[calbears1156]

#1060452

I have decreased my MM from 12.25 mg to 10 mg’s PER DR’S ORDERS. I’m still tired and sluggish and for 46 I forget the SMALLEST of small things; on Saturday mid day I went from a good mood to depressed as the evening came. I’m SO tired of feeling good for a month and a half then to dark, tired withdrawn and depressed when I’m taking too much MM to regulate my levels. Why can’t it just be easy?????

Last week my Dr scaled me back to JUST 10 mg of MM and to continue taking 27.5 mg of atenenol. I have had 3 blissful months of NOT HAVING A SINGLE palpitation until this past Saturday. I had 2 today, 2 yesterday and a strange welcome back one on Saturday. How is this EVEN possible????? It seems as though when I’m hyper- the palps come and going into a hypo lull I still get them????? Anyone out there have this same issues when they’re regulating their thyroid from high to low to low to high? Will there EVER be an end to this madness????? Has anyone’s thyroid burned itself out after going up and going down????? I’d like some degree of hope like MANY MANY of you are like me STRUGGLE every single day with Graves and the exhaustion of feeling normal then hit the dark lows just like that????

I’m grateful I’m not suffering from a form of cancer as my husband and I have just lost a friend to it; however the way I feel at this moment, in a fog, dizzy, tired and sad I ask myself will there ever be an end to this Graves roller coaster ride hoping it just BURNS ITSELF OUT and STOPS working????

I go tomorrow to get new bloodwork drawn for my upcoming Dr’s appt on the 30th…. what great news will he share with me then……

[Kimberly]

#1182709

Hello – So sorry that you are back on this rollercoaster, especially after 3 months of feeling well! Yes, some patients do struggle with getting levels regulated on meds. In fact, some end up alternating doses of methimazole on different days (with a doctor’s recommendation, of course) in order to find the “sweet spot” that will stabilize their levels and bring symptom relief.

The bloodwork that you get done tomorrow will hopefully shed some light on what is going on. If your lab does not automatically send you copies of the lab results, you might consider calling the doc’s office to see if they can notify you as soon as the results are received.

If the palps become too worrisome, I would not be afraid to visit your primary care doc or even an urgent care center, just to get an expert opinion.

Hoping that you can get some relief soon!

[Raspberry]

#1182710

Hi Calbears, for me the palps are usually a sign of my thyroid levels being too low. In my case it’s PVC arrhythmias – have you had an EKG? I share your frustration! I’ve had my methimazole at just the right dose many times and then it slips away and has to be readjusted. Graves getting worse or getting better both will lead to you needing a dose change and suffering symptoms till you do. So much fun. For practical reasons surgery is not an option for me and I don’t want to do radiation, so I ride the methimazole rollercoaster. On the bright side we still have an option for remission though it could take a while. I hope you feel better soon!

[scanders]

#1182711

Hi Calbears,
I can get palps when high or low…and sometimes after a caffeinated beverage.

I’m right there with you at the moment of foggy, dizzy, tired and sad. Wanted to cry today, and I’m not really sure why. (Unless it was when my assistant said she has in fact noted a change since my dose reduction, and it hasn’t been an improvement? Or because of the TED, and it seems to be worse with each change up or down, and it’s just really uncomfortable at the moment… Sigh…)

My doctor has me trying an alternating dose right now. I have to set it up in a pill box to remember which dose to take on which day, of course, at this point. (Mind like a sieve right now.)

I’m reading here about the folks that have been on this roller coaster for a few years now, and I feel kind of wimpy complaining and it hasn’t even quite been a year yet. Hopefully you’ll have some answers with your lab work tomorrow. Hang in there!

[calbears1156]

#1182712

Thank you Kimberly-
I will DEFINITELY discuss alternating MM with my Dr when I meet him on Monday- GREAT suggestion! I didn’t get my labs done yet but I will tomorrow; I didn’t have time on Tuesday or today since my lab turnaround usually takes 24-48 hours.

That said, I’ve heard certain food triggers the thyroid levels to go up or down; broccoli for example has certain trigger points to change thyroid levels. Have you heard of this and if so maybe what I eat could also contribute to my fluctuating levels?

Thoughts??

Thank you for your time and consideration.

[calbears1156]

#1182713

Hi there-
Yes, on top of seeing 2 TOP notch Dr’s (my endo and my GP) for my graves I also see an amazing cardiologist who actually DIAGNOSED my graves last August; he use to treat for thyroid disease as he’s also an internal guy as well. He keeps an eye on my heart every other month and has given me 2 heart ultrasounds one last year and one a month ago as well as a routine EKG when he wants to be sure. I can’t complain- I’m in THEE best care with my medical team and they keep a close eye on my progress which is frustrating.:mad:

I have been told thyroid is VERY difficult to treat unless you go the surgery route which I’m really avoiding as it is VERY invasive. I just wish the MM would be the ‘cure all’ way rather than continue on this roller coaster.

May I ask, do you have dietary restrictions you take SINCE you’ve had your graves? I’ve been told that certain foods are triggers for levels to change.

Have you gone into remission and come out of it too? And if so how long were you in remission? I sure do hope my thyroid gets SO TIRED of going up and down that it just BURNS ITSELF OUT which is my goal….. here’s to hoping and THANK YOU SO much…… I wish you well too

[calbears1156]

#1182714

Hi…..
It appears we are ALL in the same boat with the graves roller coaster. You seem to have the exact same symptoms I currently have…. Dr adjusted my MM again without seeing my labs yet (I’m going tomorrow) even though he scaled me back last week but I HATE feeling like this after I called and said I couldn’t wait until the 30th and that I needed to feel somewhat better before then he gave me permission to reduce MM to .5 mg from the 10 which I knew was still TOO MUCH.

I’ve never been this bad before which was an indicator that my levels were creeping more into hypo which WOULDN’T be good. I’ve always walked that FINE line. This time was different and I’m aware of the differences now before they get bad.:mad:

May I ask; what are your alternating days for your MM? I plan on discussing with my Dr- my appt is on Monday the 30th so before I meet with him I’d like options on how to alternate my days which I’m certain he will do but I like to also make informative decisions about my treatment as well.

I’ve also heard that certain foods we eat are triggers for our levels…. thoughts?

Thank you and YOU HANG IN THERE TOO!😀

[scanders]

#1182715

I currently take 5mg alternating with 7.5mg. Prior to that I’d been on 7.5mg daily, and the dose prior was 5mg daily. I actually thought 5mg was going to be “the” dose, but she thought FT3 was still too high, but FT4 was smack in the middle. I wonder if we’d given it more time if that wouldn’t have been a good dose for me, but unfortunately there’s no crystal ball to know what’s going to happen with each dose change. I just know that I’m learning more all the time, gaining a frame of reference. I didn’t feel well with that slightly high FT3, but I feel worse here in the bottom of the range. I know that now, and that can only help as I move forward, making decisions with my doctor. Best of luck!

[Kimberly]

#1182716

calbears1156 wrote:

That said, I’ve heard certain food triggers the thyroid levels to go up or down; broccoli for example has certain trigger points to change thyroid levels. Have you heard of this and if so maybe what I eat could also contribute to my fluctuating levels?

Hello – Foods like broccoli and Brussels sprouts are referred to as “goitrogens”, as they can block the thyroid gland’s ability to use iodine. However, these foods would have to be consumed in fairly large quantities in a raw state to have an impact. (Cooking decreases the goitrogenic properties).

There was one case study of an elderly woman going into myxedema coma (a severe complication of hypothyroidism) after a lengthy period of eating 2-3 *pounds* of raw goitrogens per day. But you shouldn’t have an issue with eating a reasonable serving of broccoli!

[Author]

Posts