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

    Are you telling me that you are able to buy your Armour without a prescription? ... and if so, how much does it cost?
  • Posted

    I believe it is possible to get 100 tablets of Armour 3 grain (equal to 180 mg) for about £70. Getting an Rx for Armour in the UK is very difficult due to collusion/conflicts of interest within the medical community which translates to reluctance/refusal to prescribe by "concerned GPs". I've had private messages from other people griping about this issue.
  • Posted

    I've been reading up re thyroid issues, and have had tests come back within range (I'm aware of the controversy surrounding this).

    So I'm not diagnosed, but is there any possible harm in doing a trial of NDT? What if my thyroid is healthly, will this cause any damage?

    Thanks in advance!

  • Posted

    Totaly understand what has happened to you sympathise and hope you are coping.That goes for everyone who has responded to your story. Toatotaly scandalous the way a great many GP's and endocrinologists treat patients with thyroid problems. I have been on Levothyroxine for probaly twenty years or more with no benefit at all, still waiting for my GP said at the time you will feel better in a couple of weeks, they know so little and never question why this medication does not work for many people I am as overweight and tired as I ever was along with all the other awful symtoms. The origanl doctors who found out about treating the thyroid and treated it with natural animal thyroid replacement knew better about symtoms and how to treat it than they do now, they all seem totaly ignorant and arrogrant and come up with the most stupid anwers to your complaints to them and consider there is only one treatment being Levothyroid pills will not even give you a tial of T3 or the old fashioned Armour treatment that seems to work for a lot of people who have trouble with Levothyroxine. I ended up with a couple of cysts in thyroid had a lot of pain in neck so got myself a private ultrasound from this was refered to NHS endocrinologist found out my throid has shrunk told the medication had taken over its work, has this damaged my thyroid then I wonder though found out this could happen anyway in autoimmune deseae. Told 'specialist why I am taking this medication as it does nothing for me might as well stop it I might feel better all he could say and you might feel worse. Just found out from hospital records that they did not even bother to check on my T3 in the blood test taken. This is a top London hospital. Think too it is an ageisium thing now too for me, too old to be taken seriously and its more than their job is worth prescibe T3 or Armour as this hospital have been told they must treat everyone who has hypothyroidism with Levothroxine at least this is what I was told and this is in line with the established endocrinologists. There are only two options pay out for expensive private treatment if you can find a more open minded specialist or self medicate. Iam seeking sources of T3 and Armour on the internet understand it can be bought more cheaply from other countries. Would appreciate any links anyone can supply me with by private e-mail. Realise at this late age that my life has been more or less ruined with ill health from suffering with being hypothyroid but them know I am not alone this probably goes for possibly half other fellow sufferers. The medical proffesion has got it all wrong just to easy for them to think they hand out these little Levothyroxine pills and everyone is cured those that complain most have somrthing other wrong with them they they can not tell you what this might be. More research is desparately needed for treating the thyriod they really know so little about it but will not acknowledge this as they think they have cracked it so well that even an ignorant GP can treat it by following written  directions from the infomation they are given.  Sadly it seems that could be said when they used A|rmour pills, not aware people then  complained as much as they do now that their medication did not work, so something most be wrong. and in fact medical sciecne has gone backwards since then. The pharmacutical companies came up with Levothroxine the cure (or kill) pill, beleive it does work for many but seems to me to many patient complaining for us all to be wrong. They used to treat you going by your symptoms they are no longer interested in your symtoms  they treat you blood tests intead and tell you your blood test is telling them you are well. Know for sure they are not going to do anything better in my lifetime. Of course should the NHS collapse these endocrinologist's in it might have to start listening to their  patients or they will be out of business these patients will find their  way to the more itelligent among them who do listern and try to help. In the mean time all we can do is to try to educate ourself about this desease from enlightened specialist on the internet aqnd try to trat ourselves.  
  • Posted

    I am British but have lived in America for 16 years.  About 8 years ago I started on Armour Thyroid tablets, but never really felt normal on them even though my blood test showed I was at the good end of the range.  Afew years ago the muscle pains, headaches got worse but still they said everything was okay.  Afew days ago I went to an Endo Doctor and he said to try 75mg Synthroid (Levo sodium tablets).  One of the reasons he gave for trying these tablets was that the Armour was not fully working for me, and the second was that the Armour tablets can be more stressful on the heart as you get older (I am 63).  It seems that the first stage of Armour give a shock of some type to the heart.  I may have to go back to the Armour if the new tablets do not work, but I am hoping the new ones improve my energy level and reduces my muscle pains etc.

    Would be interested if anyone else has heard about the heart problems if Armour as you get older. 

  • Posted

    Hi Im really interested in this post as i feel like im living in a nightmare, im 28 and a year ago i started getting really tired soon as i finished work ill get straight into bed feeling exhausted couldnt do the normal things i use to do as its a struggle, im loosing my hair, my body hurts constant, headaches, dry eyes, tingling sensations in my hands and feet and also suffer with brain fog. I could go on ive had several blood tests and they always come back normal which is so frustrating as my symptoms are linked to hashimotos/hypothyroidism they have now diagnosed me with fibromyalgia and want to treat me for depression i have no reason to be depressed as i was a happy healthy out going girl until a year ago sad so i feel like there just giving hope on me and fobbing me off. Ive been reading threw peoples stories who are going threw the same as me and the name (armour tablets) keeps being mentioned i want to see if this helps me in anyway if so it will be a miracle but dont know where to look or go at doing this can anybody please help i live in England and i can only find american sites selling them. Any advice would be greatful
  • Posted

    Hi Guest

    I've been on Levothyroxin 25 for 3 months.

    Discovered after a Chest Xray!

    and Blood Test.

    I have not felt any benefits from the Drug only almost constant anxiety and tension. I also feel Doc"s are not taking me seriously ( think its all in my head etc)

    I stoppex taking it once and relaxed after about a day.

    Doc's persuaded me to start again - but I'm not convinced. I'm also on Ramipril for High B P.

    I'm just sick of the whole thing. Think I'll ask to see an Endocrinogist - thought drugs were supposed to make you feel better.

    Thanks very much for all the info. in yr post.

    I'll be interested to read yr updates.

    best luck C

  • Posted

    Could you please tell me what grain your on as im looking into buying armour but not sure what grain to start with?
  • Posted

    Hi

    A couple of things I would like to ask. 1 where did you get the Armour from. 2 how many grains do you take. 3 How much is it for the tablets.

  • Posted

    Hi i am also on levo my symptoms are are loss inernal tremors breast pain ovaries even hurt sometimes pelvic pain stiff neck and shoulder pain foot pain legs feel shaky tongue ridges heart things going on strange sensations lower back pain and 

    flank pain head pain and the list goes on i have also tried armour and still feel like i am dying.

     

    • Posted

      Hi Athina

      I have stopped taking itfor 3 days to see if there's improvement. Slightly less tension - think it prob. takes a while to get out of yr system. I 'm going to see what alternatives are available. I 'm getting a food allergy etc. test to start with. Plus I've started drinking only Spring water due to the Flouride in tap water and toothpaste.

      I'll post what I find out.

      Havn't told my Doc yet - but I will.

      I sympathise - it's all v scary, hope you r feeling better soon.

      Have you tried Yoga or Zumba - it helps me a bit.

      C

  • Posted

    Thank you Claire please keep me posted 

     

  • Posted

    Hi, I was very interested to read your report as I to have an under active thyroid and was close to death before I could make my doctors check for underlying conditions following a RTA. Having threatened them with a law suit they eventually took blood and run some checks on it only to discover my thyroxin levels were none existant. It took them 10 years to sort out a thyroxin level and I have had to fight hard for a further 10 years to keep the level as high as it is. Every time they take bloods they try to half my dose which leaves me tired, aching, cold, and all together feeling like sh*t. I would love to be able to by pass the doctors as they cleary have no idea at all and now my doctor has retired the replacement doctor is about to reduce my medication yet again throwing my poor aged body into turmoil yet again. I am 67 and have been on levothyroxine for the past 20 years. I would like to know where you get your alternative medication and how did you work out the dosage please?
    • Posted

      Hi Susannah

      My Doc said to come back in July for another blood test. She also said that there is an alternative - but she wasn't allowed to prescribe it. I may go back before then and ask to see an Endocrinologist - feeling tired and aching etc. If I get any other meds. I'll post about it.

      Best wishes

      Claire

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