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Welcome to the wide wide world of “subclinical hypOthyroidism!”
I was shocked into silence.
The words rang in my ears twice as the nurse repeated herself with a laugh.
Progress has been made.
Tsh now 12.69 (.45 – 4.5)
FT3 now 2.4 (2.0 – 4.
FT4 now .8 (.8 – 1.7)
This explains the severe brain fog, exhaustion and ‘substantial’ weight gain the last few weeks have given me. The body aches, sore throat, and total lack of focus all make sense now.
It’s never felt so good to feel so crappy! Lol!
My TPO-Ab is 152 (<35) so something is still kicking around inside there.
I am discontinuing the daily 5mg of methimazole and we will see where I end up in a few weeks. Endo appointment is a week away. Now I really can’t wait!
My new meditation mantra these last few days has been “profound remission”. Maybe some day, but not today. That’s ok. I am happy with these results.
Also my Gliadin panels (deamidated and regular) came back negative. I am still dropping gluten from my diet for the most part. It was a small element of my diet anyway so going gluten free won’t be a major step.
After reading The Immune System Recovery Plan by Dr. Susan Blum, I have decided to take some of her recommendations and so far so good. So long soy, gluten, corn, and potatoes. Hello probiotics, more fruit, and coconut milk yogurt (bluh!).
Even if it isn’t the plan for you, her book is still a pretty interesting read.
Thanks for keeping your hands on the bar everyone! The roller coaster ride is not over yet, but this turn is pretty exciting.
Hey everyone!
Thank you for your words and pm’s of support. I appreciate all of you coming along on my experience.
I have an update.
Latest labs: FT3 is 3.0 (2.0-4.
FT4 is 1.0 (.8-1.7)
TSH is still < .01 (.45-4.5) So, I am running a bit more hyper than I was in June, but still feeling great.
I am still on Methimazole 5mg every night and off the Atenolol completely.This 2 jobs thing almost broke me a few weeks ago, but I got over the stress aspect of it by:
1. Meditating morning and night for at least 20 minutes at a time.
2. Realizing that without facing challenges head on, I will never achieve my goals; whether it be in work or health. So I stopped complaining and started doing.
3. I stopped being afraid of tomorrow. The “what if” machine in my head has been silenced, I hope for good. Learning to relax completely has helped me without a doubt. It stopped the nightmares too.
As great as all of this sounds, there are still day to day pressures and stresses that at some moments bring me to high levels of frustration. ( I am not a robot unfortunately. If I was, I would have been recalled and discontinued a long time ago. Lol! ) But at the end of the day, I leave all of it at work where it belongs and once I meditate to decompress, it is the LAST thing on my mind. I take that back, it is not on my mind. Period.
My eyes have calmed down. My weight has started a slow creep skyward. I am up 10 pounds since my last post in June. Well, I think it’s slow considering it will soon be a year since my failed RAI. Still being 40lbs lighter than I was then is good enough for me! (I blame Raw avocado chocolate pudding…google the recipe and enjoy! I have been eating a lot of it since avocados are in season. “Good fat” or not, it is still fat. It’s awesome though, especially when it is 110 outside and I want something cold, creamy, and chocolate. A bowl of that with some iced coconut water and I can conquer the world….or at least my back yard.)
I have spent a good part of today catching up on all the surgical posts and experiences. It has left me very excited and optimistic about the future.
Thank you everyone for posting. Hopefully I can follow in your complication free footsteps when the time comes.
To all of you reading this, I wish you the best of health and the ability to find some peace and happiness while battling this monster we share.
Rob
Hey everyone!
I apologize for being absent for the last month or so. I am happiest when I am busy at break-neck speed. Lol!
First off, the bloodwork. Having insurance has opened a whole new door of diagnostic testing I was never able to afford before.
The normals:
Cbc, ERS, CK, cholesterol-142, CMP, CRP, Thyroglobulin Antibodies <20, ANA-negative, U/A....all normal.
The good stuff:
TSH <.01 (.45-4.5) still super low.
FT3 4.8 (2.0-4.
FT4 1.5 (.8-1.7)So the 5mg of methimazole once a day is working. No wonder I feel great! A little hyper, as I prefer, but great! Still on Atenolol 25 mg twice a day.
Here’s the kicker: TPO-ab is 508 (<35) so my body is still VERY angry at my thryroid. I however, am not.....anymore.
The only drawback I have found is even WITH insurance, finding an endo that can see me this year is still a challenge. A few I have called won’t even see me, they are diabetes dr’s only. Losers.
Working 2 jobs has left me with little time to feel sick, obsess over symptoms, or worry about the future. It isn’t an approach that would work for everyone, but it has worked like a charm for me. I haven’t felt this good physically or mentally in a LONG time. I even found the time to start walking/running every other morning. I have restless legs, I guess. I wake up early and can’t lay there any more. So down the street I go. Now that it is starting to NOT cool down at night here I may use the treadmill that has been an ironing rack for the last 3 years, but I like being outside. It isn’t too hot before the sun comes up, plus I run into an occasional coyote and what I think was a javelina. I didn’t stick around to find out for sure. ( They can be aggressive little pigs. )
So, in effect, I have my life back. The RAI failed, but I am still better overall symptom and spirit wise. Invincible? No. Optimistic? Yes. ATD controlled? Yes.
Surgery has been mentally bumped to next spring, as I want to take full advantage of FMLA when I get it done. I don’t feel as rushed anymore because things are pretty stable right now. Plus I still can’t seem to get scheduled with an endo anytime soon.
My left eye has receeded slightly. The right eye has caught up somewhat. They almost match, but no….They don’t. I am still bloodshot and dry 24/7. The Refresh Gel drops provide a good 20 minutes of “ahhhhhh” then back to burning. The “lending ladies ” have not said anything since I became friends with the head of their department. Now we are all friendly and work goes smoothly when I am there. My original job is being competently managed by long time employees that understand my motives and no longer feel betrayed or ditched, as I still dedicate as much time as I possibly can to my own business. Early morning and weekends are my business, mid morning into evening is “nameless financial corporation” time.
It is a busy busy life, but I am surprisingly up for the challenge.
If I was ever famous and they asked me to do a commercial for Methimazole, not only would I do it, I would do it for free. That’s how good I feel. Lololololololol!
Still eating Raw, Vegan, Anti-Inflammatory. I have instituted a 1 cheat day a week policy where I consume gluten based white carbs, or grains (barley, brown rice, millet) to preserve my sanity. I cannot seem to figure out where “Miracle Noodles” fall in the mix, but they do on cheat days.
I am now down 52lbs since the day I swallowed the RAI. No muscle tone but skinny. I am ok with that. One thing at a time.
Thank you Diane, Sue and Kimberly for your words of support! Boomer, great to see another guy around here. I know there are more of us out there!
Donna, thank you for sharing your story with all of us. Congratulations on your recovery, btw. Struggles do make us better people. You are a princess and I am a prince in my own right. Anyone who disagrees better be prepared for a verbal evisceration. Lol!
Off topic, but I need to talk to someone about it:
I had an old friend call last weekend. She was in town for a day on what she lovingly called her “cross-country farewell tour”. Little did I know she has battled pancreatic cancer for almost 3 years and was here to say goodbye to people she knew before she ended up on a beach in Hawaii, where when the pain eventually becomes too much, she will take the pills. No more radiation, chemo or surgery. It all failed and her clock was running out. She decided to go out on her terms, in the most beautiful place she had ever been.
This meeting threw me and shook me to the core. Saying goodbye was hard, overcoming the selfishness of judgement was harder. Sobbing in an airport terminal with the weakened shell of someone I once knew to be so vibrant and energetic was not what I had planned on. I respect her wishes and now feel compassion towards her situation, despite the horrendous circumstances and overwhelming sadness I feel. Her argument made perfect sense and I have to support her wishes. Her fearlessness scared me but made me face my own ideas of mortality.What I learned from all of this was humility and acceptance that life is fragile. Whether I feel sick or not, I need to get up and take the wheel for all that life has to give, every day. I used to wallow in my own dysmorphic bubble that my illness was so terrible. It is manageable, now, but I feel guilty of ever having that mindset. ( My eyes are watering as I type this )
Meeting with her blew my mind and I still reflect daily on her words:
“No more wasting time. No more feeling sorry for yourself. Life is here to live, but you cannot outlive life, so get up. “
More so now than ever….I have Graves’ but it will NEVER have me.
Hello everyone!
I woke up early with a stress dream so I thought I would take advantage of the extra adrenaline and get you caught up.
First the bloodwork:
As of last weekend
Tsh .01L (.45 – 4.5)
FT4 1.7 (.8 – 1.7) Normal!
FT3 6.0H ( 2.0 – 4.
I am on 5 mg methimazole once a day and 25mg atenolol twice a day.
Being hyper has paid off as I can actually handle the 2 jobs right now. Insurance starts June 1st!
My TED has flared considerably, but only in my left eye. Whatever symmetry there was before is long gone, however both eyes are constantly bloodshot and dry. I feel significant pressure behind my left eye and it is gritty again, almost like I have an eyelash stuck in it, but there is nothing there. The left eye now protrudes noticeably and the face in the mirror makes me want to cry. I don’t know who that person staring back is. It isn’t me.
My new second job is in finance and some of the “lending ladies” have been judgemental about my appearance. “he must be on drugs, look at his eyes, they’re red all the time” and similar statements about me looking “crazy” have been made. Fighting the Graves’ Rage impulse to correct them and point out their ignorance has been a tough struggle, because I would not be nice about it and that would not help my case for NOT being crazy.
HR is fully aware of my condition and has been sympathetic so far. It is hurtful being a victim of the whisper conventions, despite knowing it is nothing but ignorance. I should be stronger than this by now but I am just taken aback by these people and their snap judgements. I am trying to feel sorry for them and their small, small lives but reeling in shock of their gall. Fighting the brutal honesty impulse on this has been a big struggle. I am already upset over how my appearance has changed….especially because it is only in ONE eye. They are just poking the bear.Aside from that bs, I feel good…..well, good enough. The wicked nightmares have not subsided, but I am mentally stable for the 18 hour days, not shouting at traffic, or sitting at my desks depressed. I yawn constantly but do not sleep well. My sense of humor has remained. The quiet sarcasm has increased, but it keeps my new coworkers giggling throughout the day.
I am still on the Raw anti-inflammatory diet and lifestyle….still down 56 pounds since the failed RAI. I am not hungry anymore. I have to force the protein shake down for lunch and barely feel like eating anything later…..but…..I am maintaining my weight, not losing. This makes me suspect I am retaining water. I am eating under 1000 calories a day and not losing weight….not gaining either. I have to wonder what my body is living off of exactly and why I am struggling to lose the final 5. Ah the mysteries of Graves’!
Thank you to everyone who has posted their support and have stuck around for the ride thus far. I appreciate your responses and find great comfort in knowing I can document and vent to all of you and not be judged, called crazy, or be whispered about. Lol!
It’s 4am now, time to start meditating so I can make it to Saturday! All I can do is take it day by day and make the best of it. I have Graves’ but it STILL doesn’t have me.
New labs!
Tsh: .09L (.45-4.5) 12 days earlier it was 36.43H
FT4: 1.9H (.8-1.7) 12 days earlier it was .4L
FT3: 10.3H (2.0-4.
12 days earlier it was 1.9LBoom! My old friend Hyper is back.
Back on 5mg methimazole once a day, atenolol twice a day. Recheck levels in another 2 weeks or so.
The RAI is still a bonafide fail.
That is ok though. I started moonlighting at a job with FULL MEDICAL COVERAGE. This thing is going to be cut out before the year is up. In 30 days my coverage begins and I do not plan on wasting a moment of time. TT all the way! One treatment didn’t work for me so on to the next one.My body is screaming ENOUGH ALREADY! Lol! (I am screaming it too) I am back to the warm, uncomfortable, relatively ragey place I was before. Not cool. BUT I have a much better handle on things this time around. I still go through the emotional roller-coaster every day, I am just too tired and/or familiar with it to care anymore. It doesn’t effect me like it used to and that is a great thing!
I really wish the RAI was successful, as it is for so many other people. But that is not my fate with this adventure through the Graves’ Experience. ( I like things complicated and this whole deal has not disappointed in that respect.) I am still learning every day, moving forward every day.
Thanks to everyone who has chimed in and pm’d me with their messages of support. I will keep posting with any changes if and when they occur.
I haven’t been able to keep up with any posts on the board since starting the second job. I wish there was more time in a day, but I will try to get caught up this weekend.5 AM….my free time for the day is up. Time to get moving!
