[zweisamkeit]

#1060759

This is my first post. I’ll give a little background… After my son was born and I nearly died in labor, I developed graves’.
I had a total thyroidectomy January 2015, one year after my diagnosis. My thyroid levels are finally homeostatic and yet I am still experiencing mental fog and spacing out, comparable to when my thyroid was overactive.

I don’t know the long term prognosis for total thyroidectomy with graves’ … Are there other side effects from the autoimmune aspect? I have a marked difference in my ability to function at work. I’ve tried everything. Feeling hopeless, frankly.

[Kimberly]

#1184607

Hello and welcome – hopefully, others who have had thyroidectomy will chime in here, but a couple of thoughts…

First, is your doctor looking at Free T4 and T3 in addition to TSH? Many docs will only use TSH following surgery, but if you are symptomatic, it makes sense to get the additional labs done.

If you’ve been experiencing up-and-down levels for the last couple of years, it could just be that your body is still healing. It would also make sense to discuss your symptoms with your primary care doc to rule out any other possible issues.

Finally, some patients report improvements using T3/T4 combination therapy, such as taking desiccated products like Armour or adding Cytomel to their existing T4 therapy. Not all doctors approve of combination therapy, and some Graves’ patients report that combination therapy brought back their old hypER symptoms, but if your quality of life is suffering, it’s at least worth a discussion with your provider.

I haven’t had thyroidectomy, and my memory is definitely not what it was pre-Graves’. I manage to get by though, by writing down everything and leaving reminders or setting alarms when needed!

[Liz1967]

#1184608

I had TT nearly three years ago and I feel totally normal, the same as I felt before Graves. I dose levothyroxine totally by TSH. Latest guidelines in patients without a thyroid is to keep TSH between 0.5 and 2.0 where the normal range is between 0.2 and 4.5. I get FT4 but ignore it. It stays between mid and top range. If you have your labs 2 hours after taking levothyroxine, your FT4 will be at highest value, later in day at lowest. It varies with when you take your dose as you arent making any hormone yourself. The few times I have had FT3 done, only before undergoing anesthesia for eye surgeries, it is in the low part of the range. I ignore the free Ts as long as they are somewhere inside the normal range. My TSH will vary between 1 and 2, but so would this value vary if you had a totally normal thyroid. Your body obviously requires more or less depending on many things, like time of year, illness, etc. levothyroxine has a long half life and can cover these changes. Be aware that things like Nexium, proton pump inhibitors, can affect absorption as can coffee.
As for the autoimmne aspect, anti thyroid antibodies attack your thyroid or your eye muscles, rarely skin. If they are not actively attacking these organs, they are just circulating in your blood like the antibodies you have for polio, influenza, whooping cough, etc. They do not attack synthroid, skeletal muscles, brain, liver, kidney, etc. They are anti Thyroid. Any symptoms you have are either from too much or too little replacement hormone or totally unrelated to Graves.
Once your levels are in the correct range, it takes two months or so for body to adjust and then you are good to go. You definitely can feel normal on thyroid replacement. Thyroid replacement is thyrod replacement, whether you have Graves, thyroid cancer or just a nonfunctioning thyroid. Hope this helps.

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