Levothyroxine

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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Hi - interested in your post as i am having an ongoing battle with my doctors about testing me correctly and getting me on a correct drug! they can't even test my T3 and T4 correctly - just got told it was 'fine'!! I am on Levothyroxine at 125 mg and have a TSH of 0.47 but i feel shattered the whole time and the weight gain is really getting to me despite being really active,jogging, netball and full time active work!

Do you take Armour on its own or in conjucntion with Levothyroxine? I asked for this at the Gp's but was told no even though i ttok along literature to say they could prescribe it legally.

Any advice please?

Hey Girl35, haven't been back here in a while so sorry if this is late for you.

First off, I take Armour thyroid on its own. I buy it from pharmacy international in San Mateo, California, USA. It is available in the UK also but they import it and want to make a profit so it's more expensive all told. Sometimes you'll get caught with customs charges, sometimes not, ironically you've already paid your income tax for NHS treatment but you'll pay again for the medication you need and then for the tax on it, grr... not that I'm bitter or anything.

I contacted the MHRA who are the government body in charge of what can and can't be prescribed in Britain and they told me categorically that my GP *can* prescribe Armour thyroid if they want to...it's just getting them to want to that's the problem. Good luck with that one, I'm hoping they legalise fire-arms for NHS-sufferers soon and maybe then we can get a fair result...lol.

For me, it's been a miracle. I gained a stone in weight in three weeks when I forgot to buy Armour and went back on Levothyroxine. I also had horrible side effects including nausea, dizziness, weakness, muscle spasms and generally feeling terrible. Within a week or two of being back on Armour I felt totally normal again. Doctors will tell you that it takes 6 weeks for the thyroid to stabilise which maybe it does but it's not 5 weeks 6 days 23 hours and 59 minutes and then sudden level change, you will feel the difference after a few days at best and a week or so at worst. I can't recommend it highly enough.

I wish you the best of luck and ping me another message if I can help further.

hi i was very interested in what you have said re THYROXINE i have been suffering for 20years, not enough thyroxine , i am going to ditch the hrt and also thyroxine it doesnt work, my bones are brittle,loss of libido, i want to take control of my condition, were do i get the armour from :roll:

I am really interested in this. I have been on a gradually increasing dose of Levothyroxine for some time (started on 50mcg, increased to 75 and now take 100) and thought it unusual that I didn't really feel any better. I am constantly tired, find it impossible to lose weight ( thought it would fall off me when I took it), suffer constipation, and occasionally feel not dizzy exactly, but a bit light headed and \"strange\". I thought it was just my age! I am now seriously considering trying Armour Thyroid. I will report back!

I think I will consider Armour too. I'm on Levo 75 mcg and still feel tired, sluggish and my brain seems not as sharp as it was.

I'm on Orlistat for the weight gain which does not work. This has to be down to the Levo for Hypothyroidism as everyone else on the site has lost weight with Orly. If there is anyone on Orli and Levo like me and has problems, please reply.

I have just read with interest your experience of Levothyroxine. I too am on Orilstat have been for a year and I am not losing any weight. I also feel really tired, peculiar and disorientated. I am gainoing weight not losing it. I am always at the doctors saying I am really tired and have had numerous blood tests and all come back negative so I can only assume like yourself the thyroxine is no good and it must have something to do with not losing weight. I eat healthy and take the orilstat and cannot loose any weight.I have been trying to eliminate which tablets were giving me these symptoms and judging by all the comments I have read about this drug it is obviously the thyroxine that is causing it. Some days I have no energy at all and get the feeling of being drunk.

I was in the same situation with the Levothroxine and now buy my own natural dessicated thyroid from the internet. I receive help and advice as to where to buy my medication, how to monitor my illness and general support, from TPA UK, Thyroid Patient Advocacy. You will get all the information you need to approach your doctor as an informed patient. You will also be able to source a good endo, private doctor or medication to help you get better. I was sooooo ill and now I am feeling great. Max

i just wish someone would help me, i was diognosed with and over active thyroid (graves disease) june 2009, they also discoverd i had addisons disease which is an adrenalin disorder for which i have to take steriods for life. no matter how the docs tried they could not stablise my thyroid. i am very sensitive to the medication, where as it would take someone 8 weeks for medication to show results it often took me only one to two weeks. i could go from over to under active within a week.useing medication propranolol and carbimazole. in the end they removed the whole thyroid in febuarary 2010. and was given 150mrg levothyroxin after my op, the the first 2 weeks i felt brilliant. could have walked 100 miles with a smile on my face..never felt soooooo well, it was bliss.i feel that was before the levotyroxin had time to get in my system. but over the next few weeks i was feeling ill again. doc reduced my thyroxin to 125mcg, i felt a little better but not for llong aprox 2 weeks, again all my symptoms came back. i reduced it myself to 100mcg this time i felt better for much longer ie about 3 months. but now im back to square one. my quality of life is terrible, the back pain i suffer is disabilatating, i cannot walk to the shops, i have to lean on one elbow to wash the pots. ect ect, i cannot sleep. my weight is still going up even though i do try to cut down my food intake. i am 5ft 3 ins and now weigh 16.half stone.....everyone says go on a diet, go to the gym.i could scream.. every day is a struggle for me. i suffer from high blood pressure now, am on 2 differents tabs for it, even tho i have never had problems with it before in my life... i feel totally alone.dont know what to do anymore.....i am 57 yrs old going on 90...

Hi, I'm male and 55 years old. I was diagnosed with hyperthyroidism about two years ago after going to my GP on numerous occasions with all the typical symptoms, which he did not recognise. He decided I needed to have RAI after having a short spell on carbimazole. He didn't send me to an endocrinologist (didn’t what one was at the time) but straight to the surgeon for the dreaded radioactive drink. Once started on the Levothyroxine I instantly felt ill and very strange, dizzy and tired etc. Also, my blood pressure went through the roof 190/105 (before thyoxine, no problems with bp). I am now on two bp medications and may need another one soon. Eventually my GP sent me to an Endocrinologist, who was seething over the fact that the GP and Surgeon decided to remove my thyroid without seeing a specialist first. I have tried natural desiccated thyroid 'Armour' which worked very well; nevertheless, it raises my blood pressure very high. So now two years on I am still playing with levo and armour and still feel crap with high bp all the time. Levothyroxine (175 mcg - tsh 0.1) gives me joint pain and extreme fatigue (even though 0.1 is supposed to be ideal) and Armour gives me palpitations and also high bp, so now I’m trying to mix the two together. The worst thing of all was when the endocrinologist said that I probably didn't need rai as 75% of patients recover naturally after a course of carbimazole (6 months - two years). The rest of my life is now going to be destroyed, taking medication that I never needed to have.

I have been hypothyroid since the birth of my 2nd daughter 28 years ago. I was put on 150mcg thyroxine,now levothyroxine and was stable until about 4 years ago. Nothing had changed, but now my thyroid levels are unstable. A couple of years ago the dr referred me to the endo, who accused me of non compliance of medication - he's pig ignorant and the same man who told me to eat less when first diagnosed and found trouble keeping my weight down to what it was prior to hypothyroidism. My GP says it could be menopause, but I'm getting pretty fed up of it now.

Is the armour expensive as I'm on a budget?

hiya .... at long last i have found something positive !!!! i have been suffering with hypothyroidism for the last 4 yrs and not 1 doctor will listen to me , i was diagnosed with a thyroid nodule in january this year and so was sent to a thyroid specialist , i thought great he will be the one who will listen to me and help me with some medication for it ?????? he did not listen at all he told me its stress gave me some pills for heartburn then sent me on my way ,,, i was so upset i really am at breaking point now .... i have just found your post so now i have hopes .... :-) i have got another app with a different doctor 2moz and i am hopeing she will listen to me , i will tell her about the armour thyroid and hope and pray she will prescribe it !!!! but ive got my doubts ....... i just wanted to ask you what mg should i get if i have to buy it as there is a whole lot of different strenghs ......

thank you so much

Not sure if the person who posted at the top in 2009 is long gone, but was interested in getting in touch if possible.

Hi, I replied yesterday but see my reply has been deleted - not by me.  I submitted it, and it went to moderator.  To delete my reply without giving a full explanation as to why, or emailing me to say if I had broken any rules is rude.

anyway, thyroid patient advocacy is a great source of information for anyone suffering from under/over active thyroid symptoms.  Check it out today.

note to moderator - if you are going to delete this reply, at least have the courtesy to explain yourself.  If I have broken a rule then let me know.

Emis Moderator comment: I have copied the post from yesterday below. I had edited the post to remove the direct link to the website as I have done here as users can just Google Thyroid patient advocacy to get the site. I inadvertently deleted rather than approved the post after editing so apologies for that.

Alan

Hi, I'm under active too, being on levo for 8 years, it helped a bit but I never returned to normal. Over the years of complaining, GP's have suggested I was depressed and when I disagreed with them they said I could be "depressed but in denial". Thyroid seems a complicated issue but I have read some great articles and forum messages at the Thyroid Patient Advocacy website. They are very knowledgeable and supportive. They are not medically trained but they are without doubt the best source of support I have found. If you do one thing today, please make it a visit to their website

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

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.

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!

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.  

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. 

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 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