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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12 likes, 51 replies
Guest
Posted
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?
Guest
Posted
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.
GILLIAN_BROUGHTON
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Guest
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Pilot
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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.
Guest
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Guest
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gwenny
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claire66933 gwenny
Posted
Your not alone - thank goodnes for the Internet.
My symptoms are not as bad as yrs - but they're starting to really get me down. Almost constant tension in my body ( not arms and legs) and feelings of anxiety. Symptoms are much worse when standing up gradually going off after lots of excercise.
But they come back. Havenot taken the Levo today - had enough of it.
I'm on Ramipril for High B P too.
Have you seen an Endocrinologist?
Best luck C
carmel83758 gwenny
Posted
Have also had bright sparks saying go to gym, lose weight etc as though we are just lazy and cannot work out simple things or make ordinary decisions ourselves. They do not understand it is an illness not us being difficult or lazy or unable to decide how to go about somethign witout advice.
I was on jut 25 mcg and of course I keep being told that cannot possibly give me side effects etc. Well it did and they were bad. So I stopped taking it.
Guest
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gailehughes
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Is the armour expensive as I'm on a budget?
bojangas
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thank you so much
greendoor
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Search_tpa Guest
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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