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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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  • penny_anne
    penny_anne Guest

    Posted

    Just to say that I had all the symptoms you destine before taking Thyroixine and are on the symptom list for Hypothyroidism. Is you haven't already, see Thyroid UK and associated Heath unlocked blog also. Since being on Thyroixine my Carpal Tunnel is a lot better but all the other symptoms are the same though much less tired. My main issue at the moment is the brain fog and dizziness which the Thyroixine has helped but very difficult to pace.

    Re Armour, the NHS won't prescribe and GPS have no say in this. I'm on 100mcg but as tests show normal now I've taken it into my own hands and trying 125 out. I would love to be able to get Armour cost effectively. An Endo I saw said go on holiday to Greece and get a months supply for £3. Tried to find out about this online with no luck.

    • MtViewCatherine
      MtViewCatherine penny_anne

      Posted

      Hi Penny, you're right that hyper and hypo symptoms, as well as side effects fro the meds are difficult to discern. I got off the levo because I really seemed to accelerate my thyroid disease. Honestly, the levo Benadryl killed me.

      I tried a bovine  glandular for a year, then wn completely to supplements and I'm feeling a lot better.

      if you want to try ThyroGold, you can get it without a prescription and it's better than Armour because the thyroxin ratios are closer to human. It's costly due to the import taxes in England. 

      Its really criminal that people can't get a bioidentical thyroid medication. Just shows where the priorities are.

    • barbara98940
      barbara98940 penny_anne

      Posted

      Hi Penny Ann, I'm on ThyroGold and live in the UK. Remember when working out the cost that the Royal Mail will require you to pay 20% VAT and a hanging charge of about £6.50 before releasing your parcel. It costs me about £1 a day and is well worth it to feel so much better. Most people need between 300-600mg a day. I worked out 100mcg thyroxine is equivalent to 600mg ThyroGold. I need more ThyroGold in winter than summer, just like I needed more thyroxine in winter. In September 2014, 3 months after the switch from thyroxine on 23 June 2014, I stabilised on 750mg, then in the summer 2015 I needed 450mg. I'm currently on 562.5mg and need to split a capsule up to get to this dose (I.e. 1 x 300mg capsule + 7/8 x 300mg capsule). If you do decide to self medicate, ensure you read all the information on the ThyroGold website, particularly the 3 free chapters that are available as links at the top of the Q&A page. Don't be misled, this may be available over the counter (OTC) but it is a proper natural desiccated thyroid of bovine (cow) source, so treat it with respect and follow the guidelines for building up the dose (tpauk has dosing instructions). You need to allow 2 weeks in between each increase in dose to allow your body to adapt to getting T3. If you have any questions I'll be happy to answer them if I can.

  • AshleighRB
    AshleighRB Guest

    Posted

    I have stopped taking Levo becuase I am allegic to grass pollen and there is a tree ingredient in the fillers to make the pills. I feel great. I haven't felt this good in years. My hair is now NOT falling out. My face is NOT swollen. My memory has come back and I can see a little better. I am also NOT overheating.

    I will eventually need to take some form of thyroid medicine becuase I have Hashimoto's, but it will not be Levothyroxin.

    • susan27279
      susan27279 AshleighRB

      Posted

      try wp thyroid---it has almost no extra ingredients.  i have a similar problem like you and cannot tolerate the fillers.
    • barbara98940
      barbara98940 AshleighRB

      Posted

      I researched them and I agreed with Susan, WP Thyroid has the least fillers. And if WP Thyroid doesn't work (it made me swell up) try ThyroGold. WP Thyroid is porcine based, ThyroGold is bovine based.

    • MtViewCatherine
      MtViewCatherine barbara98940

      Posted

      When I went off the levo, I tried Naturethroid and then WP. They weren't as bad as the levo, but still pretty bad. 

  • jayne63805
    jayne63805 Guest

    Posted

    Hi i have come off all of my meds because they have done nothing 2 help me the best advice i can give 2 any1 with a thyroid problem is to go on the paleo diet wheat gluten dairy free as all of these interfere with ur thyroid also im on euthymol toothepaste as it has no fluoride as this also effects the thyroid! So dont drink tap water! 80% of people with thyroid problems have gut issues so again i strongly suggest the paleo is the way foreward! Iv never felt so good the doctors dont tell any1 with thyroid issues about avoiding certain foods and things so there4 u will b unwell its just a joke really!!!! Iv googled so much iv learnt a lot of stuff its always going 2 give me the bullets 2 fire back at the doctors who dish out these meds so easily without doing a little research 4 the patient!! T4 bog standard meds float around ur blood stream doing nothing because they need another hormone t3 to get in!! To get actually in ur cells 2 do the job of making u well im so so glad at my age now 55 im going 2 start enjoying my life again and as 4 the thyroid depression! If we all were on the proper medication we wouldnt b depressed!!!!! Iv bedn having nice clean meals not a lot of sugar if been eating nuts brazils almonds unsalted! Im on almond milk unsweetened raw honey my butcher makes my sausages no crap in them just pork apple tomato herbs@spices lots of free range eggs mushrooms prawns raw coconut oil il keep u informed im waiting 2 have an ultrasound on my thyroid 2 c if iv got hashimotos which is auto immune xx
    • FlippinThyroid
      FlippinThyroid jayne63805

      Posted

      I too am doing a paleo diet but not doing the switch in one go, low and slow with the changeover as with taking the meds. I am not reducing the T4 just yet. Btw, I visited my consultant last week who discharged me a 2nd time because my GP keeps sending me to him to save his own costs. I was told by my consultant that he was going to send a strongly worded letter to my GP to stop doing it and give me the meds I need. Yey!!
    • MtViewCatherine
      MtViewCatherine FlippinThyroid

      Posted

      Hi flippin' glad to know I'm in good company. I'm off all the meds as well. Went through various meds, none worked, and were making me sicker. When I went off, my pituitary and thyroid "turned back on" and I got bad migraines, horrible detox reaction and bloat. But amazingly, still feel better than on the meds. I've been using phenylalanine and also  a blend of essential emink acids, turmeric and liquid chlorophyll (mulberry leaf source, avoid the alfalfa bc it's very allergenic!).

      i have acupuncture to support me through this process, to ease the symptoms. Keep me posted on other things you're finding helpful.

    • jayne63805
      jayne63805 MtViewCatherine

      Posted

      So glad iv joined this site its good 2 talk 2 other thyroid sufferers as i think u all know all u get out of the doctors is but ur tsh levels are NORMAL!!! They make u feel like a hypochondriac!!! Does any1 feel extremely hot all the time! Thats another reason i came off the levo thyroxine ! Since iv been off it iv had no aches or pains and my fingers are pain free v strange! Also my cough isnt as bad apparently its called the levo cough! Im seeing things a lot clearer 2 no brain fog!! Im taking agood quality v d if u could advice on any body cleanses id b grateful xx
  • Glitters73
    Glitters73 Guest

    Posted

    Hi, I have been on levithyroxine for approx 20 years and did not know anything about other issues, I have just started to read things ppl are putting on here or Facebook etc and frankly started to worry as I have been having lots of health problems for quite a few years, seems to be one thing after another with no diagnosis. When I got diagnosed with underactive thyroid it took over 3 doctors and took them ages. It was scarily high the locum doc said who found what was going on. But I have never been told about anything other about diet or other illness etc. I struggle to lose weight and have put on over 3 stone due to other problems hindering me being active, such as arthritis in hips (from an operation as a child) but getting worse now I'm in 40's. I have some kind of nerve pains around hip and back that no one can actually diagnose as Iv had four years of physio inc hydrotherapy. Muscle tightness in back and shoulders, very tired all time, so due to physicality I'm on tramadol, naproxen, lanzopresole and gabapentin too. Which I do not want to be on drugs.... i have started a very low impact workout and swimming to try help myself, I used to dance and sing on stage :0(

    Could all these other things be because of my thyroid? Whenever I tell the doc about stuff they say my levels are fine. I take 100mg of Levothyroxine it's only dltered a few times from 150 to 100.

    • Glitters73
      Glitters73

      Posted

      Oh plus I forgot to mention the IBS type symptoms that drive me mad, also undiagnosed!
    • Mrspeach
      Mrspeach Glitters73

      Posted

      Hi,

      It appears levothyroxine (on for 4.5 years) doesn't suit everyone and since my dosage increased from 25 mg at the start to 100mg by the end my headaches increased and in the last 6 months I had very stiff muscles in my neck back and shoulders. I've been to physio and weekly sports massage, for a day after massage they would feel a bit better then back to same stiffness again.

      I started looking at side effects and with the support of a doc (first doc didn't want me to come off) I've come off levo and only taking multi vit and non pres thyroid support supplements. Within days my muscle stiffness has got lots better almost like I was walking on air and was used to feeling really tense for years. My advice would be to get a doc that supports you, in the end I put my foot down and told them I was coming off to see how it affected my suspected side effects, I did get a banging headache in the base of my skull after coming off, think this was my pituitary gland kicking back in to produce the hormones again (strong ibuprofen helped relieve this) I also detoxed off coffee and the rubbish I was eating at the same time. I'm only talking from my own experiences and I'm only a week off levo so far there are lots of people with a lot more experience of thyroid issues on this site than me that will probably reply to you.

      Your health issues might be more complicated than mine so my best advice is to get a doc on your side if you are wanting to come off levo, my thyroid problems were quite minor to start so borderline under active. My stiff neck/ back problems were apparently due to stress and lack of periods (over a year) due to having the coil fitted, within days of coming off levo I had a period and muscles feel great and supple again.

      I will say the more and more people I speak to that are on levo seem to have incurred other health issues since starting the drug and those health issues increase with the dosage increases of levo.

      Good look keep posting updates how you get on for others to benefit from.

    • Glitters73
      Glitters73 Mrspeach

      Posted

      Thank you it's very interesting all these years and I didn't even think to look into my thyroid. It maybe big even be related but if it is why do the docs never pick up on it! I left my job 5 yrs ago due tomill health and changed direction to suit my health.... still no different though lol but I shall make app with doc and talk it through. Thank you

    • Glitters73
      Glitters73 Mrspeach

      Posted

      Well my doc tested my T3 as other levels always get a normal result. And thetvtoo is normal, so apparently nothing going on with levothyroxine.
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