Unacceptable side effects of Levothyroxine

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I was described Levothryoxine 2 years ago and my GP has increased it until I am now taking 125mcg.I have never had so many various symptoms in my life - severe weight gain including puffy face and eyes, very itchy dry skin, brittle nails, thinning hair but the major items are the pains in my joints and muscles - especially in my knees and my hands. The doctor said I have carpal tunnel syndrome and also now have high cholesterol,,,,,,, When reading other peoples' experiences it would appear that many people have all of these symptoms so why is it that GP's do not take this illness more seriously. I recently asked if I could have a full blood showing all readings and also if I could be prescribed Armour and was told no. It also scared me to find that several pharmacists in major chemists haad never even heard of Armour. Has anyone felt like they have had enough and just stopped taking Levothyroxine and what was the result?

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  • Posted

    I suggest having your iodine level checked.  Chlorine and floride interfere with the thyroid and iodine has helped me.
    • Posted

      Good to ook into iodine. With the thyroid porblem, you often get iodine sensitivity, so iodine can cause massive inflammation.  I don't know abot the UK, but it seems here wiuth any bloodwork, there is some general range that is listed with your results, and then there's the real range that you have to reference on your own. For example, here, inthe US, if I get my TSH tested, it doesn't show up as out of range unless its above 5. However, if TSH levels are above 2.5, you're in big trouble. I had my iodine levels tested an they came up normal, as did my bromine levels. Bromine is worse than Chlorine and Flourine by far, but difficult to detect. I had te bromine tested because I worked with it and know I had exposure.

      The other problem with iodine is that it can cause severre jitteriness. So  you have to take it in small doses to start with.

    • Posted

      Thank you for the information on iodine and aiminf for TSH of 2.5. My TSH has always been undetectable for me to feel anything other than lousy. It's new territory for me, to have TSH in range! It only happened for the first time on 27/9/2015 - since I've been on 750mg of the NDT named ThyroGold.
    • Posted

      Hi Barbara, I think I didn't explain quite right. A TSH of 2.5 is WAY WEAY too high, which means your thyroxin is too low. With the meds, a side effect is that TSH often zeros out, the zero is normal withthe meds. Without meds TSH should be below 2. You coan do a search for TSH ranges, but keep in mind the n umbers fro TSH pretty much go out the window if you're on the meds. So you have to use the T3 and T4 levels to monitor your meds.
    • Posted

      Hi there my TSH was 38.05 and my T4 was 4.8 before going onto Levo for a year now my blood work comes back normal but I'm feeling as ill as ever! Since my initial blood work which diagnosed the hypo I have not had any T4's or free T4 or Free T3. I'm going to ask my GP to do them as I have recently found out that Free T3 is the most important hormone used by our body's cells. Clare x
    • Posted

      Catherine, Thank you for this info, it's good to know what I'm aiming for. I've only recently increased the dose of the NDT I'm on and agreed yesterday with my GP to stick at this dose for 4 weeks to let everything stabilise. Also I'm getting some symptoms of being over-dosed (loose stools) for about an hour after taking the morning dose, but this could just be that I'm taking too much NDT at once, so I'm currently experimenting with splitting the daily dose across three separate doses. I'm taking 300mg at 7:30, 300mg at 13:30, and 150mg at 16:30. So it'll be interesting to see what effect this has. In four weeks time I'll have another blood test and review the results and dosage. Trial and error as usual!
    • Posted

      Getting a blood test of free T4, free T3 and TSH is exactly the right thing to do. Get a printout of the results and look to see 2 things (1) if each result is in range and (2) each results relative position in its range e.g if T4 is in middle of its range, T3 should also be in the middles of i ts range. What you are looking for is evidence of whether your body is converting T4 to T3 properly (if its not, T4 will be higher in its respective range than the T3). If you're not, it would explain why you still feel poorly despite being on thyroxine, and the treatment would be to swap some of the T4 (thyroxine) tablets for T3 (liothyronine) tablets, or switch to NDT (as it contains T3 as well as T4).
    • Posted

      Also worth asking GP if s/he'll test your ferritin, vitamin B12, vitamn D, iron levels well, as many people being treated for an underactive thyroid are deficient in them. Ferritin needs to be 90+ to process thyroxine properly.
    • Posted

      Hi Barbara, yes I will add those to the list so thanks you for that.

      I'm almost certain that I'm not converting! I experience cold spells (really bad) just before my period- it's so bad I can wear extra cardi or jacket over a jumper and still can't get warm. I read part of a med journal. it stated that theres evidence to prove that when your having temp fluctuations.. this is the best time to get blood work done as this is when the body is struggling with convertion. It suggested taking temp for a week throughout the day every hour (I know sounds excessive) note all readings. If there is a drop in temp and it has a regular time pattern. if so this is the best time to get bloods done at that particular time of the day. I live in Great Britain so this can be hard to arrange blood test at desired times.. And NDT I can not get prescribed! Clare x

    • Posted

      Yes Clare, I have never heard of any numbers such as  yours. It would seem that If your TSH is really high, its signalling like crazy for your th yroid to work to make the T4. Also, since your T4 is super high, it appears your thyroid is following the instructions of your pituitary's signal by the TSH. Given both high T4 and TSH, it seems that themost likey gap in your thyroid  feedback loop is T3. T4 gets converted to T3 in other cells in the body,  predominantly in the GI tract and the liver. So if your liver and GI tract are not healthy, you'll want to get them healthy. 

      Also, you may have high reverse T3, so you'll want to get that tested at least once.  That could be another reason you have the high T4 and TSH.

      Also, it sounds as if you may have been hyper thyroid, as often happens with Hashimoto's and Grave's disease intermittantly, because untreated, the thyroid can go pretty wonky as its trying to keep up.

      However, it sounds as if your bloodwork is coming back normal now, so your body is recognizing the T4 and converting it, we assume. As you said, I would still check the T3, because, yes, that's super important as well because it is the more active form of thyroxin.

      It might make sense for you to be on a med containing T3, given your previous bloodwork, that you are able to make plenty of T4.  The NDT porcine meds have a combination of T4-T3 with a higher than normal human T3-T4 ratio.  For example, I seem to have generally low thyroid with equally low T3 and T4 with high reverse T3, as well as stomach and liver problmems. So I need some T3, because of the high R-T3 and inability to convert. But for me, I'm not sure the high T3 in the porcine is the best- because my blood work comes back with normal T4, but high T3, relatively, or if the T3 is midrange, the T4 is low for me. S o I;'m considering trying a bovine NDT.

       For you, because you have tons of T4, but high TSH initially, the higher T3 meds might be a great solution.

      Hope that makes sense.

    • Posted

      Hi Barbara, Thanks for the heads-up! Now I know I'm on track. I've had these tested. The D always comes up on the low side of normal, though I've heard it should be near 100. Mine is usually below 30 unless I'm taking the supplements.

       I take coblimated B vitamins because I can't seem to digest the others. I was going better when I was getting the injections, but don't have access to that now.

      Iron always seems to come up normal.

    • Posted

      Hi Barbara, thanks again. I am on the NDT porcine, which has the higher t3. I'm not sure theis is the best for me. I need some T3 because when I was on the levo, my tests came up high range T4 and low range T3. Now, on the porcine, I get mid T4 and high end T3. So yes, I probably need a more balanced med with a more bioidentical ratio of T4-T3.

      Hence, I'm considering the bovine. I'm also suspecting I may be having a mild reaction to the pocrcine, which I didn't have prior to the use of the levo. Another reason to consider the bovine.

      I'm waiting for my latest test results now.

    • Posted

      Hi Barbara, Yes, let me know how that dosing works out. But realistically, it takes a full thee months for the meds to level out. If you test earlier, you risk a false spike. 

      I am fortunate in that if I have a real problem, i have an expert who knows what he's doing and looks at enough thyroid tests regulalrly that it seems he can extrapulate in his head for early bloodwork if necessary. This of course is a very rare skill, and even with his ability, he prefers to wait the full 3 months. The exception of course is if you are self-regulating and need to adjust.  But since most doctors can't extrapolate an early blood test, they also don't like patients self-regulating.

      Unfortunately, because of the nature of the disease, the only way to have any success for a severe case is by self-regulation.

      Since I have to drive hundreds of miles for the specialist, I self-regulate my dose and if I need to change it, I do. But I stall a little on the blood tests until I'm pretty sure the meds have leveled out, becaue my GP can't extrapolate to account for early testing.

    • Posted

      Hi Catherine, yes it makes sense. I def think I was hyper for 9 years as I had those symptoms.. Dropped from a size 14 to a size 6 (uk) and couldn't put weight on for those 9 years then after birth of twins in 04 things changed I began hypo symptoms I had my last child in 07 and they got even worse! Voice change, weight gain,sweating, bloating,hip pain, leg cramps, digestive problems, it took till last year when more organs began failing for them to diagnose serve Hypothyroidism. So still I feel poorly! I have celiac desease and changed my diet totally.. I also eat the right things for my thyroid. So I think now I need to push for other tests like you touched on. I hope that you also find the best mess for you too. It's so hard here in Great Britain to get doctors to treat you on symptoms! They are so stuck on TSH ref. Thanks again! Clare x
    • Posted

      Hi Clare, Yes, that's pretty much the case here in the US as well. They're all stuck on the TSH and its not very useful unless you want to check the pituitary signal to the thyroid. That's pretty much the ONLY thing the TSH is. Unfortunately, if there is a pituitary problem, they don't have a treatment for that. And they don't have any way to know why the signal from the pituitary is off, or what it means. How dysfunctional is that? Most of the doctors, even the specialists don't know what they're doing. I usually have to explain how to test and all, but I'm just following what my really good doctor did, hoping I get everything right and then doing all my own research. The don't know how to treat or test for all the hormone and other issues that result from low thyroid, so I just do a full hormone panel and adjust with herbs. Really difficult here to get a hormone doctor that knows what they're doing! So Yup! We have to look out for ourselves!

       

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