I was diagnosed with Graves disease and thyroid eye disease about 2 years ago. At the time, the TPO antibodies  were around 1200, when the range is 0 - 34. Since diagnosis, they have steadily increased.

I started taking LDN in April of this year and had high hopes that the antibody count of 2500+ would go down. However, when I was tested in July they were over 3000. I told my doctor I wanted to stay on LDN awhile longer and he agreed.

I have a couple of questions. About two weeks after I started taking LDN, I began to feel better and had more energy. Then, during May and early June I experienced some extremely stressful situations. Could it be that the stress caused me to slide back into chronic fatigue and cause the antibodies to skyrocket like they did? If I now have the stress under control...  can I expect that LDN will work better now?

My next question is just trying to understand this illness. I've read so much I end up with my mind scattered and give up!  If it is thyroid antibodies that are so high, why does my thyroid seem perfectly calm now? It's no longer swollen and my doctor has cut the antithyroid drug way back.

OK, now I have a third question (bear with me please!) If the problem is thyroid antibodies, why is my overall immune system so totally screwed up? I'm chronically fatigued and seem to catch every little bug around.

Any insight will be appreciated!

brizmom

Hi Briz,

I think I would have to preface my reply with this: no one knows what LDN does in thyroid autoimmune disease. There have been no clinical trials to assess the validity of LDN in thyroid disease. However, one can extrapolate from its successful use in other autoimmune diseases that it has the potential to mitigate the production of autoantibodies. You can take a look at the Survey results here at this site to see how others who have autoimmune thyroid disease are doing on LDN.

Some people who are taking LDN do see a lowering of antibodies (including TPOAb). It's difficult to know whether LDN has anything to do with a rise in your TPOAb or not -- it should have the opposite effect. LDN is supposed to modulate lymphocyte and cytokine imbalances and thus reduce autoantibodies.

Your antibody levels could also be due to stress, improper medication dosing (using ATDs), improper thyroid hormone levels, diet, and a whole host of other things. Increases in antibody production can cause fatigue, but so can endocrine imbalances (deficiency in thyroid hormone or even excess thyroid hormone).

I would want to know what your Free T3, Free T4 and TSH have been from the time you started LDN to now and what kind of ATD changes you've gone through as well. By the way, one can have a calm thyroid gland or silent thyroiditis while still in the throes of autoimmunity, i.e. antibody activity and infiltrative lymphocytes.

As for your last question, the problem lies with an immune system which produces and instructs antibodies to attack TSH-Receptors (in Graves' disease). Flu-like symptoms are actually from the immune system reacting to foreign invaders, but in autoimmune disease, the immune system is producing excess antibodies programmed to attack healthy tissue, making us feel unwell and often compromising our quality of life. The long-term goal is to heal the immune system while stabilizing thyroid hormone levels, and so it's understandable why you started LDN or are willing to be an explorer to help yourself.

BTW, you can ask Elaine what she thinks at her Q&A.

Valerie

Hi Brizmom,

Welcome to AHSTA.

Have you ever had your TSI tested its a definitive test for Graves disease.

I've been taking LDN 3 mg daily now for just over 6 months, I aslo felt my energy levels increase.

One really significant improvement was with my eyes disease have you seen an improvements in that?

I can't really add anymore than Val has, only that it would be a good idea to put your thyroid lab results up from back to starting LDN.

I do think that stress plays a big part, so as z100 says if you can reduce your stress levels you may see further improvement.

Best wishes

Lolly