Well this is a surprise...................

[WPW717]

Misplaced glandular pituitary tissue? … unlikely. AVM, Hmmm, possibly but that doesn’t account for the elevated prolactin. Brain shrinking effects, I had that reported twice also, aging I think…  so the mystery continues 
Take good care of yourself my friend.

[taxmapper]

Several items popped out at me. 

Differential considerations include: Possibly a calcified meningioma, a prominent vascular
lesion-?vascular malformation (dAVF), and/or other mass lesion.

https://www.mayoclinic.org/diseases-conditions/meningioma/symptoms-causes/syc-20355643

Meningiomas occur more often in women. They're often found at older ages. But they can happen at any age.
Because most meningiomas grow slowly, often without symptoms, they do not always need treatment right away. Instead, they may be watched over time.

https://www.cancer.gov/rare-brain-spine-tumor/tumors/meningioma

Who Is Diagnosed with Atypical and Anaplastic Meningiomas?

Grade 1 meningiomas are more common in females, but grades 2 and 3 occur more often in males. High-grade meningiomas are most common in non-Hispanic white people. 

2. The pituitary gland is unremarkable . There are NO pituitary adenomas .
"CLINICAL INDICATION: high testosterone and prolactin. headaches."


Where the doctor indicated that possibility of a pituitary gland swelling/growth could be the cause, no actual indication of such is there. This means that the high hormone levels are caused by something else. 


IMO the possibility of PMDS is becoming more possible. 



This may seem a bit repetitive, and Ill keep updates , but its another checkmark.   

[WPW717]

43 years of practice in the OR at major universities/ teaching hospitals I haven’t ever seen a case. WOW

Seen a few intersex cases but not this.

Not sure how PMDS would account go the elevated PRL level 

Good thing I am not a doctor! There is a ‘two problem’ presentation here , it is a good  question 

I fully appreciate your position as the 4 years of my medical journey was a sequence of seemingly unrelated conditions that was really a constellation of symptoms that was a little known entity. (MEN Syndrome)

Keep us posted but do take care to hoop jump on the PMDS Dx as my reading on this speaks to a malignant possibility later in life.

[taxmapper]

43 years of practice in the OR at major universities/ teaching hospitals I haven’t ever seen a case. WOW

Seen a few intersex cases but not this.

Not sure how PMDS would account go the elevated PRL level

Good thing I am not a doctor! There is a ‘two problem’ presentation here , it is a good  question

I fully appreciate your position as the 4 years of my medical journey was a sequence of seemingly unrelated conditions that was really a constellation of symptoms that was a little known entity. (MEN Syndrome)

Keep us posted but do take care to hoop jump on the PMDS Dx as my reading on this speaks to a malignant possibility later in life.

Understanding your not a Dr... the question I have is what DO you think? 

[WPW717]

I am truly puzzled!

I do know that there was a Prolactinoma cranial tumor by MRI  in my head. Chemo was attempted and aborted after 50 % completion. A subsequent MRI showed no tumor. 
Recent labs showed a still elevated level of prolactin, where I took it upon myself to initiate a course of treatment involving P5P. It has reduced the level somewhat but I am not convinced it is related, Sept labs will garner more information .

Participation in a Prolactinoma group I have learned that some people have  way more significant elevations than me AND have no radiological evidence of a tumor or growth. It’s mystery to me. 
 It could be you resemble this presentation and PMDS. 

If the Docs provide you with a treatment path for the PRL that includes the drug Cabergoline stay in touch with me. It is an effective therapy for the symptoms of prolactinemia but for a small minority of patients it’s is fraught with a few problems. 

Hang in there. …

[taxmapper]

Well, the Doctor referred me to a neurosurgeon. 

Guess its time

[WPW717]

Stay in touch
I am concerned for your health 

The current state of US healthcare make it hard to get answers for most patients.

Best wishes for you on this journey.

[taxmapper]

OK, so now were going to have to go a different route. 
The doctor told me she wanted me to try Chlortalidone.   

This stuff is a diuretic and can have a side effect of low potassium, 

I already get hellasous leg  cramps. 



The Pharmaceutical industry is vicious! 

[Parity]

I do wish you well. 
I also want to thank you for the updates.  I too have water retention mostly in the abdomen and mild in the lower legs. And the leg cramps are awful. 
I have been off and on diuretics and will be having that conversation again soon.

[WPW717]

Question…
How high is your average BP?

Depending on the level and refractory level of your hypertension this med is a less than optimal choice. Similar action to Hydrochlorothiazide, a potassium depleting drug, in all my years of practice I have not seen the benefits of this drug especially in older/geriatric  patients. The prescribing MD is an FP / GP … ?
It will do nothing to ameliorate the high T or prolactin levels. Is your vision affected? It can also be used against diabetes insipidus, a real reach for treatment in my opinion. I don’t believe you have described a problem of massive diuresis on a daily basis.
Not wanting to badmouth a fellow professional but the age of  specialty can be a problem in these modern times. The problems I faced over the past 4 years were due to not listening to the patient and tunnel vision on the part of the doctors only looking at only their lane in cookbook fashion. This compounds the chances of obtaining an accurate diagnosis.

Latest genetic report took me from 1: 1 million for a difficult diagnosis to the unreal odds of 1:10 million. Only 33 people in the nation carry this diagnosis. Maybe I should buy a lottery ticket?

[taxmapper]

My PB has been running between 137 and 150 over 80-98.  PR between 66-80 average. 

Weight fluctuates between 205-210, depending on my meals! 


I have discovered that eating bananas can actually CAUSE the cramps rather than alleviate them.  I don't think water retention is the overall issue because 

Though I have the weight  fluctuation, I don't hove: 

• bloating, especially in the abdominal area
• swollen legs or other extremities
• puffiness of the abdomen, face, or hips
• nor any stiff joints. 

My doctor is just under my age so I don't think there is the severe lack of education and corporatization effect. (At least I don't see that.) but I do believe that there is a strong "contemporary feel" of medical training here.

what I told here is that I will do "lifestyle mods" rather than the chemical route.   I just cannot take the poisons these companies are pushing.   I also feel there is a strong push by insurance companies involved with this. 

There are other factors I think are happening here, but getting anyone to listen is like pulling teeth out of an alligator. 


 

[WPW717]

Salt water crocodiles is more like it. 

Seeing that you’re on a gynecomastia site … if your Doc is amenable to suggestion, a genetic profile to check the MEN 1, CKDN1 and 3, HER, BRCA1&2, and CHEK-1 genes for abnormality might provide some answers. If it’s all a negative then a lot of a diagnostic horizon is eliminated.

If any are positive then the diagnostic channels narrow to some specific areas that can explain the prolactin levels.

The hypertension you speak of can or can’t be related to this ( a catecholamine plasma level would be revealing) although if it is elevated it could be related to NET problem of some sort. If it’s a diastolically malignant level ( sustained 100+) then a MEN syndrome should be looked at … 
If genetically negative for MEN, have the doc bone upon “phenocopy” or “sporadic” MEN.
Beyond this I don’t have a clue.

[taxmapper]

Not going to happen.  Insurance wont pay for those.