[AzGravesGuy October 15, 2013 at 6:09 pm Post count: 160]

#1173648

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.

[KimberlyOnline Facilitator October 16, 2013 at 12:19 pm Post count: 4294]

#1173649

Wow, your story has had more twists and turns than a Dan Brown novel! Hoping this is finally a good sign that you are headed for stability!

[Raspberry October 16, 2013 at 7:01 pm Post count: 273]

#1173650

Wow AZGravesdude, a TSH of 12 sounds like no fun at all. I just did the survey Kimberly posted and as I checked off the hyper and hypo symptoms I realized that for me anyway hypo is so much worse than hyper. I hope that this is a sign for you that you are finally headed in the right direction. Maybe the RAI just had a really really delayed effect!

[AzGravesGuy November 3, 2013 at 4:42 pm Post count: 160]

#1173651

I have been off all meds for 2 weeks and I think I still feel a little hypO, but not bad. New labs will be drawn Thursday of this coming week.

My endo appointment went very well. I actually clicked with this one and am very happy with the discussion we had. Everything was great, she even mentioned the potential for remission.

Then she did an ultrasound.

After muttering “oh god” under her breath I asked what the problem was.

She turned the screen and showed me what looked like a crumpled ball of paper. She said this lobe of my thyroid should look like a smooth golf ball. It did not. ( I asked for a print out of the image)
She then said it was extremely inflamed. I said I have never felt better.
She said if it looks this bad at my recheck in 3 weeks she is doing a needle biopsy for cancer. I said sure.

Then I promptly drove home with a white knuckle grip on the steering wheel and had a massive anxiety attack. Lol!

After calming myself down and coming back to reality, I have decided that whatever we find at the next appointment, I will take it in stride. This disease has thrown my life upside down and tried to fill it with turmoil so many times, I refuse to allow it anymore. Without proof, I refuse to be concerned. I still have never felt more ‘normal’ than I do now and that is all the proof I need that I am headed in the right direction. For the first time in years I feel good. Really good.

I cannot say if it is the diet changes, the meditation, or the maybe the RAI finally working over a year later, but whatever it is, I haven’t felt this peacefull in almost a decade. I have some joint aches which make me believe I am still subclinical hypo, but I also remind myself I am not a spring chicken and some mild aches are not uncommon, especially after the havoc Graves’ puts our bodies through.

My Aetna insurance through the marketplace starts in January, so I just have to make it through December without any major incidents. I have lived for years without insurance with Graves’ so this should be an easy challenge.

Every day for the past year I have told myself it will get better. Finally feeling some results is the best feeling ever. “Profound remission” or not, I refuse to let Graves’ or Graves’ induced anxieties control my life.

I hope everyone on this board finds their magic combination of diet, medication, treatment, and mental strength to overcome this disease. I still have a ways to go but there is hope. Never give in to this disease.

[Stymie November 3, 2013 at 5:57 pm Post count: 195]

#1173652

AZGravesguy

I wish you the best of luck at your next appt. hope things stay going in the positive direction.

Much love and hugs.

Diane

[SueAndHerZoo November 3, 2013 at 6:46 pm Post count: 439]

#1173653

Way to go, Graves Guy – your outstanding attitude has probably had a lot to do with your lessened symptoms and improved health. You’ve got this, it does NOT have you!
Sue

[Raspberry November 3, 2013 at 8:38 pm Post count: 273]

#1173654

AzGravesGuy wrote:

I hope everyone on this board finds their magic combination of diet, medication, treatment, and mental strength to overcome this disease. I still have a ways to go but there is hope. Never give in to this disease.

AZGravesGuy, you are awesome. I pray that all turns out okay for you in the three week followup. I would think an RAI fried thyroid wouldn’t look normal anyway? Tonight is a pretty dark night for me feeling like Graves’ has ruined my life to be honest, but reading your courage is inspiring.

[KimberlyOnline Facilitator November 6, 2013 at 10:03 am Post count: 4294]

#1173655

So glad that you finally connected with an endo that you are comfortable with — and keeping my fingers crossed for good news at your next recheck!

[Shugie53 November 7, 2013 at 7:49 pm Post count: 17]

#1173656

I feel so bad for you hon! Something doesnt add up thats for sure! Ive been on atenolol for yrs as a blood pressure pill. My heart was racing for months & I just hought “well I prob need stronger dose” I take 25 mg. I just assumed it was stress & menopause kicking up again. Like you Ive had alot of the symptoms for a decade but Im the typical middle age woman. I hope your endo tried male hormone therapy for you like testosterone. You might have low T in a hormone way.
Re anxiety: I totally understand that and yes it is real and yes you need to get something to help that like xanax. My spouse had it real bad for yrs after he was dx w leukemia. Hes better now but still has attacks of it.
I wonder if you need a 2nd opinion?

[Shugie53 November 7, 2013 at 7:59 pm Post count: 17]

#1173657

Raspberry wrote:

AzGravesGuy wrote:

I hope everyone on this board finds their magic combination of diet, medication, treatment, and mental strength to overcome this disease. I still have a ways to go but there is hope. Never give in to this disease.

AZGravesGuy, you are awesome. I pray that all turns out okay for you in the three week followup. I would think an RAI fried thyroid wouldn’t look normal anyway? Tonight is a pretty dark night for me feeling like Graves’ has ruined my life to be honest, but reading your courage is inspiring.

to Raspberry : Im in the “this cant be real” stage. Ive had the dark thoughts too but Im still like “really? its that frikkin hard to treat?” Every time I give in & cry somebody comes to mind that has worse things. this is not really related but our neighbor was helping someone cut trees today & the top fell out of one and killed him right there on the spot! what are the chances of that! I feel so sorry for his wife, wow, unreal. Whats the big deal about taking mild steroids every now & then if it makes us feel better? they make it sound like its a death sentence or certain blindness . come on there has to be something to ease the situation l can deal w taking a pill for the rest of my life but in a hurry to feel better. Have you had a stressful or traumatic experience before ?

[Raspberry November 8, 2013 at 10:07 pm Post count: 273]

#1173658

Thanks Shugie – I find the “this can’t be real” stage can go on for quite a while! My Graves’ was triggered by a number of stressful events and I believe it keeps me from settling down into remission even now as new stress piles on. Still we pick one of the three treatment options and do the best we can. I’ll not go on though because I don’t want to derail AZGravesGuy’s thread….and btw where is he? Please send us an update when you can dude!

[AzGravesGuy November 17, 2013 at 6:24 am Post count: 160]

#1173659

Well, I did not end up getting a needle biopsy. Big relief there!

I have flipped again and am now subclinical hyper. Oddly enough, I don’t feel any different. I still feel really good at this point. We decided to start the Methimazole up again in a week, 5mg a day for the first week, then 2.5mg a day thereafter and recheck blood levels in the middle of December. The endo would rather keep me from going hyper again than waiting to see how high I climb.

My surgery consult is booked for the second week in January. I will ring in the new year with new insurance (thanks Aetna!) and hopefully be thyroid free by St. Patrick’s Day.

Shugie, I have been in the disbelief stage of coping as well. Do not let it get the best of you. Yes other people do have worse life events, but that doesn’t mean our condition is anything to sneeze at either. It is ok and good to cry. (crying relieves stress and releases some great brain chemistry) We all deserve support and the confidence that comes with knowing this disease CAN be controlled, treated, and kept manageable. Learning to be patient is the biggest factor in feeling better. It sucks but it’s the lesson Graves’ teaches us all.

I have had my free and total T checked this year and both were in normal range. My anxiety was over my endo’s reaction to my ultrasound and her choice of words. Now that I have confirmation it is as Raspberry said, just a fried thyroid, the anxiety has disappeared again.

Raspberry, stay strong in your belief that times will get better because they will. You are a great person and a strong person. Don’t give in to the stress. Snub your nose at it and show it who is boss…..you! Graves’ tries to make us forget who is in control of our lives. Don’t lose your perspective.

Diane, Sue, and Kimberly, thank you for your continued support. I appreciate knowing all of you are still along for the ride.

Is it January yet?

[SueAndHerZoo November 17, 2013 at 9:39 am Post count: 439]

#1173660

Yup, still along for the ride….. we’re all family now. (and we probably understand each other much better than our biological families do!)

Hurray for insurance and DOUBLE HURRAY for potential surgery! Get that sucker OUTTA THERE!

Your attitude and diet modifications have been so commendable…… you ARE going to beat this thing and will be so much healthier and happier at the end of this ride. it seems like an awful way to get an education but I have learned things about myself and my attitude towards life, priorities, etc. that I would otherwise still be in the dark about had it not been for Graves.

My surgery was 4 months ago and I have not regretted it for one moment. I think I’m just about at the perfect dose of Levothyroxine and I can’t remember the last time I’ve felt this good – possibly decades. Sure, there are still some ups and downs but they are manageable and now I don’t let them get to me the way I used to because I know they are temporary and the “ups” are right around the corner. Yours are, too.

Congrats on being so close to being the victor over this thing. What a ride, huh?
Sue

[KimberlyOnline Facilitator November 18, 2013 at 11:04 am Post count: 4294]

#1173661

Thanks for the update! That’s amazing that you’ve flipped subclinical hyper again…but it’s great news that you didn’t end up needing the biopsy.

Looking forward to sending you a virtual green beer on St. Patty’s Day to celebrate!

[Sube08 December 2, 2013 at 7:25 pm Post count: 5]

#1173468

Wow Azguy, I just caught up with your progress. Your experience is actually helping me and I’m sure others understand how many ups and downs one person can have.

I’m one of those with a “failed RAI” also, but finally in October 2013 after 19 months (March 15, 2012 RAI) my TSH went from .006 to 2.77 with my ft3 and ft4 below normal but the bloodwork was done when I came down with pleurisy and pneumonia. So while my endo was shocked, stunned and in disbelief, told me I was cured and ordered up a script for synthoid, my PCP said don’t just stop taking the PTU and beta blockers just yet because that would be dangerous to my health. So I’ve backed off the PTU and Beta blockers like the PCP said abd the endo agreed as well, down from 12 PTU to 6 a day and from 6 beta blockers to 3 a day for a few weeks and then have new blood work done to see were I’m at.

I’ve recovered from the illness and am feeling fine with the lower dosages. I actually ran out of PTU and was trying for 1 pill 3 times a day but started feeling nervous and such so I got the script refilled and went back to 6 a day, which is still a lot but less then the 18 a day I was taking in 2007. I’m not considering any other treatment at this point since I don’t have the other symptons that you speak of. I feel lucky about that and was about to consider another dose of RAI before this last bloodwork. The funny thing is I just made my last payment on the RAI treatment I received in 2012 in Oct of this year and then my TSH rose. I thought darn maybe I should have paid that bill off a little sooner I would have had better results sooner!

So your not totally alone in a “late bloomer” reaction to the RAI but please keep up the post because I’m very interested in your outcome and pray for your health and wellbeing.

Thanks again!
Sube

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