[Candi28]

#1059908

I have had graves since I was 19, I am now 30. A few weeks ago after a bad sinus infection and cough I started noticing a rapid heart rate and immediately thought it was from this candida diet I was doing (very minimal carbs if any).

I went to my GP with a resting heart in the high high 90’s. He told me my heart was galloping and wanted to check my thyroid. My levels came back with a TSH at 0.04. my t3 free and free 4 were in very normal range. I was sent to my endo who said to increase my already low dose of methimazole to 2.5 mg a day. I decided against that and went with 2.5 mg twice a day and went to my old endo who said that was fine. I told her I had been experiencing the methimazole rash and she was a little concerned over the pain I would experience in my hands with the rash. She wrote a script for PTU 40 or 50 mgs, can’t recall (whatever the lowest dose is I think).

Anyways I am still taking the methimazole since the rash comes and goes and no more hand pain. My heart rate started to go back into the 0’s for just a few days and all seemed well. Then on Friday I started noticing the internal tremor feeling and new it was my graves. I also have for the past week been waking up in the middle of the night with a racing heart rate. I manage to calm myself down and it goes back to the high 80’s *my normal is in the 60’s range, since I also have very low bp 90/60 with no dizziness*

So I am scared that I am doomed basically. When my heart races I start thinking how my heart is going to stop beating or explode. That because of my very low BP that I will not be a candidate for a beta blocker (which my cardiologist says he doesn’t want to jump onto anyways since my heart rate stays below 100 bpm)

Am I allergic to the methimazole if I am getting a raised red rash every couple of days?

Is 40 or 50 mgs of PTU equivalent to 5 mg of methimazole?

I don’t understand why the small increase in meds hasn’t helped lower my heart rate. I keep thinking there is something wrong with my heart. (I have a 24 holter monitor scheduled for this coming Monday and then an echo the next day on Tuesday.

Are there beta blockers or some kind of blocker that doesn’t affect blood pressure. If my BP gets any lower I am sure I will get comatose (at least the chart would read that).

Very stressed I just want to feel how I felt 2 months ago.

[vanillasky]

#1178690

Hi! I also have very low blood pressure. Most of the time, they will check it and say “are you still with us?”

I took Atenolol (lowest dosage) just once a day and it didn’t work. So they took me off of it. Any higher the dosage and I might just faint (and I have!) What helps me is a tranquilizer. It helps with the tremors and calms me down so that I don’t get dizzy but the heart seems to just “relax.” You might want to inquire about that.

But beta-blockers for us low blood pressure people can be awful for us because I faint very quickly and the last thing you want to do is faint in a public place which has happened to me..

Otherwise, you just have to get your TSH up in normal range and the racing should subside. Not a bad idea to get heart tests too. I did all that. They found nothing wrong, just good ol’ hyperthyroidism

[LaurelM]

#1178691

Hi,

A couple of months ago I also had to increase my dosage of PTU (I had a reaction to Methimazole and can no longer take it). One of the questions my endo asked was if I’d been sick at all. I hadn’t but I had been under quite a bit of stress. I assume he was looking for a reason why my Graves hit the gas peddle. I haven’t yet reduced back down to my previous maintence dose and I too am wondering if that will happen. This is my 2nd bout with Graves after a 6 year remission.

I don’t know what the rough dosing conversion is from Methimazole to PTU. It does sound like you could be allergic to Methimazole. I was about a year into treatment with the Methimazole when I developed hives and was switched to PTU. I was also very early pregnancy so they would have switched me anyway.

It is discouraging to have what was working well not be effective anymore. I am much more seriously considering definitive removal (TT or RAI).

Sorry you are having to deal with this new development.

Keep us posted.

Laurel

[Ski]

#1178692

Hi Candi28,

It sounds like you have some conflicting advice — it can be difficult when symptoms flare, very frustrating, but it can also come with the territory of autoimmune diseases in general. Whenever we are ill with “regular” illnesses, our immune system is stimulated, which has the effect of stimulating the antibodies associated with our autoimmune symptoms. Managing that fluctuation is truly one of the most complicated parts of having Graves’, so it’s a good thing you’re seeking assistance, but try to remember that changes in dose can take a little while to show up accurately. It’s best to go with one option and let your body fully react to it before deciding to move on to the next thing, just for your own stability. I know it’s difficult, and it feels like we’re being complacent, but in truth you’re chasing a moving target at best, so if we make changes too quickly, we can jump even further into the wrong direction without realizing it — which obviously ends up making it take longer to get back to “normal.”

The skin rash may or may not indicate an allergy to methimazole — it’d be a good idea to see a dermatologist about that, because they could help determine what’s going on.

Let us know how it all plays out for you, I hope you’re feeling better soon!

[Candi28]

#1178693

Thank you to all of you for your replies!

I have decided to give the PTU a try after getting a near full body rash yesterday. It was getting to be too much to bare.

I have my appt with the cardiologist tomorrow for the 24 hr holter, it’s too bad I am running on very few hours of sleep. I have awful indigestion tonight and it’s kept me up all night.

I don’t think I could do TT with the fear of going under anesthesia, but am really considering RAI. I am just hoping I don’t get TED because I had that when I was first diagnosed with graves many years ago, but it went away with treatment.

I wish there was a magic pill to make this all get better quickly!

Thanks again for all of the replies!

[snelsen]

#1178694

Hi Candi,
You’ve gotten some good thoughts on the recent posts. I know you realize we are all fellow patients here, and although most of us have Graves’ or TED, each of us have different experiences with them.
One thing that seems a common thread, is how difficult it is to be hyper. We feel like we’re crazy, sometimes other people think the same thing. We just feel terrible, and not like ourselves at all. I remember how impatient I was when hyper, all I wanted was to GET BETTER, get this behind me, and live my life like the normal person I used to be. Believe me, if one thing is the same for every single one of us, it is wishing there were a magic pill to make all this go away and get better quickly!!!!!

I am sorry that you have a new flare of Graves’, for you have had eleven years of being back to your old self with taking ATD’s.

Here are some of my thoughts, plus a couple questions for you to think about.

1. Rash-Despite the long time that you have been on methimazole, it does sound like that you have developed a true allergy to that drug. And, of course, the way you will know that, is to stop it completely. I’d expect your doc, whoever is making the decisions, will be ordering frequent labs at the beginning of taking PTU, that is what usually happens.

2. Drug doses-they are different drugs entirely, and the composition of mgm. is also different.

3. I hope your indigestion goes away, and that it is an infrequent occurrence.
I have found that I am uncomfortable if I eat right before I go to bed, but that rarely happens.

4. All of us have different thoughts and feelings and conclusions about the treatment we choose. And you usually do have a choice. Not always, for certain people, a thyroidectomy is the way to go for other reasons. You will find that there are people on the forum who have chosen each one, for their own reasons and thoughts. Certainly if you have a fear of anesthesia, then perhaps RAI is better for you. I’d like to comment that anesthesia is a darn good state of the art, compared to what it used to be.

5. Re the TED that you had previously. The usual path of TED is two stages, the active, or hot phase, and the inactive, or cold state. TED can be very mild, moderate or very severe. Generally there is no treatment that would make TED go away. But there are several things to do to help the symptoms, like eye drops for dry eyes, sun glasses for sensitive eyes, and prisms for double vision. With that in mind, see the suggestion in #1 below.

Questions-

1. I do suggest you talk with the endocrinologist about RAI and eye symptoms.
With that in mind, I suggest you go to a good ophthalmologist who is familiar with TED, and get a good baseline eye exam. There is some pretty good evidence now, that RAI can exacerbate TED, if you are experiencing a recurrence of TED as well.

2. Do you have a related cardiac condition, that requires the Holter?
When you see the cardiologist, he/she is the one to ask if there is a drug to take to decrease your heart rate without lowering your BP. And check with the endo and cardiologist to see what they have to say about your heart rate going down with ATD treatment.

Welcome back to the forum, you have a lot of friends here. I did not get a great sleep when I had a Holter, so it will be nice to get it off tomorrow!
Do write again with your thoughts and updates.
Shirley

[Candi28]

#1178695

Thank you so much for all of this information!!! I appreciate that!!

I called my endo this morning regarding the rash and the nurse didn’t listen to me too well. She was surprised when I told her my rash would come and go for about an hours time and not come back until a day or so. Since I started the PTU yesterday I was told to take some claritin to see if it helps. Otherwise she said my option was again, RAI or TT.

I have been hearing some things about Low Dose Naltrexone and am thinking about looking into that. I want to make sure I explore all of my options before I ablate the thyroid.
‘ I feel like I got so close to remission, dang cold!

Thank you again for your wonderful and informative reply!!

snelsen wrote:

Hi Candi,
You’ve gotten some good thoughts on the recent posts. I know you realize we are all fellow patients here, and although most of us have Graves’ or TED, each of us have different experiences with them.
One thing that seems a common thread, is how difficult it is to be hyper. We feel like we’re crazy, sometimes other people think the same thing. We just feel terrible, and not like ourselves at all. I remember how impatient I was when hyper, all I wanted was to GET BETTER, get this behind me, and live my life like the normal person I used to be. Believe me, if one thing is the same for every single one of us, it is wishing there were a magic pill to make all this go away and get better quickly!!!!!

I am sorry that you have a new flare of Graves’, for you have had eleven years of being back to your old self with taking ATD’s.

Here are some of my thoughts, plus a couple questions for you to think about.

1. Rash-Despite the long time that you have been on methimazole, it does sound like that you have developed a true allergy to that drug. And, of course, the way you will know that, is to stop it completely. I’d expect your doc, whoever is making the decisions, will be ordering frequent labs at the beginning of taking PTU, that is what usually happens.

2. Drug doses-they are different drugs entirely, and the composition of mgm. is also different.

3. I hope your indigestion goes away, and that it is an infrequent occurrence.
I have found that I am uncomfortable if I eat right before I go to bed, but that rarely happens.

4. All of us have different thoughts and feelings and conclusions about the treatment we choose. And you usually do have a choice. Not always, for certain people, a thyroidectomy is the way to go for other reasons. You will find that there are people on the forum who have chosen each one, for their own reasons and thoughts. Certainly if you have a fear of anesthesia, then perhaps RAI is better for you. I’d like to comment that anesthesia is a darn good state of the art, compared to what it used to be.

5. Re the TED that you had previously. The usual path of TED is two stages, the active, or hot phase, and the inactive, or cold state. TED can be very mild, moderate or very severe. Generally there is no treatment that would make TED go away. But there are several things to do to help the symptoms, like eye drops for dry eyes, sun glasses for sensitive eyes, and prisms for double vision. With that in mind, see the suggestion in #1 below.

Questions-

1. I do suggest you talk with the endocrinologist about RAI and eye symptoms.
With that in mind, I suggest you go to a good ophthalmologist who is familiar with TED, and get a good baseline eye exam. There is some pretty good evidence now, that RAI can exacerbate TED, if you are experiencing a recurrence of TED as well.

2. Do you have a related cardiac condition, that requires the Holter?
When you see the cardiologist, he/she is the one to ask if there is a drug to take to decrease your heart rate without lowering your BP. And check with the endo and cardiologist to see what they have to say about your heart rate going down with ATD treatment.

Welcome back to the forum, you have a lot of friends here. I did not get a great sleep when I had a Holter, so it will be nice to get it off tomorrow!
Do write again with your thoughts and updates.
Shirley

[Kimberly]

#1178696

@Candi28 – Sorry that you are back on the Graves’ rollercoaster once again!

Just a quick note that the GDATF does not advocate any alternative treatment options, because there are none that this time that have been proven to be both *safe* and *effective. You can read more about this in the “Treatment Options” thread in the announcements section at the top of this forum.

Take care — and please keep us posted on how you are doing!

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