Overactive to underactive following radioactive iodine treatment

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i was diagnosed with Graves' disease some 6 years ago, 3 years ago I I was given radioactive iodine. I am now underactive and have been signed back to my GP from the endocrinologist. However, They cannot get my medication right, the GP says I must stay at the lower end of normal but I feel so tired, have cramps in my legs, they feel like lead weights, I am constantly putting on weight yet eating less, I have random bruises mostly on my legs. All my life (I'm 54) I've had good energy levels, not buzzing but plenty of stamina, and although I've had to work at it  I've kept a good weight. My dose is 100 daily, my GP is not helpful in helping me feel better and obviously I don't won't to be too high again. I have been taking 125 on a weds and sun, my latest blood test still shows lower end of normal and I still feel rubbish. I'm going to try 125 mon, weds, fri and see what happens - does anyone else take their meds in this way?  Have also started to think I am intolerant to bread and a few other things and am seeing a kinesiology later this week to see if they can identify what. 

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  • Posted

    Hello, I also have Graves Disease and I also had the radioactive iodine treatment, something I now deeply regret, because like you, I cannot lose weight and now feel worse. My blood tests show I am at the lower end of normal, but I have had to be taken off all the Thyroid Medication because it was making me worse. My blood results were lower with the medication than without! If someone can explain that one to me I would be grateful.Like you i also feel I am intolerant to bread, my stomach just bloats. I am now on two replacement shakes and a salad for my evening meal, still no weight loss, but at least I am not gaining.   The consultant at my local hospital was less than useless. My doctor is now testing me for everything else to see why I am so tired all the time and I am now waiting to go for a sleep apnoea test. I am sure it not this, but my thyroid. I am now thinking about trying to find a private doctor who specialises in Graves Disease as I am so desperate to find out some answers to my problems. Good Luck seeing the kinesiology and I do hope you find a solution. 
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    • Posted

      If you react badly to thyroid hormone, or still don't feel well when the levels are in the top of the normal range, you may have adrenal insufficiency. This is more common in people with Hashimoto's or Graves disease because it can be caused by an autoimmune process like these two thyroid conditions. Having one autoimmune disease, especially of the thyroid, increases the chances of having autoimmunity elsewhere.

      If you do have adrenal insufficiency, this will result in tiredness, sleep problems, the inability to cope with stress, dizziness when standing up, immune problems, food and chemical intolerances, and can also cause pain and weakness within joints, muscles, and connective tissue. All of these symptoms are due to deficiencies in two hormones called aldosterone and cortisol, and this is always corrected before thyroid hormone is started when the condition is known. Your body can't cope with or use thyroid hormone properly without adequate adrenal hormones because the two glands function together.

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    • Posted

      Hello, Thank you for the information, I will ask my doctor if he will check this out for me. 
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  • Posted

    Hi, are you aware you can chop thyroxine tablets up? Have you thought about taking 112.5mcg daily? I found I was very sensitive to uncreases / decreases in thyroxine. So I increased / decreased by 6.25mcg (a quarter of a tablet) at a time every 2-3 days). Maybe this will help.
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  • Posted

    I also had RAI after having Graves. I've been Hypothyroid now for about over a year now. I first started out taking synthetic Levothyroxine. I felt horrible taking it for a few months. My problems only seemed to get worst. I researched and had my doctor do more bloodwork. My Endocrin Doc wasnt' keeping on top of my bloodwork and they let my Vitamin D and Iron get too too low.

    I got fed up and changed to a Holistic doctor. She prescribed me Armour thryoid meds (a dessicated thyroid mediction). Since taking it I felt so much more better as well as keeping on top of all the minerals in my bloodwork.

    I felt good for a few months but started to get joint pain again and some headaches. I started to noticed I was havin an Intolerance to gluten and lactose. After that, I decided to clean up my diet and avoided everything gluen, lactose, and soy. It's going on a few months since I started that and I have to say I feel like normal again. I don't really have any more problems.

    So my advice would be maybe try a different type of thryiod med if you're feeling this current one you're on isn't working for you. Some people's body can't not take  synthetic Levothryoine cause some can't just make T3 just from T4 only. Meds like Armour thyoid and other dessicated thyroid medictions have more then just T4, which helps the body alot easier.

    Also I would try and avoid everything gluten and lactose for a few months and see if that helps you feel better as well.

    Also make sure you cut out stress and check your blood sugar. Stress can cause the adrendals to over work, thus effecting your thyroids ability to work properily.

    Hope that helps. Hope you feel better.

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    • Posted

      Hi, I read with interest your reply to Horsehibbitt, Can I ask you where you found your Holistic Doctor?

       

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    • Posted

      Hi Mags,

      I had to research online Holistic Doctors in my area. Once I found a few, I called each one and asked if they specialized in Thyroid optimization. Sadly I only found like one that was very close that did thyroid optimization. I know some people have to travel far to get to a good one. But they're better then Endocrin doctors in my opinion.

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  • Posted

    You may want to discuss with your GP why they would prefer to keep you at the lower end of the normal range. If there is surviving thyroid tissue, they may be worried if they dose you too high and the thyroid becomes active again that it will result in hyperthyroidism, and keeping your levels lower will help guard against this.

    In any case, there's no reason you should have to live with this if you're not feeling as well as you could. Once you know why they won't dose you higher, you can discuss options to resolve this and then increase the dose when the risk is eliminated.

    Any increase in dosage usually takes at least 2 weeks for the body to adjust and blood levels to become stable, so it may take a few weeks after increasing the dosage before you know how you are reacting to the new dose. If taking more thyroxine doesn't seem to help, you may also want to discuss with your GP to add T3 or switch to dessicated thyroid that contains both T4 and T3. Some people are less responsive or non-responsive to T4 alone because it needs to be converted into T3 to work properly. Age and other factors can reduce conversion.

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