[catstuart7]

in reply to: brain recovery time? #1175565

Guess this problem doesn’t resonate with anybody?

[catstuart7]

in reply to: * Undestanding Thyroid Stimulating Immunoglobulins (TSIs) & GD * #1175550

Vannillasky, there’s a study out there that I saw a bit ago but didn’t save the link for that shows the rate of antibody decline for RAI vs. surgery over a period of ten years. For most people they do decline though it takes a few more years with RAI. Like everything else with GD there is no option that guarantees certain results though.

[catstuart7]

in reply to: FT4 and FT3 question #1175518

Hi Naisly, that article looks very interesting – I’ll have to gather my mental energy for it (about to write a post on that next) but it looks worth it!

This gets a little off the subject, but looking at what you’ve been through with your labs it looks rough! How are you actually feeling day-to-day with such a high TSH and low FT’s? Are you still on any anti-thyroid drugs?

ETA: I’m still on a steady dose of beta-blocker 12.5mg of metoprolol once a day that I’ve been on for many months.

[catstuart7]

in reply to: TT #1175482

You guys are right, out in the world Graves is rare. I spend so much time on boards reading and thinking about Graves it feels suddenly common to me! At my last thyroid ultrasound I asked the technician how often he scanned people with Graves and he said I was the third in his seven years of doing the job.

[catstuart7]

in reply to: FT4 and FT3 question #1175529

Naisly wrote:

Also could be the time of day your getting your labs done. In anycase your body makes the FT3 on as need be basis. In other words, FT3 fluctuates through out the day. So if you got your labs done at 8am, then 2pm the next time, your FT3’s might be higher or lower, depending on what your body wants. Its not an issue, We as GD patients need to work on the FT4’s and the FT3’s will fall into place once we find our ‘set point’

Actually I don’t think the FT3 jumps around like that based on my experience so far – it has a half-life of 2.5 days – FT4’s half-life is 6.5 days. My labs over the last six months have shown that my FT3 reflects whether I’m hyper far more than the FT4…

For example:
My labs on 11/5:
FT4 1.2 (.8-1.
FT3 3.7 (2.3-4.2)
TSH 0.14 no range given (previous TSH on 9/27 was .45)
(at this point I was developing returning hyper symptoms, angry, light-sleep, overeating tons of reese’s miniatures, and losing weight!)

My labs on 11/28 (done early due to feeling sick, dosage of methimazole had been raised 25% after the 11/5 labs)
FT4 1.0 (.8-1.
FT3 3.1 (2.3-4.2) (A drop of 0.6!)
TSH not done
(and now I feel much more hypo, gained 3 pounds so far)

So the FT4 only moved by 0.2 but the FT3 moved by 0.6! When I was initially diagnosed with GD, my FT4 was at the top but in normal range, but my FT3 was out of range and relatively much higher. I’ve generally found this pattern to be consistent that my FT4 moves by small amounts and the FT3 by big ones and it seems so strange to me.

Thoughts???

Edited to add: On top of Graves I also have a hot nodule as well, not sure if that effects this picture.

[catstuart7]

in reply to: FT4 and FT3 question #1175527

Hi all, thank you all for the awesome analogies and discussion so far! Unfortunately though no one has directly answered my question…and to be fair maybe no answer exists.

The simplest version of it is how can a person have low FT4 while having high FT3?

[catstuart7]

in reply to: How long does a Methimazole dosage change take to reflect on a blood test? #1175486

Hi Emmtee, I find that a methimazole dose change hits me in 5-6 days, a PTU change in 3-4 days. The FT3 and FT4 should reflect right where you are at on a given day but because thyroid hormones have a few days half-life you wouldn’t want to be tested for at least a week after a change, but the TSH can lag behind as much as six weeks. So I’d say like Bobbi, that you need to tell your doctor you’ve made changes if you are getting blood work done within six weeks (or at least 4 weeks) of a dosage change so they can make the right conclusions. Still I get the bind you are in…I am in a similar one that in the past (pre-Graves) I’ve always calibrated what dosage of meds works for me pretty accurately and then shared that with my doctor. But with anti-thyroid drugs and all the frequent monitoring and high-stakes we aren’t free to be the lone ranger anymore. I personally feel I can tell when a dosage is too much or too little based on my symptoms but it still can get dicey when you have a mix of hypo and hyper symptoms at the same time. So ultimately best to have a doctor you’ve got good communication with.

[catstuart7]

in reply to: What causes a bad day? #1175446

Hi Vanillasky, sorry to hear you are feeling so bad and can’t take beta blockers. I wanted to share a technique that I found to help my arrhythmia long before I started beta-blockers, it evens out the rhythm and slows things down square breathing There’s probably a better link out there, but this might get you started. Puran Bair has a book about it.

Somehow the linking of timing your breath with counting the heart beats calms things down.

I find I feel chills and cold when I have a fever so maybe you feel so hot because you have a low temp?

[catstuart7]

in reply to: Doctor won’t run CBC and Liver tests while on Tapazole #1175426

Just to share my experience I’ve seen two endos so far and both were willing to run those tests – though one said reactions with PTU particularly happen in the first three months so frequent testing after that was less needed. To put your mind at ease you could have your primary care doctor run those tests. It means a lot to me to have those tests run…Adenure can correct me if I’m wrong but I remember that she had no symptoms while her liver values were going wrong. Who wants to wait till they get symptoms???

ETA: I’m taking methimazole right now and have had a persistent sore throat this week and am waiting on results for those very tests! I’m hoping it’s just a cold.

[catstuart7]

in reply to: Using both Methimazol AND Levothroid to manage Grave’s? #1175416

WWW12, I’ve heard of what you are doing as called “add back” therapy as opposed to block and replace. Adding back…some thyroid hormone.

[catstuart7]

in reply to: Acupuncture/Chinese Herbs #1062649

I tried a course of acupuncture recently and here’s what I found… It is best suited to help with the symptoms one might be having at the time and general strengthening and helping anxiety but for me it did not impact the actual labs. Another caution is that many acupuncture techniques work to stimulate the immune system (which we sure do not want with Graves) and my acupuncturist had to come up with a custom plan to avoid points they would normally use. So if you get it make sure you see someone who understands not to stimulate the immune system. So would I do it again, maybe, but I don’t see it as curative more of a supportive therapy one can do in addition to other efforts.

[catstuart7]

in reply to: Saw Endo this morning–off Methimazole! #1175229

One more idea to throw into the pot – I’ve noticed that I have real symptoms of hyper or hypo that occur based on the shift of the hormones even outside of the fact of where they are in the range. When I had the initial fall of thyroid hormones from being hyper I had significant hypo symptoms, but I was still in the normal range -even the upper part. When my levels bump up some, still not hyper, I’ll have some of the hyper symptoms. I think this can complicate (on top of everything else!) how one views where things are at and side effects of the medication itself.

[catstuart7]

in reply to: weird throat sensation #1175345

Naisly, yep that sounds very similar to what I am feeling thanks for sharing details.

Laurel, my docs mostly say my nodules are on the inside wall of my thyroid very hard for them to palpate but last ultrasound showed many small nodules. No worries though I won’t poke at them!

Thanks to both of you…feeling a little calmer about it today.

[catstuart7]

in reply to: weird throat sensation #1175342

Thanks Naisly! When I feel my neck or look in the mirror I don’t see a difference but then I am a little, ahem, plump and that might mask things. Could you feel the goiter with your fingers or see it or was it just a sensation of internal pressure? It’s good to know it should get better once thyroid levels are in the right place. Oh and speech, yes, I am very hoarse and feel like I have to force my voice out – thought it was cause I had been coughing but it is odd.

ETA: so was it your thyroid levels being too high or too low that causes the pressure for you?

[catstuart7]

in reply to: antibody.for.graves.test.came.back.positive. :( #1175353

StacyA wrote:

I am meeting with the endo Monday to discuss the plan … what should I ask her aside from the obvious?

I’d ask…
– which test does she use most to determine dosage changes? (if she says tsh only proceed with caution but sadly many endos seem not know that in graves the tsh is unreliable)
– how much weight does she give your symptoms in determining dosage changes?
– how often will she test your TSH, FT3, and FT4? (and if she’s not doing free t’s why not)
– will she be willing to do TSI testing and wait until it is low before letting you wean off the medicine to try for remission as opposed to a rigid timeline like 12 months and then you are off it

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