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

[2yung4this]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Help me to understand...empty sella means that your pituitary is either gone, shrunk, or otherwise atrophied and not optimal. So, I dont think you can restart, seeing as your "engine" doesnt fire properly. Please correct me if I'm wrong, and I admit I havent read all the posts....but do you have low LH anf FSH? If so, the only thing other than TRT would be replacing those hormones...but its much more expensive than trt....

 

[Michael Scally MD]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Help me to understand...empty sella means that your pituitary is either gone, shrunk, or otherwise atrophied and not optimal. So, I dont think you can restart, seeing as your "engine" doesnt fire properly. Please correct me if I'm wrong, and I admit I havent read all the posts....but do you have low LH anf FSH? If so, the only thing other than TRT would be replacing those hormones...but its much more expensive than trt....

EMPTY SELLA IS characterized by the herniation of the subarachnoid space within the sella, which is often associated with some degree of flattening of the pituitary gland. [I would agree with your impression, but, like many things in medicine, logic does not compute!] The need for replacement hormone therapy in PES, as in other syndromes that may cause hypopituitarism, must be assessed for every single hormone, including GH. Primary Empty Sella

 

[angrydad]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

I`m not really sure what your best course of action is right now. Have to think about it. How far are you willing to go in taking responsibility for your own treatment?
I can guarantee you that printing out these research articles and suggesting that he look at them isnt going to get you anywhere.

Thanks Zkt for your reply, I too am having difficulty knowing just which way to turn, needless to say until I address whatever is making me feel so unwell things will only get worse psychologically and physically. Just feel really let down by the caring profession at the moment.

I AM WILLING to do whatever it takes to get on top of this, So yes I would look at treating myself, just difficult for bloods and knowing whether I'm doing the right thing etc.. I would not want to make myself worse and have my Doc or Endo wash their hands of me and not support me because I acted under my own steam. Especially as it's most likely this PRL thing that is causing my problems..
I also believe that you are right when you say the Endo will most likely ignore any research I present him with.

@2yung4this,

Help me to understand...empty sella means that your pituitary is either gone, shrunk, or otherwise atrophied and not optimal. So, I dont think you can restart, seeing as your "engine" doesnt fire properly. Please correct me if I'm wrong, and I admit I havent read all the posts....but do you have low LH anf FSH? If so, the only thing other than TRT would be replacing those hormones...but its much more expensive than trt....

The pituitary may be damaged or compressed, BUT 3 years ago before this all started I lived 34 years of fantastic health without empty Sella. I know this not because of earlier MRI's (I have never had one before getting ill) But I know that on a flight during approach I suffered a severe pain in the centre of my head and I really thought I was having a stroke. Strange sensations/ noises inside my head..This lasted for the remainder of the day. Ever since then I have suffered these symptoms. It's got to have been a trauma on that day.. Maybe I had a weakness in my skull since birth? But I know I was fine before this event.. I have children and had my daughter 4 years ago.

/since this incident My LH and FSH were low but not missing. My TSH was highish but subclinical I have passed a short Synacthen test and I guess that growth hormone has been tested by the endo.

My Prolactin is high, so whether caused by a microprolactinoma or be being slightly Hypothyroid (Still disputed by my GP/Endo) This High PRL would most likely cause a Low LH and FSH. These hormones may well be ok? If I can get my PRL down. TRT for me is really a last resort. Despite being the first thing my Endo put me on!! Aargh. Now I need to get back to feeling normal and getting my prolactin down and getting off TRT.

@ Dr Scally ,

Please could you give your opinion on what I should ask of my Endo, How can I best get off TRT and recover my HPTA, lower prolactin and in which order should I approach this? Seems like too many factors at play for me to use common sense.

Can this be done by just stopping TRT and taking Cabergoline ? Will my body recover if it is PRL causing this? Because my body will have NO Testosterone not just low like it was before the TRT. How long is this likely to take me. I know this is not ideal but I don't know what approach my Endo will take and because I know this one consultation with him is absolutely critical. The 10 minutes I get decide what happens and I need him to start a plan of action now. It takes at least 4 months between appointments to see him and I don't want to be told blah blah come back in 6 months etc.

Would really appreciate a basic flow chart in the order of treatment and what I should be doing or looking at to get better as quickly and painlessly as possible.

What they don't understand is that this is only a 10 minute conversation for them. But for me it's starting to feel a life sentence. Not to mention a lack lustre sex life (twice in a year) because of the way I'm feeling, My poor wife and kids have the patience of a saint and I feel like I am becoming a burden to them.

Please guys I need as much of your good advice as I can get.

Thanks for all the effort and time taken to post so far. It means alot and I hope to pay it back some day for others in need.

 

[zkt]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Nice tutorial.
I think your endo should order a T4 and at least a T3 calculated test with the goal of gettting T4 in the upper quartile of the normal range in order to suppress TSH and PRL as much as possible. Meanwhile 5-7.5 g/d Tgel/d.
Follow up with PRL, TSH, T4,T and E2 tests.
You will also likely need something for the E2. Letrazole .625mg/ EOD might be a good place to start.
I really dont know what to do about the hyper PRL unless you can find a PRL secreting toumor.
Since this has apparently come on more or less suddenly in your late 30`s I wonder if it is not of autoimmune etiology. If so, this might change the treatment. It might be warrented to look into ACTH, diurnal cortisol pattern and antobody tests.

 

[angrydad]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Thanks again zkt, I do appreciate this I currently take 7.5 g of testogel. Here in the UK our docs do not give out scripts for any anti-e's ufortunately. I'm sure this came about because of pressure. I was a frequent flyer and often took a decongestant because of sinus probs during flights. As my doc says I'm not hypothyroid tsh less than 5. They will not treat me with any thyroxine either..
My only answer is to lower thePRL and my own gp agrees that the PRL needs addressing. But I REALLY want to get off TRT even if that meant a long term low dose of cabergoline. I can see this being the only thing my doc and endo will consider. Stuck between a rock and a hard place. Although I will ask them to check up on the other tests you mention definitely.

I will not be happy unless I'm off Trt. If it turns out after I have tried everything to get my own T back. Then of course I will accept being on TRT. But feel that this has been overlooked!

Could I think about Cabergoline and HCG to get my own testes working again?

The reason why I discount using trt is that the way I have been left to linger on sustanon every 3rd week or testogel shows just how little help I can expect to get from my doctors.

I'm sure it's not autoimmune because it felt like a bomb going off in my head. I really thought I was going to die whilst sat in that seat coming in to land.

What do you think now ? Sorry to be a pain!

 

[zkt]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Thanks again zkt, I do appreciate this I currently take 7.5 g of testogel. Here in the UK our docs do not give out scripts for any anti-e's ufortunately. I'm sure this came about because of pressure. I was a frequent flyer and often took a decongestant because of sinus probs during flights. As my doc says I'm not hypothyroid tsh less than 5. They will not treat me with any thyroxine either..
My only answer is to lower thePRL and my own gp agrees that the PRL needs addressing. But I REALLY want to get off TRT even if that meant a long term low dose of cabergoline. I can see this being the only thing my doc and endo will consider. Stuck between a rock and a hard place. Although I will ask them to check up on the other tests you mention definitely.

I will not be happy unless I'm off Trt. If it turns out after I have tried everything to get my own T back. Then of course I will accept being on TRT. But feel that this has been overlooked!

Could I think about Cabergoline and HCG to get my own testes working again?

The reason why I discount using trt is that the way I have been left to linger on sustanon every 3rd week or testogel shows just how little help I can expect to get from my doctors.

I'm sure it's not autoimmune because it felt like a bomb going off in my head. I really thought I was going to die whilst sat in that seat coming in to land.

What do you think now ? Sorry to be a pain!

The problem one runs into in treating himself, even if he understands the chemistry, theory and anatomy of the issue is that he lacks the experience in knowing what is reasonable and what is not. Ive already told you what I would do.
You can supress PRL to near zero at normal PRl levels with cabergoline 0.5 mg. The effects will be evident in ~8 hrs and last for ~18. Dosing e2d will produce steady reduced serum levels. This is for normal people, You will have to experiment in order to determine a theraputic doseage at your PRL level.

I fail to see how that you can know that your doc wont treat HT without T4 and T3 tests.
Same goes for E2 that is 4 SD above the normal range. Medical people almost worship the normal range.

Could this have been an anxiety attack?
"I'm sure it's not autoimmune because it felt like a bomb going off in my head. I really thought I was going to die whilst sat in that seat coming in to land."

I suspect you got the wrong administration and impression of TRT. God willing and the creek dont rise, you may look forward to much more satisfying results if managed properly. You stand a chance that normal pituitary functioning can be restored but its not a good bet.

I dont consider cabergoline as a long term solution- the heart valve thing. Perhaps as a break in the routine till a permanent solution is found.

 

[angrydad]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Sorry zkt, I should have been clearer with you. I know that they dont consider me hypo because when I first went to the gp's with feeling ill, the first lot of bloods they did came back with abnormal tsh. Range <6 my tsh was 6.38 and has since came down to between 2 to 4. My t3 and t4 have always been done too one was low, the other high but both still in normal range! As soon as my tsh went under 6 they thought I was ok again! They will not administer thyroxine until tsh is over 10.

So I have already put the hypothyroid to him 7 months ago and was told I am not hypo T. Also I know that Anti-e's are very unlikely to be offered on the nhs. I asked the doc about my e2 level at last blood test, it was ok (high in range..but normal).

I can understand it may look like a panic attack, but I have flown prob 5-600 times all ok. Never had a panic attack in my life. Until I was put on sustanon every 3rd week. It was A massive,massive pain (I know what sinus probs are like.. It's not that) It was like someone had put a hot knife right through my head. Even 2 yrs later, I remember the sheer pain. I never had the mri until over a year later. I had never even heard of empty sella before so it amazes me that it all ties together for me. I know what you mean about trt, but if they cannot administer that correctly what chance do I have with anything else lol. Still trying to be positive. It's just like having my hands tied behind my back.

 

[zkt]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Yes, that is a mighty strange onset. But as a friend of mine is fond of saying; once the head is blowed off what does it matter? You have PES. What are you going to do about it ?

 

[angrydad]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Cheers zkt for the PM. I know what you mean about strange. Keep thinking I was burning the candle at both ends for 18 months and the weakest link in the chain broke... I am trying to deal with it and 'hoped' that my docs would take more of an interest. Never happened.. So I guess it's left to me now. I'm going to see my endo in 3 weeks and tell him about how ive been feeling and want to stop trt and address the prolactin issue. Whether that be via thyroid(but doubt he'll buy it). Or more likely cabergoline. Even if it's for a short while (If it helps fault find my system) get my own lh and fsh working...see if they will again. Get my testes making their own goodies again.

Going to have to get some hcg from online and start getting the testes running, stop the trt and take the cabergoline. See what occurs, I will need some good advice on dose/frequency etc..or any other drugs required etc.. Just don't know whether to be completely honest with my endo. Reckon he won't issue anything for a restart so do I say, "well if you can't help etc I will have to treat myself with online pharma etc" I think he would wash his hands of me though? Shit, bet if I said I wanted a sex change they would bloody help me!
Either that or say my wife wants more kids and try that angle? I have had the snip but I would tell him I'm prepared to go elsewhere privately to get it reversed. After all IF I can get my sex hormones sorted out, thats one less hormone to supplement/play god with. If I don't try I will never know. Being in my 30s its a bloody long time to just ACCEPT TRT just because my endo cannot be arsed.
What do you guys think? As Ive said all along...if it fails after trying, I will resign myself to it. But never having tried..it seems like failure.

 

[Michael Scally MD]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Address the thyroid first!!! It might be all that is needed. Proceed in a step-wise fashion. There might be chance for thyroid replacement and TRT, alone. Also, as stated, obtain GH testing. And, DO NOT do anything for E2 and DO NOT self treat.

I would not be fearful of speaking to your doctor about the literature posted. It will demonstrate your involvement and concern. If the treating physician is taken aback or displays an "ego," this will be informative. At this point, ask about seeing someone else. I think once the doctor realizes that there might be ONE treatment for ALL of the problems (except GH, which needs testing), he/she will jump onboard. It will NOT harm and has the potential for great benefit.

FYI: https://thinksteroids.com/community/posts/664438

 

[zkt]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Damn! those are great references.
Do you really think that your general purpose, off the shelf endocrinologist who spends most of this time treating T2D is knowledgeable in this area?
Angrydad if you take the matter into your own hands you really need to have this depth of understanding.

 

[angrydad]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Yet again, thanks dr scally and zkt outstanding info here. From what I took from the link, a guy went from being on trt reduced the PRL and started to produce his own T. I will make up a short printout with bullet points and articles/references and ask my endo to look at the thyroid and ALL the other pit hormones too. See if he will even 'trial' me on thyroxine to up my levels/bring down tsh.

See if it brings down my PRL.. But I do stillwant to get off the TRT if possible and see if I can make my own T again. Would it be possible to do this just by thyroid hormone replacement? If the PRL drops because of thyroid supps to normal levels then I should get my own T back? That is my ultimate goal because the only protocols here are either daily gels (this may stop working) sustanon shot every 3 weeks or nebido sp? Every 12 or 16 weeks. They will not change this and it's not good enough.
So I will be aiming to do whatever it takes to lower PRL. But as the articles saying, by supping the T it's increasing PRL by feedback. Thats another reason why I need to produce my own if possible.
My question is, is it realistic that if I got my PRL down by thyroid supplementing if I just stopped TRT should my hormones balance naturally, bringing back my own lh,fsh and eventually T ? Would hcg be worth thinking about? Can my body recover from 7 months of trt?
Seriously guys, thanks for your answers.

 

[angrydad]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Hi Guys,

Just wanted to post up these test results (paid for privately a year ago) and my doctor ignored them. (Not the tests the Docs ordered but my own) Cannot understand why my Free T3 is so High and my Free T4 is low in the range? Any ideas please guys? Just thought this would help give some extra background to the idea that maybe my thyroid is out of whack.. Although my latest thyroid results show my TSH around the 3 to 4 region. What do you think of these readings?

Embedded Image Unvailable

 

[zkt]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

I cant find any way to make the image readable.

 

[imrj]

Most likely due to low cortisol.....at least your pit gland is workin because tsh signal is high, I have empty sella also and all my pit hormones have always been low...

You need to find out cortisol levels and Acth swim test also

 

[angrydad]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Thanks imrj, I had the short synacthen test done last year when I first went to the endo. Apparently the results are ok.

Sorry to hear you have to supp all your hormones. I guess I'm lucky that my pit is still there (even if it is crushed/damaged). Never thought i'd be grateful for a high tsh lol! Just wondering why my free t3 is high out of range but my free t4 is low?

Sorry zkt that you cannot see the chart. Have you tried clicking on it then hovering over the small image and it should open in new page and by hovering should turn into a magnifying glass to zoom in?

Can anyone else actually see the attached image? Could these results suggest a high reverse t3? Not had that done...don't think my docs does that test though?

 

[imrj]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

its my understanding the high FT3 is because RT3 is blocking the T3 cell receptor as a protection mechanism due to low cortisol, so yes RT3 would be an issue, but the primary problem would be the low cortisol, the RT3 is a protection mechanism for the low cortisol.....

with empty sella there are people that have perfectly working pituitary....it really depends on the pressure being exerted on the gland by CSF....to make things more frustrating, CSF pressure can change with time thus changing stress on the pit, which can change hormonal levels...in my case I have a bent pit stalk (connects the hypothalamus to the pituitary) and thats the reason why its believed that all my pit hormones are low, due damage of signaling path between the two.....u should really go see a neurosergeon, not for surgery because there isnt any possible for empty sella, but for a better diagnostic of the pit environment and overall condition....i wouldnt mess around with any hormone replacement until this was done

 

[angrydad]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Thankyou for your reply. I agree that it could be a cortisol issue too. Just dont think its 'sexy' enough for my endo to look at. I still think that those results look like hypothyroid. My symptoms certainly suggest I'm slightly hypo. Gonna see if my endo will redo all the tests and maybe trial some thyroxine. Im sure he wont be keen, but if I suggest "trial it and see if it brings my prolactin down naturally! " before going down cabergoline route.. My endo said he was going to discuss my case with some neuro's but that was 7 months ago when I last saw him. Will see what it brings in 2 weeks in my next appt.

 

[angrydad]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Was hoping that Dr Scally could give me his opinion of these results and whether it looks like hypothyroidism? Especially as the T3 is so high compared with T4. Also as to whether it would be sensible to see if a trial of thyroxine could bring prolactin down. Still want to get off the trt. Just need to know the best steps to take to get back my own test. Hope to hear from! you guys soon. Endo in 10 days! Thankyou

 

[angrydad]

Re: Diagnosed with empty sella syndrome,Low T,high prolactin can I restart and stop t

Just been to the Endo and he has ok'd trying out Levothyroxine starting at 50uG. After I showed him the research kindly provided by Dr Scally here! So thankyou to you all.

Not started the Levo yet, got to wait until I get my script on monday. My last TSH was at 6.78 and the uk range for TSH is <=6

If this trial of Levo does not bring down PRL then they will try a Cabergoline type drug to bring down the PRL.

Will keep you guys posted. Just hope that I don't get any side effects from the LEvo!

Cheers guys