The first diagnosed autoimmune disease I have was hypothyroidism - not getting enough action out of my sluggish thyroid. My dose of medication barely changed for over a decade until my surgeries over 4 years ago. It took 18 months to get it sort of under control. I needed to take a new dose for 6 weeks before testing it again. It is a slow process. I was loosing weight rapidly so the doctors didn't seem too concerned. I tried at least 5 different strengths before it stabilized but still had to change the dose every once in a while.
Now it is way off of the charts sluggish again. It was so bad when they tested it at Mayo in February I emailed my doctor asking her to give a lab order to retest it. Her nurse called and said "she wants to SEE you in the morning because if you really have a reading that high you would be in the hospital." It's been a slow change and test and wait for 6 weeks process. I've finally gotten her to refer me to an Endocrinologist. She wants to refer me as the last marathon had a lot to do with my rapid weight loss. The first time he office could get me in is 6/2 - over a month from now.
I've researched it on the internet and am surprised at the way mainstream treatment is handled. Without getting too wordy, there are several kinds of thyroid readings and it affects around 5 different glands in our body, like pituitary glands, adrenals and so on. I don't trust the internet as much as my doctors so am not thinking it is the end of the world or anything like that. There are some kooky charlatans on the internet in about everything we look up.
My Mayo GI says it is important to have it under control as it affects our j-pouch function. When I first met him for my UC second opinion in 1998 it was off. When I first went back due to my j-pouch problems in 2012 it was really off, .03 when the bottom range is .30. I've convinced myself it affects about every cell in our bodies. My latest Mayo test - I have no idea why the reading was so high - was 19.8. The range is .3 - 4.2. Since there are different tests, you'd need to check what normal is for the one you take. The local test 2 days after the Mayo one was almost 12. 6 weeks after that almost 11. I will be taking another test before the 6/2 appointment and know it's not going to be in the normal range and I've read that the optimal is really 2.5!!!!
Have any of you had such a roller coaster trip with your thyroid? My metabolism is so slow now that if I even look at ice cream I gain weight. My hair isn't falling out yet, like it did 4 years ago, and I have chronic fatigue syndrome so don't notice if I have any additional fatigue.
Along with our vitamin D, potassium, iron et al please get your thyroid tested. It can affect pouch function. I don't know specifically how because I have chronic cuffitis, chronic pouchitis, total pouch inflammation and IPS. I don't understand how the inflammation is different than pouchitis but my pouchitis doesn't look too bad on the inside during scopes but the radiology tests show more inflammation.
I am hoping for a medical miracle here - that my thyroid finally gets where it needs to be and I'll have no more j-pouch problems and will loose the weight I've gained back. Or that I get rid of the chronic fatigue and will be able to exercise!
Do any of you have thyroid problems? If so could you please tell me what helps/helped you.
I've also had what I call "heat flashes" because they aren't hot flashes and I know that because I had hot flashes and they were over before I had my surgeries 4.5 years ago.