ok… so my results are all within range… and my GP thinks im crazy… blood was drawn at 10am… seems Total T and T4 may be low?
Total T 490 (250-1100) - this is a low, right?
% Free T 1.94 (1.5-2.2)
Free T 95.1 (35.0-155.0)
TSH 3rd Generation - 3.38 (0.40-4.50)
T4 Free - 1.1 (0.8-1.8)
T3 Free - 3.6 (2.3-4.2)
should i get tested again. because i crashed after i was tested for these. my GP wouldnt test for more, and now that he says im in range, i dont think he will… how do i get a full range of blood work to bring to Jacobs or shippen?
Jacobs gives bloodwork orders at your first appointment. Shippen mails them to you usually then you have them all done at the time of your appointment.
labrea, drury are a few that come to mind. I think there are a few others. These are not documented full blown recoveries. These folks have used this type of treatment early on and been able to regain a lot of what was lost. This is in contrast to myself and many others who dicked around and met with multiple endochronolgists and tried utilitizing supplement/diet protocols for months to no avail. Now we sit here six months plus out with our systems gradually declining to the point where there is likely no return. Not saying the drug route has worked for everyone, but I would have at least liked to try it early on. I have had periods where my body felt like it was trying to fight and some good days of 80-90 percent, but overall I have declined gradually. I may have been able to stabilize myself at that 80-90 percent level where I could be pretty much live normally.
still no change for me… maybe head fog is slightly better today? havent left my house in many days (until today). cant sleep more than an hour at a time if im lucky. lacking everything. depression is pretty bad i think… i have recently noticed rings/bumps in the shaft of my penis that werent there before…
still have strange pings, pains and pressures all over in my groin area. pain, coldness in penis by the end of the day… pings and pressures in testicles started again today… not sure if thats good or bad… still overdoing it on supplements. raised my D3 to 6000 per day… how much zinc should i be taking? pretty much at rock bottom.
on a positive note, made an appointment with Dr Goldstein in SD for Nov 23… and just made one with Dr Jacobs in NYC next Thursday. Got full blood work today per Dr. Goldstein, will send it to Jacobs as well.
i know this may be overkill, but im not going to let this thing ruin me for the rest of my life without a fight… i dont care about the money… hopefully each will come at this from a different angle, and figure out whats best for me.
going to try to stay away from this forum for a bit, because i think its making matters worse. thank you guys for giving me a place to start, and good luck to you all… will update you when things get better…
Not overkill and well worth the money. I’m also seeing 2 PFS docs. Let us know how it goes.
I’m gonna go out on a limb and say getting those two to work together to come up wtih something will be about impossible. Dr. Jacobs and Dr.Shippen would never contact eachother for me. Both would just say to have the other one email or call…
for what its worth, i remember one of the posts someone was trying to piece together why some of us get this and most dont. my brother just reminded me that he had a pituitary tumor a few years back and just told me my cousin also has Prolactinoma… so maybe its connected that i have PFS…
can you guys please tell me how long the mental side effects last? or what i can do to help?
currently taking 6000 vitamin d… zinc 100mgs per day) horny goat weed, fish oil… multivitamin
i have my first appointment with Jacobs thursday and goldstein in SD next week… but i can barely function head fog is so bad… weakness, lethargy, i dont care about anything anymore… crying non stop… i need help
How long have you been taking that much zinc for?
Only a day or two. Was taking just 50. Now Taking on a night one in am. Too much?
New Blood Results… Prolactin very high… does that point to Prolactinoma? its in my family… bother had it… rest seem in order… except total T seems low? any ideas? do others have high prolactin?
all symptoms still there. head fog, ed, cold/pain in penis. etc… any thoughts?
LH 5.0 (1.7-8.6)
FSH 4.4 (1.5-12.4)
Estradiol 18.3 (7.6-42.6)
DHT 39 (30-85)
Testosterone Serum 432 (280-800) LOW?
Prolactin 37.8 (4.0-15.2) VERY HIGH.
Prostate Specific AG Serum 0.4 (0.0-4.0)
Sex Horm Binding Glob, Serum 33.8 (14.5-48.4)
meeting jacobs tomorrow.
Noone on this forum can tell you if you have a Prolactinoma better than a neuroendocrinologist such as Dr Jacobs. Saying that, a search on the internet shows that you might expect prolactin in the many 1000s if it where the case.
Other reasons for high prolactin? Excess Thyrotropin-releasing hormone (which funnily enough also inhibits dompamine) but prehaps most importantly emotional stress also increases prolactin. Get it looked into and see what the good doc says. Stop panicking about the situation too Mark, youve just got to imagine that you will find a cure.
I understand how he feels. Its tough when this first happens to you and you have to figure out a way to come to terms with it. As Oscar indicated, you’re in very good hands with Dr. Jacobs. There has never been a doctor more qualified who has attempted to treat PFS. You’re in very competent hands.
thank you guys. youre right oscar… i found also that the levels are in the 1000s… i guess i was hoping for a pituitary tumor rather than PFS… and yes coming to terms has not been easy for me… anymore, i am too exhausted to care… but cant sleep, and dont feel rested… ive asked before, but no one answers… this cant go on like this forever can it?
i still have many friends (living in CA) that do not trust the western medical field… and think i should try to heal on my own… i believe in the power of the body to heal itself with positive thinking, but i cant do nothing but eat healthier and believe i will get better?
i am going to jacobs… see what he says, and then i’ll have a decision to make…
thanks boston. 
Please do not buy into some hippie left coast hogwash about “healing yourself”. Who the hell are they to tell you what to do? You need cutting edge medical science admistered by talented professionals to get you back to yourself. Yes, eat right, get plenty of rest, take the vit d3 supps, etc. like the rest of us are doing.
To answer your question - no one knows how long you will be like this, but generally most people symptoms improve some over time. I have a feeling you’ll be more positive about this after you have seen Jacobs.
ps- ask Jacobs about Procaine if you get the chance.
Hey Guys
update. so i met with Dr Jacobs… we talked a lot about what is going on, and he seemed pretty positive he could help… ordered more blood tests (i forget which, sorry)… waiting on those results… will post when i have them. not much more to say that you havent already heard. he tested my prolactin again, and if it comes back high again, im going to go for an MRI. it will be ongoing. will keep you guys updated on what he wants to do.
im supposed to go see dr. goldstein next week. but he doesnt take insurance (which is weird, no?), and the appointment could run between $500-$2000, depending on tests he does… not sure i can dish out that kind of money right now, especially since im already working with Jacobs… anyone deal with Goldstein? is it worth it?
Physically
im about to hit my 2 month off mark, and i have to say, physically i am feeling better over the past week or so. morning erections have returned… i was with a girl last weekend, and everything worked pretty well. was able to achieve and sustain an erection even though i had masturbated earlier in the day. and it felt good… i had lots of desire… penis is normal sized (maybe even bigger?) and warm most of the day instead of shriveled and cold and my testicles are not hanging low anymore… a few spontaneous erections as well.
no taking any supplements anymore. havent noticed much of a change. still eating a very healthy diet. didnt over thanksgiving as much, but it doesnt seem like it affected me much. (except headfog from eating gluten, stuffing, bread, cheese maybe?)
the hard bumps/rings in my penis are a bit bothersome. only because i look up pyronie’s and freaked myself out… did any of you get rings under the skin? I have 2… theyre there when erect and flaccid. and wrap around the entire shaft… they dont hurt or anything, but definitely there. think it is a form of pyronies? does it get worse?
Is this feeling better common? is it a sign that my body is coming back on its own? did any of you guys with long term effects come back after 2 months only to crash again?
Mentally
The headfog is still there. pretty bad some days. Axiety and depression have lessoned… probably because physically things seem ok…and Dr. Jacobs assured me that we will figure it out. Whether i believe him or not, it seemed to help a lot… Libido is still lacking, unless im in the moment… which isnt bad i suppose… at least im into it when its happening…
Going to start acupuncture and yoga. cant hurt. especially acupuncture for adrenal fatigue… and supplements once Jacobs gets back to me… Not sure if i should test my hormone levels again now that im feeling ok?
wish i had more to tell… hopefully when next round of tests are back. any answers to the above are much appreciated… thanks guys!
Mark, unless that’s something that has run in your family, it’s unlikely. Myself and several others have gone for the MRI and it’s turned up nothing in the line of a pituitary tumor.
Maybe it will help you with piece of mind though.
Stick with the supplements , diet and exercise as I think you already know. I had about an 80% recovery in July this year only to go back to full sides in August so this thing can play cruel jokes on you.
Good call taking hold and seeing Jacobs. As you said, Jacobs is a very positive guy. Some call that BS’ing but I think sometimes it can help you physcially if you have some hope. I thought you’d feel better after you talked with him. Its true no one has a cure but his educated guesses are a hell of alot better than mine.
Far as Goldstein goes - if you dont seem to have any physical problems with you penis or its operation then why go? Might be good for piece of mind but in my experience urologists like to cut first and ask questions later. Wouldnt blame you at all though if you went for piece of mind sake and made a little vacation out of it. The sun and relaxation might do you good.
ps- Isnt it great when your disappointed you dont have a tumor. I was hoping for a tumor or something too.
I spoke to Goldstein in S D also. He gave me a phone interview and I tried to explain what was going on. He just kept saying he needs to inject shit in my dick to see if it works. I told him no its not that it is definitely in my hormones or something i just dont know what. This turned me off because i didnt want to drop 1500 bucks on something i already knew wasnt the problem and he doesnt take insurance. however it would be interesting to find out his perspective. i dont have 1500 right now anyhow i wish someone on here had some good cash flow where they could go drop that much here and there and find out whats up from everyone… I definitely spend a good portion of my income on this but i just dont have the capacity to drop that much.
Of Note, there is a doc up at UCLA Dr. Swerdloff that had a hand in creating Viagra and is the supposed expert on the chemicals responsible for erections
Almost 9 weeks off.
New results:
Total T - 407
Bio Available T - 208 (128-430)
LH 4.5 (1.7-8.6)
Cortisol 12.8
IGF-240 (115-307)
Vitamin D 39.1 (32-100) -and i was taking 6000 i/u per day)
FSH 4.3 (1.5-12.4)
prolactin 33.7 (4-15)
DHEA Sulfate 423.8 (160-449)
Adiol G 393 (340-1200)
Jacobs wants to start by lowering prolactin (i forget which drug, the scripts in the mail, will post later) and then start a cycle of clomid in january.
other than that im feeling terrible (emotionally and physically)… and of course two beautiful women ive had wanted to date want to hang out more now…
will update occasionally.
I cant believe this is happening.