Uh oh... Prolactin high at 34 ng/mL; No estrogen for you!

[alex82]

Pay up Michelle!

I understand your trigger. For me that's the top one. I can't stop stroking my upper lip - it's cleared and it thrills me. I haven't felt it like this since the 90s.

I haven't been able to touch it for nearly twenty years - only indirectly with a razor followed swiftly by a generous helping of YSL touche éclat concealer.

1998 high school portraits - I couldn't even look at mine, let alone take it home for approval because of the above - using my mothers leg razor once a week was no longer working and had caused a rash. I went to a chemist that day and bought an electric razor in the most humiliating shop purchase I've ever made.

1999 - I took that one home. I'd learned by then how to work with it, my hair was lightened from the sun*. I'd learned what brands and products were good combination for me. Objectively I quite like it as a good picture of a nice looking teenager.

*And 'Sun-In'. A revolting spray that was activated by heat. I used to hairdryer it while the excess dripped down my face. I can still remember the smell of it. I don't know if it's still on the market.

[Michelle_P]

I had my endocrinology telephone appointment, and it went pretty much as expected.  I need my head examined.     There is an opening in the MRI schedule tomorrow afternoon, which I took.  I'll be getting routine imaging of the pituitary to look for any little oddities.

A macroprolactin lab work up has also been ordered.  That will look for isoforms of prolactin that can throw off the basic test, but which are not biologically active.  (Lots of exercise can be a cause of elevated prolactinoma.  )

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3719302/

If the MRI is negative, I have the go-ahead to start Estrodiol. 

[Janes Groove]

I'm so sorry to hear about your struggles with prolactin. I'm in a similar boat right now except I've been on estrogen for 6 weeks now. My level is 30 too.  I just got a referral to an eye doctor, even tho I'm not having any vision problems. I do know I don't want to stop or ever go back (I've been getting great results) but it is scary.  I'm trying not to get too worked up about it because I know we can overly obsess with something like this. As I'm sure you know.

So, I re-tested this morning two hours after waking, after avoiding everything on the lists of stuff that elevates prolactin.  Everything.

Did you find a comprehensive list of things online somewhere?  My list includes, no breast massage 24 hours before test, stop SSRI's, test at least 3-4 hours after waking. That's pretty much it.

[Newgirl Dani]

I personally beat my head against the prolactin/anxiety/fear wall for such a long long time, only to find that elevated prolactin only means the estrogen is doing as it should.  It is a biological consequence of the changing hormonal landscape.  This is known by all doctors who take enough interest in the new cutting edge research on transgender hormone treatment, and 'not' only reference the old studies.  I've had the optic nerve mapping, you name it, finally to meet a Dr. who knows what she is doing.  Your call though.

[Michelle_P]

The triggers for prolactin are pretty much what you've got there.  Mechanical stimulation of the chest (massage, repetitive exercise, my aerobics routine...), chest injury, SSRIs (common psych drugs), and some other odds and ends.  Stress.  LOL!  The Kaiser website had some info on this I was referred to.

Since I'm not on estrogen yet, the decision was to hold off on it until we get a peek at what might be going on around the prolactin factory, the pituitary gland.  It's possible for pressure on the pituitary stem, for example, to trigger this, as well as overgrowth of prolactin-producing cells (various sizes of prolactinoma).  That lead to today's fun and games.

I was the first body in the MRI queue after lunch, so everybody was rested and in a good mood.  The tech had me leave all metal out in a little dressing room at one end of the MRI trailer (yup.  Trailer.  The whole thing is tucked in a 40 foot long truck trailer.  Easier to ship back to the factory for service.). Oh, and no wigs for head scans. 

I lay down, got slid into the head focusing frame, made sure the foam earplugs were seated, and the foam wedges to lock my head in position were tucked in.  Then, into the machine!   It felt like taking a nap in a torpedo tube, but with better ventilation.  For those who haven't so napped, I was in a 'pipe' deep in the core of the MRI machine's magnet torus, maybe 2 feet across.  It's lit, and there's even a periscope mirror on the head frame so I can see the closed door at my feet and the tech outside the door window.

Then, the machine goes into action.  Some shots to find the area of interest...

*BRAP*. Kerchunk, bzzzzt, kerchunk, bzzzzt...

And away we go...

*BRAAAAAAAAAAAAAP*tic*BRAAAAAAAAAAAAAP*...

12 minutes later, I get slid out.  Still immobilized, I hear "Make a fist."  Time for the MRI contrast dye.  It helps make some tissue types stand out.

Back into the tube, and...

*BRAAAAAAAAAAAAAP*tic*BRAAAAAAAAAAAAAP*...

After about 8 minutes, I slide out, the wedges are pulled and the frame slides off, and I can sit up.

The scans are sharp, crisp, nice and clear, and I really hope they are boring.  This last words I want to hear from a radiologist are "This is interesting..."

[herekitten]

I've known several individuals who have experienced the high prolactin levels - including myself.  My doctor insisted I was pregnant and had me take tests to confirm I was not -- ugh!! (I had momentary fantasies of having a baby and how I so wished it were true, but it would have been an estrogen baby)  He was not aware of my t-status.  My best friend at the time also had alarmingly high prolactin levels and her doctor's nurse called her to tell her that she had a brain tumor and was going to die.  Yes, she was told that point blank. She never had a tumor or anything wrong. I convinced her to fire her doctor and get another.  I do believe its a common place occurrence for girls who use estrogen.  But its always better to err on the side of safety and confirm its nothing. You just never know.

[alex82]

I really like your new outfit Michelle, it looks very smart.

[Janes Groove]

Yeah, I kind of figured that was it.   If I find anything else I'll let you know. I hope your next eval goes well.

[Janes Groove]

I personally beat my head against the prolactin/anxiety/fear wall for such a long long time, only to find that elevated prolactin only means the estrogen is doing as it should.  It is a biological consequence of the changing hormonal landscape.  This is known by all doctors who take enough interest in the new cutting edge research on transgender hormone treatment, and 'not' only reference the old studies.  I've had the optic nerve mapping, you name it, finally to meet a Dr. who knows what she is doing.  Your call though.

That sounds right. 

[Michelle_P]

I really like your new outfit Michelle, it looks very smart.

Thanks, Alex.  I'm going for "older professional" (what I used to be, in the wrong body!), as a step up from "grandma goes to the mall".  Yeah, I'm arbitrarily tagging people by perceived activity and manner of dress.

Back on prolactin: Prolactin levels are really just indications of activity of cells that produce that messenger protein, just like all the other levels we are used to seeing.  One persons normal is another persons OMG!.  The 'normal' bands just represent where 90% of people with no medical issues fall within.

We already know that we aren't like 90% of the population.  This is just one more variation in a poorly studied subpopulation, and the variations are typically without an identifiable cause, what the medical pros call "idiopathic". 

So, I'll likely spend the weekend with this rattling around in my head, but I'll have a better idea of what's up next week.  So it goes.  So it goes.

[Thessa]

I had my appointment with my endo last week to discuss further treatment and my heighten prolactin level (32).
Before I went to see her, I found the following article:
http://press.endocrine.org/doi/abs/10.1210/endo-meetings.2014.RE.19.SAT-0111.

She only confirmed that it was related to taking Androcur, as described in the article and I should not be worry about it. Still we decided to stop Androcur at all, based on my E level of 233 and the fact that I took just a very small dose of CPA every other day for the past couple of weeks. So I should be fine on E alone and see how I feel.

I know that you take Spiro, but based on the article - if I understood it correct - it can also heighten prolactin, not to the same extend as CPA but still.

[Michelle_P]

Alas, I got my 30 ng/mL prolactin reading before I started spiro.  I was on finasteride for several years, but there's no medical data out there suggesting a correlation between finasteride and prolactin levels.

I'm just waiting for the MRI results.  Hoping for a normal looking pituitary, and no mystery lumps or bumps along the pituitary stem.  (If there are, treatment is very straightforward with medication, although challenging to the stomach.  Pesky dopamine agonists...)

[Rachel]

My prolactin when last tested in March was 39.4. I am on a high dose of E. My doctor said in his note to me, "nothing to worry about".

[Michelle_P]

Well, today was interesting.  The MRI results were in.  Nice sharp images of my brain...

It's a girl. 

Oh, and there's a 'questionable hypoenhancing nodule within the left pituitary gland measuring 3.5 mm.'  That's a possible adenoma.

I've got the approval to start estrogen, so maybe sometime this week I'll pop on the first patch.  Oh, who am I kidding?  I slapped that sucker on before I even finished reading the rest of the message from my endocrinologist.

I'll be doing another prolactin measurement in a month to see if I'm feeding my little monster, and if it's up I'll be adding cabergoline, a dopamine receptor agonist that blocks signals to the prolactin factory.

[Mariah]

I'm so glad that you were finally able to start Estrogen. Congrats. Glad your results on the most part were good. Hugs
Mariah

[Marissa_K]

Wow this has been an interesting read especially because I'm a total hypochondriac and worry about the my prolactin (Plus my kidney going and everything else in general lol) even tho my prolactin on last measurement was 6.

[Michelle_P]

Six?  Oh, Marissa, that's a great number for one of us.

You'd be amazed at what whacky numbers we can have in our blood tests and still keep chugging along just fine.  I'm 62, weighed up to 215 lb in the past, now 140, facing my second transurethral prostate surgery (Prostate?  WTH is that doing in me?), and I've had various strange numbers turn up in my blood work.

Sometimes I get good advice, and I make adjustments to bring things in line.  Sometimes I've gotten fantastically bad advice, from a real live licensed doctor person, and wondered if he was playing Candy Crush when I was giving him my history.  (Yay, second opinions!)

Stuff works out.  It's hardly ever terminal nevergetoveritis.  Anyone strong enough to do what we do in our lives, living with our problems, is strong enough to overcome darn near anything.

[Marissa_K]

I wish you luck, I'm sure it will be OK

[Michelle_P]

More numbers; I had a complete pituitary hormone panel done last week, to see what my little monster was doing.  (The adenoma on my pituitary. What?  You don't give your odd growths nicknames?)

So, at 5 weeks+ on spironolactone, and 42 whole hours on Estrodiol patch, I have:

40 ng/mL prolactin

Um. Yeah, that's three data points on an upward trend line. I sense a dopamine receptor agonist in my future.  Retest in three more weeks.

The good news is that everything else looked pretty reasonable.  Testosterone was down from 650 to 251 (bottom of the normal male band), so that is moving in the right direction.

One odd effect I've noticed; After 11 days on estrogen patches at a very low level (half of minimum transition dosage in most guidelines), I'm already seeing enlargement, tenderness, and darkening of the areola and formation of buds.  I suspect the prolactin (now at late third trimester levels) is boosting things a bit.

It appears that age 62 may not be too old to see physical changes.

[Michelle_P]

Another data point:  I had my prolactin level measured again today, 4 weeks later, to see how my little monster is doing.  Good news:  He's staying little!

Before HRT: 30 ng/mL and 34 ng/mL
2 days into estrogen: 40 ng/mL
4+ weeks on estrogen: 38 ng/mL

The last two numbers were taken in as close to identical conditions in terms of activity and time after waking as I could manage.