How to stay positive and hopeful?

[Sunshine_67]

I know I seem to complain a lot, but this board is my only place to go. My friends and family don't want to hear about my health anymore, and since I'm single and live alone, I feel very alone. It's been 4 years and I haven't seen one single bit of improvement. I'm just getting worse, mostly due to idiot doctors who pay too much attention to TSH levels. I've seen 12 doctors and still can't find a good one who can help me. I"m in a lot of debt and quickly running out of money and am scared I'll never get well. I know attitude is a big part of health, but how do you stay positive when every day is a struggle and you live in a world where someone with a broken arm gets more sympathy simply because people can see the broken arm. We look normal on the outside, and since I'm still going to work full time, no one thinks I'm really that sick.

[Sunshine_67]

I have done nothing for the past 4 years but research online. My entire life is consumed with internet research and finding a new doc. I literally have no money to travel. I'm about to run out of money to see my current doc and pay for my prescriptions, so there's no money for gas or a plane trip. I have no choice but to find someone in my local area.

I have prayed every day for 4 years, asking to give my doctors wisdom. Praying to find an answer, and nothing has changed except my health getting worse, running out of money and running out of doctors.

The lists online for best doctors are mostly endos, which I will not see since they only treat diabetes and ruined my health. I need to find an alternative, holistic doc or an osteopath. I live in Raleigh. I've seen several of these types of docs already who are listed on those websites and have had no luck. They're also too expensive. I need to find one who takes insurance. I have no choice. I literally have no more money.

[thethinme]

I'm so sorry to hear this specially because I really relate to you - single and family and friends are tired of hearing about my health and lack of motivation issues.

I am sure you already done that, but in my view the best tool we have on our side today is research, specifically Internet research. My TSH first came abnormal in February this year. I read about it for a month until I realized my GP was one of the conservative doctors. When I read that synthroid makes many people still feel symptoms and that's her treatment of choice based on TSH level only, I sought to find an open minded, integrative doctor in my area. I read tons about the guy who seemed to be right for me, waited 3 weeks to be able to get an appointment, and so far I am not disappointed. Been treated with armour, adrenal and yeast pills and my years-long brain fog is clearly going away after a few days on treatment.

What area are you in? Did you check shomon's best doctors? You just have to find a doctor who treats you for your symptoms, and even travel if you need to, to see one. I understand the financial concern but you need to find the right person through heavy research on reviews of doctors. Good luck and let me know if I can help with the search.

[Applecore]

There is always hope.  My mom always said to me today could be the day that you get your miracle.  Don't give up but try to ask whatever you believe in the direction you should go.  I believe that if you ask, you shall receive.  I have suffered for many years with many things and my faith has always given me direction and hope.  There is somebody or something out there that you will find the answers.  You do the internet and research it and also listen to the advice given on this forum.  They brought me through so many trials and gave me such good advice.  Some times we have to go along with a treatment until we find a better one.  Don't expect anything to be too fast but notice even the smallest improvements.  I know it is little by little.  My mom would also say, keep on keeping on.  Best of everything.

[Sunshine_67]

I've seen two endocrinologists at university hospitals. They were extremely mainstream and conservative and because my TSH wasn't above 5 before I started on thyroid meds, they said I never had a thyroid problem. One of those doctors said she doesn't put people on thyroid hormones until their TSH is at 10 or above. What I need is someone who's not conservative and will look at me as an individual and try to find out why MY body is acting this way, not put me in a box or treat me based on medical books. My labs don't follow any standard labs so doctors don't know what to do and I"m not responding to medicine the way most people do so it's stumping them. I feel like a freak and my health just keeps getting worse. I just wish I would have never started on thyroid meds. I felt tired and bad a lot, but I never felt this bad and never had brain fog this bad. I wish I could just stop taking it, but I think it's been too long now and my thyroid is probably too damaged from the Hashi's attacks.

I wish I had money to travel to another state or even another city to find another doctor, but I have no money to travel anywhere.

[Barb135]

Have you thought of trying a university hospital in your area, that might do a complete workup on you and try to treat your whole body, rather than individual symptoms?  Otherwise, you might look into Mayo Clinic for diagnostics; they can run the gamut of tests and rule out a lot of issues, then you can concentrate on those, not ruled out.

[Sunshine_67]

Oh, all 12 doctors tested for all the right tests. Most were just all too focused on TSH and had very mainstream education on treating thyroid only by TSH. Unfortunately for some reason, my TSH immediately goes to zero even on the lowest dose of T4, so as soon as it went to zero, my doctors would lower my dose until I was so fatigued I couldn't function. Yes, 12 is a lot of doctors, but most only saw me for 3-4 months. After that, they'd hit a wall and tell me they had no idea what to do with me and to see someone else. There's no chance in going back to any of them since over half of them wouldn't see me anyway. They all suggested holistic docs, so I went that route, and still not having any luck. I also have severe hormone deficiencies and cortisol imbalances, so who knows what's even causing what problem anymore.

I'm just so frustrated and tired of spending all my time on the computer trying to diagnose myself because none of these doctors has a clue.

[jtlmom1577]

I am so sorry you are so discouraged and I am glad  that you find comfort in this forum.    I am sorry that your family and friends do not take you seriously.  

My first thought when I read your post was "WOW, 12 doctors in 4 yrs is a lot".  

My 2 cents:  gather all of your labwork from all of the doctors and put them in a binder.  (I even created an Excel spreadsheet from there).  Include the amount of medicine you were prescribed etc.  What you are doing is building your own medical history.  It is possible that not one of these doctors was given a chance to treat you properly.  It take anywhere 6-12 weeks to acclimate to each medicine change before you retest and sometimes during that time, you feel worse before you feel better.  Pick one of the 12 or a completely new doctor and build a relationship with that doctor.  I picked my GP and challenged her education on the ultimate TSH.  She is willing to work with me as long as I am willing to work with her.  It takes time and unfortunately, you have to be patient.   At least start with a doctor who is willing to test for TSH as well as Free T3 and Free T4.  

Good Luck.