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Thyroid Disorders Community
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Graves- Hyper to Hypo

Hi, I'm hoping you can help me answer a few questions. I have read every blog/post over the past two months about thyroid conditions- trying to figure out what is wrong with me.

I was diagnosed with Grave Disease Nov 2013 high T3 9.7, T4 2.9 and TSH <0.01. I was on methemazole for a year which brought my levels down quite a bit. I had my eyes checked by a opthamologist that specializes in Graves patients. Determined I had a slight case of graves eye disease in my left eye- slightly bulging not noticable to the naked eye- non active state- no swelling. Did follow up every 6 weeks and no change in eyes what so ever. Was the same measurements each time.

Jan of this year-  did the RAI treatment which shot my levels way up one month after, in Feb 2015:
T3 free 13.8 range 2.0-4.4
T4 free 6.70 range 0.82-1.77
T4 Total 19.9 range 4.5-12.0
TSH <0.006 range 0.450-4.500

The only symptoms I had was sweating and loosing weight again. No bulging of the eyes, no swelling, just my normal 'hyper" symptoms.

I was then put back on methemazole for 4-6 weeks to bring the levels down. This is when the nightmare began:

About a month of being on methemazole- I started sleeping more, becoming very constipated, and the worst- my face and eyes started to look very different to me- along with the pressure in my eyes/face area.  I thought I had a really bad sinus infection since I have really bad allergies this year.

So one early afternoon while at work- I could't stand it any longer- I went through the ER because I had blurred vision, pressure in my face and eyes, etc. After perfroming a CT scan they stated I had sinusitis and prescribe antibiotics and inflammation medication. I thought... that's what it was all along!

A week later it was time for me to do blood work for my thyroid:

March 2015
T3 Free 1.3 range 2.0-4.4
T4 Free 0.24 range 0.82-1.77
TSH 38.360 range 0.450-4.500

My endo Doctor calls to tell me to get off the methemazole and she wanted to test me again in about 3 weeks:
T3 Free 1.4 range 2.0-4.4
T4 Free 0.29 range 0.82-1.77
T4 Total 1.4 range 4.5-12.0
TSH 42.310 range 0.450-4.500

By now, my face and eyes are completely swollen, my hands, fingers and toes as well. Worse, I have really bad blurred vision that effects my work and I can hardly keep my eyes up. I thought- did my sinus infection return and if so why and how?!?!?

This is where the researching began!!! By now, I have missed a few days of work, I didnt understand what was going on- did I need another round of antibiotics.. WHAT?Hi, I'm hoping you can help me answer a few questions. I have read every blog/post over the past two months about thyroid conditions- trying to figre out what is wrong with me.

I was diagnosed with Grave Disease Nov 2013 high T3 9.7, T4 2.9 and TSH <0.01. I was on methemazole for a year which brought my levels down quite a bit. I had my eyes checked by a opthamologist that specializes in Graves patients. Determined I had a slight case of graves eye disease in my left eye- slightly bulging not noticable tothe naked eye- non active state- no swelling. Did follow up every 6 weeks and no change in eyes what so ever.

Jan of this year-  did the RAI treatment which shot my levels way up one month after, in Feb 2015:
T3 free 13.8 range 2.0-4.4
T4 free 6.70 range 0.82-1.77
T4 Total 19.9 range 4.5-12.0
TSH <0.006 range 0.450-4.500

The only symptoms I had was sweating and loosing weight again. No bulging of the eyes, no swelling, etc.

I was then put back on methemazole for 4-6 weeks to bring the levels down. This is when the nightmare began: about a month of being on methemazole- I started sleeping more, not having a bowl movement, and the worst- my face and eyes started to swell. I thought I had a really bad sinus infection since I have really bad allergies.

I went through the ER because I had blurred vision, pressure in my face and eyes, etc. After perfroming a CT scan they stated I had sinusitis and prescribe antibiotics and inflammation meds. A week later it was time for me to do blood work for my thyroid.

March
T3 Free 1.3 range 2.0-4.4
T4 Free 0.24 range 0.82-1.77
TSH 38.360 range 0.450-4.500

Doctor calls and tell's me to get off the methemazole and she wanted to tet again in 3 weeks
T3 Free 1.4 range 2.0-4.4
T4 Free 0.29 range 0.82-1.77
T4 Total 1.4 range 4.5-12.0
TSH 42.310 range 0.450-4.500

By now, my face and eyes are completely swollen, my hand, fingers and toes as well. Worse, I have really bad blurred vision that effects my work and I can hardly keep my eyes up.

This is where the research began- I thought I needed another round of antibiotics yet I also thought it was strange since... after thinking long and hard... I had allergies (seasonal) and very mild sinus issues but since when in my life have I ever needed antibiotics to clear it up! Allegra for allergy season and I'm fine. Furthermore... my face never swelled!!

I took an entire weekend researching and after clicking and clicking- came across hypo symptoms and different blogs with stories.

Now... I knew my doctor was calling any day now- as it only took a couple of days to get the labs back!

The Doctor's nurse calls to let me know that my levels are still low and she wanted to put me on levothyroxine. By this time I have educated myself on my symptoms, different medications, etc.

What I said to the nurse... I didn't think a T4 treatment would help me in the long run. That I didn't want to be in a "lab-rat" stage of testing and testing to see what work and continuing to be ill- I would feel more comfortable treating my T3 and T4 with a natural med like Armour- especially since I don't have a thyroid at all! She paused and then stated she will tell the doctor my concerns and call me back!

After 3 days- she called back and prescribed Armour!! I started taking 60mg on Wednesday April 29th so I have been on it a full week. Now, I am normally up at 4:30 every morning  so this is when I take the full pill... sublingually. I haven't quite understood how you guys split the doses yet!

I had an eye appointment Monday May 4th and again my eyes are at the same measurements, not bulging no change from when I first started to see him in 2014. Just the severe swelling of the upper lids and he's hoping this doesnt effect anything and it goes down now that I'm actually on medication.

In less than three days I could tell the difference in my energy level and just this past Tuesday May 5th have I seen a slight difference in my face. The swelling in my eyes are going down... just a bit.

I do know that I don't have TED just severely hypo!!

My questions are:

Did your eyes go back to normal normal or did any of you have excessive skin from them being so swollen?

Did your blurred vision go away?

At what Armour dose does the swelling completely go away or is that just according to my own body's increases?

In six weeks when I retest- what dose should she be putting me on after the 60mg? Do you suggest I start splitting when I increase.

Should I be getting tested for anything else?

At what levels should I be at to make sure I NEVER get so severely HYPO state again? I know upper end but having Graves- what would be upper end for me?

Is there anything else you can tell me about this disease that I may not have come across that can help me for the long haul??

Looks like I'm educating my doctor as we go- and it seems she is willing to work with me, since she did prescribe the Armour.


Looks like I'm educating my doctor as we go- and it seems she is willing to work with me, since she did prescribe the Armour.

Thank you in advance and sorry for such a long post!
2 Responses
649848 tn?1534633700
COMMUNITY LEADER
I don't have Graves Disease, but have been down the severely hypo road, and I did have the puffy face/eyes.  That was the first symptom that went away when I started thyroid hormone replacement and I hadn't even know it was thyroid related... I do have some skin there, below my eyes, but then I'm 65 yrs old, too, so I have a few wrinkles all over...

As to what dosages you should be on, when - that depends entirely on how your body reacts to the medication.

Most of on a T3 medication, whether it be Armour, another desiccated hormone or a synthetic hormone find it works better to split the dosage because T3 is fast acting and doesn't stay in your system very long, so it wears off after a few hours.  By splitting the dosage, you keep your level more stable over the course, of the day.

Again, the levels you need to be at in order not to go hypo, depend on your body, alone... Rule of thumb (where most of us tend to feel best) is to keep FT4 around mid range and FT3 in the upper half to upper third of its range.

If you're sure you don't have TED, there would be every reason to believe your eye sight would return to normal, but that's something you'd have to discuss with your eye doctor.

There are probably a lot of things we can tell you, however, we don't what sites you've studied, so we don't know what information you found or didn't find.  You'll just have to ask your questions and we'll answer them.  Now that you've had RAI and have flipped to hypo, Graves is probably not your biggest concern.
Avatar universal
Thank you Barb135 this helps a lot! So depending on where my levels are in 6 weeks and how I feel is how she should base my increase/dose!

I got it!!!

Thanks again
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649848 tn?1534633700
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