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#1 Oct. 4, 2016 07:07:51

Antony_62
From: Illinois
Registered: 2016-10-04
Posts: 6
Profile  

Is it all due to graves?

I was diagnosed 12 years ago and had RAI 9 years ago (endo had me on tapozole for 3 years) and was on 50 mcg of synthroid until this last December 2015. I've been plagued by a myriad of problems since diagnosis and RAI, which seems to baffle the 4 endocrinologists I've seen over the last 12 years: I disply symptoms of both hyper and hypo-thyroidism (can't lose weight but tremors can be awful).
I have a new doctor who put me on NatureThroid (low dose of 88mg) but I've complained and fought to get up to 3g because of dizziness, fatigue, feeling cold, gaining 30 lbs, lost 1/2 of my body hair and last vist showed my b/p was 91/57. My doctor said it wasn't his fault, I was lying about what I was eating (700 cal/day) and said I was fine…wanted to see me in a year.
This has been a constant MO for my endocrinologists over the years and I feel lost and frustrated, having to fend for myself. Having doctors blame my behavior for my issues doesn't help and being called a liar instead of them looking deeper into my problems finally has me sick of it. I also have a huge problem with sugar and carbs: they put me down like a tranquilizer…yet high anxiety (I was never anxious before 12-13 years ago). I'm sick a lot and used to have a great immune system. My TSH keeps fluctuating and was 6.87 at one point. I don't even know if I should get a flu shot.
I have a tendency to blame it all on Grave's but I wonder…
A friend and co-worker talked me into getting a referral to internal medicine at the Mayo Clinic since they have a team approach. (My friend and I have something else in common: the same doctor. He misdiagnosed her as type 2 diabetic and she's type 1 and has cancer). I think a total evaluation of my overall health is way overdue, given the complacency of my doctors. I want to know what's going on.
Any suggestions or ideas are welcome.


Feel free to pm me

Antony

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#2 Oct. 4, 2016 10:49:04

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 3930
Profile  

Is it all due to graves?

Hello and welcome back! We are fellow patients here, not docs or nutritionists, but the 700 cal/day sounds like it would be *very* difficult for you to get enough nutrition to function on a daily basis!

That is good that you have an appointment with Mayo - hopefully, they will be able to shed some light on the issues you are experiencing.

TSH alone is fine for patients who are stable and feeling well, but with your symptoms, it would certainly make sense to take a look at Free T4 and T3.

Finally, if it was me, I would not include my e-mail in my signature. Although you have to be a member to post here, *anyone* can view the posts. I would hate for a spammer to get a hold of your e-mail! You can always change your signature to say “feel free to PM me.” You can send a private message to another user by clicking the PM option in the menu in the top right-hand corner of the screen or by clicking the PM option when you are looking at one of the person’s posts (located to the left of the post, below the screen name. When you send the private message, a notification will be sent to the person at the e-mail address they used to sign up for the forum. They will need to log in to the forum to view your message.



Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 Oct. 6, 2016 19:56:09

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 94
Profile  

Is it all due to graves?

I think a team approach to your medical care will be good for you, since you seem to have so many symptoms that could be caused by lots of things.

I had the same thought that Kimberly did about your thyroid tests. TSH doesn't tell the whole story. T3 isn't always tested, but testing Free T4 is very important. If my endo had been treating me based on my TSH alone, I would have been miserably hypothyroid for most of the last five years because my TSH always remained low even when my T4 and T3 were good.

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#4 Oct. 10, 2016 16:24:29

Antony_62
From: Illinois
Registered: 2016-10-04
Posts: 6
Profile  

Is it all due to graves?

Found out T4 is 0.4. Adjusted naturethroid from 195 to 269 mg. Having trouble getting into Mayo: they want a call from my doc and he won't. Don't they have a fax#?


Feel free to pm me

Antony

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#5 Oct. 10, 2016 17:18:39

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 3930
Profile  

Is it all due to graves?

Yikes - No wonder you have been having symptoms! Hopefully, you have a follow up scheduled in a few weeks to make sure that is the right dose adjustment for you.

The following link is all I have for Mayo; surely, there is some avenue to get in there, even if your doctor won't call them:

http://www.mayoclinic.org/appointments

I saw an eye specialist a few years ago at the Arizona location a few years ago, and this was not a requirement for me.

Hope that you start feeling better soon!

(Note on links: if you click directly on the above 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).



Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#6 March 16, 2017 15:11:51

Antony_62
From: Illinois
Registered: 2016-10-04
Posts: 6
Profile  

Is it all due to graves?

The young endo at Mayo didn't listen to a word I said. It was very frustrating. I was with a coworker who was there on another matter but I spoke with the nurses and told them how upset I was; I wanted another endo but my ride wanted to leave. The doc I got was so fixated on my wheezing that she declared that was the cause of my insomnia and didn't want to see me until I had a pulmonary consult the following month.
I usually go in to see a new endo guarded but this was Mayo, so I was just hopeful. When I left, I was almost in tears.
They denied the internal med review I requested because my primary wouldn't call them.
Not sure what to try next. I hear U of C has a similar review. Maybe adrenal fatigue? I'm not a doctor…more like a mushroom.


Feel free to pm me

Antony

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#7 March 17, 2017 07:54:46

Liz1967
Registered: 2014-02-25
Posts: 158
Profile  

Is it all due to graves?

I get my Graves eye care at the University of Michigan in Ann Arbor as they specialize in Graves. The university also has a thyroid multidisciplinary clinic in their Endocrinology division. The phone number I found for that on their website is 734-647-8906. If you live in northern Illinois, Ann Arbor is not very far. Maybe they can help you out. Are you sure your thyroid is completely gone? Has anyone done an ultrasound looking for remnants?

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