[Naisly]

#1175226

Hi amosmcd,

I find it so odd that an endo is expecting you to go hyper, that dr is taking a huge risk on YOUR account. Your levels could change rapidly and you could run the risk of developing a heart condition, or bone and muscle issues, or worse – a thyroid storm. I realize your not experiencing many symptoms (yet your body is still ill at the moment) but that could change if your left hyper/hypo too long. I’m very surprised the dr didn’t prescribe at the very least beta-blockers. I took beta-blockers for 4 months BEFORE I started on ATD. It did help me and probably saved me from going into a thyroid storm because my levels got way out of hand. I too was like you, I was very tired after I started taking the ATD, but that soon subsided after a couple of weeks. The drs “think” I have Hash’s as well, my levels are 2670 (<35) and even though my levels are way higher than yours, my dr's believe it is still possible for me to go into remission with ATD's, no stress, proper diet etc. So there is hope.

I do suggest you get a TgAb lab test when you get your other labs. I’m going to ask for this as well when I see my endo. This test will help confirm if it’s Hash’s.

You also don’t need a I-131 uptake — this is only for if you decide to do RAI. And if your dr has any concerns of noduals, then an ultrasound will do for that. They used to believe that people needed the I-131 uptake to dx Graves, they realized you only need TSI labs for Graves dx.

And as Bobbi said:

Quote:

Being tired goes hand in hand with both hyperthyroidism and the hypothyroid state. But the dose that you need of the methmimazole has to be calibrated to your needs specifically, so it is possible for it to make you hypo. I could feel a difference in the type of fatigue I had while hyper or hypo. If I exercised a bit while hypo, it energized me. (I’m talking a quiet walk, or something simple, not kick boxing or spinning.) If I tried even a quiet walk while hyper, it only made me more tired. Also, if the medication is slowing your body down, as it is supposed to, you could be feeling just how tired hyper was making you. Without the added “jazz” of thyroid hormone, we do feel fatigue until we readjust to “normal” again.

Oh, on a note, many people with Graves were first hypo – and sometimes this could go on for a couple years before the Graves dx.

Hope this helps,

~Naisly

[amosmcd]

#1175227

Hi, Naisly–

I think my endo is simply expecting that since he took me off the Methimazole, I would most likely become hyper again. He’s rechecking me in 3 weeks (well, 2 weeks now) so we’ll see. I feel really good right now off the Methimazole. It was not a good drug for me. It may have worked, but I didn’t tolerate it at all.

I do have Hashimoto’s as well as Graves. I have antibodies for both. That’s why he thinks I’d do better just to have my thyroid ablated so I don’t have these ups and downs.

I was not severely hyper as some people have gotten on this forum. Didn’t need beta blockers. My heart rate never got above 108 and that was not all the time. The palpitations didn’t become a problem until right before he put me on the Methimazole. I did lose a lot of weight, but I’ve regained 7 pounds. Really don’t want to gain any more. Within a week or two, the palpitations were gone and my heart rate was back to normal. I’ve been able to continue exercising the entire time, with my endo’s knowledge. My heart rate never got more than 120-30 during that, because I was in shape before I got hyper.

I feel like my endo knows what he’s doing. I go by how I feel along with how my labs are. I was way hypo for me. A TSH of a little over 4 may not feel bad for most folks, but I do best when my TSH is no higher than 1.5. I’m sure it’s dropping since I’m feeling better, but I’m also off the Methimazole, which was a nightmare for me.

I had an ultrasound back in 2009 and I had no nodules, but I want to find out if I do now. I just thought the I-133 scan was necessary to look for “hot” nodules.

What’s the difference between a TgAb test and the TPO antibody test for Hashi’s that I had?

Thanks for your concern and post!

Amy

[Naisly]

#1175228

Beta-blockers are not just for heart rate, but for the nervous system as well, brain function etc. Also used to lower the conversion of FT3. And your endo said you were responding quite quickly to the ATD’s, so in retrospect a lot can happen in 3weeks. Like here’s an example:

My Labs (please take note of the dates)
Nov 19 2012 5mg Methimazole
TSH 18.9 (0.38-5.5)
T4 Free <5.0 (10.5-20.0)
T3 Free 4.3 (3.5-6.5)

Oct 25 2012 10mg Methimazole
TSH 73.8 (0.38-5.5)
T4 Free <5.0 (10.5-20.0)
T3 Free <1.69 (3.5-6.5)

October 3rd 2012 15mg Methimazole
TSH 0.09 (0.38-5.5)
T4 Free 7.6 (10.5-20.0)
T3 Free 2.4 (3.5-6.5)

Sept.12 2012 Started 30mg Methimazole
TSH 0.06 (0.38-5.5)
T4 Free 58.2 (10.5-20.0)
T3 Free 21.7 (3.5-6.5)

Do you see how fast I responded? So yes I am a bit concerned for you. I was very very sick but I at least had beta-blockers to stop a thyroid storm (to a degree)

Thyroid peroxidase (TPO) auto-antibodies attack and destroy an enzyme needed to make T4 and T3. Thyroglobulin auto-antibodies (TgAb) attacks a protein that exists in the thyroid tissue and that is needed to make thyroid hormone. These auto-antibodies are destructive and cause cell death.

So, since a lot of people with Graves already have TPO then to make sure it is Hashimoto’s it is suggested to have the TgAb test done as well.

Also, I can’t remember but what was your FT3 labs?

~Naisly

[catstuart7]

#1175229

One more idea to throw into the pot – I’ve noticed that I have real symptoms of hyper or hypo that occur based on the shift of the hormones even outside of the fact of where they are in the range. When I had the initial fall of thyroid hormones from being hyper I had significant hypo symptoms, but I was still in the normal range -even the upper part. When my levels bump up some, still not hyper, I’ll have some of the hyper symptoms. I think this can complicate (on top of everything else!) how one views where things are at and side effects of the medication itself.

[Kimberly]

#1175230

I have definitely experienced symptoms of hypo/hyper when levels were swinging upward or downward, even within the “normal” range.

However, with that said, it seems that Amy and her doctor are comfortable with their current plan. I’m sure that she knows she can call her doc’s office and demand a new set of labs if she starts feeling a return of those old hypER symptoms, rather than waiting for things to escalate.

@Amy – The RAIU uptake & scan can help distinguish whether hyperthyroidism is likely due to Graves’, thyroiditis, or hot nodules. Many docs, though, are skipping this test now if antibody tests (TSI, TRAb) definitely point to Graves’

Take care!

[Naisly]

#1175231

When I had my ultrasound back in Sept. the technician said they look for size of the thyroid and if any nodules are present. And when I asked my internist why I had to do an uptake scan back in June. he said because it measures how much iodine your thyroid takes up, this is so they know how much to give you for RAI.

In anycase, I ran into an interesting article “Adult Hypothyroidism” and in it, it does suggest anyone suspected to have Hashimoto’s to have the uptake. I will make a new post as I think this will interest everyone with questions.

~Naisly

[Carito71]

#1175232

amosmcd wrote:

I got my labs checked 6 weeks later, and my labs were close to normal, so my endo dropped me to 5mg (which I split into 2.5mg twice a day.) No change in the drowsiness.

Then a month later the labs showed I was hypo.
.
.
.

How the sedation felt was that about 3 hours after I took the noon dose, I would get socked with feeling incredibly drowsy. Since that’s when I start work, it was very inconvenient! If I had a day off, I would take a nap. I’d be tired around midnight or so and fall asleep. I’d sleep fitfully, and felt like I could sleep for days. I slept between 11-12 hours a day.

Hello Amy,

Its me again

Wow … it really did affect you bad. I can only imagine. I’m glad that we have more than one option.

Well, I wish you the very best with your new treatment.

Feel better soon.

Caro

[amosmcd]

#1175233

Hi, Caro!

I’ve been off it for 10 days now. I feel SO much better! I wake up now about an hour earlier than I had been. I go to bed at my normal time. I’m not tired at work. Only have needed two naps in 10 days. Once I’m awake, I’m awake. I’ve been able to get out and go for my walks every other day like I used to. My brain fog is almost gone. (Some of it is just due to being almost 55–lol!)

Tomorrow (Sunday) morning I’m walking in my very first 5K! I’ve been trying to get faster and hope to finish in around an hour, but maybe less. My son will be running in it and he hopes to win! I can’t run because I have a bad back.

Anyway, just wanted to let you know that I’m feeling a lot better! Hope you are doing okay.

Take care,
Amy

[Carito71]

#1175234

I’m so glad you are feeling better. Congratulations on the 5K!

I’m feeling better overall, though today I’m feeling very tired. I ate something yesterday that gave a minor allergy and that always makes me feel tired. I’ll be okay though.

Caro

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