Had my thyroid removed when in October of last year- had a huge goiter which was obstructing my breathing, long story short had one side of thyroid out 28 years ago and the other side in October. Apparently I am suffering from an autoimmune thyroid disease - once the thyroid was taken out and I took my thyroxin I thought symptoms would go away ie aching muscles, fatique getting hot and cold when others are not- but they have returned.
I asked my specialist but to be honest he is a little arrogant and does not answer your questions, needless to say not returning to him will get my gp to monitor t4 levels -
Apparently when I has my last blood tests all the levels were ok, find this hard to believe as I did not feel that good - a little confused to say the least
The fact that you didn't get better, once you started on medication, indicates that you may be under medicated. Can you post your latest thyroid labs? You should have a minimum of TSH, Free T3 and Free T4 done each time you have labs. You said "Apparently I am suffering from an autoimmune thyroid disease" - this can be confirmed with some simple blood tests: Thyroid Stimulating Immunoglobulin (TSI) to check for Graves Disease, which is usually associated with being hyper; Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab) to confirm/rule out Hashimoto's Thyroiditis; these are usually associated with being hypo, but it's not unusual for patients to swing back and forth with either disease.
Please post your most recent labs, along with the reference ranges, which vary from lab to lab, so must come from your own report. If you are in the US, your doctor is obligated to provide you a copy upon request, if he didn't do so.
Once you post your actual levels, members can comment more fully on your specific situation.
I had the tests for autoimmune disease before they took out my thyroid and I did have it but I thought once the thyroid was removed it would cure the autoimmune disease, have I got this wrong. I am in Australia. I had the hyper one but gained weight which meant I was going between the two -
I will post my next lot of test results which will be done in a few weeks.
Thankyou for responding good to know you can communicate with someone that understands what you are going through, the frustration is worse, this comes I am sure from not understanding what is going on with your body. Just want to feel well and be able to keep up with daily life and family.
Autoimmune disease is not curable; once you have an autoimmune disease, you have it for life. The most you can hope for is remission. You had Graves disease and your thyroid was removed because it produced too much hormones; however, removal of the thyroid means you have no hormones of your own, which is why you were put on the thyroxine - to replace what you could no longer produce.
Most likely, the reason you aren't getting well is because you are either under medicated or you aren't converting the T4 (thyroxine) to the biologically active T3 hormone.
As gimel suggested, if you post your previous test results and reference ranges, along with the date they were done, we can see where you were at that time, which could give us an idea of what's going on now.
I will try and get hold of the last lot of test results which were done in january of this year and get them to you -
how do you convert the T4 to biologically active t3 hormone, I have been doing a bit of reading on this and apparently this is a big complaint with a lot of people, their tests come back normal being the T4 but they still do not feel well, is this why?
You said I HAD Graves disease, does this mean I no longer have it once the thyroid was removed or when you said I have the autoimmune disease for life that is the Graves Disease.. sorry hope that is not too confusing - but have to say your explanation is the first time it has been put to me in a way I understand. I really appreciate that.
many thanks pam
I'm sorry, my previous answer might have been confusing......... Once you have an autoimmune disease, you have it for life; it does not go away, though it may go into remission.
Free T4 is converted to T3, mostly in the liver, though the conversion takes place in other parts of the body as well, plus the thyroid produces some T3. Some of us do not convert properly, therefore have to add a source of T3 to our regimen. That's why testing for Free T3 is so important.
Please note that there's a big difference between T4 or T3 and FREE T4 or FREE T3; we emphasize the Free's because total doesn't tell us what we need to know.
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