Really Low T - Prolactinoma induced

First, I’d like to thank all contributors to this forum - the information provided here has been invaluable while dealing with my hormonal issues this past month. While waiting (impatiently) for my next doctor visit, I thought I’d share my situation and see what thoughts and advice you might have.

I’m 56, 6’ and for the past few years 185 to 190 pounds. Last two body fat measurements had me between 12 and 13%. I lift three to four time a week, and do hard cardio two to three times per week. Overall, always felt good for my age. This summer my weight jumped to 195 - 200, and was having a heck of a time dropping it down. I chalked it up to getting older.
In mid September I started getting what I describe as hot ‘flushes’. They happen a couple times a day and only last a couple seconds. I didn’t give them much thought.

Then in mid October, the hot ‘flushes’ suddenly became full-on hot flashes. Big time clothes drenching/sheet drenching sweats. I’d get 12 to 20 a day. They sucked. No other hormonal symptoms - I had energy, no ED,etc.
Went to the doctor. He did basic bloodwork plus total testosterone. Nothing more, and at the time, I had no clue to ask for additional testing (results are below). Most all results came back ‘normal’, but cholesterol (especially LDL) was high (I’m usually under 200), and my total T came back at 35 (280-800). That’s not a typo. Doctor put me on 5g Androgel daily and said come back in a couple months.

Well, I wanted to know why T was low. As I began researching, it didn’t take long to realize I wasn’t just low T - I have virtually no T production. I also quickly learned that a lot more tests should have been done. I scheduled an appointment for two weeks after starting Androgel.

I didn’t get all I asked for, but some (see below). Free T is low (duh), and the result that jumps out of this limited panel is my Prolactin level - 46 ng/mL (4.0 - 15.2). Other items were within range, which somewhat surprises me considering my low T. I’m also really disappointed my total T wasn’t retested. The doctor figured he had just done this, not figuring it was before Androgel, and that it was so low it might be wise to retest for errors.

Doctor set me up with an Endocrinologist. My appointment is December 9.
To date, Androgel eliminated the hot flashes. I definitely have less energy, but I’m realizing that came on the same time as the hot flashes. Sexual function seems normal, though for the first week or so after the hot flashes I had no morning wood. It’s back now. I do have enlarged/sensitive nipples (prolactin?), but no gyno.

About the only other info that might have some pertinence is that for the past eight or nine months I had gotten into the habit of drinking lots of coffee - 80 to 100oz per day. Don’t know if there’s any relationship to my issue, but it very well could have been keeping my (perceived) energy level up this past summer. As of mid October I’m 20-24oz/day.

My uneducated analysis is that whatever I’m dealing with came on relatively fast. I’m expecting the need for an MRI (prolactinoma??). I’m also very interested in your thoughts.

Thanks,
Mike

First blood work (outside ‘normal’ in bold)

Glucose, serum 101mg/dL (65-99)
BUN 33mg/dL (5-26)
BUN/Creatine ratio 29 (8-27)
Sodium, serum 140mmol/L (135-145)
Potassium, serum 4.7mmol/L (3.5-5.2)
Chloride, serum 102mmol/L (97-108)
Carbon Dioxide, total 27mmol/L (20-32)
Calcium, serum 9.5mg/dL (8.7-10.2)
Protein total, serum 7.4g/dL (6.0-8.5)
Albumin, serum 4.3g/dL (3.5-5.5)
Globulin, total 3.1g/dL (1.5-4.5)
A/G ratio 1.4 (1.1-2.5)
Bilirubin, total .4mg/dL (.0-1.2)
Alkaline Phosphate, serum 60IU/L (25-150)
AST (SGOT) 24IU/L (0-40)
ALT (SGPT) 25IU/L (0-55)

Cholesterol, total 251mg/dL (100-199)
Triglycerides 61mg/dL (0-149)
HDL 57mg/dL
VLDL cholesterol Cal 12mg/dL (5-49)
LDL 182mg/dL (0-99)
Total cholesterol/HDL ratio 4.4 (0-5.0)

TSH 1.380 uIU/mL (.45-4.5)

Prostate specific Ag, serum .8ng/mL (.0-4.0)

Testosterone, serum 35ng/dL (280-800)

Second Blood work (23 days after first, 16 days after starting Androgel)

Dihydrotesterone 93ng/dL (30-85)
Free testosterone, direct free 7.1pg/mL (7.2-24)
Cortisol (morning test) 14.1ug/dL (6.2-19.4)
LH, serum 3.6mIU/mL (1.7-8.6)
Prolactin, serum 46ng/mL (4-15.2)
Esrtradoil (roache ECLIA methodology) 8.6pg/mL (7.6-42.6)
FSH, serum 3.3mIU/mL (1.5-12.4)
DHEA-sulfate 254.6ug/dL (51.7-295)

The androgel is ineffective. TT would be good to firm up that conclusion. Typically, testing LH/FSH when on TRT is stupid because effective TRT will drive LH/FSH close to zero. So in this case, your lab results for LH/FSH clearly show that the androgel is not getting the job done.

DHT shows that a lot of T is getting converted to DHT in your skin, which is good for libido, if there is more FT.

FT has a short half life and FT levels change greatly after application, dropping fast later on. FT levels can be steady with frequent injections and the FT labs there are quite useful. For transdermals, because FT is all over the map, TT is a better measure of how much T is getting delivered.

Low E2 also suggests that your average T levels are low. We usually see a lot of T–>E2 conversion with transdermals. So you result is odd.

Your caffeine use might be compensation for lower cortisol or low energy from low T. Are you also craving sugar and salt? Do you use iodized salt?

Your HDL is great. When you get TRT working right, LDL should go down.

That prolactin level can easily kill T levels and libido. You should be able to get Dostinex/cabergoline to deal with that.

What supplements are you using?
Vit-D3?
Fish-oil?

What Rx or OTC drugs?
Have you lost any hair below the knees?
Using or ever used a hair loss drugs? 5-alpha reductase inhibitor
Any blows to the head leading up to the start of this? Fevers?
Testes smaller?
Testes ache?

Check waking body temp before you get up. Record. Near or below 97F is a thyroid problem, 97.8 is ideal.

Thanks KSman,
I’ll try to answer your questions in approximate order.
I’ve learned that testing LH/FHS will not give effective results when on TRT. My hope was to see if i had any pituitary activity in this regard. I did see there is at least some activity there. Thanks for pointing out how it also shows the Androgel lack of effectiveness.
I could be wrong, but with my very low T, there just isn’t a lot to convert to E. Does that make sense? There is also a chance my supplement intake could have something to do with this (see below).
I don’t crave sugar or salt. i don’t use iodized salt,but do get 150mcg of iodine from my multi vitamin.
As for supplements, my daily regimen the past few years includes:

2000-3000iu D3
6-8g fish oil capsules
30-50mg zinc
25 mg DHEA
a multi vitamin (i can list what it provides)
and LEF’s Super Muraforte, which includes:
Chrysin 750mg
Muira puama 425mg
Maca 160mg
Nettle 141mg
Ginger 25mg
HMRlignan 16.7mg
Bioperine 7.5mg
Zinc 7.5mg

No other drugs
No hairloss below the knees
No hairloss drugs - ever
No headblows - good health till now
Testes are normal size(for now?)
currently minor teste ache (discomfort)

I will check wakig body temp.

Yes, low T can lead to low E2, as opposed to high E2 lowering T. Your E2 is exceptionally low.

Note that SHBG bound T [SHBG-T] cannot convert to E2. FT and weakly bound T [bio-T] can convert to E2. Most weakly bound T is albumin bound T.

Can very low E2 lead to low T? This may be a reach, but I assume male hot flashes (basically my only symptom) could be caused by low E2 (as with women).
Though I’m working to better understand the complex relationships between various hormones, I’m not seeing low E2 being a direct cause of low T (I do know certain physiological situations can cause both).

thanks

Normally lower E2 levels will increase T levels. This can be seen with aromatase inhibitors and SERMs.

The hot flashes are your balls not responding to your elevated pituitary hormone levels trying to signal your balls…probably poor circulation is the issue.

Thanks cjackson25
Unless I’m reading my test results incorrectly, my only elevated Pituitary Hormone is Prolactin. I’ve had no luck finding information on Prolactins roll in males. Can you direct me to info on Prolactins interaction with the Testes?

Yeah - they are in range, my bad. But I agree with KSman. Your main issue is the androgel is ineffective - so your body is halfway inbetween shutdown and trying to restart. That is bad TRT like he said - and that’s why you are getting hot flashes in principal.

Actually I’m fortunate that the Androgel took care of my Hot Flashes almost immediately. The symptoms I currently have are lethargy and sensitive nipples - i assume from my still low T and high Prolactin. I’m also tend to feel that even if Androgel were the perfect T replacement, 5g/daily wouldn’t be enough to compensate for the low T my test results showed (35ng/dL).
Both my blood draws were taken at 8:30am.

Though not directly related to my situation, I hope to take the time this weekend to look into the natural rise and fall of T levels throughout the day (higher in the am, etc), and how this compares to T level flucuations of daily Androgel application. I know it’s a general consesus here that injections are perfered over gels, but I’ve had responsibility for handling daily shots (not on me) in the past - it got old really fast. I’m not particularly looking forward to repeating that scenario (even EOD or E3D).
thanks again, and I wish all a great Thanksgiving

MY T-Level was 92 , yes 92 . Talk about low , my DR Prescribed me TESTIN Gel 50 mg . . . . Should I seek somthing more potant ?

[quote]gtbradford wrote:
MY T-Level was 92 , yes 92 . Talk about low , my DR Prescribed me TESTIN Gel 50 mg . . . . Should I seek somthing more potant ?[/quote]

This is someone else’s thread, not a chat room. Please create your own thread for your particular questions so you are not hijacking someone else’s. Always go back to your original thread to add updates, so we have some past context.

Please read the stickies, the protocol for injections has good info that you should know. [Sorry that is became a hijacked mess.]

That much T gel is rarely effective.

Thread update - finally got to see the endocrinoligist this morning. I went in not knowing much about the Dr and his areas/levels of expertise. I armed myself with questions pertaining to my particular situation, as well as questions about his ability to address my issues.

After a 35 minute meeting I left impressed. He had obviously reviewed my prior lab results well enough to recite most numbers from memory. Much of his dialog and questioning directly pertained to questions I had for him (you can learn a great deal about an individual and/or situation by listening). He answered my questions to my satisfaction. Bottom line his philosophy on HRT seemed in tune with mine.

I don’t have a list of specific blood tests being performed, but it is more extensive than previous testing. I will post the results when I get them.
I also have an MRI scheduled for next week. We discussed Prolactinomas, as well as other growths/tumors and thier ability to create situations like mine.

The only other note you might find of interest was the Dr’s questioning and discussion on how potential Thyriod issues can play a role in my situation - something that seems to be of particular relevance to this forum.
take care

[quote]mikej840 wrote:
The only other note you might find of interest was the Dr’s questioning and discussion on how potential Thyriod issues can play a role in my situation - something that seems to be of particular relevance to this forum.
take care[/quote]

very true… and with Thyroid, you also have to consider Cortisol and ferritin levels. Vit D25Oh is also a player, as is B12, Aldosterone, etc. etc. etc. Everything is inter-related and inter-dependent at some level.

Here’s an update on my situation.

Short explanation, I have a Pititary Tumor.

Longer explanation (including quick refresh of my original post), in October I went in for a physical because I very suddenly began to experience intense, full sweat hot flashes. I had started to feel “off” sometime mid September, but didn’t think much about it - at 56 one tends to use aging to explain a lot of aches and pains. I had also gained 10 to 15 pounds over the summer despite clean eating and my dedication to keeping fit. Again I related it to getting older.

Anyway, blood tests showed my total T level was extremely low (35ng/dL (280-800)). without any other tests I was prescribed 5g Androgel daily. I started to research hypogonadism and realized a lot more testing should have, and needed to be done. Second set of blood tests (see first post) showed T was up, but still low with the Androgel. It also showed very high Prolactin levels (46ng/mL (4-15.2)).

From here, I had a good meeting with an Endocrinoligist, who did a comprehensive blood test and scheduled an MRI. He called this afternoon. Said lab results were all in ‘normal’ range, except T is still low. Also, MRI results revealed the tumor. He is sending me all test/MRI results.

For the immediate, he’s upping my Androgel dose to 10g daily. He’s also putting me on Cabergoline. I don’t yet know the dosage. I’ll do more blood tests two weeks after starting and go from there.

It seems strange to be somewhat relieved to discover I have a tumor. But from my research, it seem that Pituitary tumors are not uncommon and very treatable. It also seems that successfully treating the tumor will very likely correct my testosterone issues - though it might take a year or so to find out.

I’ll post more info as it becomes available. In the meantime, I’d be interested to hear from anyone else with Pituitary tumor experience, as well as any other input.

thanks, Mike

We know that they are commonly seen, if you are an endo. We do not seem many of these cases here.

So is your peripheral vision width decreased? That can happen if the growth is larger and presses on one or two optic nerves that pass close by.

Prolactin must be elevated or abnormal to get caber. Caber may improve your mood by allowing dopamine levels to be restored.

It’s been over a year since I started this post, and since I’m about ready to begin the second phase of treatment for my Prolactinoma and it’s symptoms I thought I would provide a brief update to my situation.

A very brief history of my situation (you can read more detail in first post) - I’m currently 57 and in good physical condition. In a very short period of time (fall 2010)I came down with extreme symptoms of low T. Had it tested and was at 35 (200-1100 range). Found out I had a prolactinoma (Pituitary Tumor) that had shut down LH/FSH production and in turn shut down T production. it also created much higher than normal Prolactin levels.

For the past year, I’ve take Cabergoline to reduce Prolactin and to shrink the Prolactinoma. I’ve also been on TRT - started with Androgel, but due to insurance issues, switched to injections very early on. Caberline doses are twice a week, and I inject 100mg T once a week.

Not sure if I’m one of the lucky TRT recipients or if it’s because of what caused my low T, but I’ve never needed to add anything else to my protocol. My total T stays between 550-800 (200-1100base) whether I test mid injection cycle or on the 7th day. My E2 stays around 28-29 (11.6-41.2 base). Last bloodwork had free T at 109 (46-224 base) and bioavailable T at 209 (110-575 base). I have other results, but don’t think they’re necessary here (they’re all good). Most importantly, I feel good to great most all the time. I’ve lost weight I picked up due to the low T, and actually added some noticeable muscle (which makes me believe my T has been on the low side for a while - I just figured any symptoms I had were related to getting older) My only negative side effect from all this is slight edema - especially in my left leg/ankle

Just did an MRI a couple days ago. If the Cabergoline has shrunk the tumor, I will try to fire up my own T production my slowly weaning my body from the current TRT. Not sure how (or if) this will work, but I’m going to take my time. If I can’t restart, or if my tumor returns, I can live with the TRT - quite easily I should add.

hope my brief summary can offer insight to others in my particular situation. I’m happy provide more info if anyone wants/requests.

I’d also like to edit the post title to include Prolactinoma, but not sure how.

Mike

It is highly unlikely your pituitary will start kicking out LH/FSH solely from weaning off the T alone, given how suppressed you have been for quite likely a long time. If you want to do this, you will probably need some sort of SERM restart. But at your age, I would probably just stay on the exogenous T.

To change the name of the thread, just edit your first post and type in a new thread title.

Mike:

I have a prolactinoma as well - we should be sharing information. I’m 28 and have low LH/FSH and T levels.

The Cabergoline should definitely shrink the tumor a lot - something like 75%. I’ve been on it for about 7 months and my prolactin levels are near normal - but the other hormone levels haven’t improved. I’ve never been on any TRT before, so I wonder if your hormone levels may not naturally recover once the prolactinoma is taken care of. I’ve read that some guys naturally recover their hormone production, some don’t.

I’m going to push my Endo for a SERM restart, then go on TRT if that fails.

You said you feel good on TRT. Since I’m young and want to have kids, I’m very worried about testicular atrophy. Any issue there?

I’ll change the name of my thread so you can find it easily if you want to compare notes - just search for “Prolactinoma”.