Re: Hi all, my results after I flipped to hyper from hypo...
Glad I could help - my advice is based upon my own personal experience and research as well as stories shared on the several thyroid forums I've participated on since June 2007.
Thyroid hormone levels tend to be higher at night and, now that we've seen your labs with your FT3 showing hyper, that explains most of your symptoms. (the swelling still has me puzzled)
And, you are correct, I think your symptoms are due to your levels, not your meds. There is a big difference.
You can look online for the side effects of Tap/meth to confirm.
So often, doctors overmedicate patients with Tap/meth and the patient winds up with what the doctors say is an allergic reaction - it's not an allergic reaction - it's an overdose response.
I think your current situation IS related to your over-range FT3 as you come out of being hypo.
And, yes, it is possible to still have hypo symptoms if you were hypo not too long ago.....I participate on a Graves' forum and we call your current situation "climbing out of the hypo hole". For whatever reason, it seems to take longer for hypo symptoms to dissipate than hyper.
And, while thyroid hormone levels are moving, we can have either hyper or hypo symptoms. That's why the "slow and steady wins the race" concept is best when dealing with thyroid disease - it helps minimize yo-yo'ing, thus minimizing symptoms.
Thanks for your kind words - we thyroid disease sufferers seem to be so poorly mismanaged with our care. I'm just paying forward all the great help I've received from other thyroid forum members since my Dx.
Re: Hi all, my results after I flipped to hyper from hypo...
I guess that makes sense, the having both symptoms from hyper and hypo at the same time...
I wonder though, is it because about a month ago I had a hypo Free T4 - or do you mean that it's because last summer I was still hypo?
It doesn't make sense that I would have the fatty tongue - a hypo symptom - for a long time, and then it went away the whole time I was hyper (from summer '10 to Dec '10), and then just a month ago or so it came back. Unless, it was because I was being flipped slowly into hypo again - the Free T4 was too low, and since then I've moved into hyper again. Can it be a residual from that recent time, still here because I just flipped recently?
Re: Hi all, my results after I flipped to hyper from hypo...
My reference to you still having hypo symptoms applied to your most event of going hypo - it's when thyroid hormone levels are moving that we can have hypo or hyper symptoms.
Moving thyroid hormone levels = symptoms....plain and simple.
If you had a fatty tongue before going hyper, it sounds like your meds dose and thyroid hormone levels weren't optimized.
I wouldn't say you were slowly flipped into hypo most recently. Think about it, you had been hyper for a few months, were started on a too-high Tapazole dose and then went hypo.
That was major movement in thyroid hormone levels in a short time. Then, your levels rebounded back hyper (not as bad as when you first started Tap but, quite the movement in both directions over a short period of time).
Forget that moving a few points in levels can cause symptoms - you had a major roller-coaster ride going on.....no wonder you feel horrible
Re: Hi all, my results after I flipped to hyper from hypo...
well, I sure hope that I get some understanding and some answers from the endo - and it would be nice to see some sympathy too - though that may be asking too much. Sympathy would show that she realizes what people go through while they wait to see her, and why they may want to bug her before their visit.
Oh, I finally got a call from her nurse practitioner - Thursday I'm getting home and the message is being left as I enter the house......I run for the phone (hoping to stop the message being taken and pick up the line to talk to him) and the message stops recording, and it promptly hangs up on the guy. Peeved beyond belief, I think, "well at least I'll hear his message", but nothing got recorded, because I stopped the message midway! Then I think, "he must be calling back", but no, nothing. So I stomp around the house - I waited 3 days to hear from them (and had to make an embarrassing plea for a call in the message)! I call their office back - and of course it's just a message, and I say that they need to call me back.
But, I'm sure that they didn't even listen to the message until the next day - because I never got a call back thur or frid. My appt is this week coming up - so what's the use anymore....
Now I'm imagining a quick visit with a rushed questionnaire from her, and an offer of bloodwork every several months! - that's just my pessimistic self showing through............again.
I've upped my Methimazole to 3.5ish - but I have to tell you that I've had major tremors today, and took the other 1/2 pill (making it 5mg for today). I know I shouldn't really be messing with the dose, but I was desperate to stop the shaking - and it worked pretty good, but I had to sit down and rest as well. I know that "slow and steady wins the race" but I feel like I'm all alone in this - my gen doc doesn't know what the hell he's doing, and my endo could care less, at least until I see her for the first time.
Re: Hi all, my results after I flipped to hyper from hypo...
Well, I have paxil - which is for anxiety and depression - but it's not a fast-acting drug - it accumulates in your bloodstream in order to work - so there is nothing gained by increasing it one day.
The other panic drug I have is Lorazepam - but even a 1/2 pill puts me to sleep for like 6 hours and then I'm groggy for the rest of the day - and can't even work. So that's not okay either - unless they make a micro dose of some kind...
I finally will be seeing her Thur this week, and frankly I don't know if I go in acting like nothing has happened (perhaps I will get better care this way?) or just give her the rundown of everything I've been suffering with since she prescribed the meds over the phone (and make her mad and not as willing to help...).
Re: Hi all, my results after I flipped to hyper from hypo...
I wonder if 1/4 of the Lorazepam might help......
(not sure what mg's your tabs are but, I've taken 1/2 of a .5mg alprazolam (similar med) and managed to avert the drowsiness that a full tab causes)
The good thing is, you'll finally be seeing a doctor - let's pray the doctor is knowledgeable about thyroid disease.
I feel for you with not knowing what to say/do on Thursday.....it would probably be a good idea to have with you a copy of the summary you did on here recently....not saying you would necessarily pull it out but, if it seems appropriate, it would be good to have in-hand.
Guess you'd need to get a "feel" for the doctor and take things from there. I always like "creative honesty".....I mean, you DID try to get earlier medical professionals to listen/help and you were desperate - thus the reason you changed your dose.
I'm confident you won't be her first patient to do this. I know I have friends and family members that have stopped meds cold-turkey due to side effects and told their doctors afterwards (you at least made an educated decision).....I would hope the doctor would understand and perhaps express a willingness to help you get back on track.
Think about it, if you go in, acting like nothing happened, she'll think the 5mg dose wasn't enough....and probably order a dose increase.
Here's a little of my "later-day" Graves' history that might prove helpful to you since I was in a similar situation back then as you are now......
Endo #2 (like endo #1) often overmedicated me with methimazole and I was tired of fighting with her for dose reductions.
I asked my GP about treating me but, he proved clueless.
I left endo #2 and took myself off 1.25mg methimazole since I was horribly hypo on that dose with low-in-the-range FT4 and over 30 hypo symptoms.
I then met with endo #3 - she, too, was clueless.
(she wanted me to resume methimazole at 5mg (!!!) due to my suppressed TSH (yet another doctor not familiar with what Graves' antibodies do to TSH)....
I was able to convince "short-lived" endo #3 to let me stay off meds for another six weeks due to my knowledge about the 6-wk. lag in TSH readings after dose adjustments. I knew my time with her was already over at that point 'cuz I was confident my TSH would continue to be suppressed.
I met my current doctor the following month. I explained EVERYthing to my current doctor during my very first appointment.... and she understood the motivation behind my decisions and agreed with what I did.....she understands thyroid disease - Graves'/Hashi's, etc.
You might as well find out now if your new doctor is compassionate and knows how to medicate properly for thyroid disease.
Tact and "face-saving" talk go a long way....
I wish you all the best on Thursday - please let us know how things go.
Re: Hi all, my results after I flipped to hyper from hypo...
(Also posted as a new thread...)
Okay, so this is probably how alot of people feel after visiting their endo for the first time - despondent, sad, ****** off, confused, stupid, and like it's you against the world out there.
Some highlights:
I spent 30 min with the resident - she took a history and did a physical exam. The endo comes in, and she's old - not a good sign, and we were done in 10 minutes. Oh, and SHE HAD MY BLOODWORK UP TO FEB OF 2011 - IT'S MAY 19TH!!!! - AND WAS NOT IN THE LEAST INTERESTED IN THE NUMBERS (which i was willing to share with her) OR TRYING TO UPDATE HER RECORDS EITHER.
Yup, I've been suffering with this for 15 years, it has ruined my life and she takes 10 minutes to tell me that:
I've been getting too much bloodwork done - only every 2 months is required;
I shouldn't be reading anything online - especially all the 'anti-establishment' health threads that are out there;
I also shouldn't believe anything I've read in a book- because people only write them to make money (not to inform the public apparently - and medical-school book authors make no money, right? - how many books did she read to become a doctor I wonder...), and you don't know their credentials;
The TSH is the most sensitive of all thyroid tests that are out there and therefore is the ONLY TEST SHE USES to see where you're at - she had me at this one
When asked:
1) what range will you be trying to get me into: in the normal range (DUH!)- anywhere in there and you're fine - where everyone should be.
2) what do I do for 2 months if I have bad symptoms: write them down, so you can keep track of them (for my own personal satisfaction I guess).
3) can you please check my adrenals for problems: no, I see no reason to.
Other "COOL FACTS":
"we don't test for the TSI (TRAB) here - it's not necessary".
"we don't need to do a needle biopsy - your goiter feels fine."
"since you don't feel so good on the Methimazole, what do you say we just stop everything cold-turkey and we'll see you in 2 months and see how you're doing?" (I almost dropped my mouth to the floor - WHAT!!!! She's basing this on my history of feeling better when I was mildly hyper).
INFO I DIDN'T BOTHER ASKING ABOUT, WANTED TO BUT DIDN'T SEE THE POINT, AND SHE DIDN'T BRING OUT EITHER;
*Anything about PTU, block & replace, RAI
*Anything about what symptoms to watch out for that are concerning
*Anything about what the correct level will feel like
*Anything about what her course of treatment of me will be
*Any new research that I brought with me
*My migraines and how they are worse and what to do about it
*My excess stress and how to cope in the meantime
*Who do I call if I have a question
HAVE ANY OF YOU HAD SUCH A PERFECT EXAMPLE OF A USELESS ENDO VISIT - I BET I'M IN GOOD COMPANY?
Last thing we discussed: how many endos work in her clinic, and what to do if I want another doctor.
