Resistance to Thyroid Hormone

• By dragonfly44
• Posted December 4, 2008 at 8:04 am
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abccesn 12

Hi, only can tell you that ever still in positive actitude, because that help you too much.
I dont know more much of your sick, i have haschimoto tyroidism, and know that all tyroides sicks affect any anothers parts of body, in my case by autoinmune sistem.....tell us may be it cause that you feel all support that only here that you can find....tell us more about your life, and your corauge is it admirable.Be ever strong do it for your family, here helps in all we can......be faith......
Bless you
Andrea

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• By accessn12
• Posted December 4, 2008 at 7:29 pm
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Thank you Andrea. I appreciate your support. I do try to remain positive. I really want to live the best life I possibly can.

Sometimes I get angry though. Mostly when I think about how many doctors I have seen and how many of them told me that my problem was in my head even when they could see how sick I was. Even after I figured out what the problem was, no one I went to was willing to listen. It took me 15 years from the point that I knew what I had to find a doctor who would listen to what I thought, test me and then treat me. In the meantime, my body was permanently damaged. I'm having to deal with some really annoying problems because of it.

Today I went back to work. I enjoy my work. I'm hobbling around on crutches from having 4 toenails permanently removed on monday because a dermatologist disagreed with me that I have pustular psoriasis. He gave me a shot of cortisone which caused a horrible flare. Messed up my nails on my hands and feet. I had to have them removed because of the diabetes that I developed because of the long term, untreated thyrotoxicosis.

I think I'm kinda frustrated right now.

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• By Tamyra
• Posted December 5, 2008 at 9:12 am
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Your post gave me a little hope this morning. I am still waiting to find what genes are not right. I haven't found a doctor who will treat me yet. I have 32 diagnosis, Five chronic and rare of course. Just waiting for the medical world to catch up. I am on the list for an appointment with a new team of doctors, I keep logs to help the right doctor who will take the time. I'm not blaming anyone, I have seen some really good doctors but just haven't found the right one. I know it will take time, the information isn't out their yet. How did you get help?

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• By accessn12
• Posted December 5, 2008 at 11:23 am
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Tamara, there's always hope. Not many people would understand it, but one of the most exciting days in my life was the day I was told I wasn't crazy and that all my years of research had finally paid off.

I pretty much just lucked out. I'd gone a long time just living with it. I had a gp for many, many years who seemed to somewhat agree with me and kept me supplied with beta blockers but he wasn't willing to go the extra mile and actually commit. He'd just say that I knew more about it than he did. Before him, I'd been seeing an internist. A very good one who I liked a lot. The day he told me he was moving and I'd need to find another doctor, he told me he'd read an article in a journal and thought I might have RTH. This was back in 1992. That's what sent me off on the research. I finally found the article that he'd mentioned. The endo I was seeing wouldn't even consider it even though he's the one who said originally that I had some form of pituitary or hypothalmic hyperthyroidism before it became easier for him to say I had antibody negative graves after he couldn't come up with an explanation for the paradoxical lab results . He wanted to nuke my thyroid and that's where we left it. I told him ok after he said he'd take me off all the medications that were bouncing me all over the place and when my TSH fell below normal, he'd do it. I knew it never would. It never did go below normal and I didn't go back. I just stuck with the new gp I'd found. He's the one who put me on the beta blockers that made me finally start to feel better.

To make a very long story short, I got tired of traveling 2 hrs to see the gp and there was a new clinic in our small rural town so I started going there when I found a breast lump (benign cyst). We have one doctor in our county. I was impressed with the FNP and decided to stick with the clinic cause it was very close and very convenient. The FNP was also willing to just let me stay on the beta blockers since I'd been taking them for over 15 years. They do help a lot and they are the main treatment for the symptoms of RTH.

About 2 1/2 years ago, I had a really bad exacerbation of my thyroid symptoms after a case of shingles and finally went in to the clinic and asked the FNP to check my hormone levels. The last thing I wanted to do was stir anything up because of all that I'd been thru with it before but I didn't have any choice. I was out of control and needed help. The results went across the doctor's desk and he called me in cause he'd never seen anything like it and wanted to see who had managed to produce it. I told him what I knew and he actually listened. He started researching and talking to some experts, running some tests and finally I had my official diagnosis. After a lot of adjusting on the beta blocker dosage to get things under better control, he started me on Cytomel this last February, which is used to suppress pituitary function and I can honestly say, for the first time in my life, I actually felt "normal". If it wasn't for all this other stuff, I'd probably be able to say I felt great. During all this time, he found all this other stuff that's wrong with me. He says it's all a result of not receiving proper treatment to begin with.

It was an old fashioned country doc who'd grown up in a small town and returned there to practice because nobody else would who did it for me. It's nice to find someone who cares.

Now this is the short version. I sat down about 2 yrs ago and wrote a lot of it out. It was over 8 pages. ;-)

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• By Tamyra
• Posted December 5, 2008 at 11:46 am
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I will be going to U of M soon, I plan to follow up on this issue. I have 4 sisters we all have trouble, two have had thyroid cancer, one is almost 300lbs, she has really bad doctors and very sick, the youngest was just diagnosed with low thyroid. I have 4 lumps on my thyroid but the tests for function come back fine. I just know they haven't found the source, some of my treatments are helping me stay stable, but I am far from normal. I don't know if eight pages would cover my stuff I need to be a better writer. I have a hard time sorting out mine and comparing my sisters, mother, aunts and all (damned catholics too many kids ;-)). My daughter who isn't very well has also been started on thyroid medicine she is 27. I think this is going to be awhile, with lupus, selective anti-body, Hypogammaglobulinemia the doctors are afraid of me. One thing really cool is I read a post awhile back, the girl was talking about side effects from steroids and to do South Beach Diet in 7 weeks I have lost 17 pounds. I wish I could find her again and say thank you.

Yes you have inspired me for a chance for hope. Together we are better.

Love and Light,
Tamyra

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• By accessn12
• Posted December 5, 2008 at 1:06 pm
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I had a friend go to U of M just a couple months ago with great success. They diagnosed her EDS which is a rare disorder. She was really happy with the doctors there.

Have you read up on the MEN (multiple endoncrine neoplasm) syndromes? Just a thought. Some of them involve thyroid cancers. They're also very hereditary Have they done fna's of your nodules or are they telling you they're too small? Have they run TPO or TG antibodies on you? Or on the other members of your family for that matter? Most thyroid disorders run in families and often times one autoimmune disorder, especially lupus, are often accompanied by other autoimmune disorders. A normal thyroid function test doesn't always mean a normal thyroid.

I've got 3 sisters. They're all quite healthy. I don't have a large extended family. No catholics in the wood pile around here. ;-) I think my folks were the only really frisky ones. There's lots of only children throughout the generations. I don't have any children either. Never could have them and finally had a hysterectomy in my early 30's. No sense holding on to something that was causing me problems and couldn't be used anyhow.

I scare a lot of doctors too. I went in for a colonoscopy and upper endoscopy last year cause a GI was telling me I had "symptomless IBS". Was all ready to go. All prepped, IV already in and just waiting. They actually tossed me out of the hospital. Yanked the IV and sent me home. Said the anesthesiologist was unwilling to touch me. I still haven't had anything done about that but it doesn't really bother me cause I think that's the one area where they aren't going to find anything. I've got a digestive system that feels and acts in perfect working order. :) Turned out the pain was from neuropathy anyhow. I haven't had a whole lot of luck with specialists. As a matter of fact, some of them have been downright idiots. Sometimes I think "in network" means scraping the bottom of the barrel. I had to laugh one time in the er when the doc said I really needed to see an endo but she was hard pressed to recommend one cause she didn't know one that didn't walk around with his head up his ass. I'd seen enough of them to know what she was talking about.

When I took prednisone for two yrs way back when, I retained tons of fluid. Does southbeach limit the salt? That's what I had to almost totally elimate to keep from turning into a beach ball. I'm not much into what the various diets are. I've always been underweight.

Which brings up another thing. Since starting on insulin the beginning of last month, the dependant, pitting edema that I had about a year and a half ago has come back. Big time. Never did find out why I had it and it sorta went away for the most part when my sugar levels went and stayed high (sugar = natural diuretic) . All my research is pointing to pulmonary hypertension which would be another thing that could easily have been caused by the thyroid mess. It sorta scares me.

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