seekhelp
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posted
I have been taking Androgel 1.62% - 2 squirts per day for 2 months. My total T was in the 160-180 range prior to taking the meds. I'm very disappointed that after two months of solid supplementation, my total T still is only mid 200s. How the hell is this possible?
It seems like my body just doesn't accept testosterone. I feel zero improvement from it at all. Very depressing. I thought my number would be 500-700 after two months of treatment. I'm about to call it quits now. Why pay $$$$ for something that as usual doesn't help me?
Is it safe to assume that if my number stayed this low, my body doesn't absorb it? I'm in my 30s and male. I should be much, much higher.
Nothing seems to work as expected for me. My endocrinologist told me I'd feel like a 'million bucks' on it. Yeah, right? I went through all the blood testing before and I don't have primary hypogonadism. My SHBG number is never high either so it shows my body isn't even retaining the non-active version of T. So odd.
I'm not worried about not being able to have children anymore. I feel so ill day to day it's not a possibility. I can't even drive myself anymore, work, or function. Who cares, right?
[ 03-30-2012, 12:30 PM: Message edited by: seekhelp ]
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TF
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Seekhelp, my husband had the same reaction to Androgel. He does not have lyme and never did.
His testosterone is too low for his age also, although he is considerably older than you.
When the 2 squirts per day didn't do much for him, the doc raised him to 4 squirts per day.
He had a few days when that amount made a difference, but then it all went back to the way it was--low energy, no sex drive, etc.
Tested him again and he was still low on testosterone. Doc then said he wasn't absorbing it and he would have to go to injections.
Instead, he went to a urologist recommended by another doctor. Urologist put hubby on Testim. He said that each testosterone product is a little different. If you don't absorb Androgel, you may absorb Testim. Sure enough, Testim is working for him.
First, he was on one tube per day. Eventually, it stopped working, so he was raised to 2 tubes per day. That worked so well that his testosterone went into the 600s. He was too revved up. He cut back to 1 1/2 tubes per day.
Eventually, he needed to go back up to 2 tubes per day, and that is where he has remained now for months and very, very happy with the result.
Without testosterone, he just sat in a chair and didn't do anything. Now, he is back to his old self, active, going out, bored again if there is nothing to do.
Evidently, when you find a product you can absorb, your body will make even less testosterone because it senses that it isn't needed. That happened in hubby's case. So, don't get alarmed about it if it happens to you. You just raise the dose a little to accommodate that adjustment that the body made.
If you get too much testosterone, you will certainly know it. The sex drive will be way too much. You can always lower it, then raise it again when the body compensates. You can find the level that is just right for you.
Hope Testim works for you. This stuff is all expensive, so we use our mail order prescription plan and get a 3 month supply for one copay. Not bad compared to what it costs at a pharmacy.
Continue working on getting that testosterone up to normal because it will affect mood, energy, ability to have muscle mass rather than fat, sex drive, and many, many more things. It can even lower blood sugar.
You must have a normal testosterone level. Don't give up, even if you have to go to injections.
Please let me know if Testim works for you. OK?
Posts: 9931 | From Maryland | Registered: Dec 2007
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seekhelp
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Thanks TF. I truly appreciate your efforts to help with situations.
Given I'm in my mid to late 30s, I think I have forgotten what normal is anymore. I have absolutely no sex drive at all. My ambition has been terrible compared to years ago. A part of me thinks this chronic illness has taken it's toll, which it certainly has on me. But, another aspect could be miserably low testosterone.
A part of me is scared of being on something forever such as this. It's also so expensive that if I lost my wife's insurance, I wonder how bad I would crash and burn if I was forced to stop taking it.
I admit I have reservations about my doctor as she is female. I'm not sexist at all and respect all good doctors, but my gut tells me she just doesn't get the male aspect as much as some other physicians may. Her lack of watching estrogen levels is an alarm bell to me. I think hormones are very, very complicated.
I will inquire about other options at my upcoming visit. I have a really hard time concentrating now. I feel like I'm in a constant fog. The endless muscle discomfort / tension is not helping (see other post today).
So at what point did your husband feel improvement from a blood level perspective? Did moving from 200 to 400 cause the improvement? 200 to 600?
It's a real catch 22 because I know if I could take off some weight, my numbers may improve. The issue is I feel so horrible day to day that any exercise is impossible. It's a chicken or the egg came first type of scenario.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I agree with TF. Try another brand. Hubby tried the androgel -- made him feel really bad. Don't remember his blood levels right now. He only took that for about a month because even with insurance it was sooo expensive.
His doc called and had testosterone compounded by Medhaus pharmacy. He can take that and has improved energy. But so far no improvement in sex drive. He probably needs to have his levels tested again and adjust the dose.
You could also try taking DHEA -- hubby has taken that for several years but unfortunately his liver does not convert it to the other hormones like it should.
I think the liver is involved in either converting or breaking down the testosterone -- so it is possible that if your liver is not functioning up to par that could be part of the problem.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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TF
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Seek, I doubt you will have to be on testosterone forever. I believe I have stated on this board many times that lyme took away all my estrogen, testosterone, etc.
When I got good lyme treatment, everything went back to normal.
I'm telling you guy, with a low testosterone you will be in a depression. This line of thinking is depression thinking: Don't try to fix it because if my wife loses her insurance....
Also, it was hard for my husband to concentrate and remember things when his testosterone was in the toilet. His memory and ability to think has now gone back to normal.
So, this can get rid of a lot of terrible symptoms for you. It makes no sense not to go after this relief.
My husband's testosterone jumped from about 240 to 600 when he went to 2 tubes of Testim per day. It was crazy. We thought Testim wasn't going to work for him either because one tube per day only worked for about a week and then he was back to 240-250 again. But, that all went away when we raised the dose. Wow! Ha, ha, ha is all I am going to say about 600 level.
His prior doctor said he wanted him in the 300 to 400 range. For your age, I think you need to be in at least 400 range. You play with the Testim dose to get yourself where you feel good, not too driven to have sex all the time, etc. Ha, ha, ha, I'm not kidding.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
dumb question...is this a steroid in the sense of the ones they want us lyme patients to avoid? thanks
Posts: 109 | From PA | Registered: Feb 2012
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TF
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posted
Nope. It is a natural hormone that the body needs and that is normally made by the body.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Seekhelp, What you are experiencing is the control loop that is designed into your body. It's called the HPTA (hypothalmus-pituitary-testicular axis). Here's how it works. Your hypothalmus senses how much T is in your blood. It then sends GnRH to the pituitary based on what it senses. Lower T means more GnRH and vice versa. GnRH causes the pituitary to make LH. LH causes the testicles to make T. The T made by the testicles then effect how much GnRH the hypothalmus makes and there is your control loop. Your problem is most likely that your hypothalmus is broken and thinks you have plenty of T when you don't. Add more T thru androgel will just mean less GnRH, less LH, and less T that your body will make naturally. This is not uncommon and it frustrates me when doctors prescribe this but don't know what they are doing. You need to adjust your dose every few weeks to a month until you get to the steady state T level you desire. As your body shuts down making it's own T you need to add more externally to make up for it.
But before you do that consider this too. I'm assuming your hypothalmus issue may be temporary due to lyme. You are in your 30's. I know you don't think about kids now but why rule them out and why possibly rule out going back to normal some day. By using external T your body is shutting down production of it's own T. Your testicles will become dormant since your LH will drop to near 0. As one poster said her ovaries shrunk, so will your testicles. They can eventually reduce to the size of a pea for some men. There is no guarantee they will come back when LH returns some day and even if they do they will not likely work as well as they do now. In my opinion a better solution for you is to use HCG (human chorionic gonadotropin) injections. You can self inject with an insulin needle several times a week. HCG mimics LH and will keep your testicles active. Your body will be making it's own T and your testicles remain viable for the day when you beat the lyme. It is possible you may also have to add external T to the mix to get your T high enough. That depends on how well your testes respond to the HCG. HCG has gotten expensive lately because women are convinced it helps them lose weight even though there is no evidence of that. But you can get it compounded too at a lower (much lower) cost.
You doctor should also be testing your total estrogen and estradiol levels as you suggested. These hormones can bind to the receptors in the hypothalmus and trick them into thinking they are T because they are so similar. High estrogen can be the cause of low T for this reason but even it's not there are other problems with it. You can develop gynomastia and there is also the theory that rising levels of estradiol as you age are the real cause of prostate cancer.
Let me know if you have any qestions. My wife asked me to post this on her log in and I am treated by Dr. Shippen who has patients from all around the world. Unfortunately it is very hard to find a doctor who knows what they are doing in this area.
Most importantly don't give up. You can improve dramatically from where you are now with the proper treatment.
Posts: 832 | From Somewhere | Registered: Nov 2010
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Seekhelp, another possible solution is to use clomid. Clomid will bind to the receptors in the hypothalmus and may cause GnRH to go up, which in turns ends up with higher T as described above. Clomid is usually the first try a doctor should make because it's a simple pill and maximizes the use of the body's own hormones. Again, be sure to check estradiol to make sure that is not too high and the root cause of why the hypothalmus is not working. It should not be above 30 and when T is low like yours is I would expect it to be below 20.
When using clomid you should stop the androgel for a week, then measure LH to see if it rises significantly while on clomid. T will not necessarily rise immediately because your testicles may be shut down due to no LH for so long. But, if LH rises significantly the testicles should respond within a month or so if they do not have any permanent damage.
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ktkdommer
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posted
I have two teenage boys with testosterone levels of their grandfather. Both are on natural hormone therapy. They just take it 3 days a week.
Had I known they had Lyme, I wonder what they could have been. My one son was a great soccer player but never had the testosterone overdrive to leave it all on the field. Now I know why.
I tell everyone with boys and Lyme to get their kid's testosterone tested. I asked for the test and am glad I did. It is hard to distinguish the symptoms from Lyme.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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ktkdommer, be aware that the exogenous testosterone will shut down their HPTA and their testicles and could leave them permanently infertile if done long enough. They will very likely be infertile while on the T and there is no guarantee the testes will regenerate years later. I strongnly suggest you look into treating them with either clomid or HCG to prevent this. It is also ok to treat with both clomid/hcg and testosterone at the same time if proper T levels cannot be restored with clomid or HCG alone. They definitely need to raise their T level but how you go about doing it is what is important, especially for someone that age.
Sorry I don't mean to be so blunt but these are the facts. This is the same problem body builders on anabolic steroids have. If your doctor does not agree, get another opinion.
Posts: 832 | From Somewhere | Registered: Nov 2010
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seekhelp
Frequent Contributor (5K+ posts)
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Terv, I just wanted to thank you for your detailed explanation. Very insightful. It sounds like a very delicate, confusing scenario to get this right! I can see why having the correct doctor is paramount.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Would you please send me a list of Drs in the NE who are recommended for testosterone, etc.
Thank you!
Bert
Posts: 254 | From Westchester, NY | Registered: Jun 2009
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seekhelp
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posted
Well, I had my follow-up appointment with my endocrinologist today. Extremely disappointing.
I asked her all kinds of questions and got shot down on everything.
I was told there is absolutely no reason to have my Estrodiol tested at all on a routine basis. I wanted the E2 sensitive test. I kept asking what if all my supplemented Testosterone is just being converted to estrogen. I'm over 100 lbs overweight. She said it very well could be, but it's no big deal. She said my body is absorbing the Androgel well if my total T went from 170 to 270 in two months.
Her suggested was to increase the Androgel to 4 squirts per day. She assured me there is no way my body will suppress my natural production of T. She said that only happens to people that have levels of 1,000+??? There is no testing of LH or FSH on any routine basis.
I asked about drugs to suppress estrogen production that could be taken along with T supplementation. I was told no way and those are too risky for ill people like myself.
Asked about HCG injections to take with the T supplementation - again told no way - no benefit.
She did agree to switch my script to Axiron. She said urologists have reported much higher jumps in total T with this than Androgel. It's a different delivery system, but still transdermal.
I was told to exercise / lose weight and my body may absorb it better. I feel so ill day to day. I can't exercise. I barely could drive to the office and that was less than two miles. I was totally lightheaded, fatigued, and my off-balance.
I don't know what the hell to do. I always feel like I'm in the Twilight Zone when seeing physicians. Is all the stuff I read and try to educate myself on BS or something? Why do I get looked at so funny when asking these questions?
Is upping the dose of Androgel or switching to another delivery method a train wreck waiting to happen? Maybe I'm wrong, but I feel like 50%+ of the clinical picture is being ignored. They talk about all these seminars they attend. If so, why are they so against the ideas/tests I proposed?
I've got many symptoms of high estrodial (hot flashes, fatigue, and more). Why would a doctor NOT want to know my level given my symptoms? It blows my mind.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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ktkdommer
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seekhelp- Sorry your appointment didn't go well. I do NOT know why a doc wouldn't run the test. It is your money for the lab work. What is the big deal.
Everything about Lyme treatment is a battle. I feel so bad for the really sick people who aren't well enough to fight for what they need. I feel bad that you can't get what seems so simple and would help with diagnosis and treatment.
Time for a new doctor?
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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TF
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When you want a specialist to do something that has not become accepted mainstream testing or treatment, you have to call around and find one that will do it.
I had to do that when I needed my husband tested for hypoglycemia 30 years ago. He was falling asleep at the wheel driving home from work. So, this was a serious problem.
The first doc I took him to didn't want to hear it and would not order anything but a regular blood glucose test (even though when I called, I was told he treated hypoglycemia). That appointment was a waste of our time and caused a lot of anger as, after hearing his symptoms, the doc said my husband needed counseling. He actually called me into his office separately to tell this to me!
So, I called a well respected medical center, asked to speak to an endo's offce, and told the receptionist that I wanted to know if the doc treated hypoglycemia. I was told she did. I said I also needed to know if the doctor would order the 5 hour glucose tolerance test to see if my husband had hypoglycemia at our first appointment. She checked with the doctor and said, "Yes, she will order it."
I made it very clear that that was the only reason for the appointment and that I would only keep it if the doc would have the test performed while we were there. Was told she would, and that hubby had to be fasting when he came. (That instruction was a good sign.)
I said, "That will be hard on him, so I will have to drive." The lady said, "Yes, if he is hypoglycemic, it will be hard on him." (That statement told me the office definitely had hypoglycemic patients and knew about the problem.)
Things like that made me feel like we had a great chance of us getting what we wanted. And, we did. First the doctor interviewed my husband about the symptoms and then sent him to the lab.
He flunked the test and it had to be stopped in the middle to revive him. Then, we went back to the doctor's office and she said (my favorite words), "You have a very smart wife. Listen to your wife." She had us meet with a nutritionist to discuss how to handle the problem.
All that to say that when you call around, you do enough probing and describing what you want until you are sure that you have a doctor that will do/order the test you want. You can ask "Does he order estradiol tests for men in cases in which they have signs of high estradiol? Does he prescribe HCG injections in conjunction with testosterone supplementation when testosterone is 170 and the man is in his 30s? Does he do X? Does he believe in Y? etc etc"
If the person doesn't know, ask them to check. You will wait for the answer. Let the person ask the staff in the know.
Make it clear that you only want the appointment if he is willing to do the tests you want and if he will prescribe HCG if he prescribes testosterone. State that you don't want an appointment with a doctor who does not believe in the things you are asking about, so you have to be very clear that he is a doctor that does these things.
Ask if he has a number of patients on this therapy. Ask everything you need to to feel confident that this doctor believes in these things.
This has helped us over the years. This way, I get what I want. It won't be hit or miss.
Hypoglycemia was controversial 30 years ago. May still be. Sounds like what you are wanting is also.
In that case, local docs may not do what you want. You may have to go to a large medical center that is known for using the latest treatments and testing methods.
Don't give up after just one try. Just hone the art of doctor selection.
Posts: 9931 | From Maryland | Registered: Dec 2007
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seekhelp
Frequent Contributor (5K+ posts)
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posted
TF, very good points as always. I have not found it easy to interview doctor's via their staff as many staff members seem clueless. They don't know or won't divulge a physician's beliefs. However, the good ones probably would.
I know of one in my state, but of course he doesn't accept insurance and has a $500 first appointment fee. However, I know your thoughts on in vs. out-of-network docs. You have said often the good doctors don't accept insurance for a reason. I wish so bad I could afford to pay all their fees. Sometimes one can't afford not to.
I'm glad to hear your husband got good advice from a smart person!
I guess it's hard to know how important this testosterone issue is because I have never had normal levels. My current endo told me T may not help me feel better. The truth is she doesn't reflect a caring attitude and also said no woman should ever be taking hormones. She said that's a thing of the past. I'm a male of course, but hearing that really threw me for a loop!
I'm going to take a wild guess and say she doesn't know what it's like to suffer with poor health. I may be wrong, but.....
I personally didn't think an Estradiol test was that controversial!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp, your doctor is not competent on this subject and should not be giving advice on a something she clearly knows nothing about.
Google "androgel fertility" and see what you find. Actually, tell your doctor to google that. This doctor doesn't even know the basics of the HPTA and has no business treating anyone on this. The fact is most endos specialize in either diabetes or thyroid issues. Now you would think they would know the basics of sex hormones but most don't. Another good search is "androgel testicular atrophy". Have your doctor try that one and she will read how even androgel says testicular atrophy is a side effect of their drug.
I think TF's suggestions are good for finding a doctor. If your insurance would cover it you would probably have more success with fertility doctors even though you are seeing them for low T.
By the way, the enzyme that converts T into estrogen is called aromatase. It comes from fat cells. Anyone 100 lbs overweight is definitely going to have more conversion of T to estrogen due to the extra fat. You are experiencing symptoms of high estrogen.
I wish I had other doctors to tell you about closer to you that would take insurance but I don't. Dr. James Biddle in Asheville, NC might take insurance...I don't know. But I have heard good things about him too. Also very far away from you. You could also try anti aging or "integrative" doctors. Again, I don't know if any will take insurance.
Edit: Had to edit my original post to tone it down. I get really annoyed about doctors who will not tell you when they don't know something but instead give you bad advice.
[ 03-30-2012, 10:09 PM: Message edited by: terv ]
Posts: 832 | From Somewhere | Registered: Nov 2010
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seekhelp, I forgot to also say that even the American Association of Clinical Endocrinologists Guideline for Treatment of Hypogonadism (low T) states to use HCG when fertility is desired. You can search for HCG in the document located here. On page 449 it discusses using HCG in adult males when fertility is a concern. On page 551 it discusses using HCG for men during puberty. I mention this for Kari.
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