I Don't Know How I Should Feel or What to Do

@highpull
thanks a lot for replying mate! im going to point them that because telling my grandma, who i live with since the start” is depressed because i wont take treatment from clueless doctor who wont prescribe clomid or hcg because its illegal use or because they dont test most labs like shbg estrogen etc. yeah im def not going to get treatment from that because after research i know i will get worst with random protocols. i know my shbg is high since its always been. tumor might not need surgery but it seems to be nonfunctional. my endo does not believe in dhea. just testosterone once every 2 weeks. o and shes the best one and recommended by my neurosurgeon lol! im clueless i dont know what to do. i cant think straight or even talk straight. i have short term memory. my grandmother is depressed seing me too young and wasting my time because i dont get treatment. i explained to her about testosterone and she said” like any med, try it and if it doesnt work stop”… what? lol
my lh and fsh are both low probably secundary and my endo thinks i have cushing disease because acth is 47 while cortisol is 18. its going to be a long ride since they dont prescribe hcg clomid or dhea + my igf1 is low

Normal ranges and healthy ranges are two different things, the endocrine society classifies low testosterone below 300.

Managed healthcare doesn’t have the expertise to help you, you must go private.

but can private actually balance hormone like low IGF-1? as far as you know, do they have patients with adenomas? If i mention this they probably won’t accept me.

Yes.

Yes.

That would depend on the particular case. Looking at your labs, one might want an MRI. Then what do you do? Tell them you already had one? Now they likely will not treat you since you were not honest up front.

Tell them ur situation. If they don’t want you as a patient for reason xyx . Fuck em. Not worth your time. And they will not care for you the right way.
It’s like they want all easy cases.

before you go private you can still see what treatment they give you. As long as you get the script you can decide on frequency and dosage ( if they prescribe enough). Igf may go up on trt.

Your case seems more complicated. 1 step at a time.

thanks guys! good read. just a follow up. so i went to an endo (urgent referral) and she straight up told me my lh and fsh are normal low and that the problem is not up there (pituitary gland) and it must be somewhere else because even thought i have a tumor, prolactin acth and fsh are normal (fsh is low) and that the tumor is just sitting there so she wants to check my testicles because it cant be from up there. o and thatmy igf1 is low because of my age and i stopped growing… what? i ask her “if my lh and fsh is low (she said they were normal) then how am i primary? isnt primary suppost to be higher?” yeah she said” if both are a bit higher than range then yes”. all in all, to her my problem is from down there and not pituitary gland. she thinks i dont have low igf1 and i asked her for hcg and she thought that was growth hormone. i asked how can i freeze sperm if you only offer testosterone (1every two weeks) and she was clueless until i said “hcg” and explained her everything. lastly i asked if she measures e2 and said no. then i asked but why if i get gyno or acne, how do you deal with that? and she was clueless LOL she said well you got to deal with it. ffs.

also @charlie12 i noticed that even if i read up about my issues and learn a lot. doctors wont keep up with the info. i cant control it and they wont offer the right diagnose or treatment

I’m going to go with my original statement. You can change to a different doctor but I doubt it’ll be in any different experience because they all follow the same set of guidelines and the only thing written is 200 mg once every two weeks.

A private practice doctors doesn’t have a ball and chain wrapped around their ankle, they can do what needs to be done like testing for and managing estrogen.

1 Like

@systemlord

thanks system! im guessing you went nuts finding the doctor before getting into private?

I’ve learned from this experience and will never look at a sick care doctor the same way again, not when they’re taught to ignore the patient and treat the reference range.

Where do you live?

A good Dr will listen to your research and not tell you to stop reading.
You can advocate for yourself and get treatment based on what you desire too. Dr supposed to take what you think in account. Even asking for additional tests. You may need to be firm.

Hormones are very complicated. Let’s see how they went to treat you. But be your own advocate and ask questions. Write them down. I am saying this cause I see your age and you may not have to much experience with this.

I go through my insurance and had an Endocrinologist prescribe trt but I switched to a urologist who knows more about it. But sometimes I feel i know more. Even though I got prescribed trt by an Endo I still question his main motive was it because I really needed it or did he want to get me on gel so he can make money. He had offered me all the options which was nice but politely pushed gels.

Make a plan and 1 step at a time. Investigation takes time.

I ask where you live in case we have local dr recommendation. Unless you told us already.

I research everything and read my own labs. Am a little anal with this. It stems from the birth of my twin boys. If me and my wife would have listened to the Dr my sons would not have been born. I flew my wife from NY to Tampa to get surgery on her placenta to “fix” the problem.

I now research every Dr and switch Drs without hesitation. I am in charge of my health.

@charlie12
thanks for replying charlie! good read. im in cali and literally visited most endos recommended around. im willing, like i said, to travel to solve my situation. even if its mayo clinics in boston. health first.

not saying im not considering private because i’m but private probably wont figure out whats going on and just offer trt. what if i need a stim test?

for sure i always ask “do you test estrogen?” i asked this and asked what if i get acne or gyno and she said you have to deal with it LOL.

im also looking up info in excel male forum. theres a lot of questions to ask when doing first consultation.

I agree. Private is last resort.

UPDATE:

got recent labs.

shbg: 56 range 10-57

dehydrorpiandrosterone, S (DHEA): 6.5 ng/ml
reference value <13

yesterdays doc said the problem is not in the pituitary. lol. i read a lot about igf1 and its created in the pituitary but produced in the liver. also fasting increases this and eating less sugar or carbs. but if i reduce carbs then my shbg will be higher? i take around 400 grams.

i also don’t understand if my IGF-1 is low then why is my HGH is normal? does this mean im insulin resistant or something? i need to investigate more about this. every time i mention low igf1 to ANYONE even docs they say”but you are tall dont worry about it” lol

my mental health sucks right now. cant think, concentrate or make proper decision. probably because of low igf1 and dhea.

i read stress and cortisol decreases both but my cortisol is at 18 tested at 7 am

this could also explain the constant weight loss

also i forgot to mention that the doc said my t3 might be low because of other hormones

@charlie12

for sure. thanks mate! also updated with new labs!

anyone else can relate with my labs? dhea is at 6.5 :frowning:

hello guys! so i went to a psychiatrist and since the start from all my symptoms he offered me cytomel for thyroid. he said my symptoms are thyroid issues even with normal tsh. the only thing low i see is t3. he also wanted to do wellbutrin and another one that i forgot for ocd.

Today I went to my neuro appointment for an update on my microadenoma and he mentioned my hormone imbalance is not because of the adenoma and won’t do anything about it (2.6x3.3 is the size if I’m correct which is very little).

now to labs:
testosterone Total: 2.87 ng/dl reference 5.05-19.8
testosterone free: 191 ng/dl reference 240-950
Estradiol: 5
tsh 1.81
t4 free 1.05 from .93-1.70
t3 free 1.87 from 2.00 4.40
SHBG : 56.
LH: 2.3 FROM 1.70-8.60
FSH:1.48 FROM 1.50-12.40
HUMAN GROWTH HORMONE NG/ML 1.169 MALE: .014-1.406
IGF-1 NG/ML 87,50 FROM 116.00-358.00
prolactin: 13 from 4.0-15

Dhea-S:6 low

what next? :confused: stim test?

Hey man. How you doing?
Did neuro day of the growth is pressing against anything?

I don’t remember, you already knew you had a microadenom?

Dude you need trt. You can start with that see if it raises your igf.
You lh and fsh low. You probably have secondary hypogonadism. Of course the microadenoma can cause hormone issues.

You can try clomid or novaldex first. You can confirm if you get a respond from the pituitary if LH and Fsh go up.

Also if the neuro feels the microadenoma is not causing any major issues theres basically nothing they can do. Endo or urologist would help with hormones. They should be more willing to treat since you have a confirmed microadenoma