boston332's story

Member Stories
#61

Went to see Dr. Jacobs yesterday. Was about a 1 and a half hour visit. Have to do a few more labs - total T, LH & FSH (again) and 3 adoil. Says he will probably start me on TRT.

My Vit D is low (19). Odd, I take Vit D supps too. My body isnt absorbing it for some reason. He said I would have to see another Doc about that. Also, since my LH and FSH are high he thinks my problem is testicular and is considering an ultrasound.

I will say that he doesnt give up. He says that he is helping about 2/3 of post Fin patients. And, those he isnt helping he said he hasnt exhausted his hopes for by any means.

Overall a nice guy. At least he didnt just say “you’re F’ed, what do you want me to do?” Seems to be genuinely interested in helping us. I’m just starting treatment but so far I’d definately recommend him.

He says TRT does not shut down your testosterone production and once you stop your testicles go back to regular size again. Anyone been on TRT then quit and have this happen?

#62

Boston332,

Please do keep us updated on your treatment with him. Has he recommended any treatment at all? You mentioned that he said TRT does not cause problems with testicile shrinkage if you stop taking TRT, but you questioned if this is accurate. Go luck on any of the many bodybuilding forums and ask this question. You will get real world answers to this question.

I really don’t appreciate his response to you regarding wether we would go back to normal. It doesn’t appear to me, that he really has any real medical data to prove we couldn’t recover. Where is his research study that validates androgen insensitivity as the source of our problem. If he has good intents that I’m happy he is trying ho help, however I’m far more inclined to agree with Golf, he’s businessman looking to increase his business. That can’t simply be dismissed.

#63

When I was talking about TRT I was talking about my visit with Dr. Jacobs. I spoke to Dr. Goldstein on Wed. over the phone. I visited Dr. Jacobs on Friday. Dr. Jacobs says you dont have to be on TRT forever and that your testicles go back to their normal size after you stop TRT. I have heard alot of conflicting information on that issue. I really do not want to be on TRT forever and after already having penile structure changes really do not want to have testicular atrophy as well. He says TRT “works” with about 2/3 of his propecia patients. Again, everyone’s biochemistry is different. He also said someone had their total T up to 4000 and felt no difference. But, even for those people he says he has not given up hope and remains positive. We are lucky to have him on our side. Was definately worth the time and money to see him.

Dr. Jacobs also said that he feels shrinkage is reversable. That it is basically hormonal and when hormones are back in order penis should return to size.

As far as Dr. Goldstein - He can offer us some great exposure and has many resources at his finger tips. I hope he takes a genuine interest in solving our problem. At this time I don’t think I will pursue treatment with him unless it turns out I have testicular blockage or something similar. I may have just caught him on a bad day but he seems a bit too glib about a condition that has destroyed many of our lives.

#64

I think the main reason for TRT not working on some people is because of neurotransmission deficiency’s along with possible thyroid/adrenal issues as well…

#65

So, Im having Bioavailable Test, 3 adoil G, Vit D, estradiol, IGF-1, LH and FSH tested. Should I go off ALL supps, even vites and mult vite before the blood test so I know where I am? (Im guessing yes) How many days should I be off the supps to go back to baseline? Im just taking vit d3, fish oil, macca, gaba, zma fuel, ester C, and vit E.

Oh, also was going to mention that Dr. Jacobs said I could 86 the cialis. Said our problem is hormonal and not a blood flow issue. Ive been off the cialis for a few days now and really no difference. Penis hasnt gotten any smaller really and getting an erection is still about as difficult as it with the cialis. Still dead below the waist.

#66

Well It’s not hormonal for me…My most recent labs indicate high normal Test. and Bioavailable Test levels.(about 800 Testosterone, and 370 Bioavailable Test) I probably have seen more doctors than anyone on this board…I have spent anywhere between 30k-50k EASILY trying to find a solution for me…

Moving on, I think some of us(not all) are dealing with complex deficiences across the board including: Thyroid/Adrenals/Neurotransmission along with nutrtional deficiency’s.

Something maybe wrong with you if your LH & FSH levels do not come down. However, you also may have a nutritional deficiency which is keeping your LH/FSH levels up. Since your Vitamin D is low, that is an important nutrional deficiency.

Keep the fight going…

#67

Headed off to see Dr. Shippen on Wednesday morning. Honestly I sort of feel like its probably a waste of time. Drive 4 hrs to tell me I need TRT which probably wont work. But, I guess he has seen alot of us and I can at least get his opinion on what kind of life I can expect to have now.

Also, getting back my Free Testosterone, 3 Adiol G, LH, FSH and vit D among other tests back sometime this week.

Odd I never really felt the “surge” of returning DHT that most describe after stopping the drug.
And, I had almost a complete recovery in July only to return to full sides again in August.

Wondering if I should have my prostate checked or have penile ultrasound done.

#68

It would be interesting to see what he says and what he offers. Shippen is still the doc you go to if you have any choice in the matter, he has complete knowledge of male hormones and also a better grasp of penile health than most uros. Crisler even says he still looks up to him. If what Dustin says is right and he goes with 25mg clomid e/d for a few months maybe that will help, it seemed to help labrea.

He probably will be quite realistic though. If you follow the story of ‘Josh Fulmore’ from the early days of this, Shippen threw everything at it; clomid, hcg, DHT compounded, HGH even and got minimal results. He likely knew then the game was up.

Golf was right though earlier in the thread, these PFS docs should really have made an approach to someone about the many cases of long term fin problems. I think Shippen was going to do a study early days but backed off. Maybe you could ask him that, if you feel comfortable about it.

#69

Hey boston332,

Good luck with your apt. Have you had your adrenals tested or would you consider asking him if he has found any pps patients with Adrenal fatigue? Myself and a few others are exploring this right now and there was also a doctor on the site a few days ago suggesting we look into this as possible area.

I would be curious to hear what he has to say in regards to it.

thanks,

#70

Just got home from seeing Dr. Shippen. The guy kind of reminds me of a wise old country doctor. He was very down to business and did not sugar coat at all what we are up against. He was compasionate but tempered that with a good dose of reality. I asked him if he felt there was a cure that would come about. He cracked a small smile which I took to mean its a loong way off. He said he felt the answer would come about someday in a related area of research that we probably havnt even thought of yet. Wish I would have brought my girlfriend in too, they said that would be fine. Alot of info to digest in a short period of time.

Dr. Shippen did mention the forum and evidently does check here occasionally. He did bring up that he is going to be having a conference call with approximately 6 other PFS docs sometime soon. HE brought this up, I did not ask him about it. This is great news as he wasnt even aware the Dr. Jacobs is currently blogging about PFS. Told him I was seeing Dr. Jacobs as well and he said that was great and he would be happy to work with him. Hopefully Dr. Jacobs feels the same way and maybe I can get a dialogue going between the two.

He has me on clomiphene (15mg daily) to boost my regular production of Testosterone and then I will start a cycle of T3 as soon as I get another bloodtest done. He gave me testosterone drops for my “pecker” as he calls it to help combat the shrinkage. And, Im talking 50,000 IU’s of vit d3 once every 3 days.

Currently he said he is focusing on T3 and thyroid issues in PFS patients. But, I guess you also have to consider that we probably only make up a tiny percentage of his patients so I have no idea how much research he is doing.

He said he HAS had patients who made complete recoveries. Honestly, I dont believe this will be me, not at least anytime soon. But some of us he can help. And, the fact that they are FINALLY all going to get together and share information is very exciting news.

He didnt really seem interested much in the role 3 alpha-androstanediol glucuronide plays in PFS. Cant remember his reasoning for that off the top of my head but when I said I was getting it tested he said it was “nice to have” but of little consequence in his opinion. I found that interesting.

He also encouraged the use of cialis or viagra to keep blood flow going to the penis. He said if you can masturbate go ahead and try to do it regularly. I assume he knows “regularly” for us now would be a couple times a week instead of a couple times a day.

Peace to all and thanks for reading my drivel.

#71

So, I have two different treatments offered. BTW - I told both docs I was seeing the other and both said that was great and they’d be happy to work together.

Dr. Shippen - clomid daily and T3 cycle. I would up the dose on the T3 every couple of days checking my body temp all the time and shoot for 98.6. When I got there I’d stay there.

Dr. Jacobs - Straight to TRT. Im low normal testosterone and he feels (as did Jacobs) that I was high normal prior to Fin. He basically says I am low testosterone and his 1st step is to see how I respond on the higher level.

What is the T3 cycle shooting to accompish?

Any thoughts on any of this , which would you chose?

The labs screwed up my last 3 adiol G test so I dont have that yet.

#72

They have no idea, they are two steps behind jn at best.
Sorry man but thats just being real with you.

#73

Keep us updated Boston, has he not put you on any other supps or herbs?
Did he say how many men he has seen about this?

#74

boston332 - I just have to say thanks for your dedication and posts on here. I’m sure there are many guys like me just reading and not posting on here - so you are really providing great info to a lot of people.

I look forward to hearing more details from you as you continue with your recovery. Good luck and thanks again!

#75

@Tim - Yet another post that is of no consequence or help to anyone. Neither Doctor said they had the answers, quite the opposite. But, they are going to work together. Dr. Shippen said, “If Dr. Jacobs has any answers I’m all ears”. Maybe each has a little piece of this and some day this brings us that closer to complete picture. I may never get better, but they may very well come up with something that will help you or someone else here.

@Qwerty - No problem. Remember it isnt written anyplace in stone that you’re gonna be like this forever. Jacobs said there is a very large population of people suffering with sexual sides from SSRI’s and there is alot of research going on there at the moment. This is a similar situation to ours and may shed some light on PFS.

@Luckfax - Dr. Shippen has me taking 50,000 iu’s of vit d3 every 3 days. And, he gave me deplin for depression. Also, he has offered the treatment plan as I outlined in the above post. He said he is currently exploring the thyroid in his search for what is wrong with us. He’s a brilliant doc with a ton of experience so he must have good reason but I dont understand how kicking up my thyroid will up my testosterone.

To all of those who say the post fin docs are out to make cash - last night Dr. Jacobs called me from his home and talked to me for almost an hour @ no charge. I offered to let him go and he kept talking. If your in the androgen deprevation camp he said that he has had patients that were androgen resistant - one in particular who was thyroid med levels that would kill a normal person and over time her body became less and less resistant and is basically back to normal.

#76

Latest Labs - taken 9/23/2010

3 Adiol G - 383 ng/dL , 260-1500 ng/dL
Testosterone, Total 587 ng/dL , 250-1100 ng/dL
Testosterone, Free 99.9 pg/mL , 46-224 pg/mL
Testosterone, BioAvail 201.1 ng/dL , 110-575 ng/dL
Sex Hormone Binding Globulin 26 nmol/L , 9-45 nmol/L
Albumin 4.4 g/dL , 3.6-5.1 g/dL
Estradiol 37 , 13-54
FSH 10.7 , 1.4 - 18.1
IGF-1 374 , 50-303 <–HIGH
LH 6.9, 1.8-8.0
DHT 45 ng/DL , 25-75 ng/dL
Vit D 25-OH, D3 26, 30-100
Vit D 25-OH, D2 <4

#77

Came across this on the PSSD yahoo forum. Research beginning into epigenetic effects of prozac, mentions gene expression etc.
academictransfer.com/employer/UMCR/vacancy/6753/lang/en/

#78

Nice find , Luck. Maybe Jacobs will be able to apply something like this to us someday.

#79

Anyone who has done the T3 w/clomid cycle - How long before you felt any results? Ive been on this for over a week and Ive really felt no changes at all.

Im thinking about going on TRT for a few months and seeing how I feel. Any thoughts?

#80

For few cases I have read, results of Clomid only show after stopping the treatment. Also, in your case your LH and FSH were on top of the range - I am not sure what Clomid is going to do.