[bllucas]

#1060740

Hello,
I was diagnosed with Graves back in December of 2011 and started from the beginning with eye involvement. I did ten radiation treatments on my eyes in January 2012 which gave me some relief. Over the past five years I have religiously visited my ophthalmologist every six months and had my blood work completed before my visits as well as routine visits with my endocrinologist. My eye specialist continues to tell me my TSI levels are too high and I have to wait for eye surgery. I finally asked for a second opinion and went to an eye specialist at a highly regarded medical institution. This doctor recommended that I have a total thyroid removal. She said most people do not have the eye symptoms I have been having for five+ years where the TSI continues to be high. She said TED can be a very confusing disease and that normally TED is not connected to the thyroid, but it is. She explained that my body is sending signals causing the tissue in my eye area to swell. She mentioned that she has seen good results in patients like me who have had full thyroid removal. She said a lot more but it was very involved and I would probably misquote her so I will leave it at that.

I am so sick and tired of being sick and tired. I was so excited after this second opinion because it was something besides you just have to be patient and wait. I think after five and a half years I have been patient enough. It might be the answer to getting my TSI numbers to come down so I can finally have the eye surgery I have been waiting for since 2011. This disease has taken so much from me. I have lost the strong, confident person I once was and I have become an avoider of social events unless I have to be there. I am so fortunate the people I have worked with for the last 11 years are like a family or I would have not been able to continue work.

Of course I am worried that if I do have the surgery how it will impact me physically and mentally and what if it does not bring my TSI numbers down? My TSH levels have been fairly stable in the last year at 2.5-3 but it has been a roller coaster before that. I still feel extreme exhaustion everyday around 2-3 pm. I have been on Armour 45 mg since October 2015. I was on levoxyl before that. Here are my numbers:

12/8/11 0.035
12/16/11 0.015
12/19/11 0.017
1/4/12 0.113
1/13/12 0.496
2/10/12 5.874
2/16/12 4.373
3/2/12 2.346
3/16/12 1.388
4/6/12 2.210
5/8/12 2.860
6/29/12 2.559
1/28/13 3.610
4/18/13 5.812
6/3/13 4.737
8/29/13 5.788
10/16/13 2.750
3/13/14 0.969
7/17/14 4.417
10/15/14 4.944
10/15/14 5.181
1/26/15 3.821
6/3/15 2.964
12/14/15 3.855
1/29/16 2.922
5/21/16 2.507

Here are my TSI numbers:
Name Standard range Thyroid stimulating Ig’s <140
12/16/11 478
6/29/12 387
1/29/13 398
6/3/13 512
11/1/13 498
4/24/14 508
10/15/14 578
2/20/15 514
9/21/15 244
3/1/16 311

Name Standard range T3 free 2.30 – 4.20 pg/mL
12/16/11 4.50
12/19/11 4.66
1/4/12 2.93
7/17/14 2.61
12/14/15 3.11

Name Standard range Free T4 0.70 – 1.80 ng/dL
12/16/11 1.60
12/19/11 1.50
1/4/12 1.00
2/16/12 0.90
3/2/12 1.10
7/17/14 1.00
12/14/15 1.10

I guess I would just like some insight on how a TT has impacted others and if anyone else has had to wait over five years for their eye surgery.

Thanks for any insight you can give. I greatly appreciate it.
Brenda

[snelsen]

#1184442

Hello, I am just addressing your seat question. I had a thyroidectomy, and other than recovering from having anesthesia and a surgical procedure, it did not impact me negatively in any way at all. I was very relieved to have the surgery. “Back in the day,” when I had my surgery, the thinking was to leave a tiny bit of thyroid tissue (rather than total thyroidectomy) with the thought of not needing to take thyroid replacement. This did work for me for multiple decades, but now I take a little synthroid. I had TED 6 decades after I have Graves’!!!!:mad: TED was very difficult. I don’t recall my TSI numbers anymore. I will as for them at the next lab draw.
For me, it is now difficult to separate being much older, and the reason for being tired. For the most part, I do what I want to do, travel, and walk at least a mile every day. My eyes, however, rule my life. They sting, they burn, they will not close (due to some very unsuccessful surgery ) and I am very sensitive to light But I can drive, I can read and wear sunglasses. My labs alway say I am a bit hyperhthyoid, regardless of the dose! I am on 112 mpg one day a week, and 100 mpg 6 days a week. I’d love to have more,but I developed atrial fibrillation, an the risk of stroke increases for me if I am hyper. Thing is, the only hyper part of me, are my labs. Not how I feel. Not sure this is helpful, but I have found this forum helpful beyond measure, just know there are other folks out there who understand!

[Liz1967]

#1184443

Not sure why you are on thyroid hormone when you still have a thyroid? I had a thyroidectomy and orbital radiation with steroids. My eye disease burned out within about six months after total thyroidectomy. I waited another eight months to be sure there were no changes. At that point, I had my first eye surgery, bilateral orbital decompressions. I am awaiting my last reconstructive eye surgery, repeat lid surgery. I feel totally normal without a thyroid. As my eye disease lasted only a year before burning out, and that was a very long year, I have to credit the TT for that as TED is usually active for a lot longer. My TSH stays around 1.6 on 88 mg levothyroxine.

[bllucas]

#1184444

Thank you so much for your insight. It is just nice to know other people understand what it is like to go through this disease. I actually became a member of this forum not long after I was diagnosed and although I never really posted much, I would read what others were posting and it was a great support hearing what others were doing/going through.

Thank you very much for replying:)

[AzGravesGuy]

#1184445

bllucas wrote:

I am so sick and tired of being sick and tired.

Hi Brenda,

I hesitated on my TT and it was a huge mistake. The time I wasted being sick could have been spent living life.

Since surgery, my life has come back, 110%. It took 2 years to rebuild and recover from the Graves’ damage but it was completely worth the wait. Now I am whole again…mind, body and spirit.

I wish the same for you and everyone else fighting this disease.

Rob

[LDubard]

#1184446

I am new to this forum as I was diagnosed with GD four months ago. I began taking Methimazole 10mg 2xs per day. I did very well on the meds for about 2 months but then became dizzy and broke out in hives. I am very frustrated because my Endo does not agree that the medicine is the culprit. He has taken me off the meds for 1 week now with hopes of convincing me that it’s not the medicine. My heart rate has elevated to 101 bpm, I am continuing to have the hives but less frequently, muscle pain, fatigue, and uncontrolled body temperature. The thought of being confrontational stresses me. I am not sure what to do.

[Kimberly]

#1184447

@ldubard – Hives can be a reaction to anti-thyroid medications, but in other cases, the skin reaction is actually caused by the hyperthyroidism itself and will resolve once thyroid levels are stabilized.

Of course, if you aren’t happy on the meds, it is *your* choice to pursue RAI or thyroidectomy. Just make sure that you do your research and understand the risks and benefits of all the options. The “Treatment Options” thread in the announcements section of the forum is a good place to start.

[Kimberly]

#1184448

@liz1967 & bllucas – Patients with Graves’ can still go hypo, even without RAI or thyroidectomy. I’ve been on replacement hormone for about 6 months now after 7 years on methimazole and then 1.5 years euthyroid with no meds.

In some cases, the antibodies that cause Graves’ can start *blocking* thyroid hormone production instead of stimulating too much thyroid hormone production. In other cases, patients actually have both Graves’ disease and Hashimoto’s thyroiditis.

Although I haven’t seen any formal research on this, I’ve read a few anecdotal stories about Armour causing flare-ups of hypER symptoms for Graves’ patients. So if you are one of those patients who doesn’t do well on T4-only therapy, you might talk to your doc about switching to Cytomel, which is a synthetic form of T3, to see if that makes a difference with your TSI numbers.

[Author]

Posts