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in reply to: Concerned ex girlfriend: graves rage & abuse #1185862
Kimberly, sent PM
in reply to: Concerned ex girlfriend: graves rage & abuse #1185860Hi there IWonder,
I read your posting with profound sadness.
My untreated Graves’ made me more or less a madman. Even on methimazole, in a “subclinical hyperthyroid” state, I was an anxiety filled, uncontrollable, humorless, joyless, often evil, sometimes violent a$$h*#@. I wanted vengeance on everyone and everything that I perceived as having “wronged me”. I didn’t sleep well, blamed others for my own shortcomings, and had a few moments I can clearly define as psychotic episodes. My body was reeling from the internal inflammation…I wanted to jump out of my skin. People trying to care about me only made it worse. This is exactly why we call it “Graves’ Rage”. Mean without an overt reason.
It was completely out of character and cost me many things in life. Jobs, money, friends, loved ones.
Now that I am on the other side of Graves’, years after a total thyroidectomy and being regulated on Synthroid, I still carry immense shame, embarrassment and guilt about how I acted and treated people that truly did not deserve it, or see it coming for that matter.
While in the throes of Graves’ I also used copious amounts of marijuana. Looking back, it did not make me any better mentally. I suspect it did help with my thyroid eye disease symptoms, but that is a story for another time.
Graves’ made me hate filled, which my therapist and I have been able to get to the root of, years later. My layman’s suspicion is that there are greater demons lurking in your ex’s psyche than he let on.
Is it “normal” to act like this with Graves’? In MY experience, yes. That is no excuse though. I was a verbal abuser and very gifted at it. ( I learned from the best, my parents, lol)
If he does not follow his med protocol, he will probably see many more days/years of feeling and acting the way he does. Sad. Thankfully not your problem anymore.
The good news is that YOU got out! YOU got away! Your focus should only be on YOU from now on.
It hurts to see people we once loved devolve into hurtful, violent strangers. But trying to reason why can keep you from embracing love and happiness in the present and future.
It is normal to wonder what happened, I get that. But given the individualistic nature of manifestations of Graves’, you may never get all the answers you want.
IMHO, the best thing you can do is close that door and keep walking. Don’t look back. You made it out alive. You’re free from your abuser.
I hope I have provided enough of an answer, or at least some insight for you about Graves’ behavior to stop wondering and continue moving forward.
You deserve better in life and I am very happy you were able to escape him.
Love and respect,
Rob
in reply to: Feelings and emotions with Graves Disease #1185690Hi MPerry,
Wow tsh of 22! Definitely time for a bump!
I’m sorry you have swung back to hypo. That’s a rough time, but it is temporary.
I think it was about 2 years of gradually increasing to my current 175mcg. After surgery I started on 100mcg, moved to 150 within the first year and a half, taking every step up along the way.
Sometimes I could mentally and physically feel the need for the bump and other times it was my bloodwork telling me my tsh was 64, even though I felt just fine. LolAfter a dose increase…10 days and I would start to feel better. I hope that is how you respond too.
The term you want to listen out for with your bloodwork is “subclinical”. It means you need fine tuning with your dose, although some doctors dismiss it as “good enough”. I’ve always found the moments of my life that were “subclinical” hyper or hypo to be the most challenging to cope with mentally. Very symptomatic. I relied heavily on meditation and early morning exercise to get my focus and control on those days.
My best advice is be patient, get your blood run every 6 weeks if you can. Your body is still in transition from a high hormone life to a low hormone life.
Some of the rollercoaster stuff from before might still exist right now. Your brain is being retrained to live without the high hormone presence, and the brain behaviors that went along with it might linger.
If you’re feeling poorly and being told your levels are ‘Ok, but in low range’ or similar..then you need to be vocal with your doctors. Demand the care you deserve. Most importantly get a copy of your bloodwork and learn the range system that lab uses. See where you are on the spectrum of “normal range” Free T3, Free T4, TSH.
Personally I do best a little on the higher side of FT4 vs low to middle.Your body has been through a lot. Thyroidectomy is a major surgery. Graves destroys the body and mind. Just trashes you physically. Give yourself time to heal. Eat good things, meditate. You will get focus, strength and control over the rollercoaster. You are still recovering. Give your body some time.
in reply to: Questions on Thyroid surgery #1185743Surgery was the best thing that ever happened to me.
I got my life back!
The anxiety and “crazy” went away as soon as that source of constant inflammation was finally removed. The change was nothing but astonishing.
I had a few bumps with regulation, started at 100mcg of Synthroid, and finally stabilizing at 175mcg. It took a year or two to get to 175. We adjusted as bloodwork and personal opinion dictated. I feel best on the higher end of the T4 range instead of dead center.
I pay $35 a month cash for Synthroid, not rung thru my insurance, at a small independent pharmacy. I have never had generic or Porcine derived, so I cannot speak to their reliability, safety, or effectiveness.
Waking up from surgery my throat was sore but with that inflammation causing, diseased organ gone, it felt like I had a big exhale. An inner calmness that hadn’t been there for the 8 years prior. Some say it was the post surgical drugs, lol, but I wasn’t given anything strong. After surgery they want you up and walking around as soon as possible.
I woke up with the anxious, disagreeable, irritable side of me missing. I don’t know how else to explain it. A big exhale, a new person. I just felt better upon waking up. After the failed RAI the year before…there was an all out war going on inside my body.
The war was finally over.
My larnyx was irritated by the intubation, that took some time to resolve. My voice was weak for about 2 months after but that is rare I’ve been told. Other than that, pretty smooth sailing post op.
Since surgery I’ve lost weight and gained muscle. Keto works for me. Carbs are delicious but overrated IMO. I’d rather have clothes that fit. Lol
I would recommend TT to anyone suffering mental effects from Graves’. It stopped the crazy real fast. Lol
Good luck in your journey. Keep us posted!
in reply to: Feelings and emotions with Graves Disease #1185688Hi Kim3498,
Yes! IME Graves changes SO MUCH about your personality and mood.
I spent 8 years on the crazy train before finally getting a thyroidectomy and reclaiming my life.
I don’t have any easy advice for you or your hubby, unfortunately. I was a real #@%*! when I had raging Graves’. There was no reasoning with me.
When Graves’ is active and antibodies are high, sometimes you want to climb out of your skin. A constant level of indescribable stress on the body. Anxiety, anger and depression were common daily, sometimes hourly for me before I finally had surgery. You just kind of go numb to how you act and sound. When you’re mad…you’re MAD. Emotions are magnified to sometimes ridiculous proportions….and you don’t even realize it.
At least in my case.
Graves’ caused me to quit great jobs over small stresses. Destroy friendships over stupid squabbles and hurt loved ones, all justified and perfectly valid to my Graves’ brain. Lot’s of humility and burned bridges from that time in my life.
It’s a shame the psychological side of this disease is not recognized or openly discussed in the medical profession more. Some people like me have a really hard go at it. There is hope though.
Treatment for Graves’ works. I hope he is on meds and taking them. His body is being ravaged inside and it will take time to calm down.
If possible, make sure he keeps up with the counselor visits. Just to get through the present moments. It does not have to be anything long term.
Meditation helped me 1000x more than Valium. So if he is open to alternatives to drugs, I strongly recommend meditation. It’s a moment of stillness in the chaos. It could help you too in coping with your situation. We all need a break, a moment of quiet to center and focus.
Surgery was eventually the end choice for me and I came back to Earth a better man. Which is good…..because I had 8 years worth of amends to make to the people I love.
Keep us posted,
Rob
in reply to: Told “wait and see” while losing my health & job #1185350If you feel this unwell your Graves’ is not being managed properly.
It sounds like you agree.
It is time for you to become your own health advocate and act independently.If you have made a decision about a permanent fix….RAI or TT, book that consult.
Biopsies are great if you have time to wait, for another wait and see approach.
A permanent fix like a TT works really fast. A speedy return to normalcy.
RAI takes time to work and may not be completely effective with one dose.Educate yourself, decide your fastest path to wellness, let nothing stand in your way.
If your drs won’t listen, shout louder. You are in control of your health. This is your future, wellbeing, and livelihood at stake.
“Wait and see” can waste years of your life feeling less than 100%. I lost a decade to it.
I had a TT against my endo’s recommendation (after a failed RAI) and it fixed my life. I hope you find the same relief.
I get up really early on most days.
I take my pill, go for a run or work out, shower, then think about eating and coffee. It is always at least an hour past dosing at that point.
On lazy days I set an alarm, wake up enough to swallow the pill, roll over and go back to sleep.
Leaving any amount of thyroid would also leave tissue for her body to continuously attack. Grave’s is an autoimmune disease. Removing the thyroid completely removes that state of chronic inflammation.
I had my TT at 40.
I have lost 80lbs since. I’ve gained nothing but muscle mass. (That’s me in the pic, lol)My ability to focus as an athlete has returned.
None of this was possible before my TT, despite my best and sometimes outrageous efforts of exercise and diet.
My RAI failed after a year of “wait and see” so I would not personally recommend that route of treatment.
Weight gain is a possibility after surgery, until stabilization on hormone is achieved, but once stabilized, it drops off IME.
Life went back to normal…and fast.
in reply to: Newly diagnosed and treatment options #1185286My TT changd my life, both physically and mentally. I went from an anxiety plagued potato to a tattoo and fitness model in 3 years.
TT was the best move I ever made. It made goals achievable physically and stopped the crazy really fast. No complaints, no regrets.
in reply to: I don’t want to wait and see. #1185265In my opinion, given my experience, I would not wait and see.
I am a strong supporter of the Total Thyroidectomy as a treatment option.
I had both RAI, which failed (thank you wait and see approach) and then a thyroidectomy which actually saved my future.
Get your levels managed on Methimazole and then start booking the surgery consults.
Your body is attacking itself. Remove the thyroid and the systemic inflammation ends that day.
It’s permanent, manageable, short down time, and the crazy stops really fast.
Get your life back, get a TT.
My opinion.
Hi Jo!
I was subclinical hyper for a while. Your clinical symptoms sound right on the money.
My dr at the time also had the “wait and see” approach, not caring about my quality of life.
I’m glad you are pursuing a 2nd opinion. If you don’t feel well, your illness isn’t being managed properly. Part of the Graves’ job is becoming your own health advocate. Learn as much as you can and listen to your body.If you do not feel well you must take action before your quality of life drops. If it already has, then you need to shout louder! Lol
Do not be afraid to act independently with your healthcare. Take that next step. Read as much credible information as you can. Get a consult with a surgeon. Get a consult with a radiologist. Learn about the more permanent treatments you have at your disposal.
Above all…remember you are not alone in this. Read our stories and don’t be afraid to ask questions. Many of us have walked a common path….regardless of age, race, or gender.
Rob
in reply to: marijuana use and thyroid eye disease #1185238I vaped MMJ when my eyes flared a few years ago. Arizona is a Medical Marijuana state. My medication was legally grown and obtained.
Vaping is where the dried flower is heated to a controlled specific temperature, not burned. In my case, the machine fills a valved mylar balloon with the moist vapor released from the heated plant material.
In my experience…100% relieved eye pressure and pain. Hands down no question. Made them bloodshot as can be but relieved the pain and pressure, temporarily.
It did nothing to stop the proptosis. My bout with TED lasted years but the permanent damage ended up being slight. It may have potentially changed my outcome.
So I guess my experience as to it truly “helping” is inconclusive.
As for pain management and comfort….higher CBD strains seemed to work best. I had better anti-inflammatory results with high CBD strains versus high THC psychoactive strains.
I also tried taking an oral CBD extract supplement. It did nothing compared to using the flower.
My doctor and I had a big talk about this treatment. His opinion was that as long as I used the meds as meds, vaping not smoking, once or twice a day…my health risks were negligible. If I chose to become a walking chimney of the stuff then we needed to have a talk about long term lung damage.
I used it, it worked for me. My experience.
in reply to: Dose change symptoms lessened by tranquilizer? #1185220Hi Liz,
That sounds just like “keto flu”.
When your body starts changing its metabolism from glucose based to fat based there can can be a period of several days to weeks (usually starting about the 2 week mark) where you can feel like complete crap. My keto flu lasted 3 days until I found the fix.
Supplementing with Magnesium or Potassium BetaHydroxyButyrate Exogenous Ketones for a few days can lessen if not end these symptoms. FYI, they ALL taste really horrible, but they worked for me.
If you do go low carb again, please consider using Exogenous Ketones to get through the rough patch as you adjust. Once your body adjusts, you will feel just as good as before if not better.
I agree with dropping carbs in moderation, especially if your body is sensitive to change. I went cold turkey to jumpstart into sustained nutritional ketosis in 2 weeks. It was tough.
If I had to do it again I would take 4 weeks to convert instead of 2. Throwing your metabolism switch too fast can be taxing on many body systems….lesson learned.in reply to: Dose change symptoms lessened by tranquilizer? #1185218Hi Liz,
Liz1967 wrote:Also, you need carbs to make serotonin in the gutNot exactly correct. Carbs release insulin, which triggers tryptophan which in turn stimulates a release of serotonin in the brain. (Foods rich in tryptophan do not effect serotonin as that tryptophan cannot cross the blood brain barrier.)
https://www.ncbi.nlm.nih.gov/pubmed/8697046
Some brains release dopamine with this breakdown process as well.
It’s how people become food addicts and or use food as medication and end up obese. Same neuro pathways as drugs. Sugar and carb cravings can be a serotonin starved brain looking for a quick fix from insulin.
It used to be me.
There are many other and better ways (than food) to get your body to produce serotonin.
I live almost carb free now. What carbs I do eat are from the fiber in salad greens and broccoli. No sugar, no wheat, no excessive protein which the body turns into sugar anyway via glucogenesis.
I use exercise to release a controlled amount of adrenaline, which in turn stimulates my serotonin…works much better and lasts longer than food.
It sounds complicated but really isn’t.Practicing meditation regularly has been shown to do it as well. As have living sugar free, performing any daily exercise, supplementing B6, getting some daily sunshine, and even performing a random act of kindness. All these and hundreds of other things boost serotonin in the brain.
Carbs are the easiest but unhealthy if relied on.
Agree 100%….if the anxiety meds work…take them!!!!!
in reply to: Dose change symptoms lessened by tranquilizer? #1185216Hey Sue,
It’s not TMI, you’re discussing a medical condition.Have you considered getting your lady hormones checked before a dose change and then again while experiencing the ovarian pain symptoms? I’m not sure what it would rule out but proving a connection or not could help the direction of your pain management. What does your OB say? I would think any ovarian pain post menopause would warrant further investigation.
I cannot say what causes your anxiety, or anxiety in general but I can attest to the efficacy of Valium on my nervous Graves’ mind. It has been a trusted medication during difficult times (not related to dosage changes) with few side effects.
I do believe anxiety and endocrine hormones are related. I know someone that had a pituitary tumor and they essentially had a break down after surgery with psychotic levels of anxiety and paranoia while their different hormone levels were off. It was Graves’ Rage on crack. Looney Tunes. Now…they’re fine, balanced on replacements. Like 2 different people.
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