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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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  • Mike5635
    Mike5635

    Posted

    Hi Vanguard

    Thanks for the info my hands still shake also I have had like a head cold since I have been taking these tablets anyone know what the effects will be if I just stop taking them I also grind my teeth my mouth is very dry during the night to the point my teeth stick to the inside of my mouth running nose during the day like mucus in my throat at night I have noise in my ears constantly which I didn't have before. Are there any other medicines I can take

  • van80
    van80

    Posted

    Hi...I have been on l.thyroxine since aug 2012. All was well until nov 2012 when I started sgedding so much hair. My doc thinks im depressed but im upset because of the symptoms of the tablets...to date hair loss is still the major symptom and no one can explain why...
    • carol11091
      carol11091 van80

      Posted

      Have you had a second blood test? Hair loss is a sign of hypo and so is depression; it sounds as though you need to strengthen the dose and I suggest you change your doctor if he didn't even suggest another blood test.
    • carol11091
      carol11091 van80

      Posted

      Hair loss is a sign of hypothyroidism so it sounds as though you need a stronger dose and I would change doctor because if he didn't know that he shouldn't be treating hypothyroidism!

       

  • daisy57
    daisy57

    Posted

    Hi, I was diagnosed with under active thyroid over 2 years ago and put on levothyroxine. Over the course of the next 12 weeks my throat gradually swelled up until I couldn't swallow so I stopped taking it. This started a yoyo of taking it and swelling/ stopping it as my doctor did not believe I was allergic to it. Finally, after 2 years, a lovely consultant suggested liquid levothyroxine which initially started the swelling but as I continued to take it I reached a plateau and the swelling reversed. However since taking levothyroxine I have developed an eczema type rash and I seem to have become allergic to many things - fish, strawberries, cabbage, eggs and peanuts to name but a few. Doctors still insist there is no connection but it cannot be a coincidence especially as I got to the age of 56 with no problems! I am under a consultant dermatologist who will conduct allergy tests so that hopefully I will be rash free in the future. It just amazes me that with the amount of people suffering these side effects that doctors will not take us seriously.
    • carol11091
      carol11091 daisy57

      Posted

      I am so sorry for you. There are many things one should not eat while taking levo  , cabbage, grapefruit, peanuts  to mention a few.

      Did you take your medicine on an empty stomach and wait an hour before having breakfast? Also, know that you shouldn't use fluoride toothpaste.

      Do hope you sort things out.

    • carole76433
      carole76433 daisy57

      Posted

      Hi Daisy

      Write to the manufacturers of Levo either Actavis or some other manufacturer that makes it also, their email address is usually on the side of the packet, if not ask any pharmacist who should give it to you. We all need to let the manufacturer know about these side effects that is the only way they will do something about it. Good luck. Carole

    • clare49494
      clare49494 daisy57

      Posted

      Hi just a quick note you should not be eating strawberries or Peanuts if you are Hypo! 
    • MtViewCatherine
      MtViewCatherine tammy89827

      Posted

      Hi Tammy- If you need thyroid medication, it's really important that you get it. As bad as it is, your body needs the thyroxin to function properly. This is part of your endocrine system, as is you pancreas, which produces insulin. Both are involved in metabolism. A simple way to think of it is that the pancreas produces insuling, which deals with processing sugars and carbohydrates in the body. So without insulin, people die very quickly. Thyroid is involved in metabolism and the stablizing and making of energy throughout the body. It works at a different point in metabolism than insulin, but is extremely important because without it, you cannot get nutrients to your cells, your metabolism slows down to that of a very old person and your body ages prematurely. If you have read any anti-aging books, they will tell you this is the worst health problem to have. It often goes undetected for years, until the body is riddled with nonspecific symptom, auto-immune disease, intestinal problems, obesity, cravings, and premature aging.

      That aside, I can tell you first hand that when my meds are too low, among other symptoms, I have extreme water retention, and severe migraine headaches to the point that I fear I may have a seizure, I am unable to get out of bed or function because of severe constant exaustion. If you are not happy with the lovo, PLEASE find an alternative treatment. I use a prescription compounded natural dessicated thyroid that comes from pigs. I am in the US, so it is available as a prescription here, though not preferred by most doctors, even though it has been around longer than the synthetics (levo). Worst case, you can do an internet search. here are several companies  (in English speaking countries) that specialize in natural dessicated non-prescription  thyroid. That means it isn't processed and has whole thyroid, not only certain parts. This is supposed to better, but I'm on a very high dose, so have not tried it.

      Hope that helps.

      Catherine

    • MtViewCatherine
      MtViewCatherine tammy89827

      Posted

      Sorry Tammy- Ignore my long previous answer... I thought you were responding to a different post. Why not strawberries and peanuts? They're probably goitrogens- they cause growth of the thyroid, and not in a good way. If you look that up, you'll find that almost all foods are. Particularly cruciferous vegetables that are uncooked. So stay away from raw broccoli, cabbage, etc. Cooked is OK. Gluten, a protein found in wheat, rye and barley, is linked with thyroid disease, so most natural practitioners recommend going completely and seriouisly gluten-free. The Gluten triggers the auto-immune response responsible for Graves and Hashimoto's diseases. I have found going gluten-free to be very helpful. I eat strawberries once in a while. Don't care for peanuts because they're generally unhealthy.
    • barbara98940
      barbara98940 daisy57

      Posted

      Hi daisy, your symptoms sound familiar to mine. Look up histamine intolerance on allergy uk website. I've also become intolerant to milk - causes excema and hives - so watch out for this as well. Daily mail newspaper did a good article on histamine intolerance.
    • MtViewCatherine
      MtViewCatherine barbara98940

      Posted

      Hi Barbara, Thanks for posting. I also seem to have a problem with histamines. I'll look into it now that I know ohter people are havinmg similar symptoms. All the food allergies except the gluten and the milk problems, go away for me when the meds are right. I can eat cheeses, and yogurt, just not milk. However, I've deveped hay feaver and pollen allergies, which I've never had.  Hmm. Definately worth some research. Thanks!
    • barbara98940
      barbara98940 MtViewCatherine

      Posted

      Hi catherine, thank you for your reply: good luck with the research!

      You can get the Daily Mail article on histamine intolerance free online.

      Despite what the article says, I was told that UK doesn't have any tests to confirm it.

      Did you have to increase or decrease your T4 dose to get rid of your allergies?

    • MtViewCatherine
      MtViewCatherine barbara98940

      Posted

      Hi Barbara, I didn't increase my meds becasue of the food allergies. I had to switch to a natural T4/T3 med, which works better for me. However, what I've noticed is that 90% of the allergies go away when the meds are right.

      Thought for the day that changed my perspective: We are all so angry withthe parts of our bodies that seem to scream withtheir pathology and symptoms. I realized that when my body expresses a symptom, it is strong. If it were weak, it couldn't make such a big fuss. I've realized that maybe my thyroid is screaming becasue it's compensating for a weakness somewhere else. So instead of wacking the strength that I see as pathology uand symptoms, I'm strenthening the weak and silent parts of my body. This makes me feel at peace and I can stop being angry at my thryroid, when its only trying to work. Thank you thyroid. Hope that's helpful to someone.

       

    • barbara98940
      barbara98940 MtViewCatherine

      Posted

      Hi catherine, thank you for taking the time to reply. I have a doctor's appt next week to ask if could switch to natural meds and your reply has added weight to my view. I'm going to struggle to get natural meds prescribed in the uk. Which brand do you take?
    • MtViewCatherine
      MtViewCatherine barbara98940

      Posted

      Hi Barbara, Yes, do try the natural. Everyone I know says the synthetic doesn't work. I'm on a compounded (the pharmacy makes it to assure no additives)  Natural one because after the levo, I was so sick, my doctor was afraid to risk anything with additives. I've tried Armour, but they started using corn or wheat products in it so I stopped. I've also used Naturthroid, which was better. A freind of mine used NP. She liked the NP better than the Armour, but she couldn't handle the meds and only  has a mild problem, so eventually went off them. The meds are difficult enough even when doing the natural because its so difficult to regulate the thyroid. The synthetic (levo) just makes everything worse because it doesn't work. I think doctors like the levo because there's more data... Obviously wrong data.Unfortunate that doctors don't have training in evaluating quality of studies.

      Good luck!!

    • barbara98940
      barbara98940 MtViewCatherine

      Posted

      Hi Catherine, I've just tried NatureThroid - briefly, because it made me swell up! I checked the ingredients and it's got lactose and maize starch in it.

      I'm just ordered some ThyroGold which I'm going to try next. Fingers crossed - it might be psycho-symptomatic but I felt really good on NatureThroid (not fatigued, brain fog gone) - shame about the fingers swelling. I think it might have something to do with the fact that my thyroid is completely wrecked (TSH=170 when diagnosed in 1991 and so isn't producing any of the other thryoid hormones (T1, T2 and calcitonin ??) It would be really interesting to know if the 15% of us that don't respond well to thyroxine, are the ones that have totally defunct thyroid glands.

    • LAHs
      LAHs barbara98940

      Posted

      Very interesting point. It would be worth looking at (but how?). I think actually that if you read a lot of these comments you will find that many of the people were put on a very small dose because of just low thyroid activity - not totally defunct or after thyroidectomy (I am the latter and I am not doing well on Levothx.) 

      But I think some statistics should be run on these problems, just to see if we can do something else for our sector of the population

    • MtViewCatherine
      MtViewCatherine barbara98940

      Posted

      Hi Barbara- I've always wanted to try the thyrogold. Let me know how that works for you, and how the dosing is!
    • barbara98940
      barbara98940 MtViewCatherine

      Posted

      Hi Catherine,

      Will do. Also I'm going to contact my endocrinologist and accept her offer to try WP Throid.

      GP has just agreed to ask commisioning pharmacist about prescribing T3 only for me in the meantime.

      Hi LAHs, I'm going to see if the encrinologist wants to research the hypothesis: The 15% of patients who don't respond well to levothyroxine treatment are the ones whose thyroid is totally defunct'.

    • carmel83758
      carmel83758 carol11091

      Posted

      Not quite true. You can eat cabbage if you cook it first, and very few would eat it raw, you would also need to eat a lot of it, a bucket full regularly, before it makes any difference.  The same myth is said re brocolli, you would never eat that much and it has to be raw for it to be a problem.
    • MtViewCatherine
      MtViewCatherine carmel83758

      Posted

      Yes, you can eat cruciferous vegetables if well-cooked. However... I once tried the "cabbage soup" diet, and became very ill from it. So moderation is important.
    • jane_54005
      jane_54005 barbara98940

      Posted

      Hello Barbara,

      could you send me the name of the OTC bovine that has worked for you I want to give it a try.

      Thanks

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