[ewmb]

#1068249

Lacie,
Sorry to hear about your troubles. I too am having questions about the dosing of my hormone after only 12 days. You probably saw my post from this afternoon. I would really be worried about a pulse rate in the 30s. That is really low even for you. My pulse has been staying fairly stable in the last few weeks but if I sit down and rest for a while it will go down fairly quickly to the mid 60s which is low for me.
I might come at it from the point of view of your heart health tomorrow. You don’t want to be in trouble there. Ask for a standing order for your local doc for blood work since you had trouble there before so you can go once a week if necessary. I feel like the doctors need to understand that we really do feel different when things start to change and that we should trust our intuition on asking for labs. I know that they don’t want to have you go hyper again with too much hormone so that may be a reason on paper not to start replacement too soon. I agree that the feeling is lousy. It’s so different from hyper. I told my husband that I am still so tired and he asked me if it were different and I said yes. When I was hyper tired it was like I worked all day long and needed to sit down and maybe it would help. This is like I never even got started and I need to SLEEP to restore my energy but SLEEP doesn’t do it.

Let us know what you find out tomorrow.

ewmb

[runlacie]

#1018978

You all may remember I had my labs done right before the Labor Day weekend cause my pulse was 40. Well, all last week I waited and never got a call with the numbers. I was busy at work all week and felt pretty good, so I never bothered with them, either, figured I’d wait til today when I finally got a day off. Over the weekend I felt like sludge. Like I was velcro’d to the floor and couldn’t move. Even running fast doesn’t get my pulse up. This morning I was wearing my monitor when I was getting my son ready for school cause I was heading out for a run as soon as the bus came and I noticed my HR was in the 30’s standing up. Well, I know for a fact that it has never been that low before. I’m gaining weight like crazy 1-2 pounds per day. And I took my BP at WalMart yesterday and it was 103/60. Today I finally got in touch with the office and my TSH has moved up from nothing to .018, my T4 is .86 and T3 is 2.6. This puts my T3 and T4 levels at the very bottom of the normal range and they are each about .3 lower than the labs I had done 2 weeks prior. So what I want to know is why can’t they start me on some replacement now (since I feel like crap and obviously a pulse of 30 is something to question) and it’s very apparent that I’m closing in on hypo. Why do I have to hit rock bottom first? Wouldn’t it be kinder and gentler to stay away from the lowest of lows??? I asked the nurse and was told that "yes, the doctor does expect you to go hypo at some point soon, but they don’t want to mess anything up by starting replacement too early." What can get messed up???? And isn’t my so called "normal" different that what somebody else’s "normal" would be anyways? They wanted me to wait another week and do more labs, but I asked to talk to the doctor and at first the nurse said she couldn’t promise anything. I said, but it’s my doctor you mean I can’t talk to her? The nurse called me back and said I can go in tomorrow at 8:30 for an appt. Which is great, but I still want to know is there some kind of REAL REASON they can’t start me on a small dose to make me feel better while my thyroid keeps dying since I’m obviously on my way. Or did she just make that up. I think the nurse made it up. Otherwise, if it’s going to "bring my thyroid back to life" or something wouldn’t we just make that the normal procedure and then nobody would ever really have to be hypo? Hopefully, at the very least, I can get them to do labs tomorrow instead of waiting another week.

I just wanted to hear from all of you on what you think? Give me some intelligent questions to ask about why I can’t start replacement now, or explain to me what I’m missing. TIA!

[elf]

#1068250

TSH lags behind by 4-6 weeks or so (right now it shows your state 4-6 weeks ago. Your today’s TSH state will show up in 4-6 weeks). Since your free Ts are heading into the hypo territory (congrats, RAI worked), and subjectively you are starting to feel hypo-ish, yes, I’d think they’d start you on Synthroid – using a gentler approach. Do whatever you can to squeeze Synthroid out of them.

[runlacie]

#1068251

Well I went to the doctor this morning and she told me I really should wait a bit longer just until the TSH starts coming up – that way whatever thyroid I have left has a chance to work on it’s own – just in case I’m in that lucky (but small) percentage that stays euthyroid after rai. We did talk about whether to go with the generic or levo and agreed on levo, and she got my pharmacy number so I will be all set and not need another appointment right away. I agree that the TSH does lag behind and waiting is kind of cruel, but I guess I want to know for sure, too. She isn’t worried about my low HR or BP, either. I felt better last night and today and so I was okay with waiting until next Monday for the lab draw. I’m tired now, though. Feel like I need a nap. Ate 1900 calories and ran 6 miles yesterday and still gained another pound. grrrrr. Don’t get why she just didn’t explain it better on the phone since the nurse wasn’t going into enough detail to satisfy me. Oh well… at least I don’t have to go back until November now.

[Ski]

#1068252

Lacie this sounds really weird to me ~ it takes a while for your body even to register the replacement hormone, so you need to start getting your T4 levels back up to avoid a long period of feeling horrible and gaining weight.

I find it tough to understand why a doctor would think you have any chance of remaining euthyroid, when your T4 and T3 levels are in the basement already. You took RAI to destroy your thyroid, there shouldn’t be anything remaining at the end of this road (if it was done right), and delaying your replacement hormone CAN be dangerous. Long periods of hypothyroidism actually contribute to hardening of the arteries.

If it were me, I would call your doctor back and get at least a prescription for the lowest possible dose, just so you can begin on the road. Once you start, you’ll still have to rise only one dose level at a time, as well as waiting six weeks between blood draws and lab work ~ so you can see how long a road you have ahead of you, and how much longer it may be if you wait to start.

[runlacie]

#1068253

Her explanation was that since my TSH was still only .018 on 9/4 that she wants to see it increase first so that it can tell my thyroid to make hormones and we can see. Even though my T3 and t4 were close to the bottom, I guess my pituitary needs to tell it to make more and then if my TSH skyrockets with no response from the thyroid we’ll know it is dead. I felt pretty good last week and think that was about normal, so I agree it would be nice to start something small right now just so I don’t have to totally bottom out. I bet if she’d have agreed to do labs today that my TSH would be up and we could just start from here. Oh, well. Who am I to know my own body anyways??? Maybe I will still get lucky and the lil bugger will make some on it’s own. Doubt it, though, since my labs seem to show a pretty steady and quick downward trend to hypo.

[Author]

Posts