Lack of mental focus

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XXY47

Member
I'm not sure what to do, I do not know if my lack of mental focus is due to the hormone adjustments the BHRT doctors have been doing over the past year. But in the past 2 months, I have been sliding back to where I think I use to be before I ever took testosterone and prior to my diagnosis with Klinefelter's syndrome. My inability to focus on topics and ease of distraction coupled with extreme fatigue is impacting my work and will probably result in my termination (again). Sadly, from a discussion with other Klinefelter's people, this sounds like something that is rather common. I however have been spared it for nearly 30 years.

Not sure what to do. I have attached my lab tests and the meds they have me on. I am taking 1.25 pills of Anastrozole twice a week and injecting 0.6ml of testosterone twice a week. One tablet of DHEA daily. Also, have a lot of vitamins which too.
 

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Systemlord

Member
I am taking 1.25 pills of Anastrozole twice a week
That's a lot of Anastrozole, I wonder if you even need it. I also have high estrogen on TRT and every time I tried to treat it with AI's, it ended in me feeling horrible.

You have to ask yourself if you actually need an AI. I also notice the low SHBG, more shot frequency may prove to be better. If Jatenzo (oral TRT) is an option, you might consider it.

A new oral testosterone undecanoate therapy comes of age for the treatment of hypogonadal men

Do you remember if you felt any different for any length of time after starting on an AI?
 

XXY47

Member
That's a lot of Anastrozole, I wonder if you even need it. I also have high estrogen on TRT and every time I tried to treat it with AI's, it ended in me feeling horrible.

You have to ask yourself if you actually need an AI.

Do you remember if you felt any different for any length of time after starting on an AI?
That is why I’m posting here, I don’t know. I do have issues with the estrogen, and recently it has been bad. I have been thinking of booting my hormones specialist because it sure seems they have no clue about Klinefelter’s syndrome. They seem to be treating me like I’m a women.
 

XXY47

Member
That is why I’m posting here, I don’t know. I do have issues with the estrogen, and recently it has been bad. I have been thinking of booting my hormones specialist because it sure seems they have no clue about Klinefelter’s syndrome. They seem to be treating me like I’m a women.
When I started on AI I had issues but I have actually read other accounts about the hormones specialist I am with on here where they also used AI with them and felt horrible. I’m going to back the AI off and see how I feel. Still think the specialist doesn’t have my testosterone high enough. But I’m no expert.
 

Fortunate

Well-Known Member
I'm not sure what to do, I do not know if my lack of mental focus is due to the hormone adjustments the BHRT doctors have been doing over the past year. But in the past 2 months, I have been sliding back to where I think I use to be before I ever took testosterone and prior to my diagnosis with Klinefelter's syndrome. My inability to focus on topics and ease of distraction coupled with extreme fatigue is impacting my work and will probably result in my termination (again). Sadly, from a discussion with other Klinefelter's people, this sounds like something that is rather common. I however have been spared it for nearly 30 years.

Not sure what to do. I have attached my lab tests and the meds they have me on. I am taking 1.25 pills of Anastrozole twice a week and injecting 0.6ml of testosterone twice a week. One tablet of DHEA daily. Also, have a lot of vitamins which too.
I haven’t had a chance to look at your labs yet. But, I find it useful to try to identify one or two things that might be worth changing and if possible, change them one at a time. For example, I would consider getting rid of DHEA. I have taken it in the past and when I do I feel incredibly fatigued the next day and it darkens my mood.
 

XXY47

Member
I haven’t had a chance to look at your labs yet. But, I find it useful to try to identify one or two things that might be worth changing and if possible, change them one at a time. For example, I would consider getting rid of DHEA. I have taken it in the past and when I do I feel incredibly fatigued the next day and it darkens my mood.
Interesting, the doctor just increased the dosage of DHEA and I have been struggling with overwhelming fatigue. I’m planning on cutting back on the estrogen blocker but will also looking into DHEA. I get the impression my hormone doctor really doesn’t have a clue on what they are doing.
 

XXY47

Member
That's a lot of Anastrozole, I wonder if you even need it. I also have high estrogen on TRT and every time I tried to treat it with AI's, it ended in me feeling horrible.

You have to ask yourself if you actually need an AI. I also notice the low SHBG, more shot frequency may prove to be better. If Jatenzo (oral TRT) is an option, you might consider it.

A new oral testosterone undecanoate therapy comes of age for the treatment of hypogonadal men

Do you remember if you felt any different for any length of time after starting on an AI?
I had to follow the trail for the oral testosterone, it has been available in Canadá for years and I took it around 2010. It has a oil based carrier which just destroys my digestion, for the years I was on it I was constantly in a state of diarrhea. So nope, not going back to that, let alone they had to be refrigerated or they would spoil.
 

MIP1950

Active Member
Interesting, the doctor just increased the dosage of DHEA and I have been struggling with overwhelming fatigue. I’m planning on cutting back on the estrogen blocker but will also looking into DHEA. I get the impression my hormone doctor really doesn’t have a clue on what they are doing.
DHEA is positive/negative and the latter is that it increases estradiol. Not always a negative, but maybe so for you. You're prescribed anastrozole to blunt conversion of testosterone to estradiol and told to take DHEA would seem to be at odds with whatever your doctor is thinking(or not thinking). I'm surmising that Klinefelter Syndrome is rare and endocrinologists only know about in an academic sense. I know you're an adult, but maybe a pediatric endocrinologist for a consult to refer you to a knowledgeable colleague or contact the endocrinology department at a university hospital. You definitely don't need a doctor who doesn't know how to treat you but is willing to use as a lab rat.
 

Systemlord

Member
I get the impression my hormone doctor really doesn’t have a clue on what they are doing.
Get used to it because it's very common due to the fact sex hormones aren't taught in traditional medical schools. A lot of doctors, endo's just don't "specialize" in sex hormones and you're left with undereducated doctors operating in the dark.

You can have extensive education in sex hormones and still not be able to direct treatment effectively because there's no substitute for clinical experience prescribing testosterone.
 
Last edited:

Fortunate

Well-Known Member
DHEA is positive/negative and the latter is that it increases estradiol. Not always a negative, but maybe so for you. You're prescribed anastrozole to blunt conversion of testosterone to estradiol and told to take DHEA would seem to be at odds with whatever your doctor is thinking(or not thinking). I'm surmising that Klinefelter Syndrome is rare and endocrinologists only know about in an academic sense. I know you're an adult, but maybe a pediatric endocrinologist for a consult to refer you to a knowledgeable colleague or contact the endocrinology department at a university hospital. You definitely don't need a doctor who doesn't know how to treat you but is willing to use as a lab rat.
Agree. I would strongly recommend taking DHEA out of your protocol. Do it for a few days and see how you feel.
 

MIP1950

Active Member
Under Health Canada, can you directly contact a university hospital to consult with a specialist or does that require a referral? Perhaps go back to your primary and discuss this with him or her. Your endo might be reading up about KS on the Internet and just grabbing bits and pieces to try. The doctors ego is getting in the way. The honest approach would be to tell you that he or she doesn't know how to treat KS and work with you to find someone who does know. But, many doctors will just fumble along, not improving the patient's condition and sometimes making it worse.
 

Fortunate

Well-Known Member
Under Health Canada, can you directly contact a university hospital to consult with a specialist or does that require a referral? Perhaps go back to your primary and discuss this with him or her. Your endo might be reading up about KS on the Internet and just grabbing bits and pieces to try. The doctors ego is getting in the way. The honest approach would be to tell you that he or she doesn't know how to treat KS and work with you to find someone who does know. But, many doctors will just fumble along, not improving the patient's condition and sometimes making it worse.
I actually believe your doctor probably knows more about Klinefelter's than other specialists. I don't love the idea of doctor shopping to hear what you want. But, I think it's absolutely a good idea to get more than one opinion on a matter.

You can't replace experience. My advice is that if you want to get another opinion, consider trying to find out who has the most experience with Klinefelter's in your area. You can even ask your endo for a name. If you can't figure it out, then going to a place like Mayo is always a safe option.

You may also need more than one type of specialist involved in your care. It may be the case that some well versed in the world of "functional medicine" and TRT treatment may be a better choice to run your TRT, but the endo may need to stay involved to manage other manifestations of Klinefelter's.
 

XXY47

Member
As an update, I removed the DHEA tablets from my daily allotment of vitamins and pills about 4 days ago, and I am feeling much better. I also find I do not have anxious feelings which were why I was initially put on DHEA in the first place. I have tried every time I work with a new doctor to share the various studies and findings relating to Klinefelter's syndrome with them. But I get the impression based on the various prescribed directions from these doctors that they really never read any of the information.

A young man I use to have in my youth group bible study went on to become a Pediatrician in Winnipeg and studies the current medical system. In passing one day I asked him if there was any documentation in his medical books on Klinefelter's syndrome. He told me there was one complete page on the condition, what it was and the possibility of ever seeing anyone with the condition.
 

MIP1950

Active Member
As an update, I removed the DHEA tablets from my daily allotment of vitamins and pills about 4 days ago, and I am feeling much better. I also find I do not have anxious feelings which were why I was initially put on DHEA in the first place. I have tried every time I work with a new doctor to share the various studies and findings relating to Klinefelter's syndrome with them. But I get the impression based on the various prescribed directions from these doctors that they really never read any of the information.

A young man I use to have in my youth group bible study went on to become a Pediatrician in Winnipeg and studies the current medical system. In passing one day I asked him if there was any documentation in his medical books on Klinefelter's syndrome. He told me there was one complete page on the condition, what it was and the possibility of ever seeing anyone with the condition.
I've had Tourette's Syndrome since I was 3. As a young adult, doing research on it, the consensus in the neurology community was that TS was rare. I'm the one who read an article in JAMA while waiting to see my psychiatrist and it addressed TS. I showed him the article and he sort of backtracked, telling me that, yes, he'd thought I might have Tourette's Syndrome. Nice guy, but he could have been honest and told me he hadn't considered it.
 

madman

Super Moderator
That is why I’m posting here, I don’t know. I do have issues with the estrogen, and recently it has been bad. I have been thinking of booting my hormones specialist because it sure seems they have no clue about Klinefelter’s syndrome. They seem to be treating me like I’m a women.







European Academy of Andrology (EAA) GUIDELINES ON KLINEFELTER SYNDROME Endorsing Organisation: European Society of Endocrinology (2020)


* Testosterone Replacement Therapy in adult men with KS should follow the established guidelines on diagnosis and treatment of hypogonadism

Screenshot (14103).png
Screenshot (14104).png

Screenshot (14105).png


Legend to Figure 1

Signs and symptoms of Klinefelter Syndrome (KS) at various stages in life. It is indicated that these symptoms may be seen in some or many patients with KS, depending on their age. Most of these symptoms are not inherent to KS and are, therefore, not specific. Small firm testes can, however, be considered quite specific. Also, the combination of symptoms in adults can be considered specific and promote the diagnosis of KS.
Screenshot (14106).png




Table 2. Summary of the most important parameters to be tested and/or related therapeutical approach in adults with KS
Screenshot (14107).png

Screenshot (14108).png
 

madman

Super Moderator
As an update, I removed the DHEA tablets from my daily allotment of vitamins and pills about 4 days ago, and I am feeling much better. I also find I do not have anxious feelings which were why I was initially put on DHEA in the first place. I have tried every time I work with a new doctor to share the various studies and findings relating to Klinefelter's syndrome with them. But I get the impression based on the various prescribed directions from these doctors that they really never read any of the information.

A young man I use to have in my youth group bible study went on to become a Pediatrician in Winnipeg and studies the current medical system. In passing one day I asked him if there was any documentation in his medical books on Klinefelter's syndrome. He told me there was one complete page on the condition, what it was and the possibility of ever seeing anyone with the condition.



 
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