when does it end I want to get off!!!!

[kim0484]

okay..I have read all of your post and please believe you all have been a blessing to me because when I have my total thyroidectomy March 2010 it was horrible. I had beem misdiagnosed for about 7 years and almost 80 pounds later. I was diagnosed with everything from lupus to simple diabetes....which by the way was all wrong. I saw 7 to 10 doctors and speant about $80,000 trying to figure out what was wrong with me. My hair was thinning and eventhough I had the best diet on the planet I would only lose a few pounds here and there. My last resort was my ENT and he almost did not want to believe me but I convinced him that something was seriously wrong. Well not only did they find that I had papillary but also fallicular cancer. It was a nightname. Long story short here I am a year later and my hair is still brittle and I have lost the puffiness and some of the weight but I feel like crap. My whole body hurts and I have headaches and my doctors keep telling me it will get better. I have told them that if this is the alternative give me the CANCER back. I am so tired all the time and I am an active girl and I hate being tired ....not to mention my brain fogginess is horrible. My neck still feels like a bumpy read..Where does it end. How can I be a part of some type of research to figure out how to help people oin my situation who are possibl;y dealing with Hashimotos, Lupos..or any other autoimmune due to this issue.

PS: I am only 33..I have no children due to the cancer and don't know if I ever will because of the long misdiagnosis.


This discussion is related to Issues after Total Thyroidectomy.

[78london]

I'm sorry you had to go through all that.

I had papillary carcinoma. I had many symptoms too. Some symptoms I had since I was a kid, but didn't make since until my diagnosis. Its been 15 years this last January that I have been cancer free!

I'm sure you're sick of hearing it, but it does get better. It takes time for your system to adjust to each dosage change. They would test me 6-8 weeks after changing my dose. I also read that if you take you weight in kg and multiple it by 2, that will give you the ammount you needFor example, I'm 141 pounds. That equals 64 kg, times 2 is 124. I am on 125 mcg.

Here are some things that I had to learn on my own:
(I personally do better on leveothyroxine)
Take it 1 hour before or 2 hours after eating, or on an empty stomach.
Take it the EXACT time every morning.
Some foods/medicines interfere with absorbing the medication: antacids, anything with calcium, and walnuts. I was told not to take any antacids or  anything with calcium within 4 hours of taking my thyroid med.
Keep the medication from getting too hot. I keep mine in the fridge.

I hope things get better faster. Like the others; I've been there and done that. I just wish I had the internet back then to find support groups like this one.

[Barb135]

We've all "been there, done that", so hang in there; it does get better.

Will look forward to seeing your labs, then we can better assess your situation.

[kim0484]

Thank you all for even caring...I appreciate all of the good advice and I will post all of my result later. I am at the end of my rope..so thanks

[flyingfool]

You sound significantly under medicated.

You need to get a full thyroid blood panel done. Make sure that you get Free T4 AND demand Free T3 as well.  Please post the results and the reference ranges when that occurs.  From that many people here can help give you recommendations and thoughts.

[goolarra]

Yes, post labs, please along with reference ranges.  Ranges vary lab to lab and have to come from your own lab report.  You do sound undermedicated.

[tangerinelz3]

I'm so sorry you are having such a hard time. Thyroid problems are horrible! I used to hear over weight people blame their thyroid on their problems and I always thought it was an excuse. I know better now and feel terrible that I ever thought that. I hope things start to get better for you. Keep fighting.

[flyingfool]

You need to post your blood labs.

it sounds like you are still very hypo and need more medication.

[Ladyrumrunner]

I'm sorry to hear that you are going through this. Yes hypo ***** but believe me when I say it does get better. All of the symptoms youndiscribe I have been through. You did not mention what type of Meds they have you on. While some Meds work for some people other Meds work for the rest of us. I personally had graves disease. I was allergic to the anti thyroid Meds and had to do RAI. With in 10 days I was feeling the hypo symptoms but the dr said that the tsp was normal so no Meds for me until the second blood test 8weeks later. My blood work was so bad in to the hypo scales thatnthey immediately stRted me on synthroid. With in 24 hours I started to have issues with the Meds however the dr would not try anything else. I went 6 months of hell-0 yes my tsp was creep in back down from 100 but I was not feeling any better, I actually felt worse. Even though I was extremely hypo I actually felt better with no Meds compared to being on them. Since my dr would not listen and the endo was adimate about me staying the course on synthroid. I took matters into my own hands and started to interview new Dr's. The head of a reputiable hospital saw me and how frustrated I was with my current care and was willing to prescribe a t4/t3 dissected pill for me even though he was not use to prescribing it. Even on the low dose he started me on I Wasserstein feeling better with in 2 days. Brain fog lifted with in a few days. Energy was coming back, aches and pains were going away.

Before the med change I dreaded the dose increase because of the heart palpitations, anxity, brain fog and exhaustion would get worse.

I have been on armour for 2 months now and I have received my best blood test yet and I am feeling better everyday. I am one of those that do not fit the Dr's standard method of medicines for hypothyroid. I do not covert t4 to t3 well. I now have energy, no more taking of the high blood pressure pills and not more anxiety pills. I can function at work, my memory is returning and everyday I feel a little better.

I would suggest that If your body is screaming at you that you interview another dr that will assist you in feeling better. I have had 6 Dr's in 12 months. Once my primary noticed I was doing better I told him it is because another dr listened to me and gave me a different thyroid replacement med and with in 2 days I felt better. He was amazed so much with my recovery and that I was not complaining about issues and that I was requesting a dose increase (which never happened on synthroid) he started to listen to me. Now he increases my armour dose at my request.

I have figured out that Dr's don't know everything and that we as the paitents need to manage them. If they do not listen to us who are living this hell-0. Then we need to find one that is willing to listen and assist us.

There are alot of great people on this site that are willing to listen and give you their history. that is what made me realize that I was not alone with my hypo issues and the Meds being wrong for me. I was willing to drink draino, if that was going to make me feel better. Thank god that I did not have to go that route.lol

I hope you can find your right Meds to assist you like I was able to. It does not happen over night but you will fell better as soon as you start to get closer to normal on the thyroid roller coaster.