Graves' Disease Support Group

Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...

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scorpiogirl76 07/13/2010

Hello to my wonderful support forum :) Where would I be without you all? Probably lost in a hold somewhere in outer space without a clue. lol. Well, I had my labs drawn on July 8 again and here are my results:

July 8, 2010 Labs:
Free T4: 0.8 (range 0.8-1.8)
Total T3: 96 (range 76-181)
TSH: .39 (no reference or range available)

Lowered PTU to 12.5 mg odd days, 25 mg even days (alternating). Propranolol 5 mg (twice daily).

Saw my Endo today and she says that according to my tsh that I look a bit hyper still but according to my T4 and T3, I look like I'm going hypo. This is a new endo and I had always had Free T3 and Free T4 run. I see she did a Total T3... Is there a difference?

She said that I am on a an extremely low dose of PTU and in normal circumstances, she'd have taken the patient off to see what happens with the levels but since it seems my levels are maintaining and I have come this far that we'll keep dropping the dose for now. She had suggested lowering my PTU to 12.5 mg daily for the next 6 weeks and I requested to alternate days (12.5 mg on one day, then 25 mg on the next day, etc) as in the past, when dropping my PTU, my levels usually go up and I'm willing to take as long as it takes to achieve remission even it means moving slower than usual. So, she agreed to it. The past 3 weeks, I had been skipping my morning dose of PTU once or twice a week due to feeling extremely tired some days and extreme joint pain.

What is your opinion? Do you think this is the right route? I always hear in this forum "slow and steady wins the graves race". Also, she noticed my thyroid felt a little swollen (enlarged, mushy) but said it could be something viral so we'd ultrasound it on my next visit. I asked if it's possibly i'm going hashi now and she said it's always a possibility but we'd have to wait and see.... WAIT AND SEE??? ARGH. What could be causing my thyroid to get enlarged now? Could it by that I'm too hypo? Should I go off the PTU for a day or two and then start on my alternating doses? Any advice is appreciated. I'm so confused after today's visit.

I had mentioned to the endo about my joints hurting from day to day in different areas (especially my hands) and mentioned that I've been extremely tired/fatigued to a point I can't function, I've gained 5 pounds in 5 weeks (pound a week) but haven't been really eating a whole lot of junk. I don't mind the weight gain as I needed it after losing so much weight last year when I had the storm.

Now, also, I am wondering if it would be okay to start excercising? Such as jogging? or working out again? I've held off due to my heart rate going up but now that I seem to be going hypo, do you think I could start again? I was considering seeing a cardiologist for a stress test first, do you think that would be the better route to go?

Sorry for all the questions at once but this has been a crazy journey and I just want to be normal again... whatever that may be. My endo did mention that my body seems confused as to what normal is. I mentioned being hot sometimes or being extremely cold other times when everyone else is the opposite. My hands have been very dry and some days my face is dry and other days, it's so oily. It's always one extreme or the other... no middle ground here. And her answer was, it sounds like my body is confused and trying to metabolize to what normal is. So what does that mean?

Thanks so much for all your advice and your patience with my many many questions!

~Hugs to all

mmztcass 07/13/2010

If it were me, I'd want to drop the PTU dose to 12.5 mg daily taken twice a day.

Swollen thyroid to me has always been a sign of thyroid levels off either hypO or hypER.

Your doctor shouldn't be looking at the TSH and telling you that you are hypERish. Should be looking at the Free Ts, period. Okay?

Then Total T3 not the right test to run because it is affected by our hormones, our diet, etc. Free T3 is better and is not affected by these things.

Run the TSI and the TGAb (for Hashi's) and see what's going on.

{{{hugs}}}

scorpiogirl76 07/13/2010

Thank you MMZ. I appreciate it. WIth your advice and a few others on here, I have come this far and managed to stay sane thru this journey. I will opt to drop to 12.5 daily in divided doses (wow.... that's a teeny dose twice a day....) . I will lab again in 3 weeks (or do you think that's too soon and I should wait til 4 weeks or even longer?)I am so sensitive to the slightest change in meds and am worried about going hyper if I wait too long to lab again. I think that's why the endo agreed to let me alternate my dose daily so that it's a gradual change if any versus a jump. What do you think?

mmztcass 07/13/2010

Three weeks should be fine to retest. As for the doses, use your discretion on how you feel. Though at a lowest end of range for the FT4 of yours, this is what I would do for myself.

{{{hugs}}}

dairytech 07/13/2010

Like mmz says...you are hypo on a very small amount of PTU..I would also reduce the PTU on alternative days. Although the rule is not to pay attention to the TSH....you are indeed making some. Since you are hypo its a false low. Chances are that if you lowered you meds your FT's will come back up and so will your TSH...which is an indication remission is close. Yes...slow and steady wins the graves race. I also agree that your thyroid could be enlarged and mushy because you are hypo but having an ultra sound is a good idea. Insist on having the FT3 run instead of the T3 and lab in 3 or 4 weeks. If you are still hypo on this small amount going off meds to test remission might be a good idea. Big Hugs...Kathy

scorpiogirl76 07/13/2010

Thank you ladies. I also posted to Elaine and she wrote this back:

Hi Andrea,

The recommended reference range for TSH is 0.3--3.0 mu/L, but in people undergoing treatment for Graves' disease a low TSH does Not mean that you're hyperthyroid. You're considered euthyroid (normal thyroid function) when FT4 is in range regardless of the TSH level.

Your thyroid hormone levels are too low and are most likely causing your enlarged thyroid, joint pain and weight gain. Your FT4 should be at least at mid-range, and if it rises, FT3 should rise as well. T3 is usually falsely elevated in women so your level of FT3 is probably lower than the T3 suggests.

I like your doctor's idea of using 12.5 mg daily. If this dose is too high, you'd go to 12.5 mg every other day. If after 6 weeks on a dose of 12.5 mg every other day, if TSH is within the normal range (at least 0.3) you'd be considered in remission. You could already be in remission but the usual protocol is to stay on a very low dose of meds until you're secreting TSH normally. best, elaine

* So with the advice of MMZ and also now Elaine and my endo who suggested dropping to 12.5 mg daily, I will give it a whirl. I will order my labs thru mylabs.com in 3 weeks and post results then again. If my tsh is still maintaining and I am still not at my happy mid point with Free T4 and Free T3 and still hypo, then I will drop to every other day of 12.5 mg and retest 4 weeks after that and go to my follow up with my endo... sounds like a plan?

PRAYING PRAYING PRAYING for remission here and no relapses. I am thankful every day to have this forum as a part of my life as I wouldn't have come as far as I have without the knowledge that so many of you have shared with me from day 1. Thank you from my heart.

~HUGS

bransnana 07/13/2010

Hey hon.. did you ever get tested for anti tpo and anti tg antibodies? It could be you have both Graves and Hashi's and are making blocking antibodies to the TSI now. If you still are making tsh after being on the 12.5 that is very good and may mean remission. Sometimes we can go hypo for awhile after atd's. My tsh was still in the high 2's a month after stopping meds. We'll see what happens in a couple of months with no meds. I did go real slow with the getting off meds. First 1.25 everyday, then 4 times a week, three, then two, then off. I did this for almost a year.(weaning off) I was being very careful but it didn't hurt I feel.

scorpiogirl76 07/13/2010

Hi Brans. Yes, I was tested when I had the thyroid storm and that's how I found out I have Graves but haven't been tested since. I think my labs are posted in my journal from day 1. I'm moving slow... and praying this is remission. I don't like the idea my thyroid is enlarged after having had a huge goiter in the past that shrunk tremondously. Hoping the enlargement goes down as my levels come up. I skipped my PTU dose for tonight (12.5 mg) and will start my split dosing tomorrow night (12.5 mg daily) so I am going to skip my am dose as well tomorrow. Hopefully that helps some.

bm55 07/14/2010

I know it is such a rocky road trying to get on the right doese, and we have to watch our symptoms very closely to not go hypo or hyper.

The doc I had in 2002 pretty much let me dose myself on PTU cause he just did not know how I felt. He wasn't worth a poot when in came to thyroid anyway.LOL

scorpiogirl76 07/14/2010

Hi BM. The endo I have is new to me but seems to be pretty well versed so far as I found out before going to this endo that she had a thyroid issue herself in the past so she can relate to the symptoms or feelings . So far, she's letting me take my own action since my endo in my old town pretty much did the same and it got me this far. I use this forum as a guide for my dosing, etc. and so far, it's done me good so I can't complain :)

bm55 07/15/2010

Oh ok it is great that you have a doc that has thyroid problems. Good luck to you.

scorpiogirl76 07/18/2010

Okay, more issues. So, I lowered my PTU to 12.5 mg divided daily and lowered my propranolol to 5 mg in the morning and 10 mg at night. I had initial chest pressure and pains but I usually always get that everytime I lower my beta blocker... a wonderful side effect that I always endure... anyhow, i had to call the endo as one night I felt panic set in, anxiety go up, but heartrate was good at 65 although palpitations were present. I had major cramps in both my calves and the next day, got them in my arms as well. Upon contacting the endo, I was told that I needed to increase my PTU back to 25 mg as it was possible that my body was too sensitive to the reduction even though I was overmedicated which caused me to go borderline hypo (per my endo on the phone). So, I increased the next day and got the arm cramps as well as headache and worse leg cramps and cramping in my shoulder (I felt like it was all over). My throat (thyroid area) is also sensitive to the touch and I can feel it's slightly swollen. The day after the cramping set in, I lowered back down to 12.5 of PTU daily (divided) and skipped my morning dose of propranolol. I had no cramps that night... Thank goodness. So, here we are today and I am wondering if all these symptoms are from being hypo or are they from my levels possibly increasing too much now due to the reduction in meds? I am SO SO SO confused and I feel miserable. I have horrible insomnia. Last night, I felt like my heart (or was it just the chest area) would flutter or freeze for a second..... VERY SCARY but I decided to ride it out for the night as I didn't want to go to the ER and look foolish with nothing wrong. When someone goes hypo due to overmedication, how does it take for hypo symptoms to go away? I feel like my symptoms are all over and that scares me about my levels. Help! with any advice PLEASE!

bransnana 07/20/2010

Hi hon, usually leg cramps mean hypo. i think you were over medicated it sounds like. It takes about a week at a lowered dose to feel better. heart palps and chest pain are hypo signs too. If your heart rate is under 70, you are not hyper. I think your levels are too low for you.

scorpiogirl76 07/20/2010

Thanks so much. I ended up lowering my beta blocker to 5 mg at night only now and kept my PTU at 12.5 mg divided daily. However, I skipped a dose of PTU and today I feel a little better although very tired. The cramps have let up and aren't "as bad" but still present. I just want to be able to get a good nights sleep without the worrying that i'm too hyper or hypo or that some type of emergency is going to come up. I will lab again in 2 weeks and see where my numbers are. Thanks so much for all the advice.

mmztcass 07/20/2010

Sounds good...!

{{{hugs}}} :-)

bransnana 07/21/2010

I think you are "safe" don't worry about hyper right now. A lower dose is probably all you need, sometimes the hyper and hypo symptoms cross over, but the ones you mention are hypo.

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