[calbears1156]

in reply to: Update and swollen lymph nodes #1182745

Hello there….
It’s been awhile since I’ve logged on because the last time I logged on I was feeling great and my T4 (along with my TSH) were in the normal range.

Since then I transitioned from good to not good- my free T4, T3 and TSH became very low- I couldn’t get out of bed and I felt awful.

My Dr called me and had alarm in his voice and wanted me to scale back on my MM intake- I was taking .10 mg a day and he scaled me down to 6.5 mg.

It seemed like I was in hypo for an eternity which was the end of August through mid October. I’m currently taking .5 mg of MM and I can tell my levels increasing. I have headaches and dizziness and overall feel like crap. I’ve noticed the constipation has been replaced by frequent bowl movements and my irritability is starting to become more frequent and obvious. My face and body once bloated from hypo is now becoming less and I feel lithe.

I’m SO sick sick sick sick of this. I chose NOT to do the thyroidectomy I had scheduled in August because I really wanted to do without the surgery and stick it out on the medication route.

Surgery scares me and I feel my thyroid is the victim of my body attacking it.

I feel at an all time low right now and I hate how bad I feel.

Anyone out there who has or is experiencing the same thing? This is like a tidal wave and roller coaster I cannot get off of.

Up and down up and down….. levels go up then they go down; I don’t know which is worse hypo or hyper.

[calbears1156]

in reply to: Palps are coming back….. #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!😀

[calbears1156]

in reply to: Palps are coming back….. #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]

in reply to: Palps are coming back….. #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]

in reply to: Out of remission #1182508

Hi Khandi-
I just read your post and I’m SO sorry to hear about your relapse . You mentioned that graves runs in your family; is it hyper-hypo- thyroid? I have a 21 year old daughter that started getting her blood tested a few months back which she’ll have to get bloodwork done every year now just to make sure checks and balances are in place.

May I ask, when you came out of remission did you suffer a thyroid storm or you just ‘knew’ what the symptoms were?

This is what scares me about graves remission stress can trigger it and boom you’re back on the roller coaster again.

I noticed my hair was thinning BEFORE I was diagnosed which was last August; I chalked it up to menopause (I’m 46) but became pro-active before it got out of control. Like you I notice when my levels are crazy and all over the map- it shows in my hair so I just use a product EVERY week now to prevent thinning and body-less hair. My thyroid cant be controlled but I have control over thinning hair so I have one up on my graves!

Feel better and I’ll keep you in my thoughts.

[calbears1156]

in reply to: Coping with Graves #1182683

Hi Christy!
It sounds we both have the exact similarities with our graves. I know how you must be feeling right now; I too am in a ‘lull’ with my thyroid situation which is currently down. Even though my Dr reduced my MM intake to 10 mg a dayI believe it still may be too much. I’m teetering on asking if I could go 5 mg but fear he won’t go for it.

Are you taking atenenol to help with your symptoms? I’m taking 27.5 mg (25 in the am and 2.5 in the evening) which has really helped the palpitations and rapid heart rate.

I know EXACTLY how you feel Christy with the impatience of getting your graves under control and hoping it stays that way however after much research I’ve read the only way you stay out of remission is either ablation or surgery.

May I ask when you were diagnosed and how long before it was finally discovered?

Keep your head up and THANK YOU for your encouragement- feel free to chat me up whenever you feel you’re thyroid crazy or emotional.

[calbears1156]

in reply to: Coping with Graves #1182680

Hi Shirley-
Thank you for your response. Yes, I am and have been bouncing all over the place with trying to regulate my levels. On May 12th the Dr was ‘pleased’ with my levels and suggested I stay on course taking 12.5 mg of Methimizole which I follow Dr’s instructions carefully. I had actually at that point been feeling good. His only concern was my right thyroid gland had grown (I had an ultrasound that day) 20% more from January and the nodules were still VERY small- in other words no further growth which was good to know.

He said it was common for one gland to be larger than the other but 20% growth on the right gland seemed to be his focus. I asked him was there a reason to be concerned and he said no because the ultrasound showed no sign of cancer which was also GOOD NEWS.

He wants to see me back in 2 weeks rather than the usual 6 due to my yo-yo thyroid levels. They are keeping a watchful eye on them trying to get them under control which has been arduous and difficult.

As it sits right now my neck is VERY pronounced- it looks like my left gland is catching up with the right one. I’m so frustrated that I cried this morning because I’m not feeling good and I know why but it’s still a challenge.

What amazes me the most Shirley is HOW FAST the levels can change and throw everything off. I’m SO disappointed and with days like this makes me WANT THE SURGERY JUST TO BE DONE WITH THIS. But would I still be faced with the auto-immune aspect of graves IF I elected to have the surgery??????

I know there is NO QUICK FIX with any of the treatments available for graves and hyperthyroid other than it just ‘burning itself out’ which I’m curious to know if anyone has been lucky to have it happen to them. Naturally of course synthroid will have to be taken to supplement your own thyroid levels.

Has ANYONE out there experienced what I’m going through as well?????

Thank you SO MUCH….. it’s such a change of pace to be able to talk with people suffering and experiencing thyroid disease.

[calbears1156]

in reply to: Coping with Graves #1182678

Kimberly-
Thank you for your reply. My Dr always looks at free T3 and T4 on my lab reports which I have done every 6-8 weeks. When I got my recent labs back on Tuesday he noticed I’m now under producing.

I was taking 12.5 mg of Methimizole and have now been scaled back to 10 mg. I’ve gone up and down and up and down. The past 2 weeks I had been feeling sluggish no appetite and my mood definitely changed and I’ve also lost weight. When I first became diagnosed with Graves I lost weight and once the Methimizole kicked in 3 weeks later I did see an difference in how I felt and started to put weight back on. I’ve lost A GREAT DEAL of muscle mass as I was a runner training for 2 half marathons.

As of 2 weeks ago I noticed weight loss again and that alone put me in a depressed state.

I’m so tired and I just want my thyroid regulated so I can get on with things. The everyday quality of life with graves is unpleasant. But then when my levels are good I feel amazing and forget I have graves and yet in the back of my mind I fear a relapse if I go into remission. I’ve given SERIOUS thought to surgery just to end the highs and lows but then realize if they were to remove it I’d have to go on synthroid and wait 6 months for level adjustments.

I just don’t know anymore.

Sad and tired in Henderson NV
Rene Vandyke Maloney

[Author]

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