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OK, the doc’s assistant called back and said the doc agrees – your dosage need adjusting so he wants you to start taking 88 mcg. 6 times a week and 75 mcg. only once a week (instead of twice like I’ve been doing). I commented that that is a really, REALLY tiny change and that I thought I needed to do more than that. She said that since my TSH was just slightly over the high end of normal that we didn’t need to change it much. I told her that even though it’s only a bit away from “normal”, it’s FAR off from where I felt my best (a TSH of about 1.5). I had been doing some calculations and suggested to her that I would like to do alternating days of 88 and 100 mcg. which would put me at 94mcg. a day (10 more a day than I’m taking now). She said she would go discuss it with the doc and call me back. I asked her to also run by him the idea of switching me over to Synthroid instead of generic and she said she would. 10 minutes later she called back, said he agreed with my dosing suggestions and that he liked the idea of switching to Synthroid. I guess I should be very grateful that I have an endo who actually LISTENS to what I want, huh?
Of course it wasn’t really that simple because then the pharmacy contacted me, said it was “too soon” to refill my prescription, I explained it was a CHANGE, not a refill, then they called back again and said the insurance company won’t pay for the brand name unless the doctor himself calls them, etc. By that time the doc’s office was closed but I’ll continue that battle Monday morning.
So I’m strapping myself in for the upcoming 6 weeks of roller-coaster riding because I know from years of experience that whenever I change doses I go through a myriad of symptoms until the TSH settles in again. My only hope is that since I am technically hypo the symptoms won’t be as bad as before because I’ve always been HYPER, never tried a dose change when I was hypo.
Thanks for the support and comments – as always, much appreciated.
SueHi there fellow “Suze”
I had a TT in July of 2013 so will answer your questions as best I can:
- I haven’t found any downsides to having my thyroid removed. It’s much easier to keep your levels stable once you’re fully dependent on artificial replacement.
- Didn’t have any weight gain from the surgery.
- I don’t notice any difference in how I feel an hour after taking the pill as compared to how I feel 12 hours later. I don’t think it causes ebbs and tides of energy – if you’re taking it the same time every day it’s pretty much stable in your system throughout the 24-hour period.
- I haven’t been diagnosed with TED but I do notice that my vision fluctuates a little when my levels are changing. But that happened before my TT, too, so don’t think the TT affected my eyes in a bad way.
- I have recently been diagnosed with osteoporosis, but is it related to having my thyroid removed? I don’t think so. I think bone density can be affected by thyroid disease regardless of whether we’re hypo, hyper, have our thyroid or don’t have it.
- I’m above 50 and the scar is barely noticeable. No loose skin or sagging, and you really have to look to find the scar.
- Am I glad I did it? Absolutely, 100%, without a doubt. My ONLY regret is that I didn’t do it sooner.
Hope this helps – good luck whatever you decide.
SueHi Shirley – so nice (and so comforting) to hear from you, to see you’re still here and still helping people out. Your comments, suggestions and advice are always so beneficial. I will definitely ask for a calcium level next time someone wants my blood. For all I know (now that you brought it up) I may not even need extra calcium, it’s probably the age, the thyroid meds, and the steroids I take for my colitis that are causing the osteo.
Thanks, Emmtee… I just checked and it’s calcium carbonate – the last thing I need is something else upsetting my intestinal tract!
The challenge continues, but as long as we’re all still willing and able to keep up the fight, we WILL prevail!
SueHello, Kimberly – nice to “see” you, too!
The doc who diagnosed me with osteo didn’t recommend calcium supplements…. she said she’d rather see me get the calcium from green, leafy vegetables, but I figured calcium-rich vegetables AND calcium supplements would be even better.
I’m going to cut down to one calcium supplment a day (instead of two) and make sure it’s about 10 hours after I take my Levo. I wonder, though, if maybe simply having the calcium in my system is causing the problem, regardless of what time I take it. I’m just shocked by how quickly my TSH shot up.
I’ll be talking to both docs (GP and endo) to see what they suggest – maybe it’s not the calcium at all. (shrug). Just when things finally got stable and normal….. as the world turns.
SueHmmmmmm…. may have found the culprit, but it still shouldn’t have this much of an effect, but who knows. I am and always have been VERY sensitive to even tiny changes and things that doctors say won’t affect me or that I won’t even notice, DO affect me and I DO notice. It’s great to be so in-tune with your body, but sometimes it sucks, too.
A few weeks ago I had a bone scan and the doc told me I was now officially in the osteoporosis range. I started taking calcium supplements but I am DILIGENT about not taking it anywhere near my Levothyroxine dose! They suggest four hours before or after, I have been doing 6 hours! But as you said, everyone is different and bodies change so maybe the addition of calcium, even at what is supposed to be a safe time, has affected the absorption of Levothyroxine.
Guess I’ll stop the calcium supplements.
SueOh my word…… can we chalk that up to Graves brain? 😮 This poor woman comes on here asking to have her confusion cleared up and I throw MORE confusion into the mix by questioning her colitis diagnosis! Note to self: don’t keep the thyroid forum and the colitis forum open at the same time anymore!
My apologies to the original poster. I’m not always this ditzy…. sometimes I actually have something useful to offer!
Sue
