[smtucker]

#1059591

I am about one month into this new disease. I went from being pretty normal- sleep 9 hours a night, stomach never hurting, pretty calm outlook on life, and except for my monthly cancer treatments, felt pretty darn good. No need for a nap. Normal need for food.

No more. I wake up more tired than when I went to bed. I have a headache almost constantly. I am having trouble getting to sleep. I need a nap, but can’t always convince my body to relax enough. I become overwhelmed by things that have never seemed like too much. If I don’t eat, my stomach reels. When I do eat, I feel like vomiting. [TMI: I have more bowel movements each day.] I completely feel like crap.

I am taking 5mg of Methimazole twice a day. I read on this site that others feel so good after being on the medication. Why is this making me feel so awful?

I don’t completely expect an answer. Just need to whine. For me, the disease is far better than the medication.

Grumpily…..

[catstuart7]

#1176008

I’m sorry you’re having a hard time smtucker. I don’t feel too good either and I’ve been on medication for eight months now. It varies though sometimes leaning toward hyper sometimes leaning toward hypo and sometimes other life factors creeping in to confuse things. For you though on 10mg of MMI a day for one month odds are you have experienced a big drop in thyroid levels and it’s time for lab work to see where things are at, maybe you need a reduction in the MMI. Maybe time to call your endo?

[smtucker]

#1176009

Thank you cat so much for responding. Still learning the personality of this site…. 62 views before anyone responded.

I had bloodwork last week, but for some reason, no TSH. Instead, all she added to my monthly tests was a liver test. This was only because my sister couldn’t take the Methimazole for long since her liver started to shut down. I was very surprised that the TSH wasn’t included.

My last TSH was on 11/15/2012, and was a <-.02>. I have gathered that this isn’t a good thing. My endo is away right now and won’t be back until after the holiday. I have more bloodwork scheduled for January 10th. I will confirm that the TSH will be included this time.

Guess I can tolerate this for a bit longer. May not have a choice.

[catstuart7]

#1176010

Hi Smtucker, I know it’s easy to say but don’t let the number of views get to you. People might not post for lots of reasons – sometimes I come and just read but I still feel for people I’m reading about. I bet you lots of those 62 people read your post and nodded and said yeah I been there sister!

About your tests did you have any thyroid tests at all last week FT4? FT3? Those are the most important right now though TSH should always be included. Your TSH cannot entirely be trusted for many months at least because Graves screws it up – not all endos are up to date on that fact either so beware. Best tests are the free T4 (not total) and free T3. And 1/10 is a long time to wait feeling bad – it’s okay to call up your endo’s office and raise a little hell, there should be other docs covering for yours…if you can find the energy to do so

[smtucker]

#1176011

Just pulled up the bloodwork [love online portals] and she did do the Free T4.

On 11/15/2012, the day I agreed to be treated it was 2.4; on 12/13/2012 it was 1.8. So that is going in the right direction? She did not order the T4 and T3 in December, though they were included in the November bloods.

I think I will get through this weekend and the holiday and if I don’t feel better on the 25th, I will call the hospital where my Endo works. Since I am at a teaching hospital for all of my care, I am more likely to have an endo who keeps current with all the research. One of the reasons that I am treated there.

To be honest, I love hearing and observing my doctors teaching during my appointments.

Thank you so much for your thoughts….

[Kimberly]

#1176012

Hello – Agree with catstuart7 that the T3 and T4 are more important than the TSH at this point…this is also noted in the latest medical guidance on the treatment of hyperthyroidism. (You can read this if you are interested in the second link in the “Treatment Options” thread in the announcements section at the top of the forum.)

Some patients find that they feel symptomatic as their levels are either *rising* or *falling* — but agree that if you aren’t seeing some relief soon, it’s worth another visit with your endo.

Personally, I don’t pay attention to the “views” at all on this site. *Anyone* with Internet access can read the posts on this site, but you have to be a registered user to post a response.

Take care!

[smtucker]

#1176013

Sadly, This has all gotten much much worse. Talking with the endo is non-productive. Do they all cut you off mid-sentence, drawing conclusions before they have all the information? Stopped the Methi-Crap on Saturday as a full fledged flu bug took over my body. Evidently, I did feed people, but I slept most of Christmas Eve and Christmas Day.

For the first time ever, I feel emotionally unbalanced. Can’t sleep well and having these OCD dreams, mostly writing a letter to this endo suggesting that she consider a course on listening. I suspect that I have now written about 20 versions of this letter, each with its own special emotional snark. At least I can see again, and focus on the written word.

I am off now to get some blood work done, and see a primary dcotor. I need help managing all of this, and I never, ever ask for help.

How does one do a second opinion? Do you have to go to a different medical center? I think I need one of these.

[Kimberly]

#1176014

@smtucker – So sorry that things seem to be getting worse, but I think that getting in to your primary care doc is exactly the right thing to do. He/she should be able to help you with another endo referral, or you can check out the “Looking for a Doctor?” thread in the announcements section of the forum.

For those of us with Graves’, our relationship with our endo is a long-term one, so we definitely need a doc who will take our questions and concerns seriously.

Let us know what happens with your appointment!

EDIT: Go ahead and perfect that letter if it gives you some peace, but I probably wouldn’t *send* it until you are established with another endo…sometimes the waits can be long to get in to see a specialist!

[smtucker]

#1176015

I did do the right thing. No wonder I found myself “disappearing” over the past two days. Twice yesterday, I had to sit on the floor because I was sure I would fall over.

My blood pressure, which was severely [for me] elevated on the 13th is now 80/60. She checked it four times, once lying down. CBC counts are elevated as well. Still waiting for those other numbers to be posted.

This doctor really listened, and thinks that I made a series of correct decisions. Probably should have gone in sooner.

[PolishTym]

#1176016

I felt worse before I better. It was a real shock to the system getting Graves and then trying to bring things down. The ‘it is a marathon, not a sprint’ mindset helped, and stills helps, me get through. Give yourself time and do not hesitate in telling your doc how you feel.

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