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

    Hi, I was perscribed 15.5 years ago, my current dose is 112mcg, I do weigh more than I want to (+25 pounds).  My knees and elbows do ache.  My main complaint is that I am 55.5 years old and have a hard time if I do not get 9 or 10 hours of sleep.  This is similar to the original symptoms I had when I went on the drug, do the effects of the drug wear off over time?  I have not stopped taking the drug.
    • Posted

      No, the effects of thyroxine do not wear off after time, however it is dised by weight so if you are heavier you will need more thyroxine (1.7mcg per kg).

      Ideas for what else it could be: My joints ache when I eat gluten (I test negative for cieliac disease, but have a positive RAST test for wheat); low vita

      In D, low iron & ferritin so you don't convert thyroxine efficiently. Adrenal gland problems.

    • Posted

      Hi Don, the other responses are right on. OTC dessicated Bovine is closer to human ratios of T4/T3, so is a lot more effective than the synthetic T4 or even the NDT. 

      Please do look up the side effects of levothyroxin, as it is know to worsen and cause thyroid disease as well as other autoimmune type symptoms you mention. My experience was that the symptoms did not improve and caused long term damage to my system, as well as did not curb thyroid disease progression.

      I switched to an OTC Bovine, which was much better. However, formulation changes drove me to find another solution, which was amino acid therapy. I used the amino acids to get off the OTC and off meds completely. I still have hypo symptoms, but they are far less, and not as bad as the side effects of the levo. So I'm living with the hypo, and treating by alternative means. The side effects of the levo were so detrimental, that I felt I would die if I continued to take.

      My mother is elderly and has had her thyroid removed, so she takes ThyroGold. Many of her health problems were alleviated when she switched from levo to this treatment.

    • Posted

      PS... I gained a massive amount of weight on the levo, over 50 pounds. My weight prior to thyroid disease had been extremely stable and low due to good lifestyle habits. But with the levo, I really ballooned out. I went from a size xs to xl top in a few months, massive water retention, liver lesions... in only a few months. I feel I should have been taken of the levo immediately, but instead was prescribed it for several years until I went off on my own.
    • Posted

      Hi MtViewCatherine

      I hope you are OK and don't mind me adding some clarification to your message. I know from what you've written previously, that the bovine NDT you had problems with was NOT ThyroGold. This can be gleaned from the rest of your message when you talk about switching your mother to ThyroGold, but knowing how fuzzy headed we hypothyroid people can be, I thought it best to explicitly say so.

    • Posted

      No, I am in the USA, and it is the synthetic thyroid that caused a plethora of problems for me. I do really well on the "piggy" thyroid extract, called bovine thyroid extract. Synthetic has only T4 in it, and my body does not do the conversion to T3 due to early stages of kidney failure. I never heard of ThyroGold. Is it a synthetic, and does it have the full range of hormones?

    • Posted

      Hi Barbara I've read several of your posts. I had thyroidectomy 2010. Currently on levo 125mcg, for 4 yrs now. Also diagnosed fibro/CFS.

      Some symptoms overlap. Does name brand, synthroid, make a diff for patients that u know of?

    • Posted

      Synthroid made me horribly ill immediately. It contains several dyes and other allergens, including acacia, that trigger the immune system. They're all bad, but the generics don't have as much junk in them, from my experience. I also tried compounded. Still made me sick. 

    • Posted

      I haven't personally used synthroid. A quick google search on the ingredients gives: 'Non-medicinal ingredients: acacia, confectioner's sugar (contains corn starch), D&C Yellow No. 10, FD&C Blue No. 1, FD&C Yellow No. 6, lactose, magnesium stearate, povidone, and talc. Each yellow, round, colour-coded, scored tablet, debossed with "SYNTHROID" on one side and potency on the other side contains levothyroxine sodium, USP 100 µg.'

      From my experience, I reacted by itching and slight rash to one manufacturer's levothyroxine more than another. They are not all the same. The one to which I reacted most had acacia in it. Some have maize starch in - I'm intolerant to corn (aka maize). The one I found was the best for me was by Wockhardt but they only made 25mcg tablets. So my GP prescribed me 4-6 of those a day (I needed more in winter than summer).

      It is known (and I even had this told to me personally by one of the top endocrinologists in UK - who co-authored the UK thyroid treatment guidelines) that 15-20% of patients don't do well on synthetic thyroxine. My personal opinion is that these are those patients who have a totally defunct (or non existent) thyroid. My reasoning for this is that one's thyroid normally produces 5 hormones/chemicals: T4, T3, T2, T1 and Calcitonin (although it doesn't produce all the T3 a person needs) but levothyroxine only replaces the T4 and one's body is expected to convert it to ALL the T3 needed. No-one seems to know what T2, T1 and calciton do. So it is these people

      without a functioning thyroid who do better on NDT (Natural Desiccated Thyroid) as it replaces all 5 hormones/chemicals. The problem us that neither the porcine or bovine types exactly match the human ratio of T4 to T3 (bovine is closest).

    • Posted

      Hi Kdsres, sorry for the delay in replying - I didn't get/see the notification of your message.

      When you say 'piggy thyroid extract' I gather you mean Natural Desiccated Thyroid (NDT). To clarify, NDT can be 'porcine' (dried, ground up pig's thyroid), or 'bovine' (dried. ground up cow's thyroid). ThyroGold is a bovine NDT and yes it does have all the 5 thyroid hormones/chemicals in it. I can personally validate that it has T4 and T3 because my NHS GP has been running monthly blood tests (including T4 and T3) for me since I switched to ThyroGold in June 2015.

    • Posted

      Debra try experimenting with cutting out foods and reintroducing them and see what effect it it has in your symptoms. I get bad joint pains if I eat much pork or lamb. Look up oxalates. I get bad joint/muscle pains if I eat fruit. I get blood blisters on the inside of my cheek if I eat chocolate and wheat. I also get itchy spots if eat fruit. These turn into eczema and ulcers. The point is, if I hadn't realised that it was foods causing these problems, I too would have been diagnosed with fibromyalgia and CFS (fatigue is also a symptom of a food intolerance). I have had extensive allergy testing on the NHS. Most of my problems ate due to intolerances. I test positive on the RAST test for wheat, dairy, egg white. I am allergic to oranges, red pepper and almonds. I have intolerances to dairy, corn, soya, potato, spices, grains and others. It has taken me over 10 years to identify the complete list. Corn is the one that gives me the most grief as its in everything. I tolerances are difficult to identify as the effects can take up to 3 days to manifest. Look up how to conduct an exclusion diet.

    • Posted

      Hi Barbara, is it you that was dx with fibro/cfs? Is that Cystic Fibrosis or fibromyalgia (sp) was that before or after thyroid? Cause there are a lot of over lapping side effects that can be "confused " for primary symptoms? Sadly I have become a big believer in doctors treating side effects as symptoms of another illness. Not commenting on your condition specifically, but was interested.

    • Posted

      Hi Cathy, no I've not got CFS (Chronic Fatigue Syndrome) or Fibro myalgia, though I think I would have been diagnosed with both if I hadn't found out that it was food intolerances that were causing the muscle and joint pains, general slight swelling, soft tissue swelling and fatigue. I struck lucky, I told my pharmacist all the foods that caused a reaction and he said he'd ask his wife who is a paediatric consultant specialising in allergies. From the list if foods I gave him, she identified Corn (aka maize) intolerance - that was my missing link. If I only eat chicken, kale, spinach, carrots, cabbage, broccoli, and only eat lamb/or pork once a week, I am symptom free. However, I do eat a little of other foods, the trick is to eat them at either a level at which I don't react, or at which the effects (symptoms) are bearable.

  • Posted

    I have found that the bovine thyroid extract works best for me. I have mild kidney failure, and the t4 does not convert to t3. The bovine thyroid extract has the full range of essential hormones, and I am not sure why the Doctors decided to make everyone take the synthetic. On the synthetic, I had thinning hair, paper thin fingernails, weight gain and was sleepy all of the time. I even developed skin problems. So back on thyroid extract I went, and feel better. Even stopped gaining weight. Maybe you should ask your doctor to switch your meds too.

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