Thyroid meds with coffee

Post by **tex** » Thu Dec 11, 2014 10:36 pm

Yes, we know. But when does it serve the patient best? The goal is to resolve symptoms with a minimum of side effects.

Tex

LindyLou · Post by **LindyLou** » Fri Dec 12, 2014 7:25 am

I actually found the best time for me is at 2:00 am. Noticed a huge difference especially with T3. I was on 5mcg 2x/day but kept having heart palps. Came across an article regarding nighttime dosing and tried it. I've been able to reduce my T3 to only 5mcg 1x/day and am good there.

Post by **tex** » Fri Dec 12, 2014 11:32 am

Linda, you're a lot more versatile than I. If I had to wake up to take a pill at 2 am (or stay up until 2 am to take a pill, or whatever), my sleep quality would be trashed. I would function at a level slightly above a zombie, the next day.

Tex

TXBrenda · Post by **TXBrenda** » Fri Dec 12, 2014 1:24 pm

me also

dfpowell · Post by **dfpowell** » Fri Dec 12, 2014 2:06 pm

I keep my thyroid meds with a glass of water at my bedside. I take them when I wake up so waiting an hour doesn't seem so long.

DebE13 · Post by **DebE13** » Sat Dec 13, 2014 5:00 pm

I switched to taking it in the morning to see if that helps. I imagine improvements won't be noticed overnight but taking both meds together now. What you said, Tex, makes sense and it can't hurt to try. My three cats and snoring husband don't help the situation but aside from locking myself in another room, it is what it is.

I met with my PCP on Friday and she said there isn't anything she would suggest. I explained I would like to get my FT3 up into the higher end of normal. I told her I've asked for this at every visit with my endo and he will not oblige. I've been patient (well, not really)

by doing what he said and giving my body time to heal from the TT. It's been well over a year and I am still severely debilitated by the continued fatigue and brain fog. Not to mention the scalloped tongue (painful), being freezing cold all the time, muscle aches, hairloss, dry skin, etc. I was given the brochure for the ThyCa on-line support group by my endo and have read numerous patient experiences stating it is a night and day difference if their FT3 is too low. I get confirmation from the great people here and I don't accept that this is as good as it gets for me.

I told her I would like to try Armour but that is obviously a controversial topic and I have no chance of it though this facility since it is policy. She told me she knew a physciatrist in the area who will write scripts for Armour. When the words first came out of her mouth I almost blew up but then realized she wasn't pushing depression on me but an alternative to getting a script for Armour. That option wouldn't be viable because I need my endo for the yearly cancer follow up and my PCP agreed that even though my endo is one of the more open minded docs there (because he will use cytomel) that he would probably be unwilling to let someone else manage my meds. I asked about a referral to UW Health in Madison, about two hours away for an endo I've heard is receptive to symtoms. My PCP opted to skip any further testing and will talk to my endo and discuss a referral for a second opinion. I believe if I get a referral the visit will be covered under my insurance. Not sure if my endo will be offended, write the referral, or possibily adjust my meds. Worst case scenario I will have to find a new endo. Been there, done that with my first GI. One step at a time right?

I was releived that she didn't order more tests to chase a ghost but at the same time was disappointed since I had wanted to get a few things checked out. It was suggested that having another inflammatory condition (MC) can be the cause of fatigue. I explained I am very familiar with that since I've been dealing with MC since 2007 but what I am feeling now is a direct result of my TT and the feelings are very different. There was also a subtle suggestion that my condition may be as good as it gets. In the end, she said it is my body and I need to do what I feel is best for me and she will do what she can help me get to where I can feel better. I should find out next week if I get a referral. Then the next worry will be getting an appointment that isn't half a year away.

I've been off entocort now for 35 days. Previously, I made it 23 days and had to go back on. It's touch and go right now but I'm holding off for now. I find I have to be even more vigilent with what I eat. I'm hoping it wasn't a poor choice to discontinue since I'm finding myself in quite a stress mode lately with a possible job change after 16 years at my current job and some family health issues.

For someone who likes to be in control of everything I have learned I really have very little control over anything.

As always, I will just keep moving forward.

Post by **tex** » Sat Dec 13, 2014 6:30 pm

Deb wrote:In the end, she said it is my body and I need to do what I feel is best for me and she will do what she can help me get to where I can feel better.

That sounds good to me.

Your current endo doesn't seem to be much of an asset.

Tex

Pat · Post by **Pat** » Sat Dec 13, 2014 9:15 pm

Deb,

I was so happy last year when my dr gave me Armour( actually NP thyroid) but it never really made me feel better and certainly never raised my labs. Even my dr said I was feeling better because I was taking Cortisol. So he added the synthetic Levothyoxin and it doubled my FT3 and FT4. He took me off the NP thyroid and raised the Levo. I find out next week how that has worked. My point is be careful what you wish for because it might not work the way you are hoping.

Pat

Post by **tex** » Sat Dec 13, 2014 9:34 pm

Pat,

I agree with you that Armour does not automatically cure all thyroid ills (especially if the dose is not optimal).

I believe that the main problem in Deb's case is that she is simply being undertreated — she's being starved for thyroxine. But that's just my strictly-unprofessional opinion.

Tex

DebE13 · Post by **DebE13** » Sun Dec 14, 2014 7:49 am

I don't know if Armour is something that will be considered if I get the referral. I would like the opportunity to try it and see if it works for me. I read it's a wonder for some and others not so much. Even if it still remains out of my reach I need a doc who will listen to the fact that I am still not functioning well and adjust my meds. The worst that can happen is more makes me feel worse and I admit the cause is not related to being under treated.

I am open to checking my adrenals but no one else seems to be so it makes me wonder if they agree with me but their hands are tied because of what their text books say and are unwilling or unable to do anything further. I keep reminding them I have never fit inside their box and don't expect I ever will. The numbers game has become a very touchy subject with me so hopefully I will find an endo who is willing to try something else since it's evident my current course of treatment isn't optimal.....according to me.

My PCP seems genuinely concerned. I told her I feel 100% better than when I saw her pre-cancer dx and I have been using my post TT as the yardstick to measure my improvement, however, I cannot use that as my gauge anymore. It is not right that I should have to put twice as much effort into everyday tasks as everyone else and be totally knocked on my rear at the end of the day. I have the desire and drive to be active yet it continues to be that I am a trapped observer in my own body. I probably push myself and suffer the consequences more than I should but sedentary has never been a part of who I am. I work 40+ hours a week because I need a paycheck. I struggle through dinner and am on my butt for the rest of the evening. Ridiculous. I continue to plan out my errands because I often cannot do them all in a day and my energy level can drop in a flick of a switch. When that happens, I'm done and go home. I have become more a prisoner of my thyroid than of my MC. My MC makes me double think my morning running (which is when I have my most energy and, if running errands, less people. I rarely do the morning errands now because I need to hang around the bathroom until my routine is complete. It never fails, if I am in a store when the urge hits- I am furthest from the bathrooms and am in a panick of how to get there. As most have you have probably experienced, running or quick movements never help. At least with my MC I can wait it out then I'm good for the day. With this, my ass drags from the moment I crawl out of bed.

My PCP was the first doctor I've had that did not do the big sigh when I mentioned on-line support groups. Hopefully she can work some magic and I won't have to back to sqaure one.

DebE13 · Post by **DebE13** » Sun Dec 14, 2014 8:29 am

I could not purposefully get up at 2 am or I would risk not getting back to sleep.

My PCP messaged me asking if I would like to have a sleep study done since I mentioned I wake numerous times during the night and I snore. Do you think this would be worthwhile?

Initially, my gut reaction is to say maybe at a later date. I'm not really looking for any new problems to treat.

Maybe the better answer would be to hold off on it until I see how taking my meds in the morning instead of at night works out. She was not aware of when I take my meds. I continue to have severe shoulder and neck tension that I believe is linked to my surgery but those aches and pains do interfere with my sleep. Snoring is something I've always done. Maybe I have sleep apnea but I'd rather satisfy my curiousity about my meds first.

Post by **tex** » Sun Dec 14, 2014 11:57 am

Deb,

FWIW,

Incidentally, are you by any chance sleeping in a cramped or distorted position in order to avoid squashing a cat (or 3)? That could be adding to the shoulder/neck tension problem.

Tex

DebE13 · Post by **DebE13** » Sun Dec 14, 2014 12:32 pm

Haha, no I am protective over my sleeping space and am generally the one who takes up the most room. One cat sleeps at my side like a big furry heating pad and the other at the end of the bed with brief visits on top of my chest to get her ears rubbed. The other, thank God, prefers to perch on my husband. Although, the four pound runt would be much easier on my breathing than my 12 pound rescued baby.

Good thought though because critters can be invasive when it comes to sharing the bed. I make no accomodations for anyone. I am super sensitive to protecting my sleeping area because I know I risk a very long following day if I don't get my sleep. I can only sleep stretched out on my back and and have my pillow cradle around my neck to provide support. Ever since the surgery I find my neck kinks up easily for what seems to be no reason. My Total Gym has been a good tool for relieving tense muscles.