Please help...feel horrible! Graves

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kdw12
2

TSH .003 (.35-5.50) T4 free 1.19 (.80-1.80) T3 free 419.6 (230.0-420.0) been diagnosed with Graves. Had hypothyroidism for 20 years. In June started with hyper symptoms. Have a a ultrasound that showed a nodule and slight inflamed thyroid. Uptake test showed no hot or cold nodules but a heterogeneous thyroid. I have just started 10mg methimazole daily. Have heart pounding still at times, low leg cramps and stiffness. And worst symptom is debilitating fatigue. Feel like I am hypo/hyper at the same time if that is possible. Any advice or ideas would be greatly appreciated. Should I be checked for vitamin deficiencies, is something else wrong? Feel like I am loosing my mind. Just HATE the way I feel. I do take multi vitamin, vitamin d, B12, and calcium. Thank you

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12 Replies

  • Posted

    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?

  • kdw12
    2

    Posted

    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%

    • Posted

      Well expressed info, kdw. So your endo confirmed your GD diagnose with the suggestive of GD from the uptake scan? New questions: did your doctor mention the cause of hypo 20 years ago? Was/is any test done on the related antibodies for Hashi and GD? It sounds like the hyper symptoms hit you very abruptly. What do you think the trigger was when hyper symptoms hit in June? Could it be a stressful event or oppressing incident?  Do not panic or be upset for I (and many other GD patients here) also was down drained when my endo announced the GD sentence on me! Now how long have you started taking MM? Do you feel any change for good? Ok, I read your new post while responding to your previous one. So I would add this: what makes you think you are also feeling underactive? Is it fatigue, downcast, tired? If you have lost weight obviously, you are hyper for sure. Sometimes it may be confusing to feel under- or over-active in the situation. So be a bit patient and don't make conclusion too soon. Let's see what next blood numbers be after taking MM. I hope other more experienced members here can chime in with more helpful and insightful advice.

    • Posted

      Mike61308, There were two very stressful events that took place around the time my symptoms started. So far being on Methimazole has made me feel somewhat calmer with my anxiety. All other symptoms are still there. As far as feeling underactive, I have alot of hypo symptoms as well.....severe fatigue, constipation, dry skin, depression etc. See what I mean.....feel like I am teeter tottering between both......just want to feel like a normal human being again. But through the help and support of this forum and people like you and others I think I will get there.
  • kdw12
    2

    Posted

    Sorry just wanted to add again that I also am feeling that besides the heart palpitations, I am feeling underactive as well. I have only lost about 3 lbs, my skin is dry, my hair is dry, and I am severely tired all the time. It really is messing up my quality of life. Any suggestions??
    • danR
      6 kdw12

      Posted

      Regarding your leg cramps, I would recommend applying Magnesium oil to your legs. Mg is absorbed very well through the skin and has helped me in the past.
    • kdw12
      2 danR

      Posted

      Thank you for that advice about the magnesium oil. Did you as well have leg weakness and pain?
    • danR
      6 kdw12

      Posted

      Hi kdw12, I found this info:

      4 ml of Magnesium Oil (31%) corresponds to a dosage of 412 mg pure Magnesium.

      I used to apply Mg oil to my calves because I had muscle cramps. My dosage was 1ml at a time up to 3 times a day.

      Mg is similar to Calcium. Any surplus is excreted via the kidneys. The recommended daily allowance is about 300 - 400 mg. So your daily allowance is already covered by the Mg you are taking orally.

    • danR
      6 kdw12

      Posted

      Forgot to add. I had extreme muscle pain and weakness due to muscle wasting while being overtly hyperthyroid.
  • Posted

    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.

    • Posted

      Thank you so much linda187 that was alot of interesting info. I am going to tell my Endo. About having the antibodies checked so I know for sure what this is. I do now take magnesium 400mg ( was given initially for migraine prevention) will it be ok to add extra to that, also take B12 liquid once per day, calcium 600 mg, vitamin d 2000mg daily. And a multi vitamin. Should I add to that right now or keep it as is until I see the doctor. I also have some other concerns and some severe stressers that I need help with and I would love to private message you if that would be possible? I literally feel so alone in this. Thank God for this site.
    • Posted

      Perhaps Dan could comment on the question of your Magnesium.  I would think doing what he suggested would be fine to do even if you are taking oral Magnesium.  The Magnesium oil would be absorbed through your skin and not your stomach.  I think you need to find out your diagnosis as soon as you can and even if your doc says it isn't important, you can tell him it is important for YOU to know what's causing your thyroid problem.  Yes you can email me privately.

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