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#1 Feb. 28, 2012 07:19:20

busymantis
From: Moose Jaw SK Canada
Registered: 2009-01-03
Posts: 5
Profile  

Just Wondering

Hi! I was diagnosed with Graves many years ago. I had a partial thyroidectomy about 12 years ago. I have had normal thryoid levels since. I have not had to take any meds at all, I am thankful for that. The last three months I have been suffering a headache that is in the front part of the forehead. It is worse with sneezing, coughing, bending over. So the original thought was sinus, but had x-rays and they showed nothing. With thinking and seeing signs of thyroid issues, I had my tsh levels checked. The blood work came back normal. My symptoms are weight loss, the strange headache, anxiety, trouble sleeping, temper, brittle nails, hair loss, dry eyes, itchy rash on legs, and brain fog. I do have a CT scan that is being booked, but I am wondering if anyone has had these issues. I am trying to figure out what route I should go with my doctor. Unfortunetly the doctors around here are not very informed about graves. I like to be well informed and then I can make suggestions to my doctor. I am also wondering if Tsh levels can be misleading and if I should request T3 and T4 levels to be checked.

Thank you for any info that can be provided.

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#2 Feb. 28, 2012 09:23:59

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 3511
Profile  

Just Wondering

Hello - For patients who are stable and feeling well, TSH testing alone is the preferred testing method…however, it certainly seems reasonable to test your T3 and T4, since you are currently experiencing symptoms.

We are working on a story on thyroid surgery for the Foundation's next print newsletter, and there was a recent study that noted a 16% recurrence rate of hyperthyroidism following partial thyroidectomy. So while that's certainly not the most common scenario, it is something to at least make your doctors aware of.

If your T3/T4 do come back normal, hopefully, you have a doctor working with you who will keep looking until you can find the cause for your symptoms – and finally get some relief!


Kimberly
GDATF Forum Facilitator

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

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#3 Feb. 28, 2012 14:47:26

busymantis
From: Moose Jaw SK Canada
Registered: 2009-01-03
Posts: 5
Profile  

Just Wondering

Thank you for the info. I will push to have my T3 and T4 bloodwork done. I appreciate the response as I was feeling like I was going crazy and very misunderstood. I feel much better about requesting further testing.

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#4 Feb. 28, 2012 18:30:55

snelsen
From: Seattle, Wa.
Registered: 2010-01-01
Posts: 1762
Profile  

Just Wondering

I would DEFINITELY get the T3 and T4 along with TSH. Kimberly, I am having a mind block. Is it free T3 T4 or total? Forgot/
shirley


TED 2008-present. OD for pressure on optic nerve 02/02/10
Eye muscle surgery 09/23/10 Upper eyelid surgery 02/01/11
Lower eyelids with grafts from palate, 10/5, 10/25/11
Graves dx/thyroidectomy 1959-Synthroid from 1980

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#5 Feb. 29, 2012 08:47:44

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 3511
Profile  

Just Wondering

Hi Shirley - Free T4 is the preferred test vs. Total T4. However, there is some controversy in the medical community over Free T3 vs. Total T3.

The latest guidance from the ATA and AACE notes that “assays for estimating free T3 are less widely validated than those for free T4, and therefore neasurement of total T3 is frequently preferred in clinical practice.”

I'm not 100% sure about the medical jargon, but I take this to mean that the Free T4 test has been subjected to more testing/scrutiny to ensure accuracy.


Kimberly
GDATF Forum Facilitator

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

Edited Kimberly (Feb. 29, 2012 08:48:09)

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