[AzGravesGuy]

in reply to: Tremors, what to do? #1175756

Why apologize for your rant? We are your support group. If you can’t vent here then what is the point?

Don’t despair about losing your coverage.

I have had Graves’ for 7 years and have been uninsured for the last 4 of them. Even with the endo visits, opthamologist visits, meds, er visits, RAI, scans, and bloodwork, I am still coming out ahead for the year, versus paying the $800 a month with a $5000 deductible plan that was offered to me (that excluded my pre-existing Graves’ anyway).

Even with the disease, I paid less without insurance than if I had it all along. If I wasn’t sick and was paying all that money I would be really upset. I have learned to see health insurance as a form of gambling. (I got sick and still left the casino with money in my pocket so to speak. Lol!)

Most doctors and facilities have discount pricing for the uninsured. Some even offer billing on that discounted price. All you have to do is ask.

My tremor stopped once I was put on 50mg of Atenolol twice a day. I had an endo that asked me on every visit to hold my hands out in front of me, fingers up. If I shook, he upped the dose.

I wish being on treatment erased the daily symptoms and challenges quickly. Some people are lucky and have few complications. The rest of us fight every day until we hit the sweet spot.

I know you feel horrible. I know you can’t see the light through the fog right now. Please trust that you will manage this. It will improve. If you are at the point of wishing you weren’t here, then you can only go up from here.

Every day, in every way, you are getting better and better. It just takes time.

Unfortunately patience is hard to find with imbalanced hormones. ( I know this all too well. Luckily I work with people that aren’t offended by me swearing like a sailor on “stupid days”)

One of the exercises I used to relieve stress, besides meditation which I HIGHLY recommend, was to go into the bathroom and let the cursing fly. On days where I had so much anger and frustration coursing through my veins I could not shut off enough to meditate, this is what worked for me. If you really try to get every possible swear you can think of out and into the mirror, one of 3 things will happen.

1: you release stress and get a dopamine lift
2: you will start laughing at yourself swearing in the mirror ( my usual reaction)
3: your neighbors will call the police (only happened once)

Whatever happens, you will feel different afterward. I made it more interesting by vowing not to repeat words, just keep going until I said every one I knew and a few I would invent on the spot.

You sound overwhelmed and that is par for the course of Graves’. All we can do is handle one thing at a time. Don’t give up. Don’t let Graves’ win.

[AzGravesGuy]

in reply to: brain recovery time? #1175567

It resonates with me.

For months I was told I had adult ADD, took troubling ADD meds and felt worse. Nope. It was undiagnosed GD.

My problem is the frustration of waking up off my game and not resenting myself or GD as a result. For many years I resented my “stupid days” and that didnt help with the frustration.

When I was in ATD induced remission I would still have “stupid days”. I also hoped they would cease, but they didn’t. This made me suspect it was antibody related not tsh or fT related. I haven’t found any research to support the suspicion thus far.

The brain fog and peripheral neuropathy can be hypo symptoms but occurred at normal and hyper levels.

Unfortunately it wasn’t until I jumped on a treatment bandwagon that things changed at all.

Was it a placebo effect from the anxiety about treatment? Probably.

I take it day by day now as my levels slowly crash land.

If I wake up and can take on the world, then that is what I do.

If I drop my coffee mug and it shatters cuz I can’t seem to keep a grip on it because my brain is off in La-La Land and my spreadsheets look like latin script at first glance then it is going to be a difficult day. Not hating myself or GD on these days can still be a challenge.

On bad days I force myself to meditate for at least 15 minutes before I leave the house to center myself for the day. So far it has worked reasonably well for the first part of the day.

When I have a “stupid day” I feel incompetent, depressed, frustrated, stupid (of course) and angry. Half the battle is keeping up, the other half is not losing it. I am upset to see myself struggle at things that were normally easy. I used to get anxious and think “What is wrong with me?”

Now I laugh at the absurdity of my condition on those days. The change of mindset has made it more bearable, but I constantly wish for a definitive end to my “stupid days”.

[AzGravesGuy]

in reply to: * Undestanding Thyroid Stimulating Immunoglobulins (TSIs) & GD * #1175552

Vanillasky,

Hooray and congrats on questioning your dr’s word. There is nothing wrong with being an informed patient or disagreeing with recommendations, as long as you have researched it and have information to back up your assertions.

This caused a huge rift between me and my dr, as I have caught my endo in misinformation more than once.

I knew more about GD then my last endo. Crazy right? Thats why I fired her.

Question everything.

I have had some consults with drs that were CLEARLY money motivated, and others that had outdated information and didn’t care to learn.

They are doctors, not gods.

There is no better advocate for your health than yourself.

[AzGravesGuy]

in reply to: Well, here goes! #1173548

New labs, 90 days post RAI:

Ft4: 1.5 (.8-1.7) NORMAL!

Ft3: 5.9H (2.0-4.

Tsh <.01L (.45-4.5)
I am on 10mg methimazole now once a day, beta blockers are still at max dose, but that’s a diffent problem, different doctor. No palpitations.

My eye pain has almost completely subsided. No more mmj for now.

I feel good but a little twitchy for lack of a better term. My weight didnt change this week. I hope to at least maintain the loss so far and continue it once I get on synthroid.

The Grave’s Rage has almost completely disappeared. Unfortunately, stupid people still populate the planet so I cannot let it all disappear. I am ok with a once a day flare up. I find humor in it now. Phoenix has some LOUSY drivers. Lol!

Vanillasky: When I think of all the time and money spent taking psych meds or sitting on a couch talking, thinking the anxiety was my issue ( GAD, PTSD, whatever the diagnosis was that warranted the pill of the month) I have to laugh. Congratulations on finding a dr that understands the effects of GD on the whole person, not just the thyroid. Good doctors, especially endo’s are hard to find. It was easier for my team to say I was crazy for 3 years than to do the book work. I have since fired them all.

Cat: I finally got 4 days of real sleep in and feel like a new person. Work stress has made my sleep issues worse. 4 more weeks of crazy then I can relax for the first quarter of 2013.

[AzGravesGuy]

in reply to: Well, here goes! #1173543

Kimberly, thank you for the PCIP info. I didn’t know that existed.

Nothing really exciting to report. My eye appointment was informative, but until I level out, my options are limited. Hopefully they will recede with time.

My dr has obliged to take over treatment at this stage from the endo I despise.

Weight loss has paused at 41lbs lost since Sept. 4th. I feel cold at times and that is a refreshing change from the constant hot.

Anxiety….gone.
Palpitations…..gone.
Rage…….almost gone.
Eyes…..not as painful.
My hair is starting to feel like hair again.

Energy level has dropped. Some days I can sleep 12+ hours and wake up feeling like I never slept. Some days if I can sleep 4 hours it was a good night.

Bloodwork next week!

[AzGravesGuy]

in reply to: RAI and cancer risk #1175314

I have a family history of cancer as well. I had consultations with all 3 types of doctors you mentioned and researched it and lived in fear for years before I decided to swallow the yellow pill.

If I am advised to have another round of RAI I will be seeing a surgeon instead. Too much of a good thing as far as I am concerned.

A statistically significant connection between RAI and other cancers has yet to be proven. Does that make it the right treatment for you? Only you can decide.

Whatever you choose, it will be the best decision of your life. I got my life back and I hope the same happens for you.

[AzGravesGuy]

in reply to: Well, here goes! #1173541

New labs, 2 months post RAI:
tsh .01 (.45-4.5)
fT4 2.3 (.8-1.7)
fT3 7.4 (2.0-4.

Dropping, but taking their sweet time.

My wbc has rebounded and I finally have a normal cbc since swallowing the pill.

The opthomologist I went to had some experience with TED but absolutely no experience with mmj, so I was referred to a dr at a conglomerate. That is next week. Its funny though, the dr picked me out of the lobby and knew I was his TED patient just by sight alone. I don’t think my eyes are protruding that much and I have learned the squint game. Nope. He knew the second he saw me.

Rewetting drops, Pataday drops and a referral. He advised me to keep using the mmj if it was working for me, but to realize it will probably not stop the protrusion, just numb the pressure. If it continues, I will need the orbital decompression surgery.

I miss having health insurance.

Down 39lbs since RAI, 11 more to go and I will be back to where I was before this circus started. I call it a circus because I unaffectionately call my large size clothes “the clown pants”. Once again, if I cannot laugh at it, then the Grave’s has won.

[AzGravesGuy]

in reply to: Graves’ Rage #1174934

Exactly like my experiences. You are not going crazy. This will not last forever.

[AzGravesGuy]

in reply to: Well, here goes! #1173540

I agree completely. Its been about 3 years since I had tobacco. My eyes were definitely “buggier” then.

I plan on having a frank and detailed conversation with the optha. I will update with what they say.

[AzGravesGuy]

in reply to: Well, here goes! #1173538

Hi Kimberly! Thanks for the info on the hyper/hypo impact. I scheduled with an opth today for next week. Monday is bloodwork day. I plan on staying on top of my levels with OCD precision.

I used to smoke cigarettes years ago and they destroyed my lungs over time. All those years I was told it was asthma. 2 months after I quit tobacco, my albuterol inhaler was in the drawer for good.

My mmj is run through a vaporizer that dispenses water vapor into a balloon.

The strain of mmj I was given doesn’t actually induce any euphoria. (I know, right?) What it does do is stop the feeling like someone is pressing their thumbs on my eyes.

It also makes my eyes unbelievably bloodshot and watery. I suspect the temporary hypervascularity has something to do with the pressure release and pain relief. They look like they would be sore in this state, but they actually feel better.

I don’t have the need to medicate daily, so I dont. Usually by every 3rd day the pressure builds and I medicate. If it had a euphoric effect (like the stuff back in my college days) I could see this medication being a problem for the general public, clearly, but I don’t even get hungry from it. (A classic side effect and cliche of using it.)

I was advised by the surprisingly professional guy at the co-op, every strain has different properties. I asked for something tame…I have a business to run after all. But I know there are some types available that are very very strong. No thanks.

So little is scientifically known about how mmj works and the specifics of different strains. I am both excited to be conducting my own experiment, but also concerned about frying my brain out. So far I have not experienced any cognitive difficulties or memory loss. If that changes, I will update. ( Probably with a poorly spelled and worded paragraph. )

Numbers Tuesday!

[AzGravesGuy]

in reply to: Well, here goes! #1173536

Had an endo appointment today. I should have known when the unfamiliar assistant asked what brought me in today that this was going to be a bad visit.

Endo said I am over the hump and to start dropping the methimazole. My bp is still 164/61 so I will stay on the atenolol for now.

Things are looking up. The intense heat on my shoulders has stopped. The palpitations are tolerable and infrequent. My skin scratches really easily these days though. I am still slowly losing weight. I feel more optimistic again. My legs are cramping at night again so this is familiar territory hormone wise. Hooray!

I tried to discuss my TED symptoms, endo cut me off mid sentence and said it will go away once I level out. Wishful thinking.

My wbc is still below normal. When I questioned this she offered no information. Told me to stop worrying about it.

I tried to discuss alternative methods of pain management, as I have been using state approved mmj for my eyeball pressure with success. I am aware this is a controversial treatment and is obviously not for everyone.

She immediately blamed my heart problems on the mmj (something the ER dr and I discussed quite frankly last week in great detail and I was told it has no effect on my heart condition). Then she launched into a 3 minute dissertation on how mmj is not fda approved and how it can injure me.

I reminded her that in my file, my heart was damaged years before my Graves from an fda approved prescription medication, which has since been banned. I am part of the class action group! Way to go fda. Thanks for the atrial fib! Like I should trust you at all.

Being reminded of this information escalated the visit from gruff to angry and my $160, 11 minute visit was then over. $160 and I am wasting HER time?

She refused the offer of published research. The more I spoke it was like she wanted to put her hands over her ears and shout “lalalalalalalala!”. Instead she got angry.

I am over my endo’s aggressive poor moods, her condescending tones, her inability or unwillingness to listen. Her corporate bio page lists her as a groundbreaker in her field, but she knows nothing of new research. She has treated me and kept me alive, but she is no friend or hero. How her staff handles it is a mystery to me.

I wrote a nice Yelp review that sums my experiences up.

If anyone knows a competent endo in the Phoenix area, please pm me.

[AzGravesGuy]

in reply to: Well, here goes! #1173467

Good morning from the local ER!

My 120+ pulse woke me up. I can feel it in my eyes, like my eyes are blinking when they are closed. I am not taking any chances. The EKG was “ok” per the nurse. Not “good”, but ok. (I asked.)

I guess the beta blockers and methimazole aren’t strong enough compared to the hormones. Thats ok though. I am in the hands of professionals and a few friends now. Expensive friends. Lol!

I am officially down 30 lbs in a 6 weeks. Hooray? It seems a little fast. I know most of it is muscle, but I like having clothes that fit again.

Grave’s is a mixed blessing for sure. I cannot wait for the day when the palpitations and constant sweating ends. I am done looking like a crack head. Lol!

I will update as I learn.

Update: been here for 2 hours, my wbc count is a quarter of what it should be. To say that makes me agitated is an understatement. They are still waiting for the T4. So far I am only out $600, so not bad for an ER visit!

Update: released. Going home. They doubled my Methimazole and are upping the Atenolol. Joy. My heart goes from 70 to 108 just by holding a conversation. Again it’s wait and see medicine. I should have patience by now but I do not.

[AzGravesGuy]

in reply to: Well, here goes! #1173533

Ha! Well the joke is on me this week. My fT3 and fT4 are both about a point higher this week then they were in the 9/28 post. My tsh is still .01.

Endo prescribed 2 weeks of methimazole then more bloodwork.

Tinnitus has resolved, I am losing weight again, jittery, and my neck no longer hurts.

I am back to the good day/bad day lifestyle. Yesterday I felt great, a little jittery but good. Today was burning hot across my shoulders all day and palpitations despite max dosage of beta blockers. My attitude was less than pleasant for most of the day even though nothing went wrong.

Its times like this I miss remission. Everyone I have dealt with today misses it too.

[AzGravesGuy]

in reply to: Well, here goes! #1173532

Tinnitus!

WOW!

I did some investigating and I have a 6000hz tone in my left ear. Its not loud but it is constant and very annoying. (Google 6000hz tone to hear what I hear)

Tinnitus is a symptom of hypo, but also caused by hundreds of other things.

I am still amped and warm. My neck hurts again today.

Bloodwork Monday!

[AzGravesGuy]

in reply to: Well, here goes! #1173530

Today makes a month since I swallowed the yellow pill.

I suspect my levels have finally topped off and are now starting to drop.

How do I know?
I have gained 4 lbs in 4 days on a raw Vegan diet.
I am now constantly hungry, carb cravings.
My face broke out.

These are the signs of change I know and “love” from the past cycling from hyper to hypo.

I should be cooled off by now but still have the amped feel of full blown hyper. The heat intolerance is still going strong. I hope it disappears in the coming weeks. The weather is finally cooling off here, but some days I look and feel like it is still 114 out. The night sweating is getting old again too.

I will have numbers next week for everyone. With any luck they will show a drop. Endo said a drop may not be significant for a few months. That’s not soon enough.

[Author]

Posts