TT 8/11 put on Cytomel to "get me through" Off Cytomel 9/12 and on LID. Still ok, Waited for RAI date (supposed to be week of 9/26) but Doc went to a convention, my chart untouched on her desk according to her nurse and didn't get me scheduled until 10/17. So I am not feeling very well to say the least. (Do your arms go numb?) I wake up in pain at least 5 times a night... trying to work full time, but have gone home early 3 times and Doc says I am supposed to feel this bad. Won't start synthroid until 2 weeks post RAI and full body scan on 10/17, so that means hypo until 10/30 or so. Really??? 4 more weeks??? I am trying to find a new endo already. AM I CRAZY? or do all Endos not care??? Is this really the way it is supposed to be? my Regular doc did a TSH as well as a few other labs today for me so at least I'd have an idea how close I am to the hypo goal (because the endo wasn't interested..) I cannot believe they really expect me to carry on a normal life like this. I want to be put into a coma until it is over. I am so humbled by those fighting the "bad" cancers.
Welcome to what is lovingly (or not) called Hypo Hell. I have been where you are, and am currently going through it again. You're not crazy. You're not a wimp. You're experiencing something that gets played down by every doctor I have ever met. It's awful. The numbness you have is normal, so is the fatigue, crying spells, being absent minded, staring off into space, joint pain, swelling, so on and so on. By now your TSH is sure to be pushing 150 if not higher....the higher it gets the worse you will feel. I can't speak on your particular doctor because all of them seem to have a different way of doing stuff, but mine let me start on my synthroid 4 days after my total body scan. It took me a good 3-4 months to feel like myself again, though I have always felt like I was "missing 5th gear" since then. A lot of doctors look at lab values and don't listen to how you say you feel. I know it's extremely difficult but FIGHT for yourself. You know your body better than anyone and deserve to feel like a human being again. I had a long conversation with my thyroid specialist (I chose an internal medicine doctor after a very bad experience with an endo) and we have established a treatment plan that we both agree on. I will suffer through hypo hell, be off my meds, go on LID if he will agree to base my medications and what-not on how I feel, not what my labs are.
I feel for you and I understand EXACTLY what you are going through. One of the most frustrating things for me was feeling like I had no will - I literally had to "argue" with my right foot just to get out of bed. I too worked through the whole experience. Do you have an understanding employer? Do you have a good support system at home? I couldn't have made it through my ordeal without the help of people who had been through it. Big hug - I PROMISE you it gets better.
Last edited by moderator2; 10-04-2011 at 03:46 PM.
The Following User Says Thank You to kharmah For This Useful Post: lizabet61 (10-04-2011)
I had a better day today, Still extremely exhausted and achy. Brain fog seems like a part of life now. Should hear from lab work tomorrow. I actually slept 6 hours with a little pink allergy pill. I am much more relaxed, just ready to get this RAI done. trying to research to see if the scan should really be done 2 weeks post RAI then start synthroid. Seems an awful long time to wait for the scan... there seems to be sooooooooooo many thoughts on treatment. Looks like for something so curable it would be easy to set a protocol...
Glad you're feeling a little better. I'm still confused on a lot of the differences between doctors and treatments. Protocols seem generalized at best. Your doctor wants to wait 2 weeks or so between RAI and total body scan, which is probably best. My doctor scheduled my scan for 4 days after my RAI and a lot of remaining thyroid cells lit up on the scan. Now I'm learning that enough time didn't pass and that everyone would have cells light up so soon after taking the RAI. Because my scan wasn't clear I now have to do a "tracer" scan at the end of this month. If anything lights up on that I'll have to do another major scan. There's also the thyroglobulin test, which not every doctor checks. The thinking is that if your thyroglobulin is elevated then there is a reason to look for more cancer because it can only exist if there are ramining thyroid cells; if your thyroglobulin in zero then there's no reason to treat for anything. This, coupled with thyroid ultrasound (neck ultrasound really - we don't have thyroids anymore) can be an indicator if further RAI is needed. Do you know if your doctor has checked your thyroglobulin? It's usually only checked when you are in withdrawal (hypo).
I have heard and read a lot about papillary thyroid cancer being a "good" cancer and that it's very treatable, but truth be known there's nothing easy about being a cancer patient and there's nothing "good" about it. Everytime I hear that I want to tell the person "if it's so good than you try having it". It's a life changing event.
Please keep me posted on your progress. Hope you get to feeling better soon.
HEY!!!!!!!! I am so excited!!!! TSH 88, Thyroglobulin down to 2 from 150 ish and neg Thyroglobulin antibodies!!!!!! I told a doctor to LEARN to treat patients like human beings with emotions not numbers at 6:30 pm tonight, (I have waited anxiously since Tuesday for lab results, my Nurse practitioner went to a conference and forgot about me as did the endo in Florence) SO, I told her partner exactly how I felt...! PRICELESS!!!! Looks like my treatment will be a success on the 17th! I am stoked!!! (tired but stoked)!!!!!!!!!!!!! Yay ME!!! I have a referral in to a local endo so maybe I can just get it in under the wire to get RAI moved here to my home city, we will see, if not, the hour trip it is. I am just ready!!! Praying for all those dealing with heartless doctors that don't care. I hope the one I spoke with tonight will change the way he sees his patients. He thanked me for the advice after our conversation! I assured him I will be requesting my records when I obtain a new medical internist.
YAY!! I'm proud of you - way to stand up for yourself!! So glad the ball is finally rolling and you get to feel "normal" again soon. This isn't an easy journey, even after your RAI, but I promise life goes on. I hope your new doctor listens and treats you well...if he/she doesn't, keep fighting! I had an appointment last week - I have my "tracer" on Halloween, a neck ultrasound on Nov 14th, and body scans and stuff in between. I have to stop my cytomel tomorrow so hypo hell, here I come! I'll keep you posted and I hope you do the same! Please let me know how you like your new doctor and how everything goes. Oh, and when you take the RAI tablet make sure you have lots of sour candies and stuff. You'll need them to fight the dryness. I did that and it worked. I did lose my ability to taste for about 2 weeks, but it came back. Hope to hear from you soon! Good luck!!
praying for you as you go into Hypo Hell! Do you have to LID too? I am feeling very empowered after telling the doctor to pay closer attention to the patient not the numbers. I think he was shocked I knew more than he did about Thyca and what my levels meant. I just hope none of his patients are even stuffed in a corner and forgotten and that he will listen. Best wishes for clean reports! I will be enjoying sour patch kids and lemons ! My friend is a speech therapist and is coaching me! I'll keep you informed, and you keep me up to speed as well!!!!