Levothyroxine and leg pains

I was diagnosed with an underactive thyroid in the summer of 2008 and put on 50, then 75, then 100 mg of levothyroxine. Within days of starting on the med, I discovered that extended walking resulted in severe pains in my legs, moving from the thighs to the ankles.

Naturally, I linked these new pains to the medication and queried the doctor. Oh no, you have bad circulation (though he couldn't explain why the pains had started after the meds). So I went to see a specialist who measured the circulation and told me it could be better. Hey but I was 64 and although I'd lived very active life, I had been writing for a number of years, so a sedentary life which meant not enough exercise

When I asked him what I could do, he told be to 'get used to it'. Yet not being able to walk distance or at all uphill without terrible pain, totally altered my life! Going out became a thing of fear for me. Would I have far to walk? Would it be uphill?

At the time I had my blood pressure, cholesterol checked and both were high, though at the time I was, if anything underweight. I eat a healthy diet, I don't drink but I did smoke then (Gitanes). In the past both my blood pressure and cholesterol had been normal.

I've never been ill in my life aside from the odd cold and flu a couple of times but last year I had a heart attack and had two stents implanted. I'd read about the connection between high cholesterol and hypothyroidism but my doctor dismissed it, in fact 2 doctors in my GP dismissed it, one agreed.

I was put on a slew of drugs including lipitor (statin), beta blockers, blood thinners, blah-blah-blah...

Two months ago I stopped the statin as it was not only making me feel really ill (and killed my sex drive) and adding to the catalog of pains I was experiencing, I discovered that the pharma that made it (Pfizer), actually warned me not to take if I was on levothyroxine! When I mentioned this to the doc, he got his handbook of symptoms down, looked it up and said 'not a problem'. 'So why does the manufacturer warn me then?' No answer, of any use.

I read up on it and then discovered this site where it became clear to me that there were big problems with my medication. I tried to get my doc to switch to Armour, naturally he refused point blank (he is also hypothyroid and apparently quite happy with his meds. Good for him!)

So how do I go about getting the my doc to switch, or do I have hunt around until I find one that will at least let me try Armour for a couple of months to see if it does make a dif especially my legs?

B

[nostoneunturned]

Hi, according to

http:..livestrong.com/article/4182...

having had a heart attack you should not be taking levothyroxine. There is a link in the text to drugs.com

drugs.com

where there will be more information as there is a UK drugs index.

Sorry no time to hunt some more, but this seems to me like a definitive reason for a change to some other medication such as NDT of some kind. Levothyroxine is definitely not the best medication for you.

Info re NDTs on main Thyroid UK site. Hope you find what you need.

[nostoneunturned in reply to nostoneunturned]

more haste less speed:

livestrong.com/article/4182...

Sorry.

[Hidden in reply to nostoneunturned]

Hmmm... I'm in for a real battle I think. I'll let you know how it goes.

B

[nostoneunturned in reply to Hidden]

I do not see why the doctor should not agree to something else more suitable, he cannot possibly insist that you continue on a medication which is harming you according to inforamation sources, their first duty is to do no harm.

Levothyroxine unsuitablilty is the perfect reason for you to be given Armour, whatever, it only cost about £20 per month according to the British Thyroid Association Executive Committee in their document

A Statement from the British Thyroid Association Executive Committee

Dated 2007.

Check out the main site re getting alternative meds:

thyroiduk.org.uk/tuk/treatm...

thyroiduk.org.uk/tuk/treatm...

and

thyroiduk.org.uk/tuk/treatm...

[Hidden in reply to nostoneunturned]

Hi,

This link is broken i think: thyroiduk.org.uk/tuk/treatm...

Seems I have to prove that a natural hormone is the best for me but my doctor doesn't agree as I've already asked him (actually three of them). They deny there's a negative connection between statins and thyroxine. yet between April and November of last year I was on a massive dose of lipitor that made feel really ill. Yes, it lowered my cholesterol but buggered up everything else!

Not only that, could my faulty thyroid be the cause of my high cholesterol? I raised this with the doc. No go! This really pisses me off, especially when there seems to be so much evidence pointing to all kinds problems associated with the thyroid.

Thus, like others here, when I had a pretty complete test two weeks ago, I too had an iron deficiency as well as a vitamin D deficiency.

I suppose I can switch doctors (again) but there's still no guarantee. The point is, they all swear blind that there's no problem either with statins or with a statin-levothyroxine mix. I've already had one confrontation and at the time I told him that it was not the kind of relationship I want with a personal doctor, adversarial that is. Damn I had a better doctor in NYC and a private one t'boot!

This whole thing is getting out of hand. How are patients expected to deal with this, when the damn medical 'profession' is so divided over causes and solutions?

It seems pretty obvious to me that the thyroid, along with pituitary, hypothalmus and the adrenals control the entire body ergo, so many different symptoms.

[nostoneunturned in reply to Hidden]

Sorry about that link, the others work, but you can go to the main Thyroid UK site and use the menu at left to read about thyroid treatments, alternatives, named patient basis and so on. in your fight to get appropriate treatemnt

Why do you have to prove levothyroxine is damaging to you? The proof is there and if they want the proof in peer reviewed papers then they will be out there on the net.

If you get them to prescribe what you want and you pay for it how can they refuse you as levo is not for you, they are insisting on your taking a damaging drug. Their position is utter nonsense.

Your cholesterol will decrease with proper treatment, it is caused by hypothyroidism. Rabbits, vegetarians to a bunny, were thyrodectomised and the poor things promptly had an increase in their cholesterol. Mine dropped from just above 7 to just below 5 when I was treated properly at last.

[Hidden in reply to nostoneunturned]

We'll keep you informed but it strikes me that if what you say is true, then being mis-prescribed led to me having a heart attack or at least contributed to it?

It's bizarre. On the one hand, they want me to take a statin and on the other levothyroxine, both of which are colliding with my body!

[nostoneunturned in reply to Hidden]

I guess it will be unprovable that your heart attack was caused by the incorrect type of medication, but the literature says that you should not be on levothyroxine having had a heart attack. There will be lots more scientific back-up on the net confirming this.

Your GP cannot possibly justify keeping you on a medication deleterious to your cardiac health.

By following the links, and advice given by others, you can have some other medication suitable for your circumstances.

[Hidden in reply to nostoneunturned]

Hi,

I'm not saying it caused it but that maybe it was a contributory factor?

MY doc has never even heard of Armour or one of the other natural sources. As I said below, we'll see what happens

B

[shaws in reply to Hidden]

It was about the '60s that levothyroxine was introduced and deemed to be the best for hypo patients and they stopped the use of Armour etc., so that's why your GP is unaware of it. About ten years later new diseases were names and they were fibromyalgia, chronic fatigue and ME because they diagnose you only by the TSH and ignore clinical symptoms.

[shaws in reply to Hidden]

My heart began to play up before diagnosed and I was told that is another symptom.

This is a link and you will see topics at the top of the page which may interest you. I was like many on this Forum, did not even know what the thyroid was for or whereabouts. We have to educate ourselves if we want to get better. Cursor down to the last q/answer.

web.archive.org/web/2010112...

[Hidden in reply to shaws]

Well I'm going to start by giving my doc a copy of 'Stop the Thyroid Madness', at least lend him a copy and take it from there.

[shaws in reply to Hidden]

If you have a good relationship with your GP he may not mind but he may not want to go outside the guidelines of the BTA.

[Hidden in reply to shaws]

That doesn't make sense. If other doctors are quite willing to recommend/prescribe natural thyroid to their patients are investigation, then why hell would my doc not do the same?

[shaws in reply to Hidden]

It doesn't make sense but that is just how it is. It is up to the GP/Endo what he prescribes unfortunately for many of us.

[RedApple in reply to Hidden]

The 'broken' link has an incorrect spelling in it. It should be this:

thyroiduk.org.uk/tuk/treatm...

[nostoneunturned in reply to RedApple]

Thank you for correcting it.

[RedApple in reply to nostoneunturned]

I'm confused as to why drugs.com is saying that anyone having had a heart attack should not be on thyroxine. I've never heard of this before, nor seen it elsewhere. Usually levo PILs, BNF etc have something along the lines of extra caution needing to be taken with cardiac patients, by starting on a lower dose and more careful monitoring of blood levels.

[nostoneunturned in reply to RedApple]

Could this be a case then of some information online not being reliable?

Side effects of sodium levothryoxine, American brands Levothroid, Levoxyl. Levo-t, Novothyrox, etc., list heart attacks, cardiac arrest, as being among side effects.

British actavis only says to tell your doctor if have heart problems or have had a heart attack.

rxlist.com/levothroid-drug/...

[Jackie]

Hi First of all I have had 4 cardiac arrests and 2 MI`s I have taken armour for many years = T3 when it became available. All the cardiologists I have eve seen, many and Profs etc I have been told to take just enough meds to keep my thyroid OK.I do also have very low TSH which no one likes!I have to take statins although very low cholesterol. When I went on to Statins my thyroid bloods did not alter. I take the statins at night and thyroid meds during the day.Due to my many medical conditions ,I have TSH T4 and Free t3 done every 6 weeks or less, so I know exactly what my blood does. You can lower the cholesterol by eating oats and an apple daily. Thyroid disease can cause high cholesterol and on treatment it should lower.You mention calcium which may be high but some of this could be vit D ( a hormone). if calcium is in range then,if D is low you should take vit D. Calcium is an electrolyte, heart and kidneys and must always be in range. the main electrolytes are, Ca, Magnesium , sodium and Potassium. they must always be in range,even more so with heart conditions. potassium ideally 4 ( what ever the range). I hope that gives you some ideas.Oh yes, i cannot take Levo but I still have to pay for my armour although I get T3 on a script OK

Best wishes,

Jackie

[shaws]

From the 4th month on levo I had widespread body pain and could only shuffle, wrist pain made by cry and couldn't raise arms etc. Was sent to the neurologist who pronounced not neurological. I finally found that levo WAS the problem. I am well now, no pains, aches, tiredness, etc., etc. My GP said it wasn't the levo. I proved him wrong by stopping it when given some T3 and I swiftly stopped the levo and went onto T3 alone but had to go private to do this. I am now on NDT.

You may have to go private in order to get a change of medication.

[Hidden in reply to shaws]

What about the costs? Right now I don't pay for any of my meds.

[shaws in reply to Hidden]

First, get a copy of your blood test results and post here for someone to comment.

I would ask your GP to add some T3 to your T4 - it might help. Some people have problems with fillers/binders in meds, Some experts are of the opinion that we get given too low a dose of thyroid hormone because GP's want to keep our TSH within the normal level. This is an excerpt from Dr Toft of The British Thyroid Association. If you want to give your GP a copy of the Pulse online article email [e-mail].:

This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

[Hidden in reply to shaws]

I have already had a pretty extensive blood test a couple of weeks ago, I posted them elsewhere on this forum, but here are some of them again:

Serum TSH level: 10.93mlU/L Range: 0.27 - 4.20mlU/L

Serum free T4 level: 16.1pmol/L Range: 10.00 - 23.00pmol/L

Serum Folate: 3.0ug/l Range: 3.10 - 20-50ug/l

Serum Vitamin D: 41 nmol/L Range: 30-50 nmol/L: Vitamin D insufficiency

Serum Ferritin: 137 ug/l Range: 22.00 - 275.00ug/l

BTW, here's my Serum glucose level: 5.7 mmol/L

My red blood cell count is low that maybe due to the asperin and the other heart drugs I'm taking: 4.30 x10^12 and also the low iron count.

Serum potassium: 5.1 mmol/L Range: 3.50 - 5.00 mmol/L

Serum Creatinine: 150 umol/L Range: 59.00 - 104.00umol/L

Unfortunately no T3 measurement but next time...

b

[shaws in reply to Hidden]

For someone on levothyroxine your TSH is too high. It should be 1 or under.

If you copy and paste the above blood tests into a new question, more people will be able to give more answers as sometimes the posts move very quickly onto another page.

I am not medically qualified to give an opinion on the other tests.

Do you always take levo from the same company as lots have found a benefit ensuring chemist gives them the same each prescription. Mine used to put Eltroxin aside for me as I found it suited me far better than the others, although all levos are supposed to be the same I did find a difference.

[Hidden in reply to shaws]

Will do. Yes, I noticed a big difference between brands. Right now I'm taking a mix: 100mg is by Actavis and the 25mg is Eltroxin.

At one point, not long after I started on the treatment, the pharmacy ran out of the the brand I'd started on and gave me a different brand and I started to feel very ill.

I noted elsewhere on this site that the different brands vary a great deal in their active and filler contents.

[Heloise]

Did you happen to read this today? thyroiduk.healthunlocked.co...

[Hidden in reply to Heloise]

Yes, just now but it doesn't seem to be related to my situation.

B