Thread: Sickness Unknown
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05-08-2010, 08:01 AM #1New Member
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Sickness Unknown
Greetings guys and gals,
first off I'm not sure if this belongs to this forum, if not then I apologize!
My symptoms
I've been suffering from extreme fatigue/tiredness and hyposexuality (poor libido) for several years.
The strangest thing with my condition is that I do have an average of 1-3 months per year where I feel close to "normal" - which in my eyes is: 8h sleep is enough, I feel energetic, alert and focused, and I have a sexual desire (feeling the urge to masturbate or have intercourse at least once a day if possible).
When I'm in the bad period (like now), I can sleep for how long I want (16h is no problem). But I try to keep it to 8-9h, because it doesn't matter - the sleep doesn't make me less tired. I'm completely unfocused and feel drugged the time that I'm awake and yawn pretty much throughout the whole day.
Even on weekends, I do not have the energy to practise my hobbies, which mostly are hanging out with my friends or family, working out, going out and surfing the web. My libido is so poor that I only feel the need for sex maybe once a month. I do not have any problems getting an erection once a week if I try (girl or porn), but I don't feel the sexual desire and it often takes me a very long time to cum - and when I do, it doesn't feel any great at all (a weird feeling, almost uncomfortable).
My lifestyle
* I'm 24 year old male, 6 feet tall and weigh 160 pounds (athletic build).
* I'm happy with my life - I've great friends and a fantastic family and I enjoy my job (no depressions whatsoever).
* I work out lightly and jog every other day.
* I eat very healthy, mostly proteins from meat, unsaturated fat, a lot of vegetables and not so much carbs.
* I eat the following supplements: B5, B6, B12, C, D3, E, Iron, Calcium, Magnesium, Omega-3 and Zink.
My Health Center's Investigation
* I've been to a psychologist, who stated that I do not suffer from any type of depression and that I needed to get my blood tested and my sleep investigated. He believed my symptoms and did not suspect me for being hypochonriac (I asked him honestly).
* I've taken 4 different blood samples, first to check for diabetes, second time to check my hormonal balance (testosteron, estrogen, etc), third time to check my blood values, vitamins and minerals, and fourth time to check my thyorid (T3, T4 and Cortisol).
* They investigated my sleep briefly (with a machine over a night) at the ear clinic, and I had no apnea or lack of deep sleep.
* My resting heart rate is good (60-65), I however have this intervals where the heart stops for 1-2 seconds and then I get one heavy heartbeat, almost like a double beat. But I've made a EKG test, which returned good so I trust that.
* The last step is to see a neurologist soon, which my doctor told me is probably not going to be able to help me.
I've several times throughout the years of suffering suspected myself for having hypochondria, even though my symptoms are so extremely strong. I've let things go and tried to live my life, believing that I'm healthy. But my symptoms won't disappear. I'm in the worst period of my life right now, and I've been taking a lot of caffeine to be able to work half time.
I turn desperately to this forum in hope to find someone who has suffered from the same type of symptoms and gotten treated, or to get some tips/advice from experienced people - I've searched this forum a lot lately, and some of you are really informative I must say.
I cannot build a relationship with a woman if I don't even have a sexual desire, and I cannot work if I cannot stay awake or concentrate.
This might not sound like a huge problem for some of you, but think about it - life is about survival and replication, and if those things are taken away from you, what is left to live for?Last edited by Hyposomnia; 05-08-2010 at 08:15 AM.
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05-08-2010, 05:03 PM #2New Member
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Welcome Hypo .. whether or not its the right forum I'm sure you can get some feedback here.
You posted a lot of symptoms and blood work, but didn't post any results. Those symptoms could be a consequence of several different conditions. Proper diagnosis will require more information.
Most people here on this forum have experience with low testosterone problems and treatment options. Any chance you can post your labs? Mainly the following:
- Total Testosterone
- Free Testosterone
- Estrogen
- Thyroid Hormones T3/T4/TSH
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05-09-2010, 06:08 AM #3New Member
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[ Wrong post ]
Last edited by TheOneWithout; 05-09-2010 at 06:20 AM.
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05-09-2010, 06:13 AM #4New Member
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Hi Teneprous and thank you!
My test for testosterone and estrogen was a while back and I've lost the papers, and so have my doctor (even though they have database for that ). I remember that they took total only and not free.
My recent values
- TSH: 1.8 mIU/L
- T3: 4.2 pmol
- T4: 17 pmol
- Cortisol: 538 (?unit?)
Other standard values like hemoglobine, leukocytes, lymfocytes, trombocytes were all "good" according to my doctor.
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05-09-2010, 06:58 PM #5Associate Member
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I would get the test checked again with all of the other standard checks that go along with it.
Ask your doc to do it free since he lost the results. hahaha like that would happen.
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05-09-2010, 09:47 PM #6New Member
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Agree with Tubs .. we really need to see your TT and free T levels to get some idea. Frankly I don't know much about thyroid numbers, since I don't have an issue myself other than possible subclinical hypothyroid and your TSH looks fine. Cortisol is probably nmol/L and was fine as long as it was done in the morning, according to what I'm reading.
Around here, the big benchmark numbers are total and free testosterone , estradiol, and to some extent your signal hormones LH and FSH.
These tests are usually back in 2 or 3 days so you can just go run your labs anywhere if your doc lost the results.
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05-10-2010, 07:11 AM #7New Member
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So Testosteron, Estradiol, LH and FSH all 'free'?
Is blood test trustworthy for this or should it be done with saliva test? Because they don't offer saliva test where I live .
And also I was thinking, high Prolactin level? Or should that cause low Testosteron? They didn't want to check that last time I asked so.
Hmm how do you know that is the reason? And why are you linking HGH to some random site? Spam?YOU ARE CORRECT HE IS A SPAMMER THANKS!!! *admin*Last edited by Hyposomnia; 05-10-2010 at 07:16 AM.
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05-10-2010, 11:04 AM #8
I can't speak for the other guy and I don't have any personal exp with HGH [yet] however, I would agree, it sounds like low testosterone . One thing to be careful of, is your "total testosternoe" numbers may fall in the *normal* levels, i.e. [anything from 300-600] and still be considered, "normal" however, even at those levels you can still have Low T symptoms which is what really matters. When it comes to Total T, you can go as high as 1200 and still be considered normal.
Same thing with thyroid. In recent years, the leading institutes who determine "normal" levels have changed their ratings. At one time anything below 5 was normal. Now symptoms are more heavily weighted that mere numbers. So be sure to tell this to your doctor about your symptoms, even if he says,"your numbers are normal." Truth is, everyone is different, what's normal for you may not be normal for the next guy.
It's good you're asking these questions at your age. I wish I had done the same instead of waiting nearly 20 years to begin addressing the issue. I know what you're feeling about work and relationships because I've gone thorough the same and it aint easy. Hang in there and keep doing what you're doing.
I would also check this site for the ADAMS questionnaire. It's what really helped me better understand the symptoms associated with LowT. There were a few I wasn't aware of. You may still be in the early stages, but at 42, I got a 10 out of 10 on the questionnaire, I'm hoping you don't for your sake.Last edited by forrest_and_trees; 05-10-2010 at 11:22 AM.
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05-10-2010, 03:07 PM #9New Member
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You can go with a blood test. Get total testosterone , free testosterone, estradiol, LH, FSH. You can get prolactin also; my endo ran prolactin at the very beginning, although I'm not entirely clear on why. Something about a possible "prolactin tumor" which he ruled out early on.
Total testosteorne, free testosterone, estradiol, LH and FSH are the benchmarks for male HRT. You need these numbers to get started with anything.
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I agree with above. You could test low, but still be in range. I would get my T levels tested again and post your results along with the range. Good luck.
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05-10-2010, 08:28 PM #11
Honestly i would get a full body scan. CAT scan and everything else. The pituitary is the hormone regulator. If you are up and down it could be some imbalance from it. For instance you could test fine with blood levels one day and down in another... I don't want to freak you out but when your are going up and down in feeling there might be something extra in your head that shouldn't be there.
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05-11-2010, 07:10 AM #12New Member
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Thank you for sharing!
That is what I am afraid of, to sleep away my life and wake up at 60 with the real diagnosis.
I got 9/10 on that test by the way.
Noted! I will try to get a remittance to the endocrinologist if the neurologist cannot help me.
Is it the neurologist that I should ask for the full body scan?
Its ok, I appreciate your honest thoughts!
Thank you guys for your help so far, it means a lot to me!
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05-11-2010, 08:54 PM #13
If you got 9 out of 10 you're already in deep, I'd take the printed results of the ADAMS test back to your doctor, show it to him and insist he start you on TRT. If he refuses, it high time you *seriously* reconsider a new doc.
Trust me when I say, *EVERYTHING* [with few exception] that mattered to me, I've lost over the past 20 years due directly or indirectly to being afflicted with LowT. Relationships, friends, jobs, health, the ability to do all the things I love, my belongings, self respect, self-esteem, you name it... I've lost it because of LowT. And I was riding pretty high for a while, I had it all going for me. Trust me when I say, I know first had what it means when they say, "the bigger they are, the harder they fall". The worst part was, it wasn't like I was some big prick who took it all for granted. I valued every minute of my life style and never once let my belongings or stature define who I was. All them same it still hurt's like a Son-of-a-Bitch when you loose it ALL!!! You're young, you have plenty of time to "ride the wave" and make your way in life. Don't let LowT prevent you from being happy. I can say with almost certainty, that had I not discovered my LowT in time, I would have been dead by the time I was 45. At least now I have a fighting chance.
It has been a horrible ride I wouldn't wish on my worst enemy, but I'm just glad there's hope now.
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05-12-2010, 07:25 AM #14New Member
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Sorry to hear about all the sh*t you've been through! But I'm glad that you're better and on your way up!
Lets say I do some new tests and all values are "normal", should I still insist on a TRT? And if they refuse, can I get these kind of TRT-stuff on the street like other steroids ? I'm not saying that I'm going straight out to get some juice now, but if my doctors say no, I could maybe try some to see if it helps .
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05-12-2010, 03:01 PM #15
I would have to say, that depends. If the so called "normal" numbers are marginal, then yes, I'd refer back to the symptoms and insist. If they still refuse, move on to the next doctor. I'd try a new doctor before going rouge. Yes there are lots of good insightful people here but there's no substitute for a good physician mainly because you'll want to continue with blood tests throughout your treatment and doing that on your own can be sketchy at best. There may be other people here who disagree with me but I would choose a doctor over black-market [or even gray-market] internet any day.
Last edited by forrest_and_trees; 05-12-2010 at 03:03 PM.
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05-26-2010, 02:17 PM #16New Member
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Just wanted to update my journey to wealth here...
I saw the neurologist today and he ran the same test like my last doctor did (balance, feel, view etc). But he also wanted to check my blood value if it matches the one that narcoleptic people has. I asked him to remit me to an endocrinologist if my results were normal. He told me that we could check my hormones at the same time and IF the these results were bad, I would get to see an endocrinologist.
I checked the paper to see what he checked, and I remember these:
Testosterone
SHBG
Prolactin
(He did not check estradiol)
I asked to check free testosterone also, but they apparantly only check this if my SHBG was to show very low or very high.
If they don't find anything unusual, can I still demand to get stimulant drugs at least (like modafinil) to make it through the day? Not that it is going to solve my libido problem, but maybe there are drugs for that as well?
I really hope they do find something, I want to move on with my life so badly
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05-26-2010, 05:24 PM #17
They can check what ever you want them to check. You need to reverse the roles a bit, though, and TELL them what you're going to have checked. Insist on it. If he won't check free test and E2, challenge him to give you a good explanation for why not, and regardless of his rationale there is no good not to test for those things. Seriously -- it's no skin off his back and there's zero danger or risk to you, so WTF?
Please post up with results when you get them. 24 y/o is unusually young to have low test, but I'm hoping you get to the bottom of what's going on soon.
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06-02-2010, 07:31 AM #18New Member
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I just got a call from the psychiatry: "We'd like to meet you next week if you're available". I asked them about my recent tests, but they didn't know anything. This is just laughable, as soon as they don't find anything marginally, they think that you're insane , and don't tell me the results that I asked for (copy)... Well I guess a lot people are crazy and therefore the doctors draw this type of conclusions. I know for a fact that I had a happy childhood and I am very happy today except for my extreme fatigue/sleepyness and low libido.
I hope that the psychiatry can supply me with some great drugs at least so I can live!
I'll be back soon for more, thanks for all support guys!
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06-02-2010, 02:22 PM #19
Wow... that's kind of a drag and frankly a bit disconcerting. I suppose if you look at chickens all day long... *everything* starts to look like chicken.
If it were me, I'd start making movements in the opposite direction and then run as fast as you can as soon as you're out of reach of the nets. Heir Dok-tor Freud doesn't sound like the best route for you. Did you show him the results of the ADAMs questionnaire? It's looking like these guys are making it out to be more than it is.. sometimes a cigar is just a cigar; no need for the Rorschach charts.
I'd avoid any stimulants, or anti depressants or even ED meds too for that matter. All they do is address the symptoms, not the cause.
As for an endocrinologist, unless your insurance will cover it, you can get what you need from any decent GP. I looked into endocrinologists too, but they seem to be way over paid. I say keep it simple, find a good General Practitioner, show him [or her] the ADAMs results, *TELL* them you *NEED* a Total Testosterone test and while your at it, throw in your Estorgen levels and TSH levels. It seems pretty obvious what your problem is, And yes, even at your age, while less common, it's likely. That's when mine started.
Lastly, do not walk out of the office until they hand you a copy of your test results.Last edited by forrest_and_trees; 06-02-2010 at 02:25 PM.
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06-02-2010, 02:30 PM #20
You need to get a copy of your blood work and check out the values, yourself. I'm assuming you're in the US -- if so, then you have a legal right to those results. Contact your docs office to ask how you can get a copy and don't take "no" for an answer.
I'd hold off on any psych referral at the moment. There may be more to the story, but you have a right to know why you're being referred for a psych appointment. I'm guessing they want to schedule an "assessment". If so, you can ask for the reason for the referral. If they won't give an explanation and continue to be evasive, tell them to eat a bag of dicks. It may be time to go ahead and start looking for a 2nd opinion.
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06-02-2010, 04:45 PM #21New Member
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I will surely demand a copy!
Hahaha that was damn funny
Yeah I must stand up for myself, but its hard to convince them that I'm not a hypochondriac since they cannot "find" anything. I will meet a doc at the psychiatry on monday and ask them what the hell I am doing there.
What surprised me most at my last visit at the neurologist was that he told me that if my TSH, T3, T4 and Cortisol was normal, I could impossibly be suffering from low testosterone - is this true? Also he told me that lack of testosterone could not cause fatigue/sleepyness all by itself - I'm pretty sure the hell it can according to thousands of people on this forum and official reports on the net. Also shouldn't a blood test for testosterone be taken in the morning on an empty stomach? He didn't even ask if I had eaten, he just told the nurses to do it in the middle of the day.
Feels like I've been dealing with amateurs for a long time now. A few times when I went to see a doc, he googled after symptoms e t c haha, that is just embarrassing...
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06-02-2010, 05:25 PM #22
Never accept "normal" as an answer to your blood level on anything. Ask for the specific numeric value and the range for that value. And, of course, always insist on a copy of your records.
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06-02-2010, 06:37 PM #23
****WARNING - LONG POST****
Like Epic Ed said, do not accept "Normal"! That's why you need the numbers. ***I can't stress hard enough how important it is you DO YOUR HOMEWORK!*** Asking questions here on this site is a good *start* but you have to go further than "hey doc, some guys on line told me". That's where research and documentation comes into play. You need to document your findings and **HAND** them to your physician so they can educate themselves. Be sure to provide reference-able information. I wasn't kidding when I said to print the results of your ADAMs questionnaire.
Go to the following sites, READ THEM THROUGHLY and then print them out, TAKE THEM WITH YOU to your doctor, HAND THEM TO HIM. I'd highlight the key points before hand. That's what I had to do. My Doc originally said the same thing, "TSH numbers are normal". After researching my symptoms on line, I kept coming back to the same thing... It HAD to be Hypothyroidism! Even though my doc said my numbers were normal. So I finally went back and asked what they were, it turns out I was at 3.30 and if you read the links below, you'll see were that's no longer "normal". So I gave him the printed documentation, and said, "Can we at least put me on some Thyroid med and give it a try? It can't hurt can it?" He agreed and now he's fully in agreement that I DO have Clinical Hypothyroidism! I just e-mailed him a bunch of documents today about treating Hypothyroidism with T3, which is the next step in resolving my problem. I only found out about T3 by doing the research online. The info is out there, YOU just have to do the work and give it to your doctor!!
Link 1:
Major Revision Possible in Guidelines for Diagnosing and Treating Hypothyroidism
Link2:
Diagnosing and Treating Hypothyroidism
Link3:
Diagnosing Thyroid Conditions
Looks like a typo, not sure what you're saying here. Is what true?
That's why I've been saying you need BOTH Total Testosterone *AND* TSH tests because it sounds like you have *BOTH* Low T AND Hypothyroidism. I too am dealing with both right now and the treatment is working. Now if I can get my doc to add T3 to my regiment, I think I"ll finally have it all under control.
YES... you should be tested in the morning. NO you it doesn't have to be on an empty stomach.
We deify our doctors expecting them to know everything, truth is, there is SO much to know, they can't possibly know it all. It's frustrating but the truth is, you have to take matters into your own hands and *make it happen!*
Good luck!Last edited by forrest_and_trees; 06-02-2010 at 09:05 PM.
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06-07-2010, 11:54 AM #24New Member
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And so I got them finally
TSH: 1.8 (0.4 - 4.0)
FT4: 17 (12 - 22)
FT3: 4.2 (3.1 - 7.9)
Cortisol: 538 (? - ?)
hCG : 3.8 (2.0 - 9.0)
Prolactin: 15 (4 - 24)
Testosterone : 15 (6 - 35)
SHBG: 49 (13 - 71)
The psychologist also wondered why they sent me there, she couldn't find anything that pointed to psychological problems... She told me that she will send me back to my GP to further investigate my fatigue/sleepiness and loss of libido.
That's all for now I guess
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06-07-2010, 01:29 PM #25
Huh -- looks like they didn't test for total testosterone . The numbers you have are for "free" testosterone, which is one measure of how your T levels are doing. The other range is also important -- the "total" testosterone. Check out this link for more details about your blood work value levels:
Interpretation of Free Testosterone, Estrogen, and Total Testosterone Blood Tests
They have an hCG value listed? Are you sure about that, because hCG is a peptide hormone that only naturally occurs in women during pregnancy. It is administered to men because it closely mimics FH and will help keep your balls from shutting down sperm production when you're on testosterone. Men do not have any naturally occurring hCG in their blood stream.
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06-07-2010, 02:23 PM #26New Member
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I have no clue, but my papers says hCG :/
They obviously won't check my total value here where I live (Europe).
I don't know what to do anymore.
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06-10-2010, 08:25 AM #27New Member
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Ok so I read the post, and as I understand it, a test of the free testosterone is the most trustworthy right?
However, I don't see why they didn't check my estradiol value, since too much can cause similiar symptoms like testosterone deficiency.
And about hCG , it was a misread by me (I really have a hard time concentrating as I mentioned), it was for LH.
My FSH was also 2.9 (1.0 - 9.0).
Should I demand to meet a real endocrinologist or to first check my estrogen and total testosterone levels ?
Also any of these relevant to check as well: DHT, DHEA, GH, IGF-1 ?Last edited by Hyposomnia; 06-10-2010 at 08:38 AM.
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06-13-2010, 08:35 AM #28New Member
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Today I woke up after only 7h sleep and felt not so tired. I also had a strong boner and felt extremely horny for the first time in MONTHS. I think it has to do with summer. I heard that the body produce more sex hormones during the summer/warmer season, is this true?
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06-13-2010, 10:55 AM #29
i think it may be your diet... intake of water etc...
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06-13-2010, 12:02 PM #30
I really don't have any insight about your blood work, but I'm wondering if you might have a vitamin D deficiency? Look up the symptoms of that problem and see if it applies to your situation.
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06-13-2010, 05:21 PM #31New Member
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06-13-2010, 05:27 PM #32New Member
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06-14-2010, 05:57 PM #33New Member
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I found this today: http://jcem.endojournals.org/cgi/con...ract/88/7/3099
We have really cold winters here and pretty hot summers.
How would it work if I needed TRT duing 80% of the year?
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06-28-2010, 07:28 AM #34New Member
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Bump guys!
I got a letter from my neurologist today, saying I might suffer from narkolepsy. I will go back and do a MSLT soon. Even if I had that, I don't see how it would cause the bad libido?
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06-28-2010, 09:29 AM #35
I would check:
IGF-1
DHEA --- and any more adrenal test---
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07-05-2010, 06:17 PM #36Banned
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Go to an environmental medicine doctor and get checked for candida. Go on a no carb diet for 3 months and see if things change.
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07-05-2010, 06:47 PM #37New Member
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07-06-2010, 04:15 AM #38
Doesnt sound at all like narkolepsy. I know at least one person with this. He/We drove though (yes through) a telephone poll due to his narkolepsy.....
I would still try to get to the Endo to have all your thyroid levels checked as well as your free test.
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07-06-2010, 06:49 AM #39
Run from our NEUROLOGIST NOW!!!!!
Where are you from mate?
It look like your test range is nmol/L so it is total tetsosterone not free like the americans are thinking (they have diffeerent labr anges to us)..
Our lab ranges for total tetssoterone in austrlaia are around 8-32nmol/L
It could be anything, did you know you can have hypothyroidism and sitll have normal lab values? The hormones pool in the blood because they are not gettign access to cells ebcause of adrenal issues..
Serum morning cortisol simply shows what it is in the morning, we need to see what it is doing during the whole day and ight this is why 4x saliva testing is so valuble! You can not make a diagnosis of 1 single draw...
People have been treated for high cortisol and almost died because they have high morning cortisol then form adrenal fatique they have low cortisol afternoon night time... Leading to fatique ect. Though it could be high cortisol constantly leading to impaired GH release... Then you get stuck in a feedback loop of icnreased cortisol to meet demands of lowered growth hormone because cortisol stimulated repair from whiteblood cells due to inflamation.
It could be manymany things, a mineral imbalance, vitmain defficiency. Bad absorbtion of certain nutrients, food intolerance.. Slight neurotransmitter imbalance.
Also they tested for hCG ? I think some tumours give off hCG but im not sure of any other reason they would test for this..
We need ot know youe estradiol e2... Look for an ultra sensetive urine e2 test on line from a private lab facility... shouldnt cost much then you will have an answer.. Do this along with the 4x saliva adrenal profile.Last edited by n00bs; 07-06-2010 at 06:56 AM.
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