Graves' Disease Support Group

Hi!
Your labs look good to me. It sounds like your doctor may be trying to dose you based on TSH. I have not personally felt too good when my doctor has done that to me. If my FT4 goes down to the lower end of the range, I go hypo and feel terrible. I hope you get this sorted out, soon! Give your doctor a call and ask for a reason just to be sure, and let him know that you are feeling well on your current dose.
Take care!
Hannah

Hopefully One of the VIP's here will answer ..But your labs look pretty good ...More meds ur gona drop into hypo.

Hi...the important thing here is...how are you feeling? Ive been working so if you have posted that... I have not seen it. The amount of PTU that you are on right now is a maintenance dose. Since everyone is different...how you feel plays a big role. Big Hugs...Kathy

OK....

Thyroid Stim IG stands for "Thyroid Stimulating Immunoglobulin" which is one of the Graves' antibodies.

When looking at the reference interval, please realize that
the 130% positive means that you would be at the point to having symptoms of hyperthyroidism....109% or less means negative re possibility of symptoms but that doesn't mean you don't have Graves'....some people do not have symptoms but still have Graves'

74 still means you have Graves' - think about it, would "normal" people have ANY Graves' antibodies??

The only valuable labs for Graves' disease are the Free T4 & Free T3 - those are the most reliable indicator of thyroid function.

Your labs are in-range....question of the day - do YOU feel well now?

For me, personally, those levels are a little on the low side but, thyroid hormone levels are like shoe sizes......women's shoe sizes range from a 4-10.....the "average" woman wears a size 7 (middle of the size range). That size 7 woman wouldn't be comfortable in even a size 6 nor a size 8.

Most people feel best with a mid-range thyroid hormone level (size)....but, those of us with "smaller feet" can be comfortable at lower FT4/FT3 levels and some feel comfortable at higher levels.....all within that same "shoe size range"

The doctor wants you to increase your dose because your TSH is suppressed.....this is DEAD WRONG.

I've explained this concept in detail (including links to medical journals for documentation) on another thread called "First step after diagnosis".

Please read it - I think it will help you understand why suppressed TSH is to be expected with Graves' disease and should NOT be used for dosing decisions.....there are other "goodies" in there as well.

Seems to me you're in a very good place as long as you feel well there.....if it ain't broke, don't let a doctor try to fix it.

We've all had docs mismanage our medications and we suffer as a result.....try not to join the statistics.

All the best,

Carol

Thank you all for your posts! cd3764 that makes sense regarding the Grave's disease diagnosis. I was questioning why he would diagnosis me with it when the labs stated 130% and over was consistent with Graves. The real confusion of the day is this.. I have been OFF ALL my meds since October 5th so they could preform the Thyroid Uptake Scan (had I found this board prior I would have declined the uptake) and I'm currently still OFF my meds and I feel better than ever. Much better than on my PTU at 100mg a day. I felt just ok on the 100mg of PTU but feel great without it. I go back to the doctor on Monday and I'm going to demand labs to see how my levels have changed being off all my meds going on 6 weeks now.

Can someone please explain to me how remission works? If my levels are within range and they take me off my meds and they stay within will this be considered remission with my TSH off? I have read recently lots of items regarding TSH should not be used to treat Graves due to it not being a good indicator on how to treat us. Will my TSI always be the same or will it change throughout the years. I was not sure how your TSI would work if you were in remission.

100mg PTU is the higher end of the range for a maintenance dose.....maintenance doses range from 25 mg - 100 mg PTU.

So, if you just felt "OK" with the 100 mg and the labs you posted corresponded to that, I bet you the reason you're feeling better is due to the fact that your FT4, FT3 rose to a better place for you.

Remember, most of us "average-shoe-size women" feel best at mid-range FT4, at least.

I, too, went off meds around the same time as you last month....and am waiting for lab results. I went hyPO on the MMI equivalent of 12.5 mg PTU so HAD to stop meds.

Taking a peek at your latest-greatest is appropriate now, more so than ever.

Elaine Moore (Graves' guru - think I told you about her) tells us that remission is likely is TSH is higher than .4 However, many people have been in remission for YEARS and there TSH did not "come back"

Most often, looking at TSI is helpful. You are very fortunate that your doc ran this......if your TSI is 50 or less, there is a chance you are in remission.

You are in great shape with TSI 74......you probably need to resume a lower dose of PTU for awhile and just might be well onto your way to remission!!!

You know what? While I think remission is wonderful, we still need to get regular labs for the rest of our lives.

So, even if we don't go into remission, we can just resume appropriate doses of meds and keep getting labs.

All the best,

Carol

Thanks Carol, and per your advice and others I immediately ordered the Elaine Moore book on Monday and I'm patiently awaiting it's arrival. I will post my new labs next week after I insist on new labs on Monday.

Thank you all so much, this has been such a helpful site, just wish I would have found it sonner.

yes a TSI of 74 is very good, mine was 109 to start so you can have Graves and symtpoms at that TSI. Normal people don't have TSI.Your frees are low, you shouldn't be upped you should be lowered if anything. Your tsh is barely out of range,I would wait to take meds like you have been doing and see what labs show.Good luck hon,maybe try just 50 ptu after this )if you need it) then maybe 25 after that.

Momtoone,
From what I have learned about remission is that you have very low to no more antibodies and a steady thyroid levels and you feel great.
I would get those labs done on monday and hopefully you are feeling really good when you have them done. That would catch your set point ( or your perfect shoe size as Carol has put it) THat way if ever you have to go back on meds you know what to shoot for. THat would be really great and over half the battle there for you.
I too, think your doc is trying to dose you on TSH. Don't let them do that. GD antibodies mask the TSH so it is unreliable.

Here is to hoping you have hit remission and that it is a permant one too!!

Hugs
Angel


Carrol,
I love how you explained the labs and she sizes. That was great!!

Thanks so much everyone. I'm going to be more proactive in my care. For the past many years I would just go to the doctor sometimes feeling good sometimes not feeling good and I would just do what they told me without ever questioning a thing about it. I would sometimes go in feeling great and then they would want to increase my meds and I just did it thinking if anyone knows they do. WRONG. I will not change my meds without first reading my labs for myself and will be keeping a strict journal on how I feel at what levels and what dosage so I can help in the doctors decision. You girls and gals are all wonderful with a plethora of great information.

and Carol..I think in one of my previous posts I had written that I had never been to the doctor where she DIDN'T change my dosing and almost everytime he increased it on all different levels (more MG, more pills, etc) until one day back in May of 09 I stopped all my meds to see how I would do and in July 09 is when I went back and she said my levels increased so she started me then on the lower dose at 50mg twice a day. I think in your reply we miss communicated and you read it as they had NEVER changed my dosing. I just wanted to make sure you were reading it correctly so you could understand my situation all the better. Thanks so much everyone.