How to come off HCG solo TRT? feel very sick need help...

[mully024]

Hello,

New to the board, I tried to make a post yesterday outlining my situation and the struggles I am now experiencing but it still hasnt posted so not sure if it will...not going to rehash the whole story here as it is long, but I am 30 y/o, started feeling sick in August of 2011, no real health issues prior, very fit. Docs thought maybe lyme or some other infection, i've now seen 50+ docs, $300k+ workup in boston, things off but no diagnosis...one thing that was back off was my T.

Had it tested a good 10-12 times, averaged out to around 300 TT, free T always at the very bottom or just below range, SHBG 30-40, E2 always low, like 5, 8 or 12, LH/FSH always very bottom of normal range... doc said I am secondary, pituitary MRI normal, docs dont think low T is my main issue but may be contributing to the symptoms I experience so raising it may help with some.

After much discussion, HCG solo was decided upon due to my age, me being secondary and no one even sure why (aside from possible lyme/TBD infection or autoimmune depending on whom you ask).

Started HCG 5 weeks ago, 300iu EOD, sub q, actually felt like it was helping the first few weeks, then things started to go back down hill...the past week especially. I've honestly felt like I am dying...feeling of wanting to jump out of my skin, extreme restlessness, agitation, hopelessness, muscle aches (especially in my legs in the a.m.), sleep issues, skin f'd up, nausea/GI issues, libido totally gone, and erection floppy and weak at best...

Labs came back two days ago, TT was up to 600, free T was like 110, SHBG 34, LH/FSH flagged at less than 1 (which I think is normal on HCG), and E2 was at 60 range 14-40 flagged high...

I was suppose to do my shot today but havent yet. My questions are as follows:

1. Does the above description sound like it could be from the E2? I cant figure out if this is E2/HCG related or my underlying condition, whatever that me be... The things that make me think E2 related are that my E2 is very high compared to where it was at (5), and the libido/erection issue (when I was rock hard two weeks ago), and the symptoms seemed to fit those who are very sensative to E2. Prior to HCG I was too low (at 5-12) so Endo thought raising it would actually be a good thing...just dont think he had a level of 60 in mind, and that level was from a draw 48 hrs. after shot so it was probably actaully even higher...

2. I was weary about messing with my hormones anyway because of all my underlying stuff and no one being able to tell me whats up, but the promise of it making just one symptom better was worth it...I am terrified of adding something else to the mix like an AI at this point, so I am strongly leaning toward going off the HCG:

a. I've only been on it at 300iu, EOD for 5 weeks, any issues going off cold turkey? from what I've read both E2 and T should go back to baseline w/o much time after stopping...my dose was pretty much what the weight loss people do..and for the same amount of time

b. how fast should E2 start dropping? I've read it peaks 24 hrs. after hcg injection and then starts to decline to baseline, but havent read how fast that happens...last shot was Friday (48 hrs ago) and I still feel so sick...

3. do you think I should keep it up with the HCG or take a break and then give it another try at a lower dose, maybe even like 100iu EOD? it did seem to help in the beginning...I thought it might have been placebo because doc said it should take a few weeks, but I just think my body responded very fast...clearly my testicles are still in perfect working order, its more of a signal issue...my sleep seemed better, muscle aches were better, ankles stopped clicking, GI system felt better, libido and erection were way better, and fatigue/energy was slightly better..

Thanks for any help, I am really struggling here, have been on the edge of heading to E.R. last few days but held off because I think it may just be the high E2 from the HCG causing my issues...

 

[dhickey]

Definitely address E2. That would provide significant improvement.

What was the range on free T? I would take just enough to get towards the top of the range. Lowering E2 will raise T a fair amount.

Quitting seems silly. Get a AI to fix E2 and adjust HCG if needed.

 

[mully024]

Free T range is 60-185 pg/ml, I am at 104, was between 70-75 in prior tests...

i just feel like I am opening a can of worms here...if the docs looked at me and said yes, you have idopathic secondary hypogonadism and if you correct this you will be your prior self, then i would be all for adding multiple TRT drugs to do this...but basically they've said, no you've got something lese going on, we dont know what it is, maybe chronic lyme infection, or an unclassified autoimmune disease (although all AI and inflammation markers have been neg), and having the borderline low T is probably contributing to your symptoms but not causing them.

It makes me feel like I am playing with fire, mainly because how bad I've felt in the past week...I have no idea if this is totally contributed to the E2 being jacked up or if its my underlying condition...

if I were to come off what are your thoughts ont he questions pertaining to that? I'd like to get E2 in the sweet spot and keep my T where it is and see how I feel, I imagine it will be quite nice, but I really dont want to start messing around with an AI or the like....maybe lower HCG to 100iu EOD and see what happens?

Definitely address E2. That would provide significant improvement.

What was the range on free T? I would take just enough to get towards the top of the range. Lowering E2 will raise T a fair amount.

Quitting seems silly. Get a AI to fix E2 and adjust HCG if needed.

 

[dhickey]

If your T is low, getting it into a healthy range is not a bad thing in my armature opinion. My guess is you will feel a lot better if you get E2 into the 20s. I don't think there's much harm in doing this while trying to sort out any other potential issues. Getting Free T and E2 into a healthy range made a huge difference for me and provided much needed relief while I sort other issues.

 

[ELROCK]

What does your diet look like? Do you take vitamins or a multivitamin? If so which ones?
May have possible nutrient deficiencies. Did any of the docs you saw look into or mention a nutrient deficiency?

 

[ELROCK]

And yes, the low e2 and the high e2 can be cause your symptoms.

 

[dhickey]

I wouldn't bother lowering your HCG dose. You could do it less frequently I suppose. 300IU MWF instead of EOD is probably easier to track. If you use Anastrozle, I'd get the liquid form from a research chem company or dissolve the pills in vodka and use a graduated dropper to dose. I'd start at 1mg per week and test after two weeks. You could do .3mg with your three HCG doses. This would be 3 pumps on liquid version I get.

I am not an expert in the field and have not treated anyone but myself. Because the endos I've seen are only marginally useful for running blood work and writing scripts, I've tried to learn everything I can on the subject and played around with my own protocol quite a bit.

 

[mully024]

What does your diet look like? Do you take vitamins or a multivitamin? If so which ones?
May have possible nutrient deficiencies. Did any of the docs you saw look into or mention a nutrient deficiency?

Diet is very clean, try to eat a Paleo type but not strict...of course I am having a hard time mainting weight which i cant afford to lose, priro to this I was 175 lbs. all muscle, and have lost about 25 lbs. in the past 2 years for no identifiable reason, mostly all muscle.

No nut deficiancies really identifed so far, aside from very low vit D (18) and potassium being low at points, everything else is fairl good. Going to supp with vit D 2000iu, eat more potassium rich foods, and add in some fish oils this week. I've stopped the HCG for now, having things retested this week to see if everything bounced back to baseline (doc said it definitley would within 10-14 days, given i was only on such a low dose of HCG for only 5 weeks) so we'll see. He really thinks the **** I am going through is not related to the spiked E2 but rather the underlying illness...wants me to start back on lyme treatment this week and start back on the HCG a t a lower dose down the road, maybe like 150iu EOD.

Obviously my body responds well to the HCG but the numbers show that it was probably getting more than my testis could handle..

 

[LMuscle]

After 50+ doctors and over $300k later, all they could decide was to try HCG? Are you f-cking kidding me?

 

[mully024]

After 50+ doctors and over $300k later, all they could decide was to try HCG? Are you f-cking kidding me?

Well, they did try other things...I was on two short courses of abx for suspected lyme/other tick born illness...however from what I now know the length of treatment was not enough and the testing is apparently quite faulty...mine always came back middle of the road, i.e., suggesting exposure...