[tiredofitall]

in reply to: Continuing Stomach Problems #1185822

I had RAI for Graves about 20 years ago. I never had any stomach problems before that.

Within 2 weeks after receiving RAI I started having debilitating stomach problems. I’ve tried several doctors and they just ignore me when I say that Graves could cause this problem. On the other hand, they can’t find any reason this would be happening. In fact, I even had one doctor say I was nuts.

To this day it has only gotten worse and nobody has been any help at all. I am seeing a Gastroenterologist (again) right now and am waiting for more lab resutls. My stomach is so bad right now, I haven’t been able to do anything in over 2 months.

So if anyone has any suggestions, I’m all ears.

[tiredofitall]

in reply to: All of a sudden I’m hypothyroid #1185704

Thanks for the suggestion.

[tiredofitall]

in reply to: All of a sudden I’m hypothyroid #1185702

Liz1967 wrote:

Has anything changed for you in the past six months? Gained weight? Menopause, perimenopause or hormone replacement? Started new meds, like PPIs (Nexium, etc) for example? Anything that might affect your absorption of levothyroxine or your body’s requirements for it could make you trend hypo.

Hello,

Thanks for the suggestions.
I’ve been maintaining my weight for several years but now I’ve gained about 10 lbs in 2 months, without changing my diet.

Of course, I’m not getting any exercise, because I am totally exhausted all the time and can’t exercise.
Nothing else has been changed (as far as meds).

I really feel, deep inside, that there is something else wrong, but my doctor ignores this. Was hoping for someone to point me in the right direction. I can’t go on like this for much longer.

Thanks

[tiredofitall]

in reply to: Graves antibodies, TED and levothyroxine #1185556

Zoeuk,

I am you. See my post right next to yours: “Graves’ has destroyed my life”.

As you can see from my post, I’ve been fighting this for 20 years with no help at all.
All my doctors, even endocrinologists, just look at me like I’m nuts. They all say the same thing: my labs are “in range”.

You are the first person I’ve heard of that has the same problems I have.
I even had one doctor tell me that once I had RAI I was cured of Graves’, so it can’t be that.

I’m at the end of my rope. Please let me know if anything more.

[tiredofitall]

in reply to: Graves’ Has Destroyed My Life #1185567

Liz1967 wrote:

5 years post thyroidectomy, and two years post last of six eye surgeries on both eyes. Except for some remaining double vision, I am back to preGraves. That being said, I had some anxiety issues before Graves and I firmly believe a perfect storm of bad life events triggered Graves, as is true with many people. My anxiety issues were certainly not made better by the Graves diagnosis and the eye disease with the worries about thyroid levels, etc. No one likes to hear that anxiety can cause real physical symptoms, but it can and it does. I have IBS, migraines and GERD, all of which can make you miserable and I do not attribute those symptoms to Graves. I feel just like I did before Graves and I keep my TSH at a good level for me. So my “normal” does include nonGraves anxiety provoked vascular and enteric issues, issues that existed somewhat preGraves and can be made worse by worry. I really do not notice any symptoms caused by slight variations in my TSH but some people do. I really do forget about Graves most of the time. Look for other causes of your symptoms too so you dont miss another diagnosis.

Thanks.

[tiredofitall]

in reply to: Graves’ Has Destroyed My Life #1185565

Kimberly wrote:

Hello – Sorry to hear you are going through this. We’re fellow patients here, so all I can suggest to you is to keep searching until you find a doctor who is willing to help you get your quality of life back by leaving no stone unturned – whether that is finding a connection with your Graves’ or finding another cause. Not sure where you are located, but perhaps a center that is known for comprehensive care – like Mayo or Cleveland Clinic might be better able to put all the puzzle pieces together.

Wishing you all the best – please keep fighting until you can get some answers!

I had decided on my next scheduled appointment to ask my PCP about starting from scratch with a “comprehensive care” exam as you mentioned.
Thanks.

[tiredofitall]

in reply to: Graves’ Has Destroyed My Life #1185564

SueAndHerZoo wrote:

I’m sure you’ll get other responses but since I popped in here just because I haven’t in so long, I thought I’d reply. No, Graves Disease is not going to rob you of your life forever. You WILL be able to get your life back. I was diagnosed with Graves several years ago and when I couldn’t control my TSH levels with meds, I opted to have my thyroid removed. Has it made all my problems go away? No, of course not, but do I regret doing it? No.

I still have TSH fluctuations (and am still trying to figure out what causes the ups and downs but I probably never will) so when I feel my TSH is off, I have blood drawn and me and my doctor adjust my Synthroid accordingly.

Am I free of any Graves symptoms? No. I have various symptoms whenever my TSH is either rising or falling, even slightly, I’m incredibly sensitive to the changes. But do they interfere with my daily life? No.

I’m sorry I can’t help you with finding a good doctor but don’t lose help – you WILL get your life back.
Sue

Sue,

Thanks for your support. I appreciate it more than you know.
You say: “You WILL be able to get your life back.”
Realistically, if I haven’t gotten my “life back” after 22 years of suffering, I have no hope that I will ever get back anything close to normal. Unless there has been some new breakthrough (which is why I am asking here), there’s no hope. Nothing available at this time helps at all.

Thanks

[tiredofitall]

in reply to: TSH hike 18 years after RAI #1184922

Thanks for the replies. It’s a start.

[tiredofitall]

in reply to: Anyone using Restasis for dry eye? #1184312

I tried Restasis for 3 months. Very expensive. For what it cost it didn’t do much more than artificial tears. So I stopped using it a month ago and went back to artificial tears.

[tiredofitall]

in reply to: daughters thyroid issues #1183914

npatterson,

This sounds just like me.

I had RAI 17 years ago and almost immediately (within 10 days) began the same problems Vicky has (hair loss, extreme tiredness, bad depression, no energy, weight gain) plus a few other problems.
Originally, I saw an endo and he gradually had me (“weaned”) down to almost no Synthroid. I never felt any better.

For the last 15 years, my PCP has taken care of my thyroid monitoring. He has me on a much higher dosage than the endo had me on, but there’s no difference in the way I feel. He always says that I’m within the correct range. No use to try tweaking. The end.

My PCP has pretty much eliminated any other problems. I have given up looking for help and have just resigned myself to living this horrible way-of-life. I have given up on ever feeling any way near normal.

From what you said to Vicky, you seem to be saying that a good endo might be able to help me. How do i find a “good one” in my area? I can’t take another doctor only leading to a dead end.

Thanks

[tiredofitall]

in reply to: Peripheral neuropathy and leg cramps #1182847

JEH

Please post back here if you ever resolve this. I have had exactly the same problems you describe.
It started 17 years ago, right after I had RAI for Graves. Nobody can understand how debilitating or life changing this is, nor do any doctors seem to be at all interested in getting me any relief.
All I’ve ever heard was “to lose weight and exercise”. Can’t exercise at all any more because of the pain, so, of course, I’m not going to lose much weight.

Good luck. Keep us updated.

[tiredofitall]

in reply to: Never the same since RAI #1182365

Thanks for the advice.
I appreciate all your input.

Without going into every detail, I have, at one time or the other, tried just about everything suggested in this forum with no improvement what-so-ever.

Several times, I have changed my Synthroid dosage to try to find a sweet spot. Tried adding Cytomel. B12 and B6 supplements. Strict diet. Exercise.
I have tried at least a dozen doctors and they all say my T4, T3 and TSH are in range, to come back in 6 months and that’s the end of it. Not one of them has been at all interested in exploring the matter past my 15 minute appointment time limit, even when I asked them too. It seems I can not make any of them understand just how bad I feel all the time. They just don’t hear what I am saying.

Yes, I agree that there is more going on here than Graves’, but since it all started with Graves’ (RAI), that’s the point where every conversation gets started.

I just find it really strange that one day I felt just fine and a week later (after RAI) I could barely get out of bed and things have never gotten any better than that.

I am still hoping that someone else has experienced this and can point me in the right direction. That’s why I decided to post in this forum.

Thanks again

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