Levothyroxine.

Posted , 28 users are following.

I live in the UK and am intolerant of synthetic levothyroxine. If I take what the doctor gives me for say two-to-four weeks, I gain a stone in weight, (from 10.5 stones to 11.5 stones in three weeks with no change in diet or alcohol intake or any other measurable factor), have no energy, feel sick all the time, want to sleep continuously, headaches, dizzy spells (sometimes even passing out), feel cold regardless of room temperature/time of year, muscle spasms and deep low back pain; I don't feel like I'm getting any benefit from my food and I suffer constipation both urinary and bowel.

I initially was diagnosed with hypothyroidism about three years ago and with a T4 I think of 17, (not sure about that). I responded to synthetic levothyroxine initially and over about a year this came down to 5 but then relapsed and shot back to 12 with all accompanying symptoms of pre-diagnosis. They kept increasing the dose, (up to 150ug), but to no avail. When taking synthetic levothyroxine, 15 minutes later, I feel sick and as if my body is trying to fight a poison, almost like fever or food poisoning, that's the closest I can approximate the feeling.

So I stopped taking the synthetic levothyroxine as I knew my body was rejecting it and it wasn't doing anything for the symptoms. I felt dreadful. The doctors either yawned, laughed in my face or became aggressive when it became apparent that I'd spent a great deal of time reading medical journals and doing my own research from around the world. Oddly, the NHS's approach to Hypothyroidism and Hypoadrenia (Hypoadrenalism) is peculiar to the UK. Many countries around the world, (including North America), take a very different approach and have a much greater technical knowledge of the endocrinal system and its huge importance in the health of human beings.

I eventually found a product made by Forest called Armour Thyroid. It's available from **** in San Mateo, California. They will ship world-wide. It is a pig-extract and therefore totally natural and not synthetic. It contains both T4 levothyroxine and T3 liothyronine and it's been like a miracle for me. I calculated my equivalency and now have my level worked out. I take it every morning without fail and for the first time in three years I feel relatively healthy again. I have taken it now for getting on for a year. I ran out in Nov 2008 and went back onto synthetic levothyroxine for two months, just to see... I went through hell, with all the symptoms as above.

A month ago I ordered some more natural thyroid and within a few weeks I feel normal again; I can't tell you the difference it has made to my life. I'm not a doctor and I've had to do a lot of reading before self-medicating, you need to arm yourself with information as doctors generally are useless with hypothyroidism and hypoadrenia. The latter in the UK is not even a recognised condition generally speaking. And if you manage to get them to even test for it they only do a basic, snap-shot, wholly incomplete test and don't take into account any of the factors that will hugely affect the adrenals; sleep, recent diet, very recent activity, (i.e. did you walk two miles to the blood clinic or were you driven?), pain, infection, minor illness, fear, excitement, anger, hydration levels, salt/potassium levels - etc. Neither do they take into account the divesity of functions the adrenals are responsible for, they test for one thing and one thing only.

Doctors in the NHS, (especially GP's - the gatekeepers), are often very ignorant of the complexities of the endocrinal system and the interdependency of its various components. They basically follow a wipe-clean, laminated flow-chart of diagnosis similar to phoning someone in India when your broad-band is down. You know that they have no underlying knowledge of the technology and that they're just reading from a sheet in front of them.

I am 37 years old and I have lived in many different major towns in England, including London, and have visited many clinics and doctors and the prevailing impression I get is that Hypothyroidism and Hypoadrenia are enigmas to the NHS and they need a complete re-think both in terms of diagnosis, treatment and patient liaison. I strongly suspect that they are shepherded into ignorance and recalcitrance by the invisible hand of big pharma. It's no coincidence that someone with an unhealthy endocrinal component will needs lots and lots of supplementary medication for all their symptoms. It's also no coincidence that steroid-based treatments are common for many ailments and in many medical areas and it is my lay opinion that under-active adrenals could easily be a contributory factor to asthma for example - the treatment of which is often long-standing prednosolone, ventalin, becotide and other steroid-based products.

The NHS will invariably treat the symptom and not the cause, because then you're a kebab for big pharma to keep taking slices out of and keep selling their multiple drugs to you via the NHS.

I am more than willing to talk a great deal more about my experiences, please contact me if you want to drill-down on anything I've said or to expand on Hypothyroidism and/or Hypoadrenalism.

Good luck, I wish you all well, you'll need it.

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  • Posted

    Thanks Claire, my current doctor is an a**hole made me feel like he was doing me a great service taking bloods and treating me like an imböciles he even toad me that he did not have to prescribe my meds if he chose not to which is why I am looking for an alternative supply I might well need them in the not too distant future.

    I hope your doctor is better than mine. All the best sue

    • Posted

      Hi Susanna, have you considered supplementing with t3?

      i started supplementing 9 months ago and I'm now in a position to apply for jobs.  I had 8 years of being under treated by the NHS and I just got sick of all the nhs excuses for my never ending fatigue.

      i must stress I did not just jump on the t3 band wagon, I read up about it for months (it took me months because of the cog fog) then I got in the habit of measuring temperature the old fashioned way, and heart rate, made a few changes to my diet and then gave t3 a trial.  I haven,t looked back and I feel the best I've felt in years.  I'm 95% back to normal.

    • Posted

      Thank you for your help but where do I get this T3 and how much do I take? I am no medic and have no idea, probably too old at 67 to start learning 😒
    • Posted

      Hi ha, you're never too old to learn!

      i've very gradually built up my dose and just monitored regularly.  I'm sorry to say that there is not a straightforward (take X amount of T3 if you are taking Y amount of t4) way to take t3 but with a bit of self monitoring and research you might get some great improvements.

      I buy my t3 from Cyprus which is legally allowed provided it's for personal use.  It costs £15 for 100 tablets (25mcg). I'm due to move house soon and I've packed up all my books but I did buy a book by a doctor 'Durrant-Peatfield' or peatfield-Durante, can't remember which way his name is. Anyhow, I followed the steps he outlines.  You might be able to request this book from your local library.  I can't remember how much I paid for it, it wasn't a lot.  His advice is worth every penny of the book. It gave me the confidence to self medicate and monitor my symptoms.

      i came across the book mentioned above after finding the 'thyroid patient advocacy' website.  This is a website set up by people who feel mis/under treated by the nhs with regards to thyroid function.  If you join the forum you can read about others experiences and ask questions aplenty.  I'vefound the forum a great support in trying to educate myself.  Just sorry it took me so long to find them.  Google them, thyroid patient advocacy, and start your journey to wellness.  The website is packed full of information which may seem overwhelming to start with but if you can read a little bit every day or two you will soon build up your knowledge.  I found my supplier from a list provided on their website. 

      Hang in there and please don't give up!

    • Posted

      Thank you Kerry, I have had this condition since 1996 following an RTA I was fine before and very active, since the accident every day is a chore and the doctors just don't care so I gave up complaining and learned to live with the problem as just one more from an accident that was not my fault and the drunk driver was fined just £500!!!!!! I have not had a pain free day since March 1996 and it gets you down. Thank you for your help I will look into it.
    • Posted

      How terrible for you, all this crap owing to a drunk driver and to top it all, you have endured the incompetence and ignorance of the medical profession. That really sucks.

      regarding the pain, have you ever tried being gluten free?  

      I'd been diagnosed under active for 4 years, had symptoms for 2 years before that, before having my son.  My son was delivered by c section and from the moment I got out of bed until 3 and a half years later I had sore joints in all the areas that had been numbed during the operation, e.g hips, lower back, knees, ankles, my feet were just agonizing.  Doctors were not interested, got sent to  physio and podiatry in the months that followed. Got issued with insoles and told that was all that could be done.  I was utterly convinced it had something to do with the operation.  

      Then in in all my reading from the thyroid patient advocacy website and their links to other sites, I came across information that suggested under active thyroid can be triggered by trauma including RTA and surgery.  I also read that gluten intolerance  goes had in hand with under activity and that can be triggered by trauma too.  So I quit gluten for about a week before I noticed I was almost pain free.  That was about 9 months ago. I have binned the insoles, I know that if I eat pastry, biscuits or bread I will feel it especially in my feet.  But being gluten free most of the time means being pain free.  I can run again, not that I go running a lot. I need to though.

      in my own case I honestly don't know what triggered the pain but what I know is that I didn't have it for the 4 years I was diagnosed as under active but had it the moment I got up after having surgery.  My diet was rich in bread and biscuits and pastries before and after surgery so maybe the surgery just triggered something.  I never bothered telling my GP's because they are just not interested.

      gluten free might not work for you but you never know. It's maybe worth a shot.   Best wishes, kerry

    • Posted

      I think it's appauling how ignorant GPs are, anything outside of a common cold, sore throat, and regular childhood ailments and they just fob you off with whatever they thing fits the bill and tell you to get a grip. My youngest daughter now 41 projectile vomited from birth, I breat fed her to begin with but was told she couldn't tollerate my milk so she went onto a bottle I could ill afford, it made no difference so I was told she had an underdeveloped stomach muscle that would correct itself. All her childhood she complained of stomach aches and was frequently sick for no reason within minutes of eating, the doctors said she was - attention seaking!! - when she was a teenager she was accused of being bolemic, annarexic, and then it was growing pains!! At 18 when she weighed in at just 4st I demanded she see a specialist who suggested removing her stomach as she had an hyhietus hernia, she refused and I found a Chinese dietary specialist who diagnosed her with nothing more serious than food alleges including gluten, dairy, and all the additives in processed foods. Because of ignorant doctors I nearly lost my daughter, she was so ill I had to carry her to the bathroom, it had got to the stage that she could not even keep down water! It took me 4 years on a very specialised diet to get her back to health and now she has a very understanding husband who cares for her very much so I know all about food allergies and I am on a very clean diet with little or no gluten so I don't think my pain is down to that but thank you for the input. I think my pain is due to the levothyroxine, lack of T3 and the damage caused to my skeletal structure following the accident. This web site has armed me with so much information that I fully intend to shove under my GPs nose he won't know what has hit him. I have looked at getting my own thyroxin but I am a bit worried about the affect self prescribing might have on my heart as I already suffer pulpitations and both my parents died of heart attacks 😒 it is nice however to talk with someone who understands what we are forced to live with by uneducated doctors who think they are God.

      take care Susanna 

    • Posted

      Hi Susanna, goodness you been through the mill so to speak.  As an afterthought, maybe it's worth getting the doctors list from the thyroid patient advocacy. They have collected a list of 'thyroid friendly' doctors, some may be private and some will be nhs.  Don't know if you can afford private fees but you may find an nhs doctor near you who you could perhaps get referred to by your own GP.  I haven't got to the stage of seeking a thyroid friendly doctor's help yet, simply because t3 has had a great effect on me and I'm now applying for part time work.....I've just let the doctor issue slip a bit.  I will have to arrange a plan b though incase t3 stops working or my supply becomes too expensive etc.  dr Durant-peat field does run clinics too, but i honestly don't know how expensive his fees are....

      It might even be worth posting an introduction to the members forum if you join TPA.  Let them know your symptoms and concerns.  They're a very friendly bunch and I'm sure you won't have to wait too long before someone with a lot of experience and knowledge gets back to you with some ideas.  Take care, and maybe 'see you' on the TPA site.  Warmest regards. Kerry

    • Posted

      Thank you Kerry, durant-peat field is expensive and I am on a state pension so can't really afford his fees but I will keep looking and appreciate your help. All the best to you and your future thank you Susanna
  • Posted

    Interesting story, I've been on levothyroxine for 26 years and so fed up with the doctors saying i'm 'within the normal range'. Surely my 'normal' is different to another persons 'normal'! Tired all the time, can't lose weight but they just don't listen. On medication but still symptomatic. really gets me down. Think I will investigate Armour thyroid!
    • Posted

      The doctors have no idea what your normal is as everyone is different, I had this discussion with my previous doctor who told me the "average" was taken over a small number of people who's thyroid function "appeared" normal! They use this as a bench mark and try to keep you somewhere in the middle to low scale but if your normal tyroid function for you was high this level of medication is nowhere near enough leaving you feeling tired, miserable, and very often in pain. I am changing doctors as I moved and needed to change doctors but the one I am currently with is most unsympathetic and down right rude. It would be nice to know just where one can obtain Armour in the UK without prescription.
  • Posted

    Thank you SO much for your post - it was incredibly informative - thank goodness people like you care enough to share these incredible posts.  I've taken Levothyroxine for 24 years - I've never really felt the same since.  All through the years, I've laid my increased symptoms of fatigue, feeling ill, brain fog, dizzyness, etc., etc., etc., (as you know, the list really is endless) down to stress (being married to the wrong person).  Rather stupidly, I'm only just starting to research Hypothyroidism and must admit, have become so overwhelmed with the perplexities and implications of this disease - it's mind blowing isn't it!  I too have had countless visits to my GP - to no avail - as you quite rightly pointed out, they really do not know enough about the subject to reach any kind of valid conclusion.  What a mess - I really feel sorry for any of us living in the UK that are suffering.  I will definitely look into the Armour Thyroid medication - I always thought self medicating was rather frightening but as I'm now literally reaching the end of my tether - I'll try anything.  I was going to go to Harley Street and try an 'indenti-kit' thyroid medication where the medication is tailored to your own specific needs - the final medication is obtained from Germany.  When I 'phoned approx. 3 months ago it was around the £850 mark for a consultation and then obviously the medication every month would have to be paid for plus any subsequent consultations.  As I've seperated, I'd rather go the NHS route but I'm finding it SOOOOOO frustrating!!!  Thank you and a thank you to all the people that post on this site.  As I'm quite new to this research, as soon as I feel I should share any info that I can gleen I certainly will.  Good luck to us all.
  • Posted

    Hi, I am intrigued to discover this "Armor" alternative to Levothyroxine. I am currently on 125mcg of Levo (T4) after having my thryoid completley removed due to cancerous nodules. The NHS have been brilliant in looking after me, and I have no bone to pick with them. However, my doctor requires me to raise my T4 to 150mcg, which I cannot seem to tolerate at ALL. I tried it once and had such terrible nightmares coupled with sleep paralysis, that I became very anxious about going to bed. This current low dose of 125mcg, has me pretty tired most days, with quite dramatic mood swings, to the point where i feel life is pointless sometimes. I do realise the medication is to blame, and my husband is very understanding, but if there is an alternative to this ridiculous state of affairs, I will grab it with both hands. Obviously having read the comments, it seems the professionals are against it, but I will put it to my consultant when I see him for my 6 monthly check up next week. I will update here with what his response to the Armor is.
  • Posted

    Whereabouts in San Mateo? I am looking for an easy source of Armour Thyroid and cannot rely on my (useless) Endo to find one. I would like to just hand him an address, I will work out the dose for myself - I don't trust him to do either after the mess he has made of the maintenance of my thyroid problem. I share most of your symptoms and experiences.
  • Posted

    Levothyroxine contains gluten and lactose.  Over a period of time one can become intolerant to gluten and that leads to lactose intolerance, which is caused by a certain enzyme (called lactase) that helps convert lactose into a form that can be absorbed in the stomach.

    Lactase deficiency occurs over a long period of time causing stomach problems of malabsorption (as it did with me) as the body produces less lactase.

    Less lactase causes an inability of the stomach to absorb nutrients or break down medicines for absorption. You may suffer stomach discomfort and  a feeling of nausea, hunger, as well as constipation, high blood pressure, high cholesterol, severe weakness, wooziness, head fog, unable to focus or think normally, and a pile of other symptoms as the thyroid medication strength is decreased due to gluten and/or lactose intolerance.

    All doctors know to do is increase the thyroid medication. However, the only workable solution is diet that eliminates gluten  (wheat, barley, rye,) and eliminates lactose found in dairy products. Since many products contain dairy products you might want to take lactase pills to offset their effects. However, eliminating gluten and lactose from your diet is the best solution, as is changing from Levothyroxine to armorthyroid, which does not have gluten or lactose in it. However, you must remember your diet and leave off food products containing gluten or lactose even if you are taking armorthyroid.

    Additionally, you need to take a digestive medication to aid in digestion.  "Schiff Digestive Advantage" is the name of one over the counter (Wal-mart is cheaper), but you might want to ask your doctor to prescribe one.  I use Phillips Colon Health. Don't  know which is best.

    There are products that can lower the strength of your armor dosage and can cause your blood tests to show a low TSH reading. They are antacids, calcium, soy products, alkaline and a number of medicines (which I don't recall the names). Increasing the dosage doesn't help if you have malabsorpotion of the stomach. (More than likely, raising the dosage will only create more symptoms.)  If you take calcium pills, take them before bedtime. Take  antacids in afternoon or before bedtime. (Make sure there are several hours between the time you take Armorthyroid and the time you take antacids and/or calcium. If you require an antacid earlier, try putting a tablespoon of lemon juice in some orange juice and drink it. If that doesn't work, use a Tums. Also drinking apple cider vinegar in water can relieve heartburn. (chase it with fresh water because it tastes yucky.)

    I left off Levothyroxine for three days and noticed a slight relief in the numbness of my toes. On the fourth day I took a low dosage of Armorthyroid (30mcg), which I increased to about 45mcg this morning, the fifth day. My toes are no longer stiff and numb, and I feel the numbness slowly leaving my legs. The pain has gone from my lower back and the foggy dizziness is gone.  It takes about 8 days for your system to be replenished with the medication, so I'm hoping by that time I will be able to walk normally again. (I may have to increase my dosage to 60mcg.)

    It has helped me by leaving off dairy products (lactose), and gluten products (wheat, rye, barley).  I plan to buy some lactase pulls to counter the effects of lactose in products I accidentally miss.  Also, I plan to ask my doctor to test for possible celiac disease.

     

    • Posted

      Hi Jan and everyone else.

      I had to stop taking the Levothyroxine - it was making me so anxious , it was intolerable. MY Doc. told me to come back in July. Think I need to go back before then as I'm feeling v tired, brain fog, hot and cold etc.

      Do you know if Amour is safe to take if you have high B.P.?

      I was thinking there may be a problem with Gluten and Lactose myself.

    • Posted

      Hi Claire, I did a search to see if Armour causes problems for someone with high blood pressure.  Couldn't find anything (although I only looked at a couple of links). My brother takes it and he has high blood pressure, but he is experiencing some problems that  I think is a carry-over from when he used Levothyroxine and I think that it is due to the lactose and gluten---just like I have gone through.

      Gluten is bad "stuff". It's damage is  slow and progressive until one day you start experiencing all the symptoms and wonder what in the world is going on with you. My problem started ten months ago and got progressively worse until I could barely walk, was so weak I had no strength to do anything, and my stomach was giving me a lot of problems.

      I've just recently changed over to armour thyroid---just 4 days, and I do feel better: I'm not as weak, my vision has gotten better, the pain in my back has gone away, and I'm praying for a full recovery; however, I need more time to tell if the the results will be to my liking. 

      I read one article that said something like: If you aren't already lactose and gluten sensitive, you eventually will be after consuming it daily in Levothyroxine.

      Since most doctors really are in the dark about these thyroid problems and/or our medicine for it, we have to take charge of our health and try to figure out what is best for us. It doesn't mean there aren't any good doctors, it just means I haven't found any that could diagnose my health problems.  

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