Let me start off by saying this is a very long post. If you don’t have the time or are not interested in alot of information, please do not continue reading this thread. My situation is not your average case. I included alot of things in here so anyone reading it or following the thread might be able to help me or recognize things that I am missing.
I will be using this to document my road to recovery. I am confident that I will reach my health goals sometime in the near future and would like your help to achieve them. For the past 11 months, I have taken a very aggressive approach to get healthy again, but I am not there yet. I will try to provide some good background information on everything relating to my health and treatment so you have a general idea of what is going on. I have seen many traditonal doctors locally and at various leading health facilities in my state and they are stumped. I have worked with a few holistic/integrative type doctors and made some progress, but my health still continues to get worse. In regards to doctors and my treatment, I am going to be seeing mostly holistic/functional medicine type doctors, doing research/learning on my own, and asking for help/guidance on various forums to regain my health again.
In addition, my philosophy and take on my whole health situation, is that I refuse to believe that I will not get healthy again. It seems like a lifetime ago, but I was once in a positiion of optimal health and life was almost perfect. With all the advances in modern medicine and good people out there willing to help, I know that will regain my heath.
Background: Around 14-15 started using supplements to build muscle and help with football. I remember taking dhea, tribulus territis, andro, creatinine, protein, etc. Body was in great shape. Around the same time, I also started marijuana/alcohol use. About 18, from drugs and lack of always working out, body and libido took a little hit, but still appeared on the outside to be doing well. Late 18, played college football and blew up too about 250+, which was very high for me. Alot of substance abuse. At 19, I used 1 bottle of the steroid deca along with some dbol. Body was looking good, libido dropped a little. Late 19, started to do alot of cocaine. About 20, started to lose alot of weight and quality of life took a hit. Felt very bad, but couldn’t really tell because of so much alcohol and drugs. Still worked out though, throughout this whole time so I never just let myself completely go. 21-22, alot of substance abuse and life just spiraling downhill.
About 23, finally sobered myself up and got my stuff together. Once off the cocaine however, I started to gain some serious weight. Went from about 225 to 300 pounds in less than 2 years. At 24, even though I was gaining alot of weight and health was in bad shape, I was happy that I would be a college graduate. After this, I really started to evaluate my health situation, like wtf is going on. At late 24, went to go see a Doc about the weight gain and possible thryoid issues, and tsh came out a 5.1. So I thought I was on to something. However, I retested a couple months later and it was in range. This had myself and my family stumped so we did not do anything for awhile. And about a year ago. I finally decided I could not take it anymore. The weight gain, lack of libido, constant hunger, no energy, etc. was just something that I just had to address. So I started researching online and came across this forum, among others. I figured that I probably had a low T issue going on, found a local doc, and low and behold, my T is at the level of a 100 year old man. I also found out that I had a very low cholesterol levels.
I tried taking some cream for the T thinking that would solve my problems and life would be good again, however I had a terrible reaction to the T, which was that it made feel like I was going to have a heart attack. Not a little pain here or there, constant pressure and pain in the chest area and shortness of breath, etc. Next step was to go see an endo. He tried shots to see if that would work, but I had the same reaction. However he did find out that I was anemic. I was then referred to a GI and blood doc to look for possible causes of anemia. Had alot of testing and scans to look for things and the GI doc found out the I had an inflamed esphagus and this might be causing the anemia, but he really didn’t think so. So at that point, nobody had any solutions for me so I researched why I could have reacted that way to the T. I thought it could possibly be due to thryoid/adrenal problem so I looked for a doctor that might be able to help. Due to my heath continuing to get worse and rush to judgment, I actually flew to see a doctor that I thought had all the answers. After a saliva test said low cortisol, I proceeded with the adrenal medidation cortef. The cortef did raise my T a little, but I felt absolutely awful. Very jittery and nervous and just plain sick.
Then I was asked to increased the dose of cortef I was on and that’s when things took a turn for the worst. I started to get intense headaches, which eventually turned into alot of pain in head, neck, and spine, and that eventually turned into the pain in the CNS plus numbness and tingling in the arms. I went off the cortef, but it was too late. The symptoms continued to progress. So I went to various leading institiions such as the Cleveland Clinic and others to make sure that I was not dying or had some terrible disease and so far, things are looking ok in those regards. Thank god.
Up until a few weeks ago, I was still having the CNS symptoms until I noticed something while visiting a family member. I ended up drinking alot of ice water throughout the day and for some reason, it was helping the symptoms I was having. So I decided to keep drinking ice water every day after that and it started to really help. I still felt like crap overall, but at least the pain my CNS and numbness in limbs had became a little more bearable. Then I had a two boils checked out on my lower abdomen that was causing me some problems. Doc did a swab, sent it away and put me on doxycycline in the meantime. I went to Cleveland Clinic for an endoscopy and capsule endoscopy, and on the way home I got the results from the infection which came back as Klebsiella Pneumoniae. So the doc switched me to Keflex and all my CNS symptoms came back again within a day or two.
As you can imagine, I was very disappointed. I tried to switch the antibiotic to Bactrim DS to see if that might help, but the damage was already done. I currently still drink alot of ice water throughout the day, but it no longer helps. And that is where I am at. I am waiting for test results from a spectracell test, Genova stool sample, Genova toxic element hair test, capsule endoscopy test, and testing for a few common viruses.
Relevant Lab tests: I have a very low cholesterol level from my understanding. The total is 99 and the good one is about 20. Triglycerides were mildly elevated 8 months ago, but are now in range. The low cholesterol issue is not genetic and does not make sense for someone who is 6’0, 300 pounds and eats like a horse. And alot of food with cholesterol in it.
Anemia. Virtually all measurement related to red blood cells are low on my CBC. Hemoglobin, mcv, etc. Rdw is always high. Iron levels on TIBC are pretty low. Iron is about 50/60, transferrin is always in range, and the iron saturation is always low at about 17%. I have an elevated reticulocyte count, which means that my red blood cells are getting destroyed to fast. Ferritin is in ok range at a little under a 100. Erythropoetin level is elevated.
Thyroid/Adrenals: Tsh usually over 3, with the lowest being 2.7 All other thyroid levels are in range I believe. Could be on the high end of range or low end. Cortisol used to be around 13, but was at 16/17 last time I checked. Still take a 2.5 mg of cortef every once in a while because I feel shaky if I go too many days/weeks without it.
Testosterone: Around 200. Lowest being 150 and highest about 290.
Vitamins/minerals: Did a genova Nutre-eval test which showed multiple defieiences and problems with detoxification, methylation, etc. Mercury level was high on Genova test, but in normal range on Quest lab test. Waiting for hair toxic element test to come back as well as spectracell test.
Important things to mention: I have a history of infections. I used to get alot ear infections as a kid, lots of antibiotics. Had a pinworm infection when I young as well. Got what I think was a staph infection in jail at 19 years old, thumb ended up swelling up terrible for a long time. A few years later, developed a pilonidal cyst infection that ended up going on for almost a year or two. As I started to gain weight, developed boils in various places on body such as armpit, inner thigh, lower abdomen. Boils on lower abs just abcessed recently and the bacteria found was klebsiella pnuemonia, which from my understanding healthy people are not supposed to get and is a good sign that my immune system is very weak.
Also, I took alot of anti-acid medication when I started to gain weight to try and control heartburn. I took the otc med called zantac in excess for a couple years. Like 15-20 pills a day because I thought it made me feel better than taking a PPI. Still took some PPI’s like nexium to if it would help, but made my health worse. I think this really messed the balance in my stomach.
And when I tried to reintroduce the cortef after going off it for the first time, I only went to about 5mg to 7.5mg a day, but my symptoms got much worse. My right eye started twitching a lot, left arm started getting more numb. That is when I reduced the cortef dose to the very bare minimum I would need such as 2.5 mg every week or so.
I also might have an issue with possible elevated levels of mercury. I got a fairly large tattoo when I was about 18 that used a good amount of red ink in it, among other colors. I also have eaten an enormous amount of canned tuna and fish over the years. Partly because it was good for muscle building, etc. Started eating at least a can day when I was about 14 and went off and on for a little while, but it has always been a staple in my diet.
Lastly, I think that my body is very sensitive to things like medication, etc. The way my body reacted to the T cream and shots and the cortef, probably indicates something. Maybe my immune system is very sensitive or some other body system is very sensitive. Not sure what it is, but its important to point out.
My biggest symptoms: The number one issue going on for me is an uncontrollable appetite and constant hunger. I actually feel hungrier right after I eat sometimes. I noticed a few food allergies starting to develop several months ago, so I have cut out various foods, but it still did not make a difference. I have eat every few hours or I almost feel sick and cannot function very well. This has been going for a number of years and slowly gets worse every day. It feels like I am not absorbing any of the food I am eating. I am currently looking for the underlying cause of this issue and will really need your help figuring it out. I am hoping the test results I am waiting on will show something in these regards.
In a sense, I am virtually eating myself to death. I do workout a few times a week and eat healthy food, and this keeps me somewhat in balance, but my health progressively gets worse. I very rarely enjoy eating a meal and it is essentially just a constant hassel to eat all the time. Very mentally draining, especially when your health deteriorates by the day.
The second thing is finding out what is causing the pain in my head, neck, and spine and numbness in the arms. I thought at first it might be MS or something similar, but it is not. I had all the tests. I think it is somehow related to my gastrointestinal system, toxins, poor blood circulation, or vitamin/mineral defieciency. I think the fact that all these symptoms came back after taking one of the worst antibiotics for disrupting your gut flora, Keflex, is a very good sign that the stomach and my CNS symptoms might be connected. And from I read about water, it can dilute toxins in your body, and that is probably why I felt better drinking alot of it.
Next is a frequent urination issue. I have been going to the bathroom almost 20-40 times a day for the last few years. At least 5-10 times at night sometimes. I have however also consumed a good amount of water throughout the day, so endo’s ruled d insipudus. The urination all the time is a terrible burden on my life. Can’t really ever relax and always looking for a bathroom somewhere you go. And I was checked out by a urologist who did various tests checking for a problem, like restriction or bladder spazm and everything is fine. I think it has do with me probably having low T for so long I am losing sensation or something. I remember reading something I think Dr. Shippen wrote about when he said that alot of testosterone receptors are located in mens genital area and when he has low T, it is very common that he also has frequent urination as well.
Also, weight gain and weight is an issue for me. I am 6’0, 300 pounds and am overweight. It has profound effect on my health. Ever since the CNS symptoms started to happen, I cut out lifting and stuck with running. I could barely run well before this because of so much pain in my ankles, feet, knees, etc. I actually cannot even do sprints any more or jog that well because of plantar fascilitis. I do still push through it though and can barely walk normal for a day or two after working out, just because I have to keep exercising.
Lastly, is my T and energy level. Both are very poor. I am however focused on the other areas of my health first, because I think as I start losing weight, my T will go up and I will have more energy.
What I am suspecting: I think there is some serious issues going on in my gastronintestinal system and or with detoxification of toxins. I have to figure out the underlying cause of why I am so hungry all the time and cannot lose any weight or put on any muscle. I am not sure if it is an issue with my intestines maybe very damaged and they are not absorbing nutrients properly. Could possibly be an enzyme defeiceiny because my bile flow is somehow blocked or bile isn’t being utilized properly. Maybe some kind of infection with candida/parasites/bacteria, that is robbing me of all of the imporant vitamins and minerals and signaling to my body to keep eating. Not sure here but this is my #1 focus as of now. I have completed a one stool test so far that showed I could possibly having a problem with candida. I waiting results of another stool this week that will show alot more information.
I am not sure what is going on with detoxification and its pathways, but I think mine could be very messed up right now. From understanding, alot of times people who are struggling with weight gain have alot of fat soluble toxins being stored in their body fat. And the process of the liver being overworked all the time just keeps fueling this process. I am interested in doing some testing to see what is going on here and possibly some trial and error with medications to see if something can work. However, I think the stomach has been addressed first, then come detoxification from what I have read. But in my case, they might be connected, not sure yet.
I have to figure out what is causing my low cholesterol levels. I feel this issue is directly connected to what is causing some of the underlying problems in my case. It could be connected with the bile and liver somehow. Or maybe the indirect result of me not absorbing food properly. I am not sure where it fits in, but know that its important.
I have to figure out what is causing the anemia and issues with RBC’s. I also feel that this is connected to some of the underlying problems in my case. What I am having a hard time trying to figure out is why its happening. I am not sure if the iron and RBC’s are getting used up from something in my gi tract. Maybe some kind of internal bleeding. Or possibly the levels are low because my body is trying protect itself by hiding the iron from an infection or pathogenic organism. Maybe a toxin like mercury is causing the anemia, but seems unlikely.
In regards to the pain I am experiencing in my head, neck, and spine and the numbness in my arms sometimes, I have at least ruled out a few things. At that is I don’t have MS or any other neurological disease, and any other major illness that traditional doctors can find. I am suspecting a possible poor circulation of blood flow because my hands and feet get cold sometimes. And the anemia could be contributing the blood flow issue as well. Or possibly one vitamin/mineral deficiency or multiple ones. Or maybe some kind of toxin, such as toxins from candida/parasite/bacteria, or possibly an environmental or heavy metal like mercury.
Right now I am waiting on a few test results and looking for ways to control my appetite. I looked into possibly juicing fruits and vegetables to help with weight loss and detoxification while I am trying to figure out the underlying causes of my problems, and it seems like a very viable option. I am also looking for doctors that know about some of the issues I am suspecting and will be trying to schedule appointments with them in the near future.
The only thing I am a little worried about now trying to put these pieces together. After the T didn’t work for me and the adrenal/thyroid medication didn’t work, this an area where not too many people know what to do. There are some people such as functional medicine doctors and other integrative doctors that probably would be able to help and that is who I will be working with. The point is that cannot give up or will not give up. I know my situation is a difficult one, but I have learned alot and contine to learn and will not stop until I can regain somewhat of a normal life. As mentioned earlier, with all the good peope out there willing to help and advances in modern medicine, there has got to be some way to improve the quality of my life.
If you can think of anything that might help me in any way or have any questions, please respond to the thread. I will post test results and progress as they develop.
This might sound like alot to try an fix and recover from, but I will do it. I have overcame so many obstacles in my life. This will just end up being one more and it will make me a stronger person in the end. Thank you for reading this post.