[AzGravesGuy September 28, 2012 at 3:05 pm Post count: 160]

#1173529

Bloodwork from day 23:

tsh .01 L (345-4.5mU/L)

FT4 4.6 H (.8-107ng/dL)

FT3 12.2 H (2.0-4.8pg/mL)

Higher then they were the morning of the RAI, but I feel better overall.

The only other thing remarkable on the blood panels I had done was my WBC is low, glucose was slightly high, sodium was high. I should drink more water.

Today (day 24) I feel great. Down 19 pounds in 24 days! My clothes fit again! Hooray!

I am having occasional moments of intense heat on my shoulders and sweating. Annoying but not even close to what it was 2 weeks ago. Whenever I eat I seem to get hot a few minutes afterward. Even if it’s raw kale and carrots. Weird.

I am back to myself mentally. The flare up in hot flashes gave me some initial anxiety but this is the die back happening. I should be thrilled! This means the RAI is working. I feel like I have become a completely different person in the span of 3 weeks. It’s not just the weight loss, there is a clarity that I haven’t felt in years. A year ago I felt like I wouldn’t live to see the next. Now, I feel like I can do anything.

My endo was right, I am getting my life back in the first 30 days. This hasn’t been easy but I have no regrets.

[AzGravesGuy October 4, 2012 at 8:41 am Post count: 160]

#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.

[KimberlyOnline Facilitator October 4, 2012 at 10:07 am Post count: 4294]

#1173531

Thanks for the update! If your prior experience with symptoms leads you to believe you are heading hypo, I would call your doc’s office and see if you can get a quicker set of labs. It can take several weeks to months for RAI to fully do its work…but you definitely want to get started on replacement hormone as soon as it’s appropriate.

[AzGravesGuy October 5, 2012 at 4:42 pm Post count: 160]

#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 October 10, 2012 at 4:43 pm Post count: 160]

#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.

[KimberlyOnline Facilitator October 11, 2012 at 9:46 am Post count: 4294]

#1173534

Hang in there – remember that it can take anywhere from 6-18 weeks for the RAI to fully do its work.

Here’s hoping that you start to see some relief soon…and that you get back to having mostly *good* days!

[AzGravesGuy October 18, 2012 at 3:19 am Post count: 160]

#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.

[KimberlyOnline Facilitator October 18, 2012 at 8:40 am Post count: 4294]

#1173535

Wow, so sorry to hear you ended up in the ER…definitely *not* the way you want to start your morning! I hope that the latest dosage adjustments will finally get you some relief…please keep us posted!

[AzGravesGuy October 29, 2012 at 7:08 pm Post count: 160]

#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.

[KimberlyOnline Facilitator November 1, 2012 at 11:58 am Post count: 4294]

#1173537

Hello – on the TED issues, eye involvement tends to run its own course, so there is certainly no guarantee that it will get better once your levels are stabilized. (Although it is believed that swinging hyper/hypo has a negative impact on TED). I would suggest seeing an experienced ophthalmologist to get a baseline evaluation.

Also, keep in mind the link between smoking and TED. I know of one doctor who believes that the link is more with cigarette smoking than with mmj, but keep in mind that this mechanism is not at all well understood — so this could be making your eye issues worse instead of better.

Take care!

[AzGravesGuy November 2, 2012 at 4:44 pm Post count: 160]

#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!

[KimberlyOnline Facilitator November 2, 2012 at 7:21 pm Post count: 4294]

#1173539

Congrats on kicking the cigarette habit! I would suggest asking the ophtho about the mmj.

It’s not just that smoking makes TED worse…those who smoke do not seem to respond as well to available treatments for, such as radiotherapy and steroid therapy.

I know that you are getting some relief from this approach…but it’s certainly worth having a further conversation about the potential risks with an experienced professional!

[AzGravesGuy November 3, 2012 at 3:06 am Post count: 160]

#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 November 8, 2012 at 5:38 am Post count: 160]

#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.

[KimberlyOnline Facilitator November 8, 2012 at 8:32 am Post count: 4294]

#1173542

Had to LOL at the clown pants – love your attitude!

I don’t know how long you’ve been without insurance, but there is a government program for people with pre-existing conditions that you can look into called the Pre-Existing Condition Insurance Plan (PCIP). The catch is that you have to have been without insurance for six months.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

https://www.pcip.gov/

My current insurance is terrible (it won’t pay for *anything* Graves’/thyroid related), so I’ve actually looked into this for myself…but in the end, I wasn’t willing to roll the dice and give up my current insurance plan for six months.

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