New to the group - With Graves Disease - not a question just a hello

[mzizgayle]

I am mzizgayle, developed Subclinical hyperthyroid 2 years ago and antibodies showed it was Graves disease.

Even tho I was subclinical I developed symptoms and was put on 2.5 mg of methamazole which did well until my last blood work showing my TSH went from 2.31 to 1.76 and my Ft4 went from 1.03 to .8 so I guess I am now heading to hypo...so much fun trying to manage this and diabetes at my ole age.

Of course having doctors who think "immaculate TSH belief" is even more fun, but I have a new doctor and will see him in Nov so we shall see how he thinks

So hello to all

[Barb135]

Well, yes, of course, it's best to laugh about things, if you can; a lot of people aren't capable of laughing at themselves.

Don't you think we all have a bit of "alien" in us?  LOL  We're all so different from one another that there are no "givens" in reaction to things.

[mzizgayle]

LOL, better than crying over it, humor is the best way to go.  

I tend to have a wicked sense of humor at times and with my diabetes I do make jokes etc, figure after 17 years I can.  One group I was in was full of people who were so down and about had a hissy fit when they read one of my journal entries making fun of the alien within me ROFL.  Told them I felt sorry for them and then left it.

Our hospital is getting so huge, I think they are becoming a dinosaur, good thing my primary is at the smaller hospital we have also, but they don't have a endo on staff so I have to go to the other, and our internist at the clinic is very capable of handling thyroid, etc but she is not taking any new patients at the moment.

[Barb135]

I was just curious about the TSI.  Many people actually have Hashimoto's, which is most often associated with hypothyroidism, but is often characterized by periods of hyper in the beginning.  Even so, most doctors automatically diagnose Graves, with any hyperthyroidism.

Methimazole is working to reduce your thyroid hormone, so if I were you, I'd do as the doctor says and cut it down, because your FT4 is dropping too low.  While your TSH is "headed" more toward hyper, if you go by those 2 labs, it's actually a long way from "being" hyper, unless you have hyper symptoms.  My endo would love it if my TSH were 1.76.

The thing you have to remember is that TSH is volatile and can vary as much as 75% over the course of a day, so it's not a surprise that it would be different on each test. There's almost always going to be some variation.

We have quite a few members who are quite sensitive to meds and not everyone presents "standard" symptoms.

Unfortunately, many of the teaching hospitals are not good when it comes to treating thyroid, because the treat the way they train, and that's mostly TSH.

Not sure what happens in Nov, but it sounds like you're having fun with it.  

[mzizgayle]

thank you  for the welcome.  I had my TSI tested once in the beginning and it was higher than the base 140 ( I tested 154)  they also at the time did a eag ? 108.7

My eyes have changed and were at 16-17 meas. at time of diagnosis and a year later I was at 19 and 20 which they said just under poor lid hygiene.

Graves disease does run in my family.  My sister ended up having her's killed by radiation.  Mine has not got to that point, but I have been taking pictures of my thyroid at various times to show the doctors since some days it's really swollen, other days not so much but you can always see it (hubby thinks I am nuts)

My last T3 (not the FT3) was done12-08-12 and it was 111 (75-170), my tsh was 2.31 ( .27- 4.3), with my Ft4 at 1.03 ( .90 - 1.6)

Was doing ok at that range level but the endos here seem to think if you are with norm, you are fine at whatever level...The one I had who did listen to me, ended up going to a hospital at Cape Cod.  the next guy said "once a year is fine, see you then...well of course knowing with methamazole you have to be tested every couple months to make sure things still going good.

So I basically had to force my family doctor to run the tests and all she gave me was the TSH and the FT4 which I had posted.

I do not react the same to meds etc as other people, my body is weird in that respect, I am medicine sensitive and I don't present with the most common symptoms of a disease so I am very compulsive when it comes to my health and I learn whatever I can so I can be informed and not accept what the "doctors here insist on" and to think they are a big teaching hospital in the area.  

At least my family doctor does listen to me, sometimes lol, not at me but she does not feel confident about handling my thyroid issue which has given me some concerns.

but come November I will be armed with ammunition and they will listen to this old lady ROFL...

so for a question - since I am heading back to hyper if you would base by TSH and I am heading towards hypo based on my FT4  do I continue my dosage as normal or go with what the other doctor says, cut it down?

[Barb135]

How rude of me -- I forgot to say hello.  Welcome to the community.

[Barb135]

Actually, since TSH is counter intuitive, your TSH is headed more toward hyper, while your FT4 is headed toward hypo.

Have you ever had FT3 tested?  FT3 is the active thyroid hormone and much more closely relates to symptoms, than either TSH or FT4.

Would you mind telling us what antibody tests confirmed Graves Disease?