Graves' Disease Support Group

Question of the day - how are you feeling?

Honestly, if you're like most people, you are probably not feeling competely like your old self.

Why do I say this? Your labs.

I'll forget for now that your doc didn't run the right labs this go-round 'cuz the ones that were run give an inaccurate picture but they do provide a slight inclination.

TSH should be ignored with Graves' disease - I explained why in my "First Step after Diagnosis" thread.

Look at your other 3 lab values - they're all at the lower end of the range. In fact, your FTI is below the end of the range.

If I had your labs, I'd be on my knees right now and not functioning well at all.

Most people feel best with those levels at mid-range, at least.

When we are diagnosed, our docs look at our levels and, uses standard medical dosing procedure to determine a starting meds dose.

That dose needs to be high enough to get rid of all the excess thyroid hormones currently in your body.

As you were becoming hyperthyroid, your thyroid was producing more hormones than your body needed to function, thus the accumulation.

Once that excess is gone, the goal is to find a dose that will maintain things.

On average, if a person takes the appropriate starting dose, those excess hormones are gone within 8 wks and thyroid levels (not TSH) get in-range.

So, once your levels got in-range (back in September) your dose should have been reduced.

Your doctor should have cut your dose back after reading the labs from September......did you feel better back then?

I'm glad he's cutting it back now - it might still be too high....you want to find a dose that will keep those levels in the middle.

Minimally, you need to have FreeT4 and TSH run every 4- 6 wks.

Even though we don't look at TSH for dosing, it is helpful to monitor because it can reflect the progression of your disease.

FreeT4 is the most reliable indicator of thyroid function - and finding your "best place" FT4 level is like finding the right size shoe.....some people wear larger sizes, some smaller.....
and there is one size that is the most common.

Since you didn't know your "thyroid shoe size" (best FT4 level) before you got sick, it makes sense to "try on" the level at which most people feel best (mid-range FT4, at least)

Then, if the most common "size" level is uncomfortable (aka you have symptoms), you tweak your meds dose to find the best "size" (FT4 level) for you.

I hope you're getting your next labs done within 4 wks max because you don't want your levels to go any lower - they need to rise.

Hopefully, you can get your doc to run the FT4 and TSH minimally next time....it would be great if the doc runs FT3 as well....if not, T3 or total T3 is the next-best thing.

Carol

These are for the most part outdated tests. You need the tsh,Free T-4 and Free T-3. You are below the range in a couple, how do you feel? Are you tired, constipated, cold,a little depressed,or anything?

Hi Carol,

Thanks so much for the insight. I had noticed my September lab values were in the normal range compared to the current values being low, and wondered about that. My endo seemed to be focusing on TSH only because his assistant today said he was pleased with my labs. I have requested that he run antibodies, but so far he has ignored me. He seems to be more invested in the diabetes side of his practice, and it feels like Graves patients are a bit of a nuisance for him. He seems only minimally interested, and wants to do whatever is easiest for himself regardless of my requests or wishes. I do intend to shop for a new doc.

You asked how I'm feeling. There are several responses to that. Compared to July, when my a-fib and SVT were out of control, I feel amazing and energetic. But I am tired all the time. That's in part because I work 12 hour shifts, and I'm horribly burned out on my job. But it's a job with a steady workload and a regular paycheck, so I put up with it. My free time is before 10 a.m. and after 10 p.m., and I try to cram everything I need to do into those shosrt hours. I'm also tired because of the time of year. Between Halloween and Christmas I'm always up late crafting and making gifts (to save money) and on the weekends I always seem to have a hundred errands and chores to do. I just push through it and look forward to December 26! I'm always tired at this time of year. But as I said, compared to July, before meds, I feel like a whole new person.

I will reduce my methimazole dosage starting tonight, and I go back in for a new lab draw in 6 weeks. I'll try to choose a different doc between now and then, because I need to feel like my doc is interested in my care and will actually listen to what I have to say.

Thanks again for your comments - it was way more than my own doc has ever said to me!

Pam

Wow Pam - can't believe all that you do!!!

Glad I was able to help some.

Gotta tell you, you might want to try a GP, internist, DO or holistic doc next.

Forum peeps kept recommending this to me.

Endo #1 was an arrogant idiot who overmedicated me. After he increased my dose "to bring the TSH up" (DEAD WRONG), my FT4 dropped to the lower end of the range and I felt horrible.

He wanted me to continue at that dose for another 8 wks - no way!

Enter endo #2 - she supposedly worked with me and the first year wasn't too bad but, this year, she just wasn't liking the fact that my TSH hadn't "returned" (it really isn't "expected" to return necessarily) and her dosing decisions made me hyPO for much of this year.

Endo #3 lasted until she read off the results of the first set of labs she ran for me.....she made an incorrect conclusion about them, she made an incorrect assumption as to the cause of them and her dosing recommendation could have very well put me in a coma. It's scary to think how a first-ever patient would fare under her care. She's history.

I finally took the advice of forum peeps and met an internist....she understands ALL things Graves' and even made the comment "We know not to look at TSH with Graves'" She's a keeper!!!

As you search for a new doc, you can keep getting labs with each one and we can help you with dosing decisions - hopefully, this will buy you some time with each doc (just insist on certain dosing, as I did with endo #3 - when your demands are backed up with facts, there's not much they can do)

Those links I provided in my thread "First Step after Diagnosis" are all the "ammo" anyone needs for a doc "stuck" on TSH.

Good luck!

Ooops...forgot one thing

If you are planning to reduce your dose to the 5mg twice a day the doc recommends, please get your labs done in 4 wks.

10mg total/day is the higher end of the common maintenance dose range (2.5mg - 10mg MMI)

You want to make sure that the 10mg/day gets those Free T's up.....it might just maintain where you're at now so it's important to lab sooner.

Sometimes, we don't feel the effects of new hormone levels and the symptoms lag a bit.

I don't want you to feel any more tired than you do now with the holiday season approaching.

Food for thought.....

yes for sure like CD said you do a LOT! Just keep in mind like she said symptoms may lag behind labs so just be aware of extreme tiredness and the others I mentioned. A doctor who listens and is compassionate and willing to work with you is very important with Graves.