# Might just be time to attempt Remission



## HotGrandma (Sep 21, 2012)

Been on the Graves rollercoaster for over 2 years.

Ended up in a deep hypo hole for 6 months. Climbed out and brought my Frees into range on 1/4 of a 5mg per day of Methamozole per day for the past 6 months. Couldn't figure out how to cut the pill into eights. Dr Rubin's book "Thyroid for Dummies" suggested when weaning to then take it everyother day. How do you remember that? So I dosed M W and Friday. Felt great the days I took it and horrible the days I didn't. It was because the days I dosed I didn't sleep a wink. My Free's were in range not in the 50-75% range and TSH was at 5. My doc doesn't do block and replace. So I quit taking the Methamozole.

After 8 weeks my labs are: Free T3 2.9 (2.18-3.98). Free T4 1.1(0.76-1.46). TSH 2.03. TPO 10.07 (0.0-9.0). TRab is still pending. This is the first time TPO has ever been done. First time in 2 years Free's and TSH has all been in range.

If Trab comes back high. I'll have to have a long talk with doc and insist on block and replace. If TRab comes back where I'm comfortable I will continue to lab every 8 weeks for the next year while I tread the waters of remission.


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## Grandma Karen (Aug 11, 2013)

I hope everything comes back good - and your doctor does what you need - sounds like you are surely on the road to remission!! Jealous!! Good luck!!


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## Lovlkn (Dec 20, 2009)

HotGrandma said:


> Been on the Graves rollercoaster for over 2 years.
> 
> Ended up in a deep hypo hole for 6 months. Climbed out and brought my Frees into range on 1/4 of a 5mg per day of Methamozole per day for the past 6 months. Couldn't figure out how to cut the pill into eights. Dr Rubin's book "Thyroid for Dummies" suggested when weaning to then take it everyother day. How do you remember that? So I dosed M W and Friday. Felt great the days I took it and horrible the days I didn't. It was because the days I dosed I didn't sleep a wink. My Free's were in range not in the 50-75% range and TSH was at 5. My doc doesn't do block and replace. So I quit taking the Methamozole.
> 
> ...


I tried to reach remission for 4.5 years and finally gave up.

Once I had my TT - my life came back - while it took me awhile to get my replacement right I now feel like a person with a normal functioning thyroid and am on complete replacement.

When you have Graves my opinion is that the antibodies fight every attempt of you reaching remission. Few people reach remission and even fewer for any length of time.

It all boils down to how long you want to suffer. I was at the end of my rope and was thankful to have friends who encourages my TT - even set up the appointment with a surgeon to get their opinion.

A surgeon will remove it it you ask - you have history - bring it with you and move on with your life.


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## HotGrandma (Sep 21, 2012)

Lovlkn: I am not sure what your journey entailed. How long were you on ATD's before you attempted remission? Were the antibodies tested at the time of remission and what were they? I am really glad you are well now and do not regret your choice.

I do not have a choice. I was denied insurance 3x. Now with Obamacare, I cannot afford the premium for having several pre-existing conditions and a crapy plan on top of the premiums. I was quoted $47,000 for a TT. Cash discount would be $28,200.00 up front cause its not life threatening. With insurance my premiums would be over $900. per month =$10,800.00 plus the deductible of $10K = $20,800.00 plus the co-pay 60/40 $18,800.00 equals $39,600.00 for a TT.

All I can do is stay positive and informed and keep regular labs as to not slip back into the sickly mess I once lived in.


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## Octavia (Aug 1, 2011)

HotGrandma, when you say "to attempt remission" what do you mean? I'm not sure I understand...but then again, I've never dealt with an autoimmune disease, so I'm still learning about all of this.


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## Andros (Aug 26, 2009)

HotGrandma said:


> Been on the Graves rollercoaster for over 2 years.
> 
> Ended up in a deep hypo hole for 6 months. Climbed out and brought my Frees into range on 1/4 of a 5mg per day of Methamozole per day for the past 6 months. Couldn't figure out how to cut the pill into eights. Dr Rubin's book "Thyroid for Dummies" suggested when weaning to then take it everyother day. How do you remember that? So I dosed M W and Friday. Felt great the days I took it and horrible the days I didn't. It was because the days I dosed I didn't sleep a wink. My Free's were in range not in the 50-75% range and TSH was at 5. My doc doesn't do block and replace. So I quit taking the Methamozole.
> 
> ...


I sure hope so; I really do! Will be anxious to see the Trab.


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## HotGrandma (Sep 21, 2012)

Octavia said:


> HotGrandma, when you say "to attempt remission" what do you mean? I'm not sure I understand...but then again, I've never dealt with an autoimmune disease, so I'm still learning about all of this.


What it means is no more ATD's. No thyroid replacement drugs either. Graves is forever, I understand that. But if the antibodies are calm and not on the attack the thyroid can possibly function on its own again. Remission. I will be getting labs every 8 weeks or sooner if I have symptoms. I never want to get that sick again.


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## Octavia (Aug 1, 2011)

Oh, I see. Thanks for the explanation!


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## HotGrandma (Sep 21, 2012)

Andros said:


> I sure hope so; I really do! Will be anxious to see the Trab.


Thankx Andros: Trab _1.01 (-1.01) exact. I was hoping it would be lower down from 1.03 in April. Hoping its from being hypo for so long.


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## Lovlkn (Dec 20, 2009)

HotGrandma said:


> Lovlkn: I am not sure what your journey entailed. How long were you on ATD's before you attempted remission? Were the antibodies tested at the time of remission and what were they? I am really glad you are well now and do not regret your choice.
> 
> I do not have a choice. I was denied insurance 3x. Now with Obamacare, I cannot afford the premium for having several pre-existing conditions and a crapy plan on top of the premiums. I was quoted $47,000 for a TT. Cash discount would be $28,200.00 up front cause its not life threatening. With insurance my premiums would be over $900. per month =$10,800.00 plus the deductible of $10K = $20,800.00 plus the co-pay 60/40 $18,800.00 equals $39,600.00 for a TT.
> 
> All I can do is stay positive and informed and keep regular labs as to not slip back into the sickly mess I once lived in.


So sorry to hear about your insurance denial. Seriously sorry.

My story...

I feel I went at least 7 years without a diagnosis. My Graves was triggered with pregnancy - I had 2 miscarriages before a live birth then another live birth 22 months later - all this within about 42 months. I have pictures that show bulging eyes after the first live birth - after that for many years I avoided having my photo taken.

I was in full hypochondriac zone looking for my "cause". My husband called me a hypochondriac because I was constantly at the doctor with aches pains, IBS, allergies and insomnia. My gyno who delivered my kids ran a executive 50 lab that showed low TSH for 2 years but the other thyroid tests were the uptake which always showed high normal. I mentioned this to my GP, the low TSH and for 18 months she tried to get me to take antidepressants. My "new" gyno ran the Free labs the first time I requested them and referred me to an endo. Graves was the DX and I was given Tapazole. 20mg daily which was increased to 40mg and I was hypo within 3.5 months. What's funny about this is looking back at labs my Frees were moving down and the endo increased my Tapazole based on TSH -My TPO antibodies went up throughout my journey, my thyrotropin receptor antibodies went into normal range once. My endo would not run TSI and ran the thyrotropin receptor antibodies which I believe are about the same as TSI

My antibodies were working overtime because I had a "normal" Free lab just a few month prior to being dx'd. Fast forward 4.5 years. I never could stabilize on anti thyroid med's- definitely no longer that -3 months and remember monthly dose adjustments. TPO 476 at diagnosis and 790 2 years later and 1860 6 months before my TT.

What I find interesting is when my TPO was 790 my TSH was 0.902 and my Thyrotropin receptor antibody was 6 (<10) , I guess a TSI might have given a better picture but I was within range - the only time ever, FT-4 1.3 (.8-2.7), basically hypo. I was a complete mess and never got better - these were about the best labs I ever had since having a dx. I'm blessed to have had a decent healthcare plan at the time. I went to a surgeon my friend knew as she was a nurse anesthetist. My surgery was without complications - replacement took about 2 years to dial in.

I wish you all the luck in the world, I really do. I have a feeling the thyroid patients of the world will really suffer with this new healthcare reform.


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## kathlav (Mar 26, 2013)

Hi HotGrandma,

kind'a gives you Goosebumps the thought of maybe not needing to medicate does'nt it!

At my last Endo apt this is exactly what I was told that my labs looked great and my TSH had been creeping up from non detectable for the last 5 months and Frees have been well within range since may. So to try for remission, as of Sept 20th I have not taken any carbimazole or propranolol as I know this also affects the thyroid, but yesterday I received my blood results done four weeks after quitting my meds.

my previous FT4 was 15.2 (12-22) now 20.2
previous TSH was 0.94 (0.3-5.0) now <0.01

It has taken two weeks to get these results so add on another two weeks on no meds , I am probably out of range on my Free's by now too.

Just wish my Endo would do antibodies but she doesn't see the point once diagnosed!!!!!

Don't quite know what to do now, just wait for her to contact me I suppose, no appts till late Dec by which time if left on no meds I will be on my way to where I started back in Aug 2012 FT4 64.5 and no sleep.(That's the worst symptom for me).

I am really glad that you are getting your antibodies tested I think that it's very important that you are happy with those results before you go ahead with your plan.

I am also sorry to hear about your insurance problems, you've been through so much ,to have this worry on top of it all, is the pits.:sad0049:

I really wish you the best with your remission and shall be following your progress with much interest, as for me not sure if I am going to try again or go for one of the other two options (which I think will come up at next endo apt).

Wishing you well, HotGrandma.....x


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## HotGrandma (Sep 21, 2012)

kathlav said:


> Hi HotGrandma,
> 
> kind'a gives you Goosebumps the thought of maybe not needing to medicate does'nt it!
> 
> ...


Thank you Kathlv. How long have you been on ATD's? My Doc dumped me to Extreme hypo. The pain was horrible. He wanted to take me off ATD's at that time Oct 2012. At that time I took charge of my care. I have read so many things that you have to be on ATD's 18 months or longer and that the antibodies need to be in range before discontinuing ATD's.

I have learned to avoid triggers I can feel them in my eyes. I definately cannot afford to let the antibodies thrive and attack my eyes again. This disease is horrible and disfigureing.

If your antibodies were high it could scew with your lab results. Insist on at least getting TRab checked. Its the cheapest or even getting them checked yourself with one of those online labs.

Its also important to reduce ATS's gradually. I went from 10mg 3x per day to 5mg 3x per day to 2.5 mg 3x per day to 1.25mg 3x per day to 1.25 once per day for 5 months. All based on labs.


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## Andros (Aug 26, 2009)

HotGrandma said:


> Thankx Andros: Trab _1.01 (-1.01) exact. I was hoping it would be lower down from 1.03 in April. Hoping its from being hypo for so long.


Well; at least the number is not through the roof. That's a good thing. Keep on working on this as you are making progress.

You cannot afford any stressors as that will tip the scales.


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## kathlav (Mar 26, 2013)

HotGrandma said:


> Thank you Kathlv. How long have you been on ATD's? My Doc dumped me to Extreme hypo. The pain was horrible. He wanted to take me off ATD's at that time Oct 2012. At that time I took charge of my care. I have read so many things that you have to be on ATD's 18 months or longer and that the antibodies need to be in range before discontinuing ATD's.
> 
> I have learned to avoid triggers I can feel them in my eyes. I definately cannot afford to let the antibodies thrive and attack my eyes again. This disease is horrible and disfigureing.
> 
> ...


I started on Carbimazole back in Aug 2012 but I had been complaining of eye problems since (odd swellings) found out it was aspirin that triggered the eye swelling, since about October 2011.Previous to that I had lost a lot of weight due to ulcerative colitis not sure if me being poorly had anything to do with the attack on my thyroid, but a possibility.

I was on 5mg per day of carb when the Endo decided to take me off them, I am quite sensitive to the carb and it has taken 14 months to get to this stage, And have gone hypo a couple of times from over medication..urgh

Probably not long enough I know, the only antibodies I had done were back at the beginning of all this TPO 127 (0-50) and then again 137.....not majorly over....

I have requested antibodies for TSI and TRab ,but get the usual "expensive tests, not needed....yada yada yada", might just bite the bullet and get them done myself.

This will be the second time remission has been tried the first time after 6 months of being on carb and wrongly diagnosed with thyroiditis.

I think my carb days are numbered, My Endo is probs going to push for an ablation, although I would rather surgery ...if I have to make the choice.

But I know that Remission can be achieved, done the correct way, And it sounds like you have whittled down the carb as far as it will go and over an appropriate length of time, so I've got my fingers, legs and eyes crossed for you...until I need the loo of course.hugs1


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## kathlav (Mar 26, 2013)

Hello HotGrandma,
can I ask, what are your Triggers for your eye problems ?
I have intermitant eye pain, puffiness, swelling and what looks like black bruising in the crease of the eye lids( what's left of them).Huge under eye bags and a kind of pressure feeling in the inner corners. One eye seems to have a heavier lid than the other and it just looks odd to me, but not everyone notices this.
I have noticed these symptoms are getting worse since I have been off my meds.
Although the facial(cheek) puffiness seems to be subsiding. Always hated that moonface:tongue0013:


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## HotGrandma (Sep 21, 2012)

NEW LABS AWESOME I might add. Remember no MMI since 09/15/2013

Free T3 4.2 (2.3-5.0) 75% range is the target of 4.32

Free T4 1.24 (0.8-1.76) 75% range is the target of 1.52

TSH 1.07 (0.4-4.50)

AWESOME RIGHT

But why am I still symptomatic? Night Sweats, No Sleep, Exhausted, Freezing, Dry alligator skin, Brain Fog, Pain in my wrists (ganglion tumors are back)


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## Andros (Aug 26, 2009)

Good numbers is right!

However; what I am really thinking is that your body has not yet caught up to the numbers. Stay the course and see what happens.


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## kathlav (Mar 26, 2013)

Great news,

Numbers look great, would be interesting to see what those TRab numbers are doing? when do you next plan on getting antibodies tested?

but I agree with Andros , stick with it, this is very encouraging ....congrats.

just keep check on those symptoms and if they get worse I would be tempted to get blood tested earlier next time with TRab results.


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## HotGrandma (Sep 21, 2012)

TRab was done in October and was 1.01 range was also 1.01. TRab isn't due till end of April 2014.

Finding out so many things not to eat. My son smoked a turkey for Christmas so there were no drippings for me to make gravy with. He made packaged gravy. During the meal I could feel symptoms. Turns out the gravy had soy in it. Doesn't take much of a trigger to feel off.


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## kathlav (Mar 26, 2013)

You're right about it being in everything, I bought a facial cream the other day and it was,nt until a few days into using it I realised one of the ingredients was soy had to throw it away, I used to drink soy milk before diagnosed and had to give that up too, I started drinking it because of my ulcerative colitis trying to get rid of dairy....when I was having a flare up.

In a way it's good that you're so in tune with you're body, that way you should always catch it in time, although if I were to follow what my' eating for a healthy gut', book says and my thyroid diet book, my diet would consist of air and water  and I would be a lot slimmer 

But sooo glad the diet is working for you, Have a fantastic new year.

Kathy.


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