my TRT nightmare and how little the docs know....long read, but open to comments

Flack5150

New member
Hi, first time posting on here, but have been on TRT for over a year. Currently on 200mg cyp/week & just started Arimidex at 1/2 tab twice a week. I'll try and keep the background short and get to the labs and questions, but the background might help. I am currently 43, so 38 when first lab drawn. I should also mention that I have Rheumatoid Arthritis. I was diagnosed with RA in 2009, and was immediately put on Methrotrexate. (low dose chemo drug). Was on the methotrexate for 1+ years before I started noticing hormone imbalances on a daily basis. It was like that day was just a little bit worse than the day before....but it was very obvious. My libido crashed, my belly fat seemed to grow like crazy, couldn't keep an erection....and the list goes on. Classic low T. I also started getting cold all the time, so I think my thyroid was going haywire too. Needless to say I knew I needed to get off the chemo first, and was hoping things would self regulate back to normal. The thyroid did, but the test and low t symptoms never did. I found a Naturopath doc, who also had RA, that stated that she could get me off my RA meds for good so it was worth a shot because I felt less and less of a man everyday. Found out it was food allergies, and stopped those foods and 3 months later off RA meds and haven't looked back. My RA is in clinical remission. I thank the Naturopath doctor a lot, yet my Rheumy doc poo poos the idea and said it was because I got on the chemo early....maybe a combo, but it was quick once I quit those foods. Now that was under control, I wanted to deal with the low t symptoms. The naturopath thought she could try the test precursors first to see if that would boost, so tried high does DHEA, tribulus, and a couple others I don't recall. Then tried the chrysin, DIM, and niacin to stop the aromatase symptoms I was dealing with. (bloating, belly fat, etc.) So first T labs came back at 225 (total), and I waited a few months and got rechecked and (longer period post the chemo) and had full panel checked.
11/29/2010
Prolactin: 8 (4-15 ng/mL range)
LH: 3.8 (1.5-35 range)
Insulin-like growth F1: 162 (106-277 range)
Test, Total:225 (240-950 range) LOW
Test, bioavailable: 126 (72-235 range)
They sent me to 1st endo, and he said low t symptoms are from depression or sleep apnea....not from T. He said since bio-available normal that I am just fine. The bedroom said otherwise, so he said he would write script for Viagra. (i passed)

I went back to primary doc and requested a recheck as symptoms were worse...but I said I want to see different Endo. (#2 endo)
rechecked on 8/24/11
Test, Total:202 (240-950 range) LOW
Test, bioavailable:109 (72-235 range)
This endo repeated feedback as first, must be depression and/or sleep apnea.
Another 6 months go by, and no improvement so I go back to primary care doc, and got rechecked again.

rechecked on 3/9/2012
Test, Total: 276 (240-950 range)
Test, bioavailable: 102 (72-235 range)
Primary doc said, "your normal" and Test has nothing to do with those symptoms. I asked that he provide me some evidence that would back up that claim, as I told him that I could find thousands of articles that disagree with his statement....he told me not to come back...so I didn't

On to a new doc.
rechecked on 7/13/2012
Test, total: 333 (280-800 range) these were Mayos new reference ranges
new doc reviewed previous labs and since it did go up, we both agreed that maybe things were normalizing (based on time off methotrexate) however symptoms really never improved..but I was hoping.

rechecked on 2/22/2013
Test, total: 224 (280-800 range)

rechecked on 8/6/2013
Test, Total: 305 (range 280-800)
Test, Free: 13 (can't find ranges now)
This new doc, my primary doc, still wouldn't do anything.

So I went back to Naturopath doc to see what she could do, outside of pre-cursors, and she said we could try bio-identical testosterone cream from compounding pharmacy. I started at 25mg/day. I did that for a couple months, but didn't see any improvement so we bumped it to 100mg day. (can't find labs from her anymore) however, with the higher dose my symptoms got dramatically worse. This is when I started looking into Aromatase, and I figured I must have some conversion issues. (from the chemo from years back??) I ended up stopping the cream as I couldn't handle that.

Went back to my pcp at Mayo, and asked to be rechecked after the cream was stopped.
rechecked 2/3/2014
Test, total: 226 (240-800 range) LOW
Test, free: 9.9 (can't find the range)

Finally got my first diagnosis of hypergonadism. She agreed to try Test Cyp injections.
the same evening of my first dose.....the cloud I had been living in started to go away, and I performed in the sack. :eek:)
Problem was, the Mayo protocol is 200 mg every other week, and I crashed after the first week. I asked to go weekly injections, and she said no.
rechecked 3/22/2014 (2 weeks after 2nd Cyp injection)
Test, total: 356
Test, free: 14
I felt so much better after the injection, but the troughs were tough. I begged that we bump it up to weekly again, and the answer was no....time to start looking for new doc again.

Found a mens health doc across the state who specialized in Low T. So I hit the road, and he was very nice, and really said that I should be on TRT. Started at 200 mg every other week again to get baseline.

rechecked 6/3/2014 (after 2nd dose at peak)
Test, total: 727 (241-827 range)
So I was in a good place for the first 4-5 days after injection, but crashed hard, so we checked test during a trough.

rechecked 8/4/2014
Test, total: 93 (241-827 range) SUPER LOW during trough
So we moved onto 200 mg every week.

rechecked 2/15/15
Test, total: 880 (241-827 range)
Estradiol: 84 (<39 normal) Way too high!
This would explain a lot of the bloating and not being able to drop a pound of body fat. (I didn't mention before that I do weight training 4-5 days a week, with 2-3 days of cardio)
I asked him what he would do for the high estrogen, and he said "nothing, I manage Testosterone" ....damn....need a new doc again!

did my research, and lots of calling and found a Urologist who stated he manages the whole hormone package.
He immediately started me on Arimidex, 1/2 tab twice a week. I immediately started to notice a change in body fat. After 3 months on Arimidex (and no change to diet or exercise) I have dropped nearly 20 pounds of fat. However, he was not in insurance network, because I had a local urologist who manages this....so they told me. This doc set me up on a plan and the goal was to take this plan to local urologist and have them manage it. (insurance purposes)

Another new doc. And this one said I must see endo first for a referral. So this is my 3rd time with an endo.
This endo, said wow, your on a high dose, I think you should stop all together. "her" plan was to wean off all test and AI in 2 months time and then recheck hormones in 6 months. (needless to say I didn't listen to plan and didn't go in for follow up.)

here we are today...finally...
latest labs. (and this is on 200 mg Cyp week (for over a year) and Arimidex for a little over 3 months.
Labs.
8/14/2015
Test, total: 592 (250-1200 range)
Test, total: 692 (250-1200 range) still trying to figure out how they did two tests from same blood sample and got different numbers
Test, free: 33 (9-30 range)
PSA: .6 (0.00-4.00 range)
Hematocrit: 47.6 (41-50 range)
Prolactin: 25 (4-15 range) HIGH
He refused to check my Estradiol, which I'm pissed at b/c I'm on an AI. Will try have this checked soon.

So my question is what issues do I have with the high Prolactin? I have noticed that my libido is hit or miss lately, and some days I feel bloated yet. Could still be high estradiol, but won't know until rechecked.

i really feel good 95% of the time, and the RA is in remission. I hate to dick that up and potentially go back on those horrible meds.

Any comments or suggestions would be helpful.
 
Let me start by saying I didn't read your whole post. I didn't have time. I skipped to the bottom and saw your labs.

You do have high prolactin! That needs to be treated.

You need to check your estradiol. Look below at my signature line for how to run your own private blood work. It is cheap and fast.

Have you tried pinning twice a week? Sorry if that is covered in your post...
 
thanks for the feedback. What can I expect to see for symptoms with the high prolactin? Does that lead to other issues? What med is commonly used to treat that? If I get my Estradiol rechecked and that is still high, which would lead to increase dose of AI....would that also potentially lower the prolactin? Or does that get treated separately and not in combination with high estradiol?
And no, I have tried pinning 2x week. I haven't noticed the peaks and valleys at once a week, but it that would help regulate the estradiol and prolactin than I sure would give it a shot.
 
God damn, you've been through the wringer OP!

As Tron (I DID read the entire post - neener neener :p) stated, splitting your injections to every 3.5 days will help with estradiol issues, potentially lowering the amount of AI you require. You may even be able to come off it completely once you shed excess body fat.

Now onto prolactin... I REALLY hate to ask this, but in your painful adventures, did any of these educated idiots ever check your pituitary gland for tumors/growths? I saw your LH, which was on the lower end - which is why sleep apnea was suggested so many times - but no mention of an MRI.

Hyperprolactinameia is usually caused by a drug interaction or a "glitch" with the pituitary gland. I would ask that to be investigated as prolactin can bring some new issues to the table if left unchecked.

With regards to blood tests being less than what you demand - take the doctors out of the picture completely and order your own. Megatron28 has two good online services in his signature that can be had for under 60 dollars.

Hang in there, you now have an official diagnosis, which can be taken to just about any doctor from this point forward. If all else fails, continue to educate yourself, and you'll be able to manage the majority of things on your own.

My 0.02c :)
 
thanks for the feedback. What can I expect to see for symptoms with the high prolactin? Does that lead to other issues? What med is commonly used to treat that? If I get my Estradiol rechecked and that is still high, which would lead to increase dose of AI....would that also potentially lower the prolactin? Or does that get treated separately and not in combination with high estradiol?
And no, I have tried pinning 2x week. I haven't noticed the peaks and valleys at once a week, but it that would help regulate the estradiol and prolactin than I sure would give it a shot.

I can tell u that I read for Prolactin problems that B6 can fix it up.

300mg of it ED can prevent the issue in general
800mg of it can remove it if u have it already.

B6 is not toxic too in large doses, it's Water Soluable.

Got this information a while back browsing on this site. I hope it helps if anything with that problem temp
 
I can tell u that I read for Prolactin problems that B6 can fix it up.

300mg of it ED can prevent the issue in general
800mg of it can remove it if u have it already.

B6 is not toxic too in large doses, it's Water Soluable.

Got this information a while back browsing on this site. I hope it helps if anything with that problem temp

It is worth a shot until I get this doctor issue worked out. thanks for the suggestion.
 
yup.. this whole issue would have been easily fixed if you split your injections every 3.5 days and ran 50-60mg every shot.. you wouldn't have likely needed adex too because thats such a low dosage and aromatization isn't likely strong enough to take your estrogen out of range..

stupid doctors..
 
I can tell u that I read for Prolactin problems that B6 can fix it up.

300mg of it ED can prevent the issue in general
800mg of it can remove it if u have it already.

B6 is not toxic too in large doses, it's Water Soluable.

Got this information a while back browsing on this site. I hope it helps if anything with that problem temp

Only if it's not due to a pituitary issue. Hyperprolactinameia from drugs are totally different as even an increase in dopamine fixes it at the source. ;)

Good information though. :)
 
quick update - just got off phone with current Urologist, and he said my free test is WAY to high and will not refill my Cyp prescription. So, after being on TRT for over a year....lost 20 pounds of fat, lowered cholesterol, lowered trigs, pain free remission of RA......all this over that year span. He spit in my face and said NOPE. What a jerk. He didn't even suggest adjusting my dose...nothing. He's the doc and he holds the prescription pad, so he is determined to win. I see a complaint showing up in his mailbox soon, and I'm thinking of seeking legal assistance.
 
yup.. this whole issue would have been easily fixed if you split your injections every 3.5 days and ran 50-60mg every shot.. you wouldn't have likely needed adex too because thats such a low dosage and aromatization isn't likely strong enough to take your estrogen out of range..

stupid doctors..

Thanks, and I do plan to start splitting my weekly dose......as soon as I can get my new script.
 
quick update - just got off phone with current Urologist, and he said my free test is WAY to high and will not refill my Cyp prescription. So, after being on TRT for over a year....lost 20 pounds of fat, lowered cholesterol, lowered trigs, pain free remission of RA......all this over that year span. He spit in my face and said NOPE. What a jerk. He didn't even suggest adjusting my dose...nothing. He's the doc and he holds the prescription pad, so he is determined to win. I see a complaint showing up in his mailbox soon, and I'm thinking of seeking legal assistance.

Fire him and go to a new urologist...or go to a specialist, an endocrinologist. I had to fire one doctor and an endo before I finally found a good urologist who is treating me properly...or as properly as can be expected given the low amount of information out there in the medical world about low T.
 
Fire him and go to a new urologist...or go to a specialist, an endocrinologist. .

I have fired this one, and I do know another Urologist I think will be good, but having issues with insurance, etc.....really just a bunch BS hoops they make you jump thru. However, I wanted to comment on the Endo quote. I have been to 3 different already, and they all seemed less informed than the Urologists. But that has just been my experience.
 
I have fired this one, and I do know another Urologist I think will be good, but having issues with insurance, etc.....really just a bunch BS hoops they make you jump thru. However, I wanted to comment on the Endo quote. I have been to 3 different already, and they all seemed less informed than the Urologists. But that has just been my experience.

You're better off. A doctor that doesn't realize free testosterone will slightly be out of range due to a lowered SHBG is an idiot, and not qualified to treat hypogonadism.
 
I have fired this one, and I do know another Urologist I think will be good, but having issues with insurance, etc.....really just a bunch BS hoops they make you jump thru. However, I wanted to comment on the Endo quote. I have been to 3 different already, and they all seemed less informed than the Urologists. But that has just been my experience.

In all honesty, I have found the same thing. My current urologist said endos act like men killing flies with shotguns. There is a problem, so they throw everything they have at it until something works... My urologist said he prefers to use a flyswatter to kill a fly - the proper tool for the job.
 
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