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Low testosterone,vitamin B12,Vitamin D and Cortisone,I am to weak to barely walk

Posted by @coyotelee in Just Want to Talk, Jul 27, 2011

The last 19 month have been a living hell for me,It started out just being a little weak but then it quickly got worse and worse and I spent a year bedridden,I finally got into a Endocrinologist and my blood work came back with testosterone level 275,Very low B12,very low vitamind D and low cortisone,the doctor gave me 300 mgs injections of testosterone every 10 days but after 4 days id be back in bed unable to walk,I was also given 50.000 mgs of vitamin D every 5 days but that hasent worked,1000 mg injection of vitamin B12 but that has not worked,20 mgs of hydrocortisone in the morning and at night but that hasent worked,Now my sight is sarting to go and everything keeps going blurry and im suffering severe headaches in the back of my head,The Endocrinologist ruled out addisons disease and doesnt know what to do and Nebraska medicade wont pay for me to go to the mayo clinic,My body is racked in pain and its getting worse and I just dont know what to do,Im 45 years old and I think im dieing,I had a nervous breakdown and tryed to drink myself to death which was foolish,I dont know what to do and know one will help me.

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PeterE likes this

Posted by @toddnchelle, Jul 27, 2011

Wow, this sounds just like my husband, Had the low testosterone (took shots every 10 days too!) , very low B12 (the doc claims it is from Gastric bypass 12 yrs ago??) now they want to start him on Vitamin D. He has the stumbling when walking, no balance, no feeling in the lower or outer extremities (peripheral neropathy!) and is still not getting any answers! He is now getting the headaches but he claims it is from the medicine they have him on for a very, very,very serious infection. Along with all this he is missing oral CANCER treatments because he cannot overcome the other symptoms!! Hope you have a doctor that can eventuall connect the dots! He is also only late 30's and I don't believe right now he will be here to see 45! Hold on and I am thinking of you. If you want, look up my profile and friend me and I will get you my email.

CoyoteLee likes this

Posted by @coyotelee, Jul 29, 2011

Hello Friend.

First and formost You and your Husband are in our thoughts and our prayers.
Thank you so much for responding.
I went to my Doctor today and now I am scheduled to see a nurologist to see if the problem could be somewhere in my brain,I wont beable to see him until September though.
Everything is taking so long and im getting worse and worse,I feel like im just being passed from Doctor to Doctor and never getting any answers.
What State are you from? My wife and I are from Nebraska and this State wont pay for me to go to the Mayo Clinic and the Mayo Clinic wants me to be admitted there but cant because of the state of Nebraska.
I dont know if im going to live or die and its a frightening feeling,I feel terrible for your husband and you and am wondering if me and your husband arent both suffering from the same exact thing?
My name is Ron and its nice to meet you.

mardigras likes this

Posted by @joetrainer31, Jul 12, 2012

Hello Ron. I came across your posts while researching some of my own health issues. We share many of the same symptoms. I have a very close friend who shares everything you described w/the exception of low testosterone. I'm not a medical doctor but I might be able to help you. I'm new to this site, but you can also reach me at joetrainer31@yahoo

CoyoteLee likes this

Posted by @coyotelee, Jul 12, 2012

Thank You Joe,I will email you right now Friend,I appreciate any help that I can get.
Again Thank You so much.


Posted by @coyotelee, Sep 8, 2012

I Believe that I am in fact going to die,A softball size tumor is covering my intire liver but it is like asleep or something like that,I thank God for my Dr here at the Mayo but im still need testosterone injections,b12 injections,vitamin D,Prednisone & Fludrocortisone because without it my Adrenal Glands stop working,After being thrown into a 30 day Adrenal Crises with no medical care or assistence in Nebraska for reasons I will never comprehend,The Endocrinologist said that she did it because she needed to test my levels(cortisol levels) and other levels without any steroid in my system yet we have a copy of the fax that was sent to her stating that i had been testested without steroids in my system and its all over my medical records,when i was diagnosed with addisons disease my regular Dr vetoid the prescrptions and left me bedridden for a year and after my wife had an all out fight with my Dr he gave me a am and pm Cortisol Test the results that came back were shocking 2.1 and 3.1 I live in the most agonizing pain throughout my intire body,Theres something very very wrong but atleased my pain level is now bearable but look up under Adrenal Crises and amagine going through it for 30 days with no medical treatment,it should have killed me.Theres a lot more to this but after 3 years of torture im not suppose to be angry people are tired of hearing about it,If only they lived in my shoes for just the 30 days adrenal crises,I wrote to france and am hoping to get there because they will hospitalize me and they will find out what is wrong,I do Thank God for The Mayo Clinic and for my hero Dr Adams and everyone at the mayo clinic in Lake City MN and Rochester MN,Im able to walk again with my cain but crimes were commited to me that were horriffic and from the highest levels in nebraska,The Mayo Clinic helped me when i thought it was over and they're kindness and genuine love and caring that come from the heart is something ill be forever greatful for,from the receptionists to the nurses and staff and my hero my Dr,Ive heard some people really say bad things about the Mayo Clinic but ive only seen what i cryed out for in nebraska for 3 years,Help,Care and Concern and to have been lucky enough to have been saved by these wonderful people and a Dr like no other here in Lake City even if i die they will be there holding my hand.But maybe ill just be on meds and live until im 70 But i dont think ill live passed 55,Ive had 2 nervouse breakdowns since being here because the atrocitys commited against me will haunt me forever,because of the 30 days of adrenal crises i can never lay down and sleep again because i stop breathing.Those leaders of medicaid in nebraska whom are responsible for this will face Our almighty God.Thank you all for your warmth and concern.
Ron Coyote Lee Grim


Posted by @jgandee, Sep 10, 2012

Hey Ron, Just wandering how you are doing.


Posted by @coyotelee, Sep 10, 2012

Hi jgandee, Thank you for asking Friend. I am actually doing pretty good,Last week was the best week ive had in years,I only had one bad day.
Today im in a bit of pain that is worse than userul but other than that im doing good,I have decided to put nebraska behind me and work on moving forward with my life.I will always be in pain and ill always be on to many meds to mention but they are keeping me alive.I dought that ill ever know everything thats wrong,like why my testoserone and vitamin D and Vitamin B12 are not staying in my body,The steroids im on that replace my Adrenal Glands should have put all of my testoserone and vitamins B12 and D at a normal level,Yet they are doing that,So I dont know why or what else is wrong with me,I have a softball size tumor covering my intire liver but it is i believe ether asleep or a dead tumor,They cant remove it without my life being put on the line,So I now have a new therory for it, Football players put on they're helmets to protect from head injurys,I look at the tumor as my liver helmet that is there to protect my liver from any damage.
Ive spent years hurting my own health over what happened to me and its brought on nervous breakdowns and I just have decided to let the past go and it has helped a lot. My Dr at the Mayo Clinic was the only person that talked me into letting this go.
If this week goes as well as last week then im going to start volunteering at the mayo clinic until i can find a job.
Thank You so much for your concern and I wish you nothing less than the very best.
Most Kindly
Ronald Grim aka Coyote Lee


Posted by @jgandee, Sep 11, 2012

SO GLAD to here you are doing well. I spent some time at Mayo, just to look for fatigue issues. I stopped for awhile looking for solutions, just alot of dead ends. But recently, one Dr kind of helped tie it together. I have similar blood work, low B12, low Vit D and low teststerone. Drs looked at that in the past and said, thats probably not what is causing, but I dont think they looked at the combination of all. And yes, the mental health is not neccesaryily because of your environment, but because of the body chemistry you have, the mental processing is weakend. It sounds like you are on the right track. You can feel confortable that the issues that haunted you in the past were out of your control. You would have to craw under a rock and wait till someone found a solution to your health, but that doesnt happen. We still try to go forward, but it can really make life rough. So I hope you continue to enjoy some good life. I dont think this is some disease that is setting dormant for awhile. I think some nervous and autonomic systems do not perform well and life stresses really kill it. Once the system breaks down, it can not recover on its own. It is too far damaged for just nature to heal it. It takes alot of the right treatment and it has alot of hills and valleys. Someday, this may be better defined as a chronic illness with better known causes and treatment. But it sounds like you are starting the correct recovery.
I have been trying so many supplements, but a few had some moderate help. I am starting B12, but have to go at it in small doses. It was too much for me in the begining. I can tell it makes a difference. I once tried some steriods, and those worked, but was trying to find a bigger underlying cause. Still more work, but looks promissing. Been at for 5 yrs. Take care friend.


Posted by @coyotelee, Sep 12, 2012

jgandee, You are forever in my thoughts and in my prayers,I would have been honored to have met you,I believe we would have became fast friends.
I have decided that im going to beat this or die trying lol, I had to first put the past behind me and thats what ive done,no more columns or anger or hatred, I have delweted the last 3 or so years of my life and I have forgiven everyone. and it really made a difference in my life. I may have lost everything and more but ive gained freedom through forgiveness. I want you to overcome these demon that have taken so much of our lives and I look forward to the day that I can shake your hand,I live in Lake City MN but would travel to the ends of the earth for a friend. I hope that we stay in touch and fight this together, We are not ready for a bucket list.

A Friend always
Ron Grim aka Coyote Lee


Posted by @piglit, Sep 12, 2012

Hi Ron Thank you for being my friend I feel honoured to call you mine. I have been through so many challenges with my health over the past 18months as well. It came to a final head two months ago when I had to leave my career due to my health issues. I have Factor V Leiden and have had many a problem with clots in my legs. You know I felt at that time that my world had collapsed from underneath me. My faith has pulled me through and my ongoing belief. You too have to beleive in yourself which I know that you have within you. My world has turned around again and I am starting to look for limited work again, so miracles can and do happen When I feel really down I take myself to wonderful places in my thoughts which make me feel happy, re walking along the beach, warm breezes flowing over me. My name Piglit is another place I go to from the story of Winnie the Pooh A.A.Milne if you ever get the chance try to read some even at my age I still find the stories wonderful and uplifting. I am not offended but feel uplifted through your kinds words, Take care my dear friend and remember always here anytime Annie PS God Bless you too


Posted by @coyotelee, Sep 12, 2012

Dearest Annie, I am so very sorry for the pain that you have indured,When you mentioned the beach and the air flowing over you it touched me in ways that I can not explain, I pray that someday I can take a walk on the beach and feel that wonderful air flowing around and through me.
I prayed last night and I asked God if I was going to be alone for the rest of my life?Loneliness can sometimes be the most painful but I also remembered that I have to live one day at a time and my life belongs to God and when God is ready for me to find what ive been searching for then ill know my lonelyness will come to an end.
I dont know you Annie but I pray for you every night and every day and I pray for everyone here that is ill or both ill and lonely.
Maybe you could join my website sometime and we could chat and that goes for everyone here at this wonderful place.I Love this site,Mayo is always trying to do the very best to help others in times of need and I hope that my site takes a lot of that love and compassion once it starts to fill up with members,im also putting a link to this site because so many people feel lost and alone and they feel like life is not worth living,I know because thats how I felt,I would pray at night asking God to some how let me fall into such a deep sleep that I would accidently lay down,You see Annie I cant lay down anymore to sleep or I stop breathing so I spend most nights up in pain,I can lay down for an hour or so but thats all im allowed.
Now I lay down and I pray and it has helped.
Also I recieved an email asking if id be interested in being a personal assistant for someone that will be leaving the United States until December,Ive had many letters emailed to me that turned out to make me the joke and brought laughter to others and also brought shame and humiliation towards me that still hurts because I want so bad to have a chance at life,when I was 28 and struck by a car in international falls Minnesota,I lost everything and I have tryed to rebuild my life for the past almost 20 years but no one has given me that chance and then to find out that the Addisons Disease was in all most likelyhood caused by that accident was like living it all over again.But maybe this time its real and I really did get the job but I am also prepaired to be laughed at again.To know that I have friends here that I can lean on and that I am here for those whom need someone to lean on helps me more each day.I pray that we become life long friends.
If you dont mind me asking,where are you from,it said IU OR EU I dont know where that is at,ive only been to Sweden and Canada and Mexico and my mind doesnt work like it once did.
Your Friend Always



Posted by @piglit, Sep 12, 2012

Hi Ron So lovely to hear from you again. I am doing okay and have managed in time to start to put the pieces back together again although this has and still is a very slow process I have faith that it is achievable for all of us in different ways. You know I joined Mayo when I felt lonely in my life and have found comfort in just talking to people who do care. You know who your true friends are though and they are the ones that can just drop you aliitle hello in your day to see if your okay, and make such a differnece to the way your feeling. You have had such alot in your life and I am so sorry for what you have been through. I used to say to my clients if I could find that magic wand I would make i t all go away. Still looking . I feel that we can all make a difference in our own ways I know that I try and I can tell that you do too. I have an immense positive outlook to life always have and always will, another gift givng to me by my strong faith and a wonderful supportive Mum. You take care my dear friend always here Annie


Posted by @swade3, Aug 4, 2011

WOW!! Where to start first of all just remember GOd has plans for us all. And My prayers are with you sir. I joined this site because I've had 3 shoulder surgeries in less than a year and a half. Well before any of this I only took some glucontro; for high sugar and most of the time i controlled it with eating right and exercising. now I'm on vicoden,Adderall,insulin and my favorite 2ml of Delatestryl weekly. I was curious as to what kind of meds people were injecting for low testosterone? I was fine until my Dr lowered my dose to 1 ml everyother week and after only 2 weeks of this im back to square 1 the adderall was working great and i was feeling allright but now i cant even get excited cant remember yesterday and just feel likw crap all over again i go see him tommorow and was wondering how or what to do? I had a horrible migraine mon at 3 am this one was the worst ive ever had my eye sight was really blurry i wanted to go to Er but did not dare drive and the headache is still here all week I do feel for you about Nebraska health care laws shoot come on over to new york lol.. I'm trying to learn about this problem my testosterone level was 68 and i really dont think it has gotten any better and I'm frustrated as all i've done for months is go to work come home go to bed day after day after day and on my days off i just lay around. it sucks laying in bed with 2 wheelers in barn and cold beers in fridge and all i can do is look out window. and now im realy freakiing out because of the headaches you are describing is what im feeling all week and if i go blind i quit i will not live blind whats the point as i stated god has a plan and as i think i wonder what purpose could this have ? I'm also in pain and I need to have a fusion surgery on my neck but will not do it i will take my 4 alloted vicoden daily and deal with it if my prior surgeries did this to me in less than 3 yrs what would that do it is major putting plated and screws in my neck no thanks well my whole point of this was to discover what other meds were available for replacement but it feels good to vent esp with someone who is going through what im experencing.. I'm sure I will talk againi.

Posted by Anonymous-186c5b9b, Sep 30, 2011

I wonder whether you may have liver disease - either Autoimmune hepatitis or something like Primary Sclerosing Cholangitis? Liver disease can cause low Vit A, D, E and k, low hormones and for some reason low Vit B. It also causes quite sever fatigue - which on a chronic level can lead to depression. I find it strange that you have a low cortisone and they have ruled out addisons? Maybe try to see a liver specialist.

Posted by Anonymous-186c5b9b, Sep 30, 2011

Also have they looked at hypothyroidism?

Posted by Anonymous-1e6e7952, Sep 8, 2012

It appears the low vitamin D and low testosterone may in fact be related:

PamEganNP and PeterE like this

Posted by @piglit, Sep 10, 2012

Hi CoyoteLee I am so sorry that you are going through such a lot of problems at this present time. Wish I had the answers that you need to make everything okay for you. Maybe try to see a physician they can do all the blood tests and other tests that may find the answers that you need. Try to stay strong and positive and I know that this can be hard at times through my own experiences, but we all have an inner strength and at times when we are faced with harder challenges throughout our lives it helps to rely on this. Please know that you have been in my thoughts and will continue to be so . Take care always here if you need to talk Piglit Itoo would like to become a friend accept if you feel okay to do so


Posted by @coyotelee, Sep 12, 2012

Dearest Angel (please dont be offended,I think that your heart is to kind and i cant get myself to call you that name) Thank you so much for your kind and warm words,You really made me smile and I appreciate that so much,Things in my life seem to have done an about face,I attend church every sunday,Ive forgiven all whom have brought harm to me,I have apsolutly deleted the last few years of my life and will never write another column or talk about what happened ever again,God has spoken to me loud and clear and in order for me to live I need to forgive and every since then I feel better,I feel healthier and I believe that God is going to change my intire life.I am honored to call you my friend,I once thought that I had many friends but found that to be not so true,But ive made a wonderful new friend in you and I feel blessed.I guess the hardest part is losing everything I owned except my car which is no longer my car since the engine blew but I believe that God will take care of me and I will survive,I refuse to give up,I have to much left to give and im going to fight to live and go back to helping those in need. My name is Ron Grim,I use to go bye my native american name Coyote and many people still call me Coyote which I dont mind.Since my ex left me I thought it was the last straw but God is filling me with love and compassion and forgiveness.Thank You Angel,I really needed a friend and you came to my rescue. Yours forever kindly
Ron Coyote Lee Grim PS God Bless You.


Posted by @lorianddoug, Mon, Jan 18 at 11:47pm CDT

Coyotelee... I'm not sure if you are still out there. But your condition sounds so similar to my husbands. I hope you are doing better... I need some hope.
My husband has gone from active and healthy 18 months ago and now he can't get out of his chair, much less leave the house. We have been on the waiting list at Mayo since May of 2015, how do we get there before he dies? Or none of this is reversible and can't be helped? Thank you for anything you can suggest. Drs here at home have been useless. We even went to Cleveland Clinic January 2015, and have no help and he continues to get worse and worse. Thank you again.


Posted by @anonymous-90348, Tue, Jan 19 at 11:28am CDT

Welcome to Connect @lorianddoug. You may also wish to connect with members on these 2 threads.

It is a long exhausting journey trying to find answers. It can take its toll on you too. How are you doing?

Cassie Jones
Connect Community Moderator

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