Over active thyroid several weeks on

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Hi guys,

So, its been several  weeks from my diagnosis of hyper-thyroidism -  to say this has taken over my life has been an understatement. Like so many of you I had lost tons of weight, had head aches, pins and needles in head, fainting, out of mind experiences and feeling like I wasnt "normal". My levels at the start were ST4 >100 and TSH switched off, I was put on carbimizole 40mg and proponol 80mg which stared to work quite quickly. My second bunch of results were (after 6 weeks) ST4 84.1 and TSH switched off. My third results again after 6 weeks were ST4  4.7 and TSH normal( 0.34), I had flipped to under active. As a result of these last results my endo took me off the beta blocker and introduced levothyroxine along with 40 carbimizole to "block and replace". The last 6 weeks have been tough. Im putting on weight quickly, am sore and taking muscle cramps constantly which are extremely painful. Its like a never ending road to get things stable. Thank goodness for this forum and support youve all given. Has anyone else fliped from over to under? and had meds blocked and relaced like this? Also, are these muscle cramps normal? Thanks xxx

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  • Posted

    Kathy, it's perfectly normal for the thryroid to become underactive if the meds are working.  Getting the medication properly adjusted is a lot of the problem, although I've never heard of block and replace before.  It does seem a little odd.   I'm sure you will start to feel more normal soon.  I would advise you to make sure you follow a healthy diet particularly avoiding anything containing aspartame. 
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  • Posted

    Hi Kathy, first thing to say is hang inn her it gets better, exactly thesame thing happened to me! I was very very hyper - levels were off the scale and caused all sorts of complications resulting in my being in hospital for nearly three weeks! BUT black and replace worked perfectly! My endo did have to tinker a bit to get my levels right and I did get quite bad double vision and felt a bit roughly but as I say it got better oddly enough after about 6 weeks! I did also have muscle cramps but probably not as bad as yours -they sound bad! Not sure if this post will help but your symptoms sound very similar to mine going from hyper to hypo while trying together the levels correct! It does get better Kathy! Good luck 

    neil

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  • Posted

    Kathy apologies for all they typos - ipad is auto correcting everything and making me look like an idiot! Soz😀
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  • Posted

    Hi Kathy

    I don't know if different people react differently to anti thyroid meds but I started on carbimazole but was allergic to it so I swapped to propylthiouracil. I have been on this for 4 years and my thyroid is showing no signs that it will burn out or stop being hyper.

    I too have terrible body pain (muscle and joints) with very low Vitamin D. Regardless of my thyroid levels being kept within normal with the medication, I still have hyperthyroid symptoms shaking, feeling faint, breathless. I am now allergic to perfumes, pesticides and cleaning products. Doctors say there must be an underlying reason but have never found what. I tested positive to porphyria last year and positive to Lyme disease this year but when they re-ran the tests months later the results were negative. The thyroid seems to be a very weird thing and when it goes wrong it seems to take over your life. I haven't been able to drive for 6.5 years as I get panic and blurred distorted vision. I thought I would be cured on the thyroid meds but it hasn't made any difference at all.

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  • Posted

    Thanks for all your replies everyone! Jeanette, its so true, the thyroid is a weird thing, so many complications from one wee gland. Int it just good to know that someone else is experiencing the same as you. A person without thyroid problems could never understand the range of symptoms. Neil, glad the block and replace is working for you, I too have vision problems that vary day to day. Sue, the healthy diet stars back today! Thanks so much for the replies and Ill keep you updated on next results.
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  • Posted

    I have heard of others on this Board who have been put on a Block and Replace regimen, so in traditional medicine it is an accepted form of treatment.  From other patient boards, I have learned that hyperthyroid patients have the best recovery if they become empowered. That means they have to learn all they can about their disease, its causes and the best way to treat it while working with their doctors.  This is because all physicians do not know about or recommend other things that could be very helpful in restoring normal function.  The accepted standard of care treatment by doctors is 1) giving antithyroid medications or as in your case, a high dose of antithyroid meds and then giving thyroid hormone replacement medication to replace it; 2) suggesting that the thyroid be radiated and when you become hypoactive replacing thyroid hormone with medications; and 3)  surgical removal of all or part of the thyroid gland and giving thyroid hormone replacement.  The problem is that most patients do not feel normal with any of these treatments even if they are successful in reversing the excess thyroid hormone produced.  Hyperthyroidism can be caused by an autoimmune disease like Graves or Hashimoto's or both at the same time or can be due to thyroid inflammation due to a viral illness in which case it would be transient.  There is a new branch of Medicine that treats causes of illness whereas most traditionally trained doctors treat only symptoms.  It believes all autoimmune illnesses are caused by environmental toxins such as mercury poisoning and/or diet and lifestyle and stress and that with the right treatment they can be reversed by taking the right supplements and changing the diet and lifestyle.  So to begin with, an empowered patient always asks for a paper copy of their blood tests.  For hyperthyroidism, the usual tests are TSH, Free T3 and Free T4 routinely done, as well as blood tests for autoimmune antibodies done at least once.  These antibodies attack the thyroid and cause it to overproduce or underproduce thyroid hormone.  If on a thyroid medication blocker like carbimazole, my doc also always orders liver function tests (AST & ALT) and complete blood counts as these medications are known to cause liver abnormalities and blood count abnormalities, especially at high doses.  Then adding supplements such as Acetyl-L-Carnitine if you have Graves, or regular L-Carnitine if you have Hashimoto's or a combination of both illnesses (helps with muscle problems as hyperthyroid patients lose carnitine, an amino acid from their muscles, vitamin D, selenium (especially helps those with eye problems).  I also take Probiotics, Co-Q10, Omega 3 fish oil and magnesium.  Then eat a healthy diet of fruits, vegetables and proteins, avoiding aspartame, sugar and processed foods.  Some patients on other Graves Boards have gone into remission taking totally natural products like Bugleweed, Melissa and Motherwort and the above mentioned supplements, as well as making the above changes in their diets.  What really helped my Graves blood test to normalize was the Acetyl-L-Carnitine.  The carnitines especially affect your thyroid blood tests.  However,  since you are on both blocking antithryoid meds and replacement thyroid meds, Acetyl-L-Carnitine will also affect your blood thyroid levels dramatically so  I would not take it on your present Block and Replace regimen. Regular L-Carntiine however, will not affect your blood levels as dramatically as the Acetyl form does, especially at a low dose of 500 to 1,000 mg.  If it were me, I would get a second medical opinion to see if a Block and Replace regimen or a Block regimen only is the best treatment, or see a Naturopath.  For myself, I was only put on an antithyroid drug so adding Acetyl-L-Carnitine especially helped to normalize my thyroid blood tests as well as lower my Graves antibodies and therefore I was able to lower my methimazole medication.  There are a lot of books and websites with information about thyroid disease that your doctor will not know so learn as much as you can and be proactive in your care.
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  • Posted

    Oh dear Kathy. I am sorry to say that overactive thyroid issues are trully horrendous. I will probably post my full story but suffice to say hang in there. I nearly died a couple of times from thyroid storm and eventually was diagnosed with severe Graves.

    That was 2 years ago and I was put on B+R regime which has worked very well. I still suffered muscle pains cramps and burning. As I had severe myopathy I had to use 2 walking sticks then one and now I only use it sparingly if I know I have a long or busy day on my feet.

    Look after your diet, take natural supplements, avoid stress at all cost, tey to sleep when your body demands it and as alewady mentioned never ever go near aspartame. It is highly toxic and a known cause of hyperthyroidism.

    Good luck to you and perhaps let us know how you are getting on"

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  • Posted

    Thank you Linda and Zizinb for your replies, your both are absolutley right, I need to educate myself much more on every aspect of hyperthyroidism, at the minute I am not knowledgeable enough and really have not had enough info from my endo either.

    I actually had a liver test funtion before i was diagnosed and it was low, but never made aware with the connection between the two. 

    Over the next few weeks I will study the forum and sites, and I defo will get a second opinion on meds. Thank you again everyone for taking time out to offer your advice and share your story with me. Getting bloods done tomorrow, will ask for screening for  autoimmune antibodies, liver function and blood count.

    Thank you x

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