I've had a overactive thyroid for 2 years and I'm fed up, any advice?

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hi there I've had a overactive thyroid for over 2 years. My symptoms were hot flushes, shakes, weightless and general hyperactivity. Since being treated for this I feel that I've never actually had that moment we're I thought I feel better. It's been a constant battle with the meds, I've never really been stable. However over the last couple of months I feel that my symptoms have completely changed I'm cold all the time I'm gaining weight and the tie redness I feel on a daily basis is unbareable. I recently had my bloods done and I'm overactive at the moment, the doctor has advised me to take the same dosage and exercise for fatigue! I really feel as if no one understands I'm 26 I'm a full time mum studying and I can't cope with these urges to constantly sleep anymore it's making me depressed. Does anyone else feel like this or have some advice for me please because right now I'm desperate.

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    I have no advices. But I know the suffering. I had Tapazole for around 22 days and became allergy to it. I stop the med 6 days ago (still itching). Since stopping the med, I am getting weaker and weaker. Right today, I am trembling more and having more difficulty to walk. Yesterday, my Endo said I am too hyper that requied high doses of PTU which will damage my liver. So insisted my taking RAI. I refused. Now I am on my own, getting worse. Don't know what to do. I am taking some kinds of supplement, but I don't know if it is not working, or not taking it long enough yet.
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    Ask your doctor about depression.  Those symptoms may or may not be depression but just having them is probably making you depressed.  See about the possibility of taking Wellbutrin.  It helped many of the same symptoms for me:  fatigue, tiredness, weight gain, even the sensitivity to the cold.

    Do you get copies of your blood reports?  Try to do it if you don't already, then you can share where you're at better.

    Another thing that may help, and probably won't hurt, is Acetyl-L-Carnitine.  Just be sure to take only a moderate amount, probably 500 mg 2X daily.

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  • Posted

    Did you get the actual results from your blood tests, as it would be interesting to see what they say as it does sound like are a bit hyp now.  I have had a similar problem with the weight gain.  My readings are now in range and I feel fine in myself but I cannot stop gaining weight.  I am now eating next to nothing to try and get my weight down, but at least I do not feel ill anymore.

     

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  • Posted

    thanks for the replies people, it's reassuring that I'm not the only one out there suffering like this. No I don't get my reports but it's something I will start asking for. I'm at the point were I think it will be better to opt for surgery. 
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  • Posted

    Jessica if you think your problems will be over if you have surgery or RAI as most Endos recommend, I can tell you I hear from many patients on Graves and Hyperthyroidism Boards that will tell you they feel worse.  One lady felt so bad she has made a documentary movie about her experience to teach others to research their condition and become emowered to act in their best interests.  I have had Graves disease since 2007 and was able to get my FT3 and FT4 in the middle to upper part of the normal range immediately upon taking 10 mg of methimazole (Carbimazole if you are in England).  But my TSH remained at less than 0.001 for 2 years until I did my research and found an article in a medical journal about the benefits of hyperthyroid patients taking Carnitine supplements.  Carnitine is an amino acid that is normally found in the body but gets depleted from muscles through urination in hyperthyroid patients.  I believe that hyperthyroid patients lose a lot of vitamins, minerals and amino acids from their bodies due to this disease and replacing these lost factors helps us in our recovery.  I was tested for Carnitine, vitamin D and magnesium and have been found to be deficient in all of them.  Next year I want to get a full panel of vitamin testing done by my naturopath.  Some patients on other Boards are getting better strictly by changing their diets and supplements alone.  So do your research and look into the benefits of certain supplements along with your doc's medical treatments. 
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    Hello Jessica.  I probably shouldn't give advice because I got just about everything wrong with my bout with an overactive thyroid, but I have learnt some lessons that might help, so here goes.

    My biggest mistake was to believe doctors too readily.  I had an excellent GP since 1983, but surprisingly he had never had a patient with a thyroid problem.  He was largely flying blind, too, and the endocrinologist I was referred to went by the book, so I tended to get the party line on managing a Graves' disease patient conservatively. I should have been more assertive about some simple things such as feeling terrible when the lab results suggested I should be feeling great.  How you feel with GD often actually has a cause other than too much or too little sleep or food or exercise - I was getting plenty of all those btw, and some of the advice I was given was just a bit too glib.Should have challenged it.

    The other thing I should have dug my heels in over was monitoring after treatment with radioiodine 131.  My reaction was slow but it did eventually work.  Because I was only having monthly follow-up tests, my reaction was not noticed in time, and I became seriously hypothyroid because the replacement thyroxine was started late.  It has left me with a big weight problem that seems almost impossible to budge.  Whatever treatment you have, make sure you get plenty of follow up to monitor its effectiveness.  I eventually bullied my GP into weekly tests after starting the replacement therapy, and we were both surprised by how unpredictable my response to the therapy was; fast one week, slow the next.  I graphed the results and it looks like the edge of a saw.

    I also asked about family experience too late.  Once I started making inquiries, I discovered a remarkably strong family tendency to develop Graves' disease.  My grandmother had it and died from a 'thyroid storm' in the 1950's.  My mother and all her sisters had it and all had their thyroids removed over the years; the youngest at 13 for her op.  We don't know if her brothers were affected because two of them died in WW2, but the surviving one seemed likely to have been, and many of the mysteries about his poor health, and solitary and unhappy life seem to fall into place when you include GD in the mix. My family's experience proved to be a valuable resource - but I still got into trouble.

    Find a doctor experienced with thyroid patients and who is ready to talk realistically about his/her experience and results.  Interview them.  It's probably the most important decision you are going to make this year. I reluctantly recently  changed my GP to one who really understands thyroid patients, and she is starting to make a difference to my experience and has made some quite small changes that have had big effects.  Because she embraces alternative therapies and takes a holistic view of my health, not just my zapped thyroid, she has tweaked a few things unrelated to the thyroid, and when I saw her today, I realised that I am actually feeling better. Instead of sleeping through my vacation that starts next week, as I did in 2011, 2012 etc, etc, I am planning some activities. Nice change for me and my family.

    Take it easy and be kind to yourself.  WIth two children, you have big responsibilities and stresses. If you are not feeling well, that is important data that ranks up there with your lab results.  Don't be fobbed off.  Feeling terrible because of the hot flushes, palpitations, sweating, irritability, and all the rest, does take a toll and make it difficult to cope with even small things.  Your doctor, family and friends need to know this.  My family tended to fob me off by saying that I was 'in a bad mood', and that I would snap out of it.  My mother understood more about my predicament from the basis of her own experience (I don't know how she coped with 5 kids and an alcoholic husband!)  and quietly said to me "you're not well, are you?" and took the whole discussion away from accusations of moodiness and grumpiness. After that, talk about mood was outlawed.  People around you need to know that all the love, empathy, concern, engagement and rationality are inside there still, but there is a real physical problem that's short-circuiting some interactions, and that might be misunderstood.  People really need to know that you are carrying a burden.  After I was diagnosed, my friends said that they knew something was wrong because I had changed from having a short-fuse to having no fuse at all.

    I was diagnosed in 1999, used carbimazole along the way to deal with flare ups, and was finally treated with radioiodine in 2011.  The journey has been quite long and painful because I didn't know the terrain, and my doctor didn't either.   I lost 3 jobs and my family life disintegrated. SInce referring to the sources of information that were all around me all along,  and trusting my ability to interpret the data along with the doctors, things have started to turn around.  I am hopeful. I would do a lot differently but I hope never to have to have the opportunity!  I would never willingly relive the last 16 years.

    Most importantly, I think you should be absolutely sure that any therapy your doctor recommends is absolutely the best option for you, and that you completely trust his/her advice.  There is no going back with surgery or radioiodine treatment.  After treatment, be sure you get LOTS of monitoring to be sure that the therapy is working, and be sure to have a strategy that allows you ample recovery time. The recovery time seems quite long, and it is deceptive to people who are not in the picture.  I was treated on a Thursday, had one day off (Friday) to recover from it and was back at work on the Monday.  My boss was astonished when I told him that I was unwell as a result of the treatment some weeks after, and said that he thought it was all done and dusted after the single treatment. I think you may be surprised how long it will take you to feel well after treatment.  You need to plan for that.  How you feel is the most important data, and I found it useful for a while to keep a diary of how I felt (well, call it mood if you must) in terms of energy, libido, etc etc. and so I could talk specifics with the doctors.

    I contacted this website because I was down for a while, and I feel that I still have a way to go.  Coincidentally, I am starting to feel better now, and I am optimistic that I can get my old life back and be healthy again - eventually.  My new partner and I are looking forward to that.

    Take care, and remember that you are not alone. The people in this discussion understand your challenges.

    Mike

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  • Posted

    Wow! Your replies mean a lot to me, it is a constant battle I've just recently changed my endo and I'm waiting for a new apt, but my doctors really don't have a clue, one said that my fatigue shouldn't be a symptom of hyper, I've just been hitting a brick wall for a long time and you guys have gave me more advice and hope than any doctor has so far. I'm grateful! 
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    • Posted

      I agree with the one who said your fatigue shouldn't be a symptom of hyper.  I would say that you are hypo as a result of being over-medicated.  It can be like walking a tightrope.  The funny thing is that Endocrinologists think they can walk it for you by remote control and seeing you no more often than every othe month.

      To me, it seems like the pituitary is slow to produce TSH when you are not feeling well and you are not feeling well because you are not getting enough T4 or T3, which is because you are not getting enough TSH; so it becomes a vicious cycle.

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  • Posted

    Hi Jess, sounds like your meds are working! They are designed to slow down your body ..tthey do this incredibly well.too well..I coyld not work because I couldn't get out of bed before 11am!.Unfortunately this is the yoyo effect of hyperthyroidism treatment. .my advice is listen to your body and only do what you can..it is depressing and lonely as no one understands..but hang in there. .it will hopefully improve. Take care!
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    carol, yeah your probably right that the meds are working, sometimes I wondering if it's worth it, I used to be so active now I feel like a zombie! One thing that has improved over time is my eyes the bulging definitely looks less prominent so I can't complain there. Do any of you guys know of any good supplements I can take?
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      You could eat a brazil nut every day.

      I can't really tell you to go against your Endocrinologist's orders, but that is what I did, by decreasing my own dosage, sometimes just by 5 mg per week and it worked for me.  Actually, I was careful to keep my new dosage the same for at least 4 weeks prior to the next blood test.  I felt much better the day after the smaller dose.

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    Hi Jessica I had overactive for 22 months taking 20 mg carbinmazole then 10 mg my endo said it would never get better and to have RAI which I had no intension of doing so I built my self up for another confrontation with him last September but when i seen him my bloods were normal he was shocked so put me on 5 mg for 3 months but as usual appointment late so seeing him Tuesday hope to come off tabs but what I reckon normalised my blood was 1000MG acetyl l carnitine also vitamin D and vitamin b12 I am convinced these worked any way seeing him on Tuesday so will see what results are but no matter what I will never have RAI but I must add I never had side effects with carbinmazole excep tiredness
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    A lot of people saying they won't go down the path ofhaving radioidine therapy. ...not sure why as it has been a therapy for 50 years and we are told it is less radiation than having an xray...surely better than invasive surgery. .I had a little nausea for a couple of weeks and 6 weeks later a slightly aching neck...but definitely feeling better!
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      RAI ultimately renders people hypothyroid and they require thyroid hormone replacement.  Not everyone does well on Synthroid which is T4 only but that is what is prescribed by most practitioners for hypothyroidism.  Also, many people will get thyroid eye disease (TED) after having RAI often years later if they did not have it before RAI.   The problem is not your thyroid, the problem is your immune system and the antibodies linger even after RAI or thyroid surgery.  What part of the body will they attack next? 
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    true I currently have thyroid eye disease so rai isn't suitable my endo has recommended surgery. Tbh I really don't know which route to take, which is why I have joined here to hear other people's view who have actually lived and breathed it because I feel like the doctors just tell me what I want to hear.
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      Linda got right to the point. Take out the vitim thyroid is not a solution. The culprit "thyroid antibody" is still there doing the damage. Graves disease can't be cured, but other things can be done to reduce the symptoms it causes us. Today I'm feeling better, much better than 2 days ago.
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      I started with Graves' Disease in 2009 and having worse double vision.  They recommended RAI or Thyroidectomy but I refused either, so I was treated with Methimazole, the Endo saying there was only a 20% chance of remission with the anti thyroid drug.  I went into remission in Dec 2013.  

      It was in 2010 that it came out that RAI would increase the likelihood of Thyroid Eye Disease.  The main problem with destruction of the thyroid is that you can never change your mind and get it back.  Doctors think it is easier to treat the resulting hypothyroidism, but they are quick to deny that it is due to the thyroid, or lack of it, if you have symptoms when your TSH is in the normal range.

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