Please help...feel horrible! Graves

Hi Kdw, Your blood numbers look like not at Graves yet... but the symptoms do sound like hyper. Maybe you should explain how you have "been diagnosed with Graves" first. Also, give more info on your 20 years hypo history if possible. It looks like you still "have your thyroid and it's in good condition". So what's your thyroid med history with hypo for the past 20 years?

Basically thyroid issues started after I had my last child. Doctor ran blood work and it came by that my thyroid was underactive. I was put on Levothyroxine and stayed on it up until this past June. I started on 50mg and increased to 75 mg a few years ago. The 75 mg seemed to be fine. Then in June I started having heart palpitations, heat intolerance, fatigue, and severe anxiety. Drs ran blood work and it showed I was now overactive. I have been off Levothyroxine for about 2 months. I now have a Endocrinologist who is following me. My Graves diagnose was made by the Endo reviewing my uptake results and calling me on the phone. So here I am feeling mentally and physically drained. I have posted my up take results below.

Impression

IMPRESSION:

Heterogeneous distribution of activity throughout the thyroid gland without dominant nodule with mildly increased 24 hour uptake, suggestive of Graves' disease

Narrative

HISTORY: Thyrotoxicosis, unspecified without thyrotoxic crisis or storm; Hyperthyroidism

TECHNIQUE: Following the oral administration of 210 uCi of I-123, thyroid scan and calculation of 24 hour uptake were performed.

COMPARISON: There is no prior study available for comparison.

FINDINGS:

The thyroid gland is normal in size. There is heterogeneous distribution of activity throughout the thyroid gland with no evidence of focal hot or cold nodules. There is mildly increased 24 hour uptake of 35.2%

Wow! that's quite a thyroid history you have.  It seems most doctors do no investigations for hypothyroidism and just place patients on thyroid hormone replacement.  I was at a lecture once and the lecturer was an Endocrinologist who had just set up his practice and when I asked him that question, he said he always looks for the cause of hypo in his patients but I see that most docs don't.  So one of the most frequent causes of hypo is Hashimoto's thyroiditis.  In Hashi's, the autoimmune antibodies attack the thyroid gland directly.  Hashimoto patients can initially become hyper but usually then become hypo when the disease burns itself out.  In Graves, the antibodies attack the TSH receptors.  There are specific antibody tests for the two autoimmune thyroid diseases. For Graves the tests are TSI or TRAb.  For Hashimoto's the test is TGAb.  Anti-TPO is a measurement of the inflammation of the gland seen most prominently with Hashimoto's but can also be seen with Graves so that should be measured as well.  If you have palpitations, you should be on a beta blocker like Propranolol.  I was given it before my diagnosis was confirmed and I only used it when needed (which irked the Endocrinologist).  I have since used it occasionally at a very low dose but it does manage that symptom well.  Vitamin D3 is very important for thyroid functioning.  I have taken 1,000 IU daily but also have taken up to 5,000 IU per day.  You should get vitamin D measured, magnesium and Total Carnitine and Free Carnitine levels measured.  Carnitine is an amino acid normally found in the body and many thyroid patients become deficient in this.  I was because it is mostly found in meat and I am not much of a meat eater.  Even if you are a meat eater, hyperthyroidism depletes your body's stores of this and other vitamins and minerals.   It was the Carnitines that helped me get into remission with my Graves disease, especially acetyl-L-carnitine which helped my TSH rise.  The Regular L-Carnitine is very useful in managing Hashimoto's and other thyroid diseases.  I read a medical research article on the use of Regular L-Carnitine in hyperthyroid patients which prompted me to try it.  The Acetyl-L-Carnitine, however, requires caution and judicious use.  Many have taken it and not kept close enough monitoring of their values because you need more frequent blood work when you are on it in order to avoid going hypo.  So to summarize, you need to know the underlying cause of your disease and do this by antibody testing for both the autoimmune causes, and testing for the levels I mentioned above.  Also take some low dose Propranolol or other beta blocker and avoid stress.  Please keep us posted on your progress.  If you have Hashi's at all, both medications, i.e. anti-thyroid and thyroid replacement will be too strong for you and you will swing back and forth.  From other Hashi patients posting on this Board, they seem to do better controlling their values with Regular L-Carnitine.  But you need a definitive diagnosis before you try something like that.