UPDATE!!

[stella5349]

We haven't done a check in lately on our members. How are things going for for you with your thyroid treatments? Anyone try new things and feel better? Do you see any improvements or declines on current treatment? Anyone still having a tough time?

I was thinking today about LazyMoose and wondering how he is doing and then I realized we hadn't done a check in for quite a while.

Please share your stories here as an update. Everyone new and old....

I'll be the first and say overall I still feel pretty good. A little on the nervous side losing weight still and not trying so hard but if that's all I have to complain about then I should just "clam up." Seriously, I feel good and very blessed to have my health back and my hope one day is to have all of you feel this well too.

Have a great weekend and I look forward to seeing your posts.

stella5349 :)

[HessyKat]

god bless you all for sharing your fight with this disease . It has helped me so much just to read everyones struggles although i do not wish this on anyone but it helps to know you arent alone.

[lmosall]

Last ckup and blood work beginning of September...euthyriod for now since the overdose of MMI that put me into mega-hypo phase.  though the last time I was there the Endo left his laptop open, and I spied his notes stated "HYPO" until I went HYPER in May and then they found the Graves (600+ TSI).  Before he looked at the lab results, everything I explained to him he assumed I was hyper again, and mentioned RAI.  told him I would "consider" it.  In the meantime he wanted to put me back on MMI at 5mg.  Then he looked at the lab results, (which I had done the Friday before, they normally don't do pre-labs due to co-pays), and my tsh was 2.55(0.4-4.0), ft4 was .91(0.65-1.4) and t3 was 88 (72-170).  I go back in mid-November for the bi-yearly US, and reck.  I feel somewhat hyper, have some joint aches and pains, but nothing like in the early Spring...overall, I feel great right now! (Despite the 20lb average weight gain).

[TwistedHelix]

Hello Everyone,

I'm kind of new.  I've posted one question and a few answers.

I am now one week post right lobectomy and isthmusectomy (if you're curious about my surgery, I just posted a journal entry about it).  I had the partial thyroidectomy because of a "suspicious" result on an FNA for a 2.5 cm nodule first discovered in June of this year.  Prior to that, I'd never had any problems with my thyroid (barely even knew where/what a thyroid was before June of this year--sad).  Don't have any history of thyroid problems in the fam, either, as far as I know.

I'm doing really well so far.  I have a little trouble getting to sleep at night, but I suspect that will improve once I get back into my regular exercise routine and diet.  I go tomorrow afternoon to have my stitches removed and get the results of my final pathology report.  Once I'm released by the surgeon, it's back to the Endo to have my levels checked.  I don't feel any hypo symptoms thus far (though I understand the T4 half-life is about a week, so I wouldn't necessarily notice any for another couple of weeks), so perhaps I'll luck out and not require meds?

Thanks everyone for all your help!  Good health to us all.

[Super_sally888]

Happy birthday to your wonderful little girl!
I also find I do very well on Erfa.
With the right medication we on thyroid meds do get our lives back.
Congratulations for fighting so hard for her.
You are a great source of information for others.

[LazyMoose]

I leveled off on Erfa Thyroid mid summer I think,  still slightly hypo. Trying out a new endo in a couple weeks that supposedly listens to symptoms and does not worship TSH. Wish me luck with all that.

I need to get FT4 mid and FT3 at the top, regardless of TSH. I have proven in the past that is where my symptoms go away when on dessicated. As much as I like my couch, life is too short to be napping after work and on weekends.

After my three month long 'episode' with reformulated Nature Throid this spring which made me more hypo than I've ever experienced with FT4 under the bottom of the range, its taken forever to recover, it really messed my body up. It changed summer plans a few times and just sitting around the house is not how I like to spend my free time.

Since a hypo state magnifies any other health issues, past or present, my big issue from hypo is body pain - possibly more than anyone else here. Up until I was 35, I  competed in a few individual sports that now days might be classified as 'X-games' material, LOL (who knew at the time?), so Ive done my share of flying out of control through the air at speeds and a lot of that pain comes back to haunt me when I'm hypo. Trying to heal up some type of hip / left thigh bursitis and tight low back I've had for months right now, I really think I need higher FT3 levels to speed this up.

Last November / December I felt the best in years on a dessicated that is no longer available (Time Caps).   My frees were higher on that, but my TSH was too - so the doc allowed it. I have proven that I can feel better than I currently do, so I have a know goal to reach for..

The waiting game continues.......

[stella5349]

Laurie - don't get discouraged.. Sometimes many are on all at once and then it can be hit and miss.

[redheadaussie]

Sheesh, where to begin! Hope I don't scare off too many newbies...but here we go!

Left lobe removed May 2007 due to indeterminate FNA. Turned out to be Follicular Adenoma (phew, no C word in there!) No meds.

Right lobe removed Dec 2007 due to Hurthle cells and a really revolting goitre that was strangling me due to multinodular goitre , Hashimoto's and one big 4.5cms Hurthle cell nodule. I had at least 10 plus, varying sized nodules, but that one was a nasty mamma!

Here's the bad bit.....Parathyroids failed to kick in after 2nd surgery. Heck and high tides with calcium levels ever since. Thyroid meds are a total confusion! I take a high dose I go hypo, I take a low dose I go hyper...What gives!
Presently in Hypoheck and now about to be referred (hopefully!) for Nuclear scan to see if any thyroid tissue is elsewhere in my body.

So conclusion, 3 years (almost) post op I feel........&$#@@*&%#!!!!!!!!  Grrrrrrrrrrrrrrrrrr

Have a nice day!

[laurielyn55]

I asked a question but only got one answer. Thank you to that person. I am new to all of this and don't understand any of it. I have many health issues and am on 22 medications but my tsh was 8.8. I have no idea about the other things. That was all I was told. I am not sure if that is what has made me feel so bad but I can't even walk or stand because my legs are so weak. That may be my disease -Anklosing spondylitis but it came on about the same time that my extreme fatigue, depression, no energy at all, and I gained weight but was eating less. I also have swollen glands, a hard time swallowing, and pain in my ear but most of all I can't breathe. I do have asthma and COPD even though I never smoked but this is different. I cannot breathe so I had a sonogram and more blood work. I am  now wondering if  I  have cancer of the thyroid. If anyone here has had it can you please help me and tell me if those are the symptoms?

Thank you!!
Laurie~

[Mamamia30]

I don't have an update yet. I see the dr on Monday to get the uptake scan results and hoshi test results. I have the dr do blood tests to check tsh t3 & t4. I will also see if he can refer me to an endo. I really need to find one. A family doctor isn't going to be the best of help for me.

I've been off meds for 5 weeks now due to the uptake scan. I don't like levothyroxine so I will ask for something else. My symptoms are getting worse by the day. I can't wait til monday.

I'm so greatful for all the help and advice I get on here.

Thanks everyone. I'll update after Monday.

[LIZZIE LOU]

have only posted here once...but just found out yesterday that i have papillary carcinoma...gggrrrrr.

now what?  this is all so new to me.   have yet to start looking for an endo...still trying to absorb the big "c" word.

from what i understand, if ya gotta have thyroid cancer, i lucked out.  guess i can at least be thankful for that.

(just starting the journey)

[froggy0936]

Hi everyone! First, I'd like to thank all members of the forum for taking the time to listen and give the best advice they can..a million thanks to you all!

I really don't know what I am! Haha. Labs still screwed up. Seeing a new Endo on September 28th. Hopefully she is a more knowledgeable, compassionate one who actually LISTENS to my symptoms.

In December it will be 1 year post op TT and still not feeling so hot. Better days ahead. I hope.

I pray for us all as we fight these issues together!!!!


Lynda xoxox

[Nat_16]

Hi everyone...
Hmmm, where to start:
- Still unstable on meds, still hypo.  Labs are thursday week.  
- Still not loosing  my "hypo weight" but havent gained anymore in the last 4 weeks either...
- Still battling to find a doc who listens to me...
- Mentally, it's getting hard to keep positive and to keep going...
So, really, not much has changed with me lol...

Stella, glad to see you're going well
Super_Sally, congrats on the baby!!!! :)

Take care all :)

[Super_sally888]

Hi Everyone,

Hey, I'm the second to update.

1)  I am now diabetic (triggered by a single dose of steroid) and on insulin for the past 3 months.
2) Am still on a combo of ERFA and Thryoxine, which works for me.
3) I am now 6 weeks pregnant and hoping this is a sticky baby.

My endo when I told him I was pregnant said "Congratulations! I have never had a patient with so many problems get pregnant before!".  How awe inspiring!

My obe told me that she and the fertility dr were quite concerned by my medical issues........ oh dear!   She asked for my endo's number so she could discuss with him!  Am glad she seems the type to collaborate closely.   Both diabetes and thyroid are very manageable with the right knowledge, the pituitary adenoma seems stable... as does everything else.  I don't know why these doctors get so concerned.... :)

I like breaking the rules / not being typical.  And getting away with it by being knowledgeable, persistent and stubborn.

Take care all.  Have a great weekend!