[AzGravesGuy]

in reply to: Ketogenic diet and thyroid #1185213

I eat a lot of coconut, coconut oil and raw cacao butter.
It was challenging at first but once I got my macros down, it clicked.

A pound of steamed broccoli drenched in oil and sometimes garlic every day.
A salad with nuts and seeds and a whole avocado….every day.

I put mct oil and raw cacao in my morning coffee.
I make hot chocolate with cocoa powder, raw cacao, dried coconut milk and stevia.
Fat bombs, fat bombs, fat bombs, yum!

I love being keto adjusted. If I know my day is going to be busy, I can pack a 30g piece of raw cacao and eat it mid morning. Full until dinner. No grumbles no grumpiness, no road rage. Lol
Once you burn fat instead of sugar, a small serving of pure fat can keep you feeling full for a really long time.

Eat to live, not live to eat. With Keto…I should say don’t forget to eat. Lol

There are some foods I miss, bread of any kind being the most mourned. Followed by pasta and then popcorn. Movies are not the same without popcorn.

However, the trade off…the effect of the Keto diet…has been life altering. Much like my TT, I wouldn’t change it for the world.

The med increase according to my dr is because muscle uses more T4 than fat. Now that I am substantially less fat and more muscle (regardless of weight) at this proportion I burn more T4.

[AzGravesGuy]

in reply to: Ketogenic diet and thyroid #1185211

I’ve been Vegan Keto for almost a year now. It’s awesome!

It’s not for everyone, lol, but eating 150g of fat, 40g of protein and less than 20 carbs a day suits me just fine. My cholesterol is still circling 140. I don’t feel hungry.

I had to adjust my Synthroid up as my body fat dropped. I also discovered my body has a boomerang effect with dosage changes. It now takes me a full 12 weeks to level out after a dosage change. My TSH is lower at 8 weeks than it is at 12. Weird. Not sure if Keto related.

[AzGravesGuy]

in reply to: Question regarding Endo visits since TT #1185168

I fired my endo before my TT. She was against it. With my eye involvment she still recommended a repeat RAI. Denied any connection but billed herself as a “thyroid specialist”.

I have not needed the “expertise” of an endo since TT! Lol
I had my neck U/S a few months after surgery to look around and nothing left but 4 parathyroids.

FWIW, I found the more fat I lost after TT the higher dose of Synthroid I needed. Started at 212lbs, 40% fat and on 100mcg. Now I am 140lbs, 8% fat and on 175mcg. My MD said muscle uses T4 more than fat so using weight to dose can be problematic depending on body composition.

I went from couch potato to fitness model with my TT. No one saw that coming. Hahaha

Rob

[AzGravesGuy]

in reply to: After a long absence, back again! #1185094

Hey Barbra!

Welcome back!

That’s awesome you still feel good with something going on in there. It may take a few weeks post surgery but your throat will feel so much better with it gone for good.

I wish you the best of luck for a safe and successful surgery.
Let us know how it goes!

Rob

[AzGravesGuy]

in reply to: Thyroidectomy after 7 years of resistance #1185069

Hey Suzanne!

Welcome back and welcome to the TT club! The surgery that changes your life!

It will take some time to get your levels back to normal but when it happens, it’s magic. Remembering what it feels like to “not be sick” can be challenging and exciting. The hard part is having the patience to let your body rebuild from the assault of Graves’ before tackling the world.

I really connect with you having “an immediate feeling of calm” post surgery.When I felt that, I knew I had made the right decision with surgery. No question. I remember that feeling now and have never been more grateful for making the decision.

As far as weight gain…again, patience is a good mindset to keep. In my case, since surgery 3 years ago, I have lost 70lbs and now have about 10% body fat. (I’m 40’s, 5’7″ and 150lbs.) My Synthroid has gradually been adjusted to a dose of 175 mcg. The key in my case has been limiting carbs. I follow a Vegan Ketogenic diet.

Exercising becomes easier and actually shows results as your body recovers from being under attack all those years. Your energy level will grow as you heal. Prepare to be surprised how good you’re capable of feeling.

You may fluctuate weight wise getting stabilized. The weight you gain from getting stabilized is temporary IME. Just remember…your metabolism is changing chemically and will be different once you are stabilized on T4. If you find yourself gaining after T4 stabilization, look at your diet. Some people on T4 don’t handle carbs well. I have been Vegan 16+ years. I gained some weight 2yrs post surgery. As soon as I increased protein and cut out carbs, the weight fell off. Less bread more broccoli. Lol

I wish you the best of luck in your post surgical life transformation. Keep us posted!

[AzGravesGuy]

in reply to: TSH hike 18 years after RAI #1184923

After a week of no vitamins, supplements, soy or coffee (ugh) my TSH has dropped by half to 22 and my ft3 and ft4 have remained almost unchanged.

I think this might be the answer in my case.

Regardless, having a TT was the best thing I ever did. A mild inconvenience for a tremendous reward.

[AzGravesGuy]

in reply to: TSH hike 18 years after RAI #1184919

High TSH can be caused by poor absorption of T4 supplementation.

I say this as someone who currently has a TSH of 44, up from 29, 6 weeks ago.

I have been advised to cut out all vitamin, herbal and calcium supplements, coffee, anything soy, and goitrogenic vegetables for a week to see if my number moves. All of these (per my dr) can cause problems with absorption and conversion of t4 to t3, causing a rise in TSH.

I feel normal, energetic, not hypo at all which is the weird part. I would not have known if I wasn’t tested. Lol

If your ft3 & ft4 are in normal range, high TSH may be an absorption issue.

[AzGravesGuy]

in reply to: Voice post thyroidectomy #1184844

It was almost 7 weeks before my voice was back to “normal”. I was cut really low and they were very inflamed from being wrenched around. I read my surgical report and they used an electric pulse to verify the nerve was intact at regular intervals. (I asked) Using this pulsing during surgery can cause the more lasting inflammation that I had and you might be experiencing now, the trade off being confirmation that the nerve is unharmed from the procedure itself.

But yes, 6 months after surgery the lingering raspy was gone. I would have forgotten it even happened.

My advice is to give it time. You did have a major surgical procedure. Some people take longer to recover than others.

Congratulations on your decision to move forward! It will take a while to get your life back, but all of it can and will be yours again!

Rob

[AzGravesGuy]

in reply to: Whether to have a thyroidectomy #1184708

Hi Suze,

I had A TT after 8 years on and off of methimazole and a failed RAI.

The details of which are chronicled here:

http://www.gdatf.org/forum/topic/42783/?page=1

Since surgery life has never been better.
I now have the energy and stamina to exercise, think, and live again.
I lost almost 70lbs and maintain 12% body fat with ease.

My TED, although slight, has by all accounts gone dormant.

Getting stabilized on replacement hormones can be challenging, especially if your weight is dropping. The 215lb me required considerably more Synthroid than the 150lb me does.

Almost 3 years after surgery and now my only reminder of Graves is the daily Synthroid. The Synthroid DID actually give a burst of energy, nervous energy for about an hour after taking for the first year. It faded and I forgot about it happening until reading your post. The Synthroid insert describes it as “anxiety” after dosing and a somewhat common side effect.

My neck incision was done really low, almost on my collarbone. It was glued and taped after surgery and is no more than a thin white line today. If you’ve had a goiter for an extended period of time, the skin may not shrink back completely. I understand your concern about worsening the appearance, but IMO not having the surgery takes a much larger toll on your skin over time. I work in sales and my regular customers say I look younger now. LoL

My skin has gotten better, clearer and smoother since surgery. It is my understanding that while under active autoimmune response, “Raging Graves”, the entire body suffers. Skin, the largest organ, certainly shows the ravages of disease. The good thing is, skin regenerates, the body can and does heal.

I had serious fears before surgery but now my only regret is not doing it a decade ago when I was diagnosed and it was first offered to me. Ignorance robbed me of my 30’s. If I only knew then how healthy I could have been all along……

My opinion, if you can use your surgeon of choice..do it. Surgery stops the madness. It isn’t a magic fix but it ended my suffering 100%.

Rob

[AzGravesGuy]

in reply to: I hate Graves Disease #1184564

Hi Sandy,

I hated my Graves’ Disease too. Almost a decade lost to the physical and mental chaos it brought.

My story is here:

http://www.gdatf.org/forum/topic/42783/

Surgery ended the Graves’ assault on my body, starting the first day.

Now after a few years of rebuilding and relearning, I am stronger and more like myself than I have been in more than 10 years. My life has only improved since surgery. A near reversal of every symptom I ever had has slowly developed.

Find an experienced surgeon you like, one you trust.

IME, surgery is the quickest way to win the fight and resurrect what’s left of your life. Once I got stabilized on replacement hormones (which took time but patience paid off), life went on and the symptoms slowly disappeared.

A lot of posters on here disappear after having TT. Why? Because life goes on.
After having the failed RAI and then the surgery, I am surgery’s #1 fan.

I wasted so much time being afraid.

[AzGravesGuy]

in reply to: Full thyroid removal after five years with TED? #1184445

bllucas wrote:

I am so sick and tired of being sick and tired.

Hi Brenda,

I hesitated on my TT and it was a huge mistake. The time I wasted being sick could have been spent living life.

Since surgery, my life has come back, 110%. It took 2 years to rebuild and recover from the Graves’ damage but it was completely worth the wait. Now I am whole again…mind, body and spirit.

I wish the same for you and everyone else fighting this disease.

Rob

[AzGravesGuy]

in reply to: Well, here goes! #1173724

Howdy Folks!

My ft3 and ft4 have remained virtually unchanged.

My TSI is now very low (6) and my tsh is now down to a 2.7 from 29.66.

The wave of ” whatever ” has clearly passed. I still feel exactly the same. Weird.

Slightly less than 2mm heterogenous mass on pituitary. My dr seems to think my hypothalamus is the real culprit given my history of exposure to blast shockwaves.

On that note, I said no thanks to the additional brain scans and the cool wired hat….. for now. Lol

My thyroidectomy anniversary is this month. I will always celebrate it as the day I got my freedom.

[AzGravesGuy]

in reply to: Just diagnosed #1184194

I’m with Liz 100%!

Thyroidectomy all the way. The only regret I have about my thyroidectomy is not doing it sooner. I was afraid too but I can tell you from the moment I woke up…..

Best decision I ever made after the failed RAI.

For me, a total thyroidectomy was the quickest path back to a normal life.

Scar is invisible.

I got my mind back, my body back, I got “me” back.

Focus, energy, strength, it all comes back.

[AzGravesGuy]

in reply to: Well, here goes! #1173722

Happy Halloween!

I seem to find spare time on Halloween so here’s an update:

First off…total thyroidectomy is still the best thing I ever did for myself, hands down. Without it, I don’t know where I would be today. Although it is not for everyone, it absolutely changed my life.

There IS an “other side” of Graves’ and boy is it sweet!

Labs:

10/15/15
FT3 2.0 (2.0-4.4)
FT4 1.18 (.82-1.77)

TSH 29.66H (0.450-4.500)
TSI 535H (0-139)

So obviously I need a small dose bump. (Change 125/112 alternate one day a week)
I don’t feel bad at all for having a high TSH or TSI though.

My eyes don’t hurt but I expect they would with the TSI.

On all fronts I still contend that I have never felt better. Now maintaining a steady weight, able to eat reasonable carbs without feeling drugged, building muscle mass and shrinking the waist. All on a wheat free, soy free, Organic Vegan diet without any major side effects, symptoms, or freak outs. Hahaha!

If I am in the throes of an autoimmune response, I sure didn’t know it until the bloodwork said so. My mental acuity is intact. I welcome stress at work and my new large tattoo healed without issue. If I am sick…..not feeling it.

This leads me to suspect there is a pituitary issue. That dr I see Tuesday. Excited to get a scan scheduled and solve the case of the phantom TSH once and for all.

Have a great Halloween!

[AzGravesGuy]

in reply to: Frustration #1183850

After my TT last year…even my worst day is a MILLION times better than my best day before surgery.

Have you had an ultrasound or an uptake scan done since the RAI? If it was not ablative or if you developed nodules afterward like I did, it could be giving you the inconsistent levels.

Surgery changed me the same day, the very same day I felt different and better. Yes, there are risks to consider but at some point they are worth it.

When you live day in and day out tortured internally….at some point you snap. Everyone on this board has experienced that moment. I was afraid of surgery. For years it was not even on the table as an option. Then I had that moment…no looking back. Not one regret.

Surgery isn’t an instant fix, but it gives you a clear baseline to work with for replacement regulation. Plus…it stops the madness, the war raging inside your body really fast.

Don’t start training and lose a lot of weight without getting your levels checked along the way. (Lesson learned! Lol)

Don’t lose hope.
Don’t apologize for posting how you feel. You will feel better and when you do, post then too!

Do ask more questions of your surgeon and your dr team.
Do consider more opinions from TT posts here on the forum. Everyone has a different post surgical experience and my personal experience may not be typical.
Do feel empowered against your Graves’. You can fight back.

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