its a tough job to try to replace what the pit does with drugs, literally impossible.

I am surprised of your high TSH as this indicates your pit is at least signaling for thyroid hormones, so its functional to some level...in my case ALL pit signals are low-normal or low altogether.....the first thing you should have done is an ACTH stimulation, the most critical pit function on the anterior side is cortisol signaling...you HAVE to make sure this is working and dont even bother with TRT or anything else until you do so....
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  #6  
Old 10-05-2011, 05:27 AM
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Location: UK
Posts: 68
Default Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Thankyou Guys, really impressed with your replies and it is quite comforting to know that there are some really knowledgeable members.

So I am going to apologise for my EPIC tome. I know it's a pain to read, I had difficulty making it more concise. Especially when I'm not a medical expert and never thought I would have to actually try and learn this whole subject matter to try and arm myself with knowledge to assist with my treatment a hopefully recovery.

@Michael Scally MD Thankyou for replying I mentioned having thyroid tests being done. This could be a problem but I think it may have improved since the onset. Any GP in the UK will not treat anything unless a TSH over 10 !! Would you be able to answer any of my questions on PRL?

@ZKT Thanks so much for your reply. Being in engineering myself I completely understand your analogy regards fault finding a circuit board lol. I wish they would be more proactive in fault finding and not so keen to jump into TRT. It's set me back as now my testicles have atrophied slightly. Going back may be difficult. Lol I know what you mean by having read it over 3 times ;-)

@imrj You are the first person/ man? that I have spoke too who also has empty sella. Seems to me all I here is that it's quite rare in men but very common in older women! Aargh.

Thankyou so much for your kind offer of support/advice through PM's. I will certainly take you up on that offer. Certainly will owe you a beer anyways. PM coming soon.

Seriously guys I am grateful to you all.

Do you think that it's possible that I could physically recover still if I have been low T all this time and have been on TRT for 6 months...? Especially as here in the UK we do not get HCG as part of our TRT treatment. Can I grow them back lol? or naturally will they come back if I can get my PRL down (If Indeed that is the culprit!!)

Thankyou!
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  #7  
Old 10-05-2011, 05:40 AM
Michael Scally MD's Avatar
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Join Date: Mar 2006
Location: Texas; Italy
Posts: 12,416
Default Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Do you have a follow up prolactin?
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  #8  
Old 10-05-2011, 06:17 AM
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Default Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

The last PRL was from 2 weeks ago. Range 1 to 550 my result is 1966. Before treatment it was around 1200. I am getting more bloods today to see how I am coping on testogel.
My own thoughts is that as the mri showed empty sella with no obvious tumour. I may have a small micro non functioning pit tumour. My endo thinks the earlier level of 1200 is too low for a prolactinoma. but it still seems to be slowly increasing? Any thoughts please?
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  #9  
Old 10-18-2011, 05:35 PM
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Default Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Hi guys, please any further advice? Going to see my endo in 4 weeks and need to have the right questions for him. Really hoping lowering my prolactin will enable me to come off T. Really feeling down because of all this. Thanks in advance guys!
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  #10  
Old 10-18-2011, 07:45 PM
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Default Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

you need to take your MRI to a neurosurgeon.....not an endo as they cant speak to brain/cranial lesions of this sort....make sure you do this.....its important
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