[AzGravesGuy]

in reply to: Fluorescent lights #1177901

I had a similar experience at my office. The greenish glow of the cheap tubes above my desk made everything harder for me to see. Finally I got irritated one day and climbed up and replaced them with 6500k daylight bulbs from Lowe’s. Probably the best $14 I ever spent. My plant likes them too. Lol!

I have never done any research on this but since then I can see true colors and my eye strain has reduced in severity. Most of my work is done on an iPad now and that took a month for my eyes to get used to. If you think it may be the computer, try adjusting the resolution on your display. Sometimes that can help.

Hopefully someone else will chime in with their experience.

[AzGravesGuy]

in reply to: Well, here goes! #1173590

Well something has changed.

The last week has been filled with disturbing dreams, each night the dreams star a person from my past (i.e. high school classmates, my first boss, old friends, etc.). The dreams are not friendly, fun, or remotely entertaining. I wake up feeling unrested and troubled.

Today it was a struggle to get out of bed. Malaise is the best term I can use besides depressed. I am not sad, just feel completely drained before my day even begins. Maybe I need a venti quad latte. Lol! (I live caffeine free, except for green tea, so that is a bad idea.)

I had a great weekend. Productive and fun. I did not over exert myself.

For anyone that has been officially hypo….is this what it feels like? I have no desire to do anything. It isn’t a lazy feeling, just exhausted at the idea of doing anything. I have obligations today and I want to cancel them all. I feel overwhelmed by nothing.

Could my RAI be a late bloomer? Lol! I know this is wishful thinking as I just developed a plan to get my TT done this year. But if this is the case, hoooooray! I still have a palpable thyroid so whatever is happening, the gland itself is still there. Maybe I overshot the higher dose methimazole, as I have only been on a reduced dose for 6 days or so. Whatever this is, it sucks.

I go for bloodwork next Monday. Still on 5mg methimazole 2x a day and 25mg atenolol 2x a day.

Kimberly, I split the pills because I have bottles of a few hundred of each. There was a big savings buying them 500 at a time. They are scored already. I just follow the line and they snap easily. My MD has a pharmacy in his office so they ordered full bottles for me and stuck a label on them. Huge savings!

[AzGravesGuy]

in reply to: TT = anxiety reduction? #1177636

I was put on Cymbalta for my anxiety/depression 3 years ago and when I was taken off of it (after 6 months, no change in symptoms) I suffered a miserable month of hallucinations, fatigue, anxiety, atrial fib, and body pain. The friendly neighborhood ER got to know me on a first name basis then. I too had what I can only describe as an ethereal visitation. I chalk it up to fried neurotransmitters and my brain trying to comfort me, the self preservation mode switching on in the subconscious.

The neurologist the ER had on call said that some new meds are given regardless of what the short or long term effects are and many companies have been sued for endorsing off label use. (More written scripts means more perks for the dr and they may not always have your best interest in mind, but a quota from the drug company instead.)

Neurontin was the last big one to make the news for this “off label” endorsement and abuse. (I was on that too at one point.)

I was put on Cymbalta to shut me up instead of running appropriate bloodwork, or addressing the behavior itself that would let anxiety bloom into full blown panic. (Also before the Cymbalta I was given Serzone, Depakote, Seroquel, Buspar, Zoloft, Paxil, Prozac, Tofranil, Wellbutrin, Meridia, and a few more I can no longer remember, nor want to. If there is an ssri, snri, or sndri out there, I have been put on it.) I later addressed this with my psych and he denied any connection to GD and panic, despite the published study excerpts I handed to him that clearly stated GD can cause everything from panic to full blown psychosis like symptoms. (The Cymbalta clock on his wall should have been a clue, or his Lexapro stationary, or the Effexor stress ball on his desk…he was not working for ME, his job was to write scripts.)

When this detox ordeal was finally over guess what? My GD remission was over and I was back hyper in full force. Even with this info, my psych was more than eager to push another pill on me. This time it was lithium. I declined, at this point drawing the conclusion that I was not crazy, bipolar, or had GAD, but it had to be something else. As my levels came down (with methimazole) the symptoms that led me to see the psych lessened, became more manageable and eventually stopped.

What I learned from all of this is that despite the chemical/hormonal cause for the anxiety was gone, I had to retrain my mind to stop the behavior of letting an uneasy feeling become full blown panic. Finding the skill to look at things objectively instead of feeding into the emotion was difficult at first but now it is automatic.

Even with this last bout of hyper, anxiety yes, panic attacks….no.

I still have a bottle of Valium 5mg that I have used occasionally in the last 2 months. It was my “last resort” pill for when the meditation was not working and I could not shut down enough to sleep. It worked.

Growing up we are taught to have a blind faith and trust in doctors. The ugly truth is that some do not have our best interests at heart. I now look at them like I would an unfamiliar auto mechanic. Know your condition before you sign the estimate, beware the cookie cutter treatments, research everything you can. I trust my MD because he has been nothing but brutally honest from day one. I trust my pets’ vet because we were friends before I even had pets. My mindset has evolved that any doctor that treats me has to prove themselves competent first….and yes, I ask test questions. Lol!

[AzGravesGuy]

in reply to: Acronyms List? #1177664

http://www.gdatf.org/forum/topic/43343/

I typed something in here yesterday but it never showed up so I will do it again. Lol!

This is the thread you were looking for. Eventually it will be posted to the top of the page as a permanent list.

[AzGravesGuy]

in reply to: Well, here goes! #1173588

I have been dropped to 5mg methimazole twice a day and 25mg atenolol twice a day. Cutting pills in half as I type. Bloodwork recheck in 2 weeks or sooner if I start to feel symptomatic of hyper again.

Hope this works, even if just for a few weeks….I will take whatever calm I can get. Update as soon as something or nothing happens.

[AzGravesGuy]

in reply to: Will doctor write letters for Jury duty? #1177465

I would absolutely think so. Anyone who has witnessed or understands the snap judgements and irrationality that comes with Graves’ Rage would not want that potential sitting in a jury box.

I didn’t get a note when I was called but I was dismissed and told to go home early due to my aggressive attitude, which I apologized for and explained before I even got polled. That was 4 years ago and they have not asked me back since.

[AzGravesGuy]

in reply to: Well, here goes! #1173585

Thank you everyone for your support. I let this last hyper bout go to my head and that is not practicing what I preach. I hate being a hypocrite so I am blaming the Graves’.

Drum roll please…..

Tsh – .60 (.45-4.5)
FT4 – .5L (.8-1.7)
FT3 – 2.0 (2.0-4.

I am in low normal range! The sweet spot is so close!

Whooohooo! Time to SLOWLY start backing off the meds! These results just came in so I will have to confer with Dr. Matt tomorrow morning.

You guys are the first to know!

Smtucker, what is it with endo’s being creepsters? I have left mid appointment before, saying “no thanks” to the bewildered dr. If someone makes my skin crawl…I am outta there. I am glad you found the right dr! Thank you for following my story and the kind words of support.

Karen, I feel like we have been to hell and back together and I thank you for reminding me of the mindset I should have. Sometimes a hard slap upside the head from a friend is what it takes. Thank you for that! I read things are changing for you as well and I think that is very exciting. If I had the opportunity you have waiting in Cleveland, nothing would stop me.

Shirley, I agree. “Journey” is over used. I am going to shift to the “Graves’ Experience” from here on out. Dr. Matt has joked that I am more of a GD expert than the endo he knows (and does not recommend. ). He has said I make him do his homework, as I am in a constant state of doing mine as well. lol!
I have had his front office call directly for appointments and when the other side asks the magic question “and what insurance does he have?” The red tape piles on. The one woman even took the other office to task “what do you mean you don’t KNOW if you can see him?” all to no avail. They are tired of seeing me get the run around, as they now have experienced it themselves. They have been very sympathetic to my plight and are amazing at their jobs, but again, ” no insurance – no thanks” seems to be the trend. Most of the endos they call ARE packed full of diabetes patients and I think that is more telling of the real trend in why no one wants to schedule me.
You are constant source of support and information for everyone on this board. If you haven’t been told yet today, THANK YOU!

Kimberly, it has taken so much longer than anticipated I thought it would never happen. There were some dark days in the last month. We have tried the cancellation list but I have yet to get a call…..ever. I am impatient and that makes it worse. I have tried the “call every day” route unsuccessfully. Instead of seeing me as a patient in need I am labeled a pest and forgotten. I need to start looking on your side of town. I hate the drive, but if I have to go as far as Chandler even, that is where I have to go. Seeing how far others drive to see a qualified dr on this forum has made me snap out of my “rules” for finding a dr. This board would not be as great as it is without you. Thank you for your work here and your continued support of everyone who posts.

I can finally relax a little tonight. Time to treat myself to some overpriced organic strawberries!

[AzGravesGuy]

in reply to: Significant hair loss #1177339

I used to sell Nioxin products a decade ago when I was a sales rep for a local wholesaler. At that time their focus was on eliminating a specific demodex mite that lives in your scalp. A trip to their current website shows that they have broadened their approach and even list Thyroid disorders as a reason for thinning hair and breakage. The site also makes it sound like they are trying to address all the major reasons with their products now, so I might consider giving them a try again. I haven’t had “real” hair in so long I am kind of fond of my buzz cut, but it would be nice to have some versus none again.

[AzGravesGuy]

in reply to: Well, here goes! #1173580

Howdy everyone!

I apologize for the delay on getting back to update my post. It has been an awful past few weeks. I woke up and found myself in a bad place…..it was Fresno. Lol! So I needed to forget about my GD for a while and work on the mental me. Now I am back and ready to take control of my life again.

It has taken every bit of 3 weeks on methimazole 10mg 2x a day to get me back to feeling cooled off. So much for the 1 week of higher dose treatment we orginally planned. I am going for bloodwork tomorrow, as I now feel as normal as I did before last month’s shake up. I do not feel hypo, just normal…I think. It’s hard to discern what “normal” is. There was no point in going any sooner. Now tomorrow cannot come fast enough.

I saw a thread on the forum on hair loss….I miss my hair. What’s left of it had a big texture change in the last week…from regular hair to fuzzy, break off hair. I had a dog like this once…we put him on Levo and his hair came back so I am pretty sure I am close to the same point, only mine is methimazole induced. Again I will start the dance of ATD dosing to find the sweet spot. I am very excited, as nothing has been worse in my experience than running hot like I was. I cannot wait to get on a reduced Atenolol dose as well. I have been exercising and my heart will not go above 95, but my dr STRONGLY advised me to not touch the 50mg x 2 daily dose until labs r back. I do not feel drugged or slow, but knowing I am cooler makes me automatically assume I am overmedicated on it.

I still haven’t found a new endo. I stopped looking. No one can see me sooner than 6 months out. My primary care dr (he’s an MD) is comfortable in the mean time, as I research everything for him, present my findings vs symptoms and we go from there.

I wish I understood why all my local endo’s are booked until November…..ridiculous. So for now, I don’t need one, I don’t want one. I have called 8 offices and they all seemed pretty pretentious once I said I was a “self pay” patient. No thanks, I already don’t want to see you. (Yelp has been a good gauge of the local endo’s…..so glad that brutally honest resource is available.)

I will check back in once I get my results….Tuesday or Wednesday at the latest. My Dr said just come in with them once I get the email and we will talk on his lunch or he will see me inbetween patients. He is frustrated the RAI didn’t work as well. Awesome guy and he knows I am stuck. Why can’t I find an endo with the same qualities?

[AzGravesGuy]

in reply to: What diet changes did you make after Hyper/Graves’ Diagnoses? #1177183

I was Vegan 12 years before diagnosis and have been 80% Raw and 100% organic since the RAI last fall. Soon I will cross 20 years as a Vegan, more than half my life.

I eat a lot of foods that are said to be anti-inflammatory. Kale every day, fresh fruits and whatever vegetables are in season. The only high-heat treated foods I eat are pressure cooked dry beans and the rice/pea component of my hemp/chia/rice/pea protein shakes.

There are no gluten containing foods in my house, nor canned foods, soy foods, or highly processed foods. Occasionally I will fire up the dehydrator to 105 degrees for some cashew “cheese” kale chips, but that is about as hot as my veggies get.

I drink 3 cups of green tea every day. The caffeine in the tea does not seem to effect me, but last week I drank half a Diet Coke while at lunch with a friend and it messed me up for a few hours.

As far as benefits? Dr. Barnard, Dr. Weil, and the dietician I saw all say I am doing it right, but I still got Graves’ and still have Graves’.

This lifestyle is not for everyone, but I enjoy crunchy foods and meeting crunchy people at the farmer’s market. Always entertaining.

You haven’t lived until you have eaten raw turmeric root. 😮

[AzGravesGuy]

in reply to: wife of graves disease #1176535

lisamac wrote:

i know i sound selfish but its taking its toll on me watching my hubby going through this is awful…… xx

Hardly! GD affects spouses as much as it does the afflicted. There is no shame in feeling this way. I hope the surgery provides some respite for both of you.

[AzGravesGuy]

in reply to: Help the GDATF by Sharing Your Story! #1176907

GDATF is a tremendous resource of patient experiences and medical information. The community has welcomed me with open arms and I am grateful to have access to the collective experience of those who have posted. Before finding GDATF I was scared, confused, alone, and without hope. Now I feel empowered to take charge of my health and I am not afraid of GD anymore.

[AzGravesGuy]

in reply to: 3 year old girl with graves disease #1177077

Hi Wendy,

Your daughter’s story breaks my heart. No child deserves to struggle with GD and I hope she responds to treatment sooner than later.

Does the goiter cause her any problems swallowing? This could explain the drooling. Also carbimazole can change the way things taste and cause stomach discomfort. When my stomach is upset or I am nauseous I produce a lot more saliva, so this could be something to consider.

You are both in my thoughts and I wish her a fast and full remission.

[AzGravesGuy]

in reply to: Stress and Graves’ #1177088

I agree with Kimberly and Cat. There may be other circumstances but when it comes down to it…..yes.

I started a very high stress job 2 months before my diagnosis, no thyroid problems ever before. The first month I was ok, the second month I lost 30 lbs.

Stress hurts the body. Period. How the body reacts is up to the individual.

[AzGravesGuy]

in reply to: 8 weeks post RAI – back hyper and not sleeping! #1177140

Hi Copper!

Yes, it can take a full 18 weeks, in some people longer to get the full effect of RAI. You are at week 8 and the tissue is probably still in the die back stage. This can give you hyper symptoms like insomnia.

I used meditation and when needed Valium to handle the insomnia.

Rest assured you are still in a transitional stage and what it is now will not be what it is in a few more weeks. If the insomnia gets worse contact your doctor and have some bloodwork done. You may need some Tapazole to ride out this phase of treatment.

Whatever happens, I wish you the best of luck and hope you get the sleep you need.

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