I was diagnosed with hypothyroidism when I was 12. For many years I was taking t4 which in my opinion barely kept me alive. I was misdiagnosed with fibromyalgia and had a couple of surgeries that probably could have been prevented if I had know there were other options. I eventually started doing research when I realized every symptom I had was on the hypothyroid checklist. I tried doctors in my hospital network and none were willing to try anything else. So I found a more holistic doctor and he put me on t3 immediately for the first couple of years I was actually a normal human being. I wasn't in so much pain I could barely move, no daily migraines, I had energy, lost weight, got feeling back in my legs that i could use but not feel, and the list could go on and on. I was bedridden for 3 years before t3 and I was fixed. I went of 4 kinds of unnecessary medications. Then about a year and 6 months ago I started getting symptoms again so my meds were upped a couple times but it was a temporary improvement. The problem with the doc I see is he only sees you when on your first visit and uses a PA(physician's assistant) as a go between afterwards. Today I go in to ask for help because t3 is not working by itself anymore. I wanted to discuss alternatives treatments because I'm on a high dose and it in itself isn't working anyway. I wanted to lower it to see if a combination would work better for me or start with a new treatment like dessicated thyroid. I also recently discovered heavy metals in my well water and have read enough to know certain kinds can inhibit thyroid hormone absorption and told the PA about it. I also mistakenly assumed he would want to check and see if I had developed any of the hypo conditions that could also inhibit absorption. So the PA accused me of self diagnosing online(my mom is a nurse so I know more than the average patient I helped her study for her certification test plus sat in on some of her classes but I fully admit I don't know everything) and called the doctor who promptly told him to completely all at once stop all my thyroid medication. He did this without having seen me in the last 3 to 4 years or speaking to me. I think it's unethical and might even be malpractice I welcome any thoughts. If anyone has any treatment ideas feel free to let me know. One other thing that bothered me when I was at my first visit was the fact that he refused to run a reverse t3 on me because it was quote redundant. I let it go because I thought they could help. I have lost a lot to this disease and I'm sick of it. Too sick to go to college and have the career I wanted. No social life because I'm too much of a zombie to have a personality much less have the ability to go out to meet people. I have so many holes in my memory it's hard to believe I'm 31. I have built a life now and I am not going to let it go easily.
Frustrated Hypothyroid Newbie: I was diagnosed... - Thyroid UK
Frustrated Hypothyroid Newbie
I'm sorry you were diagnosed so young and have got all the horrible symptoms back. Have you got any recent test results with ranges to post? Knowledgeable members will then be able to advise.
Unfortunately, many of us are often let down by inadequate testing and poor treatment ~ thyroid problems are poorly understood and patients are left to suffer as a result. Please don't worry, you're in the right place ~ there's lots of help and support on here!👍 xx
PS ~ you haven't actually STOPPED all medication have you?? How much T3 were you taking? xx
Thanks. The last time they tested me was actually a couple years ago and it was only tsh. I tested below the normal range but I was not experiencing any hyperactive symptoms and they at least used to go by how you feel. After that they assumed they would get the same results so stopped testing me. The only time they tested all the values was on my first visit. This doctor actually manufactures his own medications including the t3 so once he says stop your meds I can't get anymore and I don't have an alternative place to get any so I have no choice but to stop them. I was on a very high dose because when I started getting symptoms again they suggested that I increase my meds so I did that and it would work for a couple of months to start with then it only worked for a month and then it didn't work at all so I got up to 360mcg then I gave up and went to my doctor for help. I never wanted to be that high I just wanted to feel better. I did call the doctors office and tell them my concerns about the health risks and they said they would send a bottle of 30 90mcg I'll believe it when I see it. It is still pretty unsafe because it is a really big drop. I also discovered a review about them giving a substance that was supposed to be hcg for weight loss but wasn't to 4 different women. I am going to have my mom contact a pharmacist she knows about testing a pill to see if it is on the up and up. There were a couple of times I felt like my new meds didn't work as well as last months meds. I blew it off at the time but who knows. I am going to start calling new doctors on Tuesday. I have this tendency to find doctors that don't want to deal with me because my body doesn't follow the typical rules.
Thank you for the suggestion I will look into it.
I worry about the heavy metals because I lost 100lbs after I was put on t3 and I know it stores itself in the fat cells and I lost the weight within a short time so that's a lot to hit the system at once. I'm sure the metals have been in our water for years we just didn't know. I tested due the metallic taste in the water. So thanks again.
You really need to have extensive testing for thyroid levels and all vitamin/minerals and of course the heavy metals. I hope you can find someone to help you soon.🙏
Many Drs sadly don't understand thyroid conditions that don't fit the 'norm' ~ whatever that is! Please post any discoveries you make via tests on the forum and members will try and help. Good luck🍀. I hope you will get answers soon. x
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Frustrated 😤 
