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#1 May 25, 2012 01:11:38

catstuart7
Registered: 2012-04-17
Posts: 226
Profile  

how long till brain is back?

I was wondering how long till you really feel like you can think clearly and trust your emotions again? I am seeing some signs that the PTU is working, mainly in the heart rate getting slower, but emotionally I'm as bad as at the beginning of this sleigh ride. Sometimes fear and paranoia overtake me about small things and catastrophes spin about in my mind. Sometimes it is anger for something I really should be able to let go. It takes a while for me to catch myself before I take an action based on these feelings, sometimes I don't catch myself in time. My memory is shot too. For example I'm not sure that I haven't already posted something about this already.

Any perspective much appreciated

Edited catstuart7 (March 16, 2013 03:53:34)

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#2 May 25, 2012 05:31:00

Harpy
From: South Coast, NSW, Australia
Registered: 2010-07-19
Posts: 183
Profile  

how long till brain is back?

Everyone responds a bit differently, but usually after a few months of stability with the thyroid hormone levels, the rest of the body begins to catch up and other symptoms like brain fog, mood swings, panic, muscle fatigue all begin to fade. Normality will return, it just takes a bit of time.


I am not a Registered Medical Professional nor am I a Formal Researcher of any description, therefore everything that I say and write is purely my own opinion that is based on my own personal experience and information that I have read, henceforth anything I say or write cannot be construed as advice in any shape or form.
Every individual needs to do their own research so that they can make fully informed decisions about their own future and take full responsibility for the decisions they make.
My partner is the GD patient, I am just her researcher and advocate.
PTU treatment for Graves 7+ years ongoing, Supported by Low Allergenic Paleo Diet, Supplements, Yoga, Meditation, Exercise and Lifestyle changes.
Tests in Jan, March, June, Sept and Dec 2012, normal range for FT3, FT4 and TSH and receptor antibodies only marginally above normal in March, well in range in Dec - Scaling down PTU dose and looking forward to a remission attempt in the near future.

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#3 May 25, 2012 16:24:41

catstuart7
Registered: 2012-04-17
Posts: 226
Profile  

how long till brain is back?

Thanks Harpy, it's good to know there's some hope at the end of this tunnel. Still even a few months feels like an eternity!

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#4 May 27, 2012 20:24:11

PolishTym
Registered: 2011-03-01
Posts: 65
Profile  

how long till brain is back?

Sorry to hear about your memory problems. My memory was highly detailed visually until I got on methimazole, and then bam. It dropped like a rock. It has been getting better after surgery, but I think it is a slow return. Making more lists, jotting down more detailed notes in my calendar, saving more emails, and being more organized helped me.

Best wishes.


Diagnosed 2009
Total Thyroidectomy 2011

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#5 May 28, 2012 03:32:09

Bobbi
Online Facilitator
From: Miami, FL and Zephyr Cove, NV
Registered: 2008-10-27
Posts: 1325
Profile  

how long till brain is back?

I have been hesitant to mention this again – although anyone going back in my posts over time could easily pick up on it. But my experience with PTU involved serious mental fog. I was at normal levels of hormone, but still felt sick and couldn't think. So I blamed the PTU, decided it was a drug reaction, and went with removing my thyroid. At the time, people here told me that was a mistake, that I could still have the problem but then be missing my thyroid, but I paid little attention to that idea. I have never regretted getting my thyroid removed. The brain fog went away never to return once I was off the PTU. So – my experience with the meds wasn't a positive one. I also know, in retrospect, that I probably did not allow enough time for my body to heal AT normal levels of hormone, on the PTU, to be able to determine that it was indeed the drug that was creating the problem. So, I don't “know.” Thus my hesitation. But I do know that individuals react differently to medications, and it is something to keep in mind. Some of us do have adverse reactions that are not necessarily typical, but which are real. I was on a HUGE dose of PTU to get those normal levels of hormone (I was taking what was a maximum level dose according to the drug manuals), so it's entirely possible that I simply couldn't tolerate it, while others can. But, if the brain fog persists; if you don't see improvement (however slight) over time; consider that you might not be tolerating the drug well.


[b:3sz1pkbe][color=#008000:3sz1pkbe]Bobbi GDF Online Facilitator[/color:3sz1pkbe][/b:3sz1pkbe]

Edited Bobbi (May 28, 2012 03:34:13)

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#6 May 28, 2012 07:34:58

beach45
From:
Registered: 2011-04-28
Posts: 174
Profile  

how long till brain is back?

Catstuart, I can relate to all that you are feeling being on Methimazole myself 20 months. I am actually feeling a bit more clear minded just 3-1/2 weeks post RAI and about 5 weeks being off of Methimazole. I had very extreme mood swings, anger, anxiety, depression and fog, loss of memory and yet I do not know if this was the medication, my levels changing too rapidly with dosage changes, or the fact I am getting closer to menopause. That female endocrinologist I had said I have a double whammy, Graves and getting close to menopause! None of my male endocrinologists will say this. My ob/gyn said get my thyroid fixed first and then see if it is female hormones. I also know of people who do very well on Methimazole and stay on a low dosage to maintain levels for years. It just was not a good thing for myself. Whether it was the drug or possibly stirred things up with my existing imbalances of female hormones due to the stage of life I am in, I will never know. I do not think all the doctors will know either as each individual is unique. Methimazole was not working well for me yet I do believe that if our levels balance out that symptoms will improve in time. I never really got to a point where it held long enough. I had maybe a couple weeks here and there which I could consider normal, or feeling myself again. There are people though where the feeling of balance stays that way and I think the key here is working with a good doctor who will stay on top of your levels so you don't swing too hypo or too hyper on Methimazole. I was on a wild ride and did not sometimes have the best monitoring and since we are limited to good endocrinologists in my area, it was difficult to find someone to do testing more frequently. I have that now even though my endo is not the most compassionate he does know what to do with levels and it is good that I found him last Fall 2011. So as long as you stay on top of things and I found myself journaling my symptoms and I have an excell spreadsheet of all my MMI dosages, TSH, Free T4, Free T3 levels, and my symptoms which I gave to all my doctors so they could get a clear picture. This was done per the medical advice of another medical professional I am seeing. Plus if you can stay with the same doctor, one who will work with you, it is best only going by my own experience of having 3 endos and an internist helping me along this journey. In time, I am sure it will get better for you and for me that was staying on top of things and trying to communicate well with my doctors which was not always easy yet I learned as time went on how to better get across to them. It takes time and patience what I learned from Graves. Good luck!… beach 45

Diagnosed - Aug 2010
MMI - 20 months (5-20 mg per day)
RAI - May 2012
TED - Moderate; inactive

Edited beach45 (May 28, 2012 07:41:11)

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#7 May 28, 2012 17:23:58

Darcy43
From: Michigan
Registered: 2012-04-09
Posts: 125
Profile  

how long till brain is back?

I am in the same situation. You get balance in your hormones, but the anger, moodiness, etc. is much worse. And let's not talk about the monthly cycles…OMG. I need to be locked up during that week.

Keep us posted. I am praying for you, for us all.

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#8 May 28, 2012 20:51:54

catstuart7
Registered: 2012-04-17
Posts: 226
Profile  

how long till brain is back?

Bobbi, thanks for sharing your experience about the PTU - I have been wondering the very same thing. The fogging did increase when I started the PTU but then I wonder if it is because the hormones are dropping too. I'm definitely going to keep a watch on it.

Beach, definitely I'll wait till I get a steady stretch of having the hormones at normal (if I'm lucky enough to get that) before making conclusions. I do overall like my endo though I suspect she's going to balk when I bring up anything off the main track. It sounds like you had a roller coaster with the meds so it was hard to tell what was causing what. I hope things smooth out post-RAI fast for you.

Thanks Darcy - may we all heal!

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#9 May 29, 2012 04:20:22

beach45
From:
Registered: 2011-04-28
Posts: 174
Profile  

how long till brain is back?

Catstuart, Thank you and I hope it all works out well for you on the PTU. It does take time and we are all so unique with how we respond to the different treatments for Graves disease. I wish sometimes it had worked out well for me to get into remission with antithyroid Methimazole, yet it just did not happen and yes it truly was a rollercoaster yet I have faith that now post RAI that things will get much better in time. It will for you too!….beach

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#10 May 30, 2012 21:30:05

rapunzel
Registered: 2011-04-01
Posts: 13
Profile  

how long till brain is back?

My heart goes out to you. Our stories are very, very similar. What I can report from farther along the road is that, while my brain is very different than it was before Graves, I have learned how to use my now-different brain in ways that accomplish what I want to accomplish. If anything, being incapable of the kind of detailed, highly-systemized organization I used to produce so easily, my thinking has become more insightful and creative. It's not the brain I had before, but it's still powerful and can do anything I ask it to.
It needs more sleep than it did. It demands better nutrition than it did. It simply refuses to produce if I haven't been taking care of myself. However, that is certainly partly due to the fact that I'm 13 years older than I was when I came down with Graves!

It gets better. It gets easier, as my friend says, “little by slowly.”

Some concrete things I did to restore my mental powers:
- Gave up TV. Entirely. Got rid of the damn thing.
- Bought a book of NY Times hardest crossword puzzles and worked on it every night.
- Read, read, read, the most interesting books I could find.
- Studied algebra, probability, and logic, using GRE practice material.
- Researched everything I could find on Graves, including material in my local University's medical library. This required looking up a lot of Latin and Greek roots of words, and looking up “beginner” explanations of some medical terms.
- Took notice of how I solved problems in new ways and worked to get good at those new problem-solving skills and use them.

And, (drum roll, please…) if you play a musical instrument — Play it as much as you possibly can!!! If you don't, consider learning one.

It gets better. It gets easier. If you do a little each day, and if you miss a day, forgive yourself immediately and do some more the next day, you find results that will amaze you before you are half-way done.

I wish you hope and lots of stick-to-it-ness. You CAN beat this. You will find strengths and “intelligences” that you didn't even know you had.

Blessings,
Rapunzel

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