Red Rock, I hope you get better!
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Red Rock, I hope you get better!
((((Red Rock)))). I'm with Grits. Call your doc and see if you can, in the very least, get blood drawn sooner rather than later to see where your levels are so that you can make an appropriate dosing change. I'm sorry about your job, too. Hang in there and keep us posted.
I'm telling you; better health through chemistry is tough. I've played around with my own Methimazole dosing (reducing not increasing) because, quite frankly, if I waited for my bloodwork and a doctor's order, I'd feel lousy most of the time.
Thanks for your input Grits and Indy. I put in a call to the endo early this am after reading your responses. Still have not heard anything from them yet.
My endo appt. went well. She thought everything seemed right on, but ordered an ultrasound just in case there's something hiding. So, I'm getting that done tomorrow. She also ordered more blood tests. My GP never tested for antibodies, so it will be good to know if this is Hashi's. The other problem with my blood doesn't seem to be thyroid related, but she thought it may just be my body recovering from the radiation treatment.
I may never need to go back to her, but she was great. She answered all my questions and put my mind at ease. She also pointed out that I was already hypo at my blood test in 2011, but being under 6, it was "normal " by the old tsh standards. I need to talk to my gp about that.
Hope you're all feeling better!
I hope the ultrasound and antibodies don't reveal anything further. But yikes! A TSH of 6 as the upper end of the standard is higher than I've otherwise seen--even for the old standard.
Oh, I think I wasn't clear. My tsh was over 4 in 2011, so I think that's under the old guidelines, but over the new ones. It was my bad for not looking into for myself, but at that point I didn't know the way I felt was abnormal. It really took my hair falling out to make me see something was wrong. And that is also growing back. Yay.
Oh, and I think the guidelines changed before then. Actually, I think they still have the old guidlines on the lab printout, which I need to tell my NP about.
Yeah; a lot of doctors and labs don't use the new guidelines. It's frustrating. Even with the new reference range, some docs will tell you that while a TSH of either .3 or 3 is considered "normal," most of their patients feel at their best with a TSH closer to 1. Depending on a doctor's attitude, it may be up to the patient to insist that dosing decisions are based, not just on what's "normal," but on how the patient feels.Quote:
Originally Posted by redrhodie
Yup. My endo is refusing to up my dosage (I will be looking for a new endo). My TSH is over 2, and went up to closer to 3 between bloodwork. She says "you can't titrate it that closely." ARGH!
Good luck finding a new doc? Has the current doc asked you how you're feeling at that level? If the answer is "not great," I don't understand her opposition.Quote:
Originally Posted by Blueberry
I don't know that they appreciate the frustration of being dependent on a drug for nearly every bodily function. From sleep to pooping to libido, among many other things. As a patient, you just want to go back to taking "normal" for granted.
Blueberry...man that's got to be beyond frustrating. The doc taking into account how you are doing.
Indy..I totally agree with you there.
My update: At least it is postive. I told the doc what all had happened and how I was feeling. It did not make sense to him but the Assistant said to him in the office that even though my dose had been lowered, I was still not feeling great. Then she said that we want you feeling better. I agreed. Isn't that what we all want??? Anyway, I'm back up to my old 10mg dose. Both my husband and I hope this takes away all of my symptoms and I start feeling better soon. Not sure how long soon will be. They did say that if I was not feeling better in a months time, to go and get the bloodwork done. Then I guess I would see him at that point. He has added a CMP, a CBC, the TSH Antibody, in addtion to the normal thyroid panel. I am close on my weight. I feel like I have been eating house and home for a while just to get closer to my normal 140. I came in at 136. So I am still eating a little bit more than normal.
Good luck to everyone. This is by no means any fun. Why can't it be simple? There needs to be more understanding with the whole Doc patient relationship and the thyroid for sure.
Take care all,
Red Rock
So, I got my labs, and it looks like I have Hashimoto's (high levels of both antibodies). No big surprise, and actually a bit of relief to know it wasn't caused by the radiation treatments. My endo is on vacation, so I haven't heard from her. Also, my tsh was .19, so technically hyper, but I don't feel hyper, so I'm not sure if she'll lower my dose. I don't want to be overmedicated, but I feel good right now.
I'm nervous about the increased risk of other autoimmune diseases due to Hashi's, especially Celiac Disease. (Ha ha, auto correct changed Celiac to celibacy. I hope I don't get that either). My half brother has it so, I know I'm at risk genetically. I'm not going to worry about it until it's a problem, but it will be in the back of my mind.
That's a bummer, Red. I hear you about the worry re: other autoimmune diseases. It's on my mind a lot.
I'll be curious as to what your doc says. Two of the three endos I've talked to have indicated that I may have both Hashi's and Graves. For the time being, my current doc is still just focusing on my TSH levels and how I'm feeling. But they're right about the dx AND I start to have wild swings, then the easiest thing might be to treat with RAI, although that, too, can induce changes in the antibodies. I'm having a hard time getting my head around the transient nature of the various antibodies that can cause autoimmune related thyroid disease.
Red- Sorry to hear the bad news on Hashimoto's. in the beginning, that was what thet thought I had until my symptoms changed and so did my bloodworm. I'm still not out of the woods yet. They are checking me for other things, such as Hashimoto's, too. I'm just hoping that with my dosage increase all of my adverse symptoms go away.
Good luck. I understand where your coming from on the other autoimmune diseases. That is how I feel about all of it too.
Red Rock
My endo called last week and confirmed Hashis and lowered my levo dose from 100 to 88 mcg. Will check labs in 6 weeks.
If snap reads this, how did your dose change go? I think it was lowered a while back. Did you adjust well? Was there a phase of feeling hypo?