[amosmcd]

in reply to: Running in place…. literally! #1177581

I like the idea of being active. From the time I first had symptoms of Graves almost a year ago, I started walking. I was previously pretty sedentary, at home and at work. My symptoms were set off by a very close friend passing away, and I would feel panicky at the thought of being in the house, trapped with my grief. Walking made me feel so much better. I asked my endo if it was okay after I did it a few times without any problems. He said it was fine. I was not having any issues with blood pressure, although my resting pulse would go up as high as 108.

Now it’s a year later, and I’ve walked in a 5K at Christmas, and recently I walked/ran in a 4 mile St. Patrick’s Day Dash. (Finished in 52:32!) This is the longest I’ve ever consistently exercised in my life. I bought a treadmill for the rainy Seattle weather, but get outside as much as possible when it’s dry. It really helps me cope with stress and anxiety.

If your endo clears you to walk, I highly recommend it. I’m a naturally fast walker anyway, and eventually just got faster. Running really isn’t good for me, because I have back problems, so I pretty much stick to walking. I started out on flat surfaces and later added hills for aerobic conditioning.

I’ll be heading out in a bit for a walk with my son, who is a runner. He’s almost 22 and condescends to walk with me now and then when he could run circles around me!

I hope you’ve discovered something that will work for you to reduce the anxiety that Graves’ dumps on us. Crazy dancing sounds like a lot of fun!

Amy

[amosmcd]

in reply to: Saw thyroid surgeon yesterday #1177366

Hi, Shirley–

There was no link or site on your reply to me. Could you repost?

It’s late and I’ll reply more tomorrow to everyone’s replies.

Amy

[amosmcd]

in reply to: Saw thyroid surgeon yesterday #1177363

Also, the surgeon I saw is an ENT. Is this the most common type of thyroid surgeon? What other kinds do TT’s?

[amosmcd]

in reply to: Saw thyroid surgeon yesterday #1177362

Thanks very much, smtucker! I hope you have an uneventful recovery.

Amy

[amosmcd]

in reply to: Saw thyroid surgeon yesterday #1177361

I also thought it was interesting that she said the parathyroids are very difficult to see, which is why they can be damaged or removed during surgery. Is this true? This is a worry!

[amosmcd]

in reply to: New lab results #1177259

Yes, I did transpose the FT3 and FT4.

3/13/13

FT3 is 3.8
FT4 is 0.62

2/13/13

FT3 is 2.2
FT4 is 0.49

Amy

[amosmcd]

in reply to: Saw New Endo–Love her!! #1177213

Thanks, everyone! I wish that all Graves’ patients could find a good endo. Of course, I did have to kiss the toad that was my old one long enough 😆

I’ll write an update when I get my labs back and after I see the surgeon.

Amy

[amosmcd]

in reply to: Saw New Endo–Love her!! #1177208

Okay, so personality-wise, this endo is night and day from my old endo. Very friendly, spent lots of time with me, answered all my questions, was very interested in hearing my history. Her speciality in endocrinology is specifically thyroid, which I wasn’t sure of, but was very glad to learn that.

She said given my ups and downs with labs since my diagnosis in Sept, and not feeling great most of the time, the most important thing was getting them stabilized and since it’s hard to do that with me on ATD’s, having my thyroid out would take care of that. I asked her specifically about whether she uses T3 along with levothyroxine if necessary, and she said absolutely, that many of her patients feel better with a little T3. Nice to know that option is there if I need it.

I asked her for a referral to a neuro-ophthamologist and she gave me a name (same person Shirley gave me, but I hadn’t gotten around to calling yet, so now I feel even better about it!) She said it’s always good to check our eyes checked out with Graves.

I’m anxious to find out what my labs are. She ordered a FT3 & 4, TSH, TSI and liver profile (since I’m on PTU.)

Really excited to talk to the surgeon to find out all the info I want to know to make an informed decision. Apparently this surgeon does a lot of them, which is always good to know, but I’ll be asking about the complication rate, etc.–all the good questions I’ve learned from this forum to ask.

Thanks for listening to me rave about my new doc–it’s much more fun than ranting about the old one.

Amy

[amosmcd]

in reply to: I’m back and feeling better #1176957

So I contacted my endo about the question I had below:

I asked him specifically which lab result he used for dosing my meds, and although he said he used them all, he said the TSH was pretty representative of how things are going for me. I was not expecting that answer so naturally, with my brain fog, did not have the presence of mind to ask what the heck that meant.

This was his response:

The TSH is the most sensitive indicator of current thyroid status. It has the disadvantage of potentially lagging behind the other values in time especially with rapid changes in thyroid hormone level. When your TSH is high that means the thyroid hormone levels are low. I worry about over suppressing the thyroid with PTU and therefore lowered the dose.

So to me it sounds like he has been adjusting my PTU based on my TSH. Or am I reading this wrong? Wish my brain could comprehend the most basic information. I feel like half my brain cells have died off.

I started having palpitations again starting the day before yesterday, with them really being noticeable last night. I think switching from the three times a day schedule to twice a day I’m now on is responsible. Really hard to divide up a 50mg pill into 3 doses without destroying it. Don’t want to have to take the PTU 4 times a day, since that would be hard to manage. I really dislike the palpitations, though. My heart rate is normal at least.

Amy

[amosmcd]

in reply to: I’m back and feeling better #1176953

Hi, Karen and Kimberly-

I started out being diagnosed with Hashimoto’s 5 or 6 years ago by a primary care doc. My labs were always in the normal range, but I had felt horrible for decades, so when I saw this endo about it, he agreed to trial me on levothyoxine. I felt great for about a year and 1/2, and then last April I started going hyper. Even after I was taken off the levo, I continued to be hyper and in Sept I was diagnosed with Graves. I didn’t have any hyper symptoms before April.

All this back and forth business started when I was first treated with MMI. The endo kept me on too high a dose even after I was trending to hypo and then he took me off it for 3 weeks and wham, I went hyper during that time. Now same thing with the PTU (which I started because I couldn’t tolerate the MMI.) My previous set of labs in January showed I was trending to hypo, but he didn’t lower the dose enough and now I’m hypo again. I could have been more proactive about lowering the PTU dose back in January, but I was feeling so bad I couldn’t deal with it. He wants to place the blame on the Hashi vs Graves, but until he can figure out (and work with me) on a proper dose of PTU and more frequent lab checks, I don’t think he can say it’s that.

At least this time he didn’t take me completely off the PTU, so I guess he did learn something from the MMI thing, but I don’t like being his guinea pig while he learns what I already know about how the ATD’s work on me.

Kimberly, thanks for the links to the articles. Most of it was Greek to me, unfortunately. The 2nd link from the NHI doesn’t let you read the full article, just the abstract. It would have been nice to read about their case studies.

Also, I truly have no idea what the endo meant by that comment. It was very vague. He was replying in the context of being asked which lab results he used for titrating the PTU dose, so his answer seems to indicate he leans more on the TSH than the others, but who knows? I thought I read somewhere that the TSH shows what you have been going through over time (sort of like the hA1C for blood sugars with diabetics.) Since his answer bothers me, I’m going to contact him via the clinic’s MyChart and ask him. I’ll let you know what I find out.

Thank you both for your replies!

Amy

[amosmcd]

in reply to: Can’t get into new endo til mid-March–now what??! #1176417

I can’t remember if my endo has ever said how he doses. I can send him a message and ask. He seems to be more interested in the T3 and T4 levels. He’s mentioned that my TSH could stay suppressed for a while when I was hyper, and I know that I feel better when my TSH is around 1 or so, but there’s been so much up and down with my labs, it’s hard to remember how I have felt at what level. I’m going to start a journal.

One thing I do know, in spite of what has been said to me, I have never had heart palpitations or anxiety when hypo. Only when hyper. I’m more inclined to believe this is coming from the PTU. This is a very different type of anxiety than when I was hyper. In fact the palpitations were more a problem than the anxiety, and the anxiety was a direct result of my elevated heart rate when hyper.

My heart rate now is 68, and I feel anxious, although not as bad as I can feel. I’m hoping that it will decrease as the extra PTU gets out of my system. Of course, I had to stop the Atenolol due to headaches.

Anyway, I post on here and it helps clarify things in my mind as well as get different perspectives from others. Sometimes I feel like some fellow posters think that I am their pet project compared to other people who post about what’s going on, and that I don’t have a brain in my head to figure things out. Maybe that’s just my anxiety. I think the fact that I feel overwhelmed by information sent my way is a sign that I need to step away from here for a while and handle this on my own. I hope that I can return when I feel more comfortable.

Thanks to those who have tried to help. I think advice given in very small doses is better for me, and just may not match the way others like to help.

Amy

[amosmcd]

in reply to: PTU effectiveness vs Methimazole #1176433

I’m not doing too well cognitively lately and feeling overwhelmed by all the info I’ve gotten, so I’m not going to change my dosing schedule, although 3 x a day PTU may work out eventually.
I had to call the on-call endo tonight because I’ve developed a bad headache a few hours after taking the Atenolol (and I’m only taking 12.5mg twice a day.) He said to stop it for a couple days and then call my regular endo.

It’s been making me feel tired, too, although it was helping with the anxiety and palpitations. Just have to see how it goes.

I appreciate all the advice and input.

Amy

[amosmcd]

in reply to: Can’t get into new endo til mid-March–now what??! #1176413

catstuart7 wrote:

amosmcd wrote:

My endo called me at 8:30am this morning with my thyroid lab results:

TSH: 1.4
FT3: 2.4
FT4: 0.69

Hi Amy, do you have the ranges for these results? According to the lab ranges for mine, from three different labs, your FT4 is below the bottom cut off for normal and you would be hypo right now. Anxiety and palpitations are common hypothyroidism symptoms. I am so glad your endo has reduced your PTU dose for you.

Hi, catstuart,

Here are the ranges:
TSH: 0.270-4.20
FT3: 2.0-4.4
FT4: 0.93-1.70

My previous labs on 12/7/12, before I started the PTU, were:
TSH: 0.054
FT3: 4.5
FT4: 1.22

Before that, when I was on MMI, my TSH was above 4.0 and the other 2 were also showing me to be quite hypo. I did not have any anxiety or palpitations then. I only seem to have them when I am closer to hyper than hypo.

Hopefully, I won’t get as hypo as I was after the MMI. It can’t be good to be going up and down all the time.

The beta blocker is helping. I took my first dose this morning. Much less anxiety and palpitations!

Amy

[amosmcd]

in reply to: PTU effectiveness vs Methimazole #1176430

Hi, Naisly–

I’ll look it up because I’m curious, not because I think you’re wrong.

I do realize that “normal” labs aren’t necessarily normal for me, but it does mean the PTU is working, because a month ago, my labs showed me to be hyper. I had been feeling like the PTU wasn’t working at all, but obviously it is. Because I have Hashimoto’s and Graves’, my thyroid won’t stay put very long in a range that is normal for me, even on ATDs. But until I finish my research into TT, I have to work with the PTU.

My endo started out having me take PTU 50mg twice a day until I told him it was wearing off before the next dose, and he had me take 50mg three times a day. Now he wants me to cut back. I don’t have a problem taking it three times a day although with my work and sleep schedule it has to be 11:30am, 6:30pm and 12:30am, so can’t do the every 8 hours thing. I don’t think my endo would care.

I have felt better today after taking the beta blocker. I only took half of the 25mg pill since I’m so sensitive to meds and it helped. I’ll take the other half at bedtime. If it wears off too soon, I’ll take the entire 25mg pill. I just feel a bit sleepy, although that could be because the endo called me at 8:30am, then 3 of my 4 cats came in one by one to ask to be fed, then my son came in twice. I’m usually awake between 11-11:30am.

Thanks for the suggestions and info, Naisly.

Amy

[amosmcd]

in reply to: PTU effectiveness vs Methimazole #1176428

I posted in my other recent thread an update on my labs, which are now normal. Started on a beta blocker and reducing my PTU back to 2 pills a day instead of 3. Follow up with endo in a month for more labs. Hope I don’t get hypo again, but that seems to be the pattern I’m in. Hopefully the beta blocker will help with anxiety and palpitations.

Looks like the PTU is as effective as MMI with labs. The endo is not sure why the anxiety and palpitations are still hanging around, but thinks the ups and downs with my labs is the culprit.

Thanks, gatorgirly and catstuart for your advice and input! It’s good to have input from other Graves patients and also it helps not to feel so alone with it!

Amy

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