Problems with Levothyroxine?: Have you had... - Thyroid UK

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Problems with Levothyroxine?

Nanaedake profile image
14 Replies

Have you had problems with levothyroxine? This link describes some of the manufacturing challenges. Is there anyone in this forum with pharmaceutical knowledge who can explain a bit more?

pharmacychoice.com/news/art...

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Nanaedake profile image
Nanaedake
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14 Replies
Schenks profile image
Schenks

Now that is both horrifying and fascinating. I have been taking levo at a dose of 125mcg for 30 years since having a subtotal thyroidectomy. I have had fluctuations in various aspects of my health but never, until 2007, a complete collapse of my overall health. Only since joining this site have I become savvy about my condition.

In the last year or so I discovered that I am sensitive at least to the excipients in Levo, and take Wockhardt's, along with NDT. So I obviously have issues with the constituents of the drug. But reading the article seems to ping a lot of connections for me. Such as the times, months at a time, when my physical health dipped or rose, as well as my mental wellbeing. Never, not once, did any of the medical practitioners or pharmacists make reference to the instability of levo. quite the reverse - it's always been plugged as the damned gold standard.

This kind of conspiracy of silence is horrifying. What in the hell is going on in this damned field?

Thank you for the link, although I reckon, as with all things contentious to the smooth earning of Big Pharma, their back-hands and palm-greasing that would seem to go on and the oiling of the medics, nothing will come of it.

Bob00752 profile image
Bob00752

Interesting article. It maybe that it is new manufacturers trying to find ways of stabalising that don't contravene an existing manufacturer's patent.

I found this on the medicines.org.uk website

6.3 Shelf life

Three years from the date of manufacture (polyethylene containers and amber glass bottles)

Two years from date of manufacture (blisters)

Two years from date of manufacture (polypropylene containers)

As I am prescribed 8 weeks of levo at a time the most I'd be behind is 12 weeks plus however long it has been from manufacture to dispensing, probably less than a year. For blister oacks you don't pop them until you need them and you shoukd keep the blister pack in the original carton (for the obvious safety reasons as well!)

Katherine123 profile image
Katherine123

Interesting, thank you so much for sharing....

Summer64 profile image
Summer64

That is very interesting. I wonder if that applies to T3 as well. The last lot I was given actually expired two weeks before I was due to finish them. Although I have the next prescription here ready it would put me out of sync with the T4 if I use them early. This may explain why we do better at times than others.

1239 profile image
1239 in reply to Summer64

Me too. I now ask for a long use by date. As I take 1/2 a tablet daily it's 2 months between prescriptions but the last 2 had the same use by date.

Summer64 profile image
Summer64 in reply to 1239

They don't allow for that do they. I always put in for my next script when I start the last lot in case there's any issues with supply but then if you don't start them for another month and have to halve them this happens.

in reply to Summer64

I queried the expiry date on my MP T3 last year as when it was issued to me it only had two months to go.I was told it was OK but when I looked at my patient leaflet it does say not to use after the expiry date.It was at this point that I decided to turn to using Armour Thyroid.My order always arrives very well packed and has a shelf life of at least one year.The company pride themselves on giving you the longest expiry date possible.Of course,they also tell you to store out of sunlight and away from moisture in an air tight container.

pamelashep profile image
pamelashep in reply to

Hi where do you get your Armour from and do you have a prescription for it. Thanks Pam

Eddie83 profile image
Eddie83

Big pharmacies seem to be very cavalier about the conditions under which T3 and T4 are shipped. They don't care that the max temp it should ever be exposed to is 85 deg. F. I learned this was a problem years ago when I was using Thyrolar, which is specified to be shipped only overnight in a cooled insulated container. To get the best price on thyroid hormones, I have to use one of those large corporate mail-order pharmacies. During the summer months, I always have thyroid shipped to my doc's office so it doesn't sit outside in my metal mailbox, which is in full sun. I have to trust that the shipper (USPS) is not exposing it to temps over 85F in transit.

helvella profile image
helvellaAdministratorThyroid UK in reply to Eddie83

The UK's largest distributor of pharmaceuticals proudly proclaims the environment in which products are stored and shipped including air conditioning on every van. (That is, the Celesio subsidiary AAH - there is a technical issue with their website otherwise I'd have posted a link.)

I'd actually be more suspicious of individual pharmacies. Even if air conditioned during the working day, I suspect some do not control the environment adequately over weekends, holidays and evenings.

LAHs profile image
LAHs

Geez, 1% per month, that could put you into the next dose up towards the end of your current dose.

The variety between manufacturers also explains a lot to me. I was on Levo for many years, it was made by the now closed down Forrest Phama. and I had no problems at all (Yes, can you believer that, no problems on Levo!). When Forrest closed I was forced to take a different company's Levo - and the problems started immediately. I never did find a brand that worked for me and so I turned to NDT, and that works. Interesting article, sure gives you faith in Big Pharma doesn't it?

Nanaedake profile image
Nanaedake

The thing that makes me angry about this is that the manufacturers know the drug lacks stability but when patients feel ill without explanation, instead of admitting there is a problem manufacturing, storing, producing and delivering levothyroxine, patients are told they have a psychological problem because of their long term condition and need more drugs like SSRI's or anti-depressants or psychological counselling. Blaming the patients for not being well and telling them they have another problem instead of recognising that Levothyroxine produced today is inadequate for many people and making patients ill masks the real problem. Why aren't our CCG's challenging the drug manufacturers?

In addition, when patients want to try NDT they are refused and yet it could be better than chemically manufactured levothyroxine because the active hormone itself does not need to be formulated so there is far less potential for degredation and instability. In addition to storage and use-by-date issues there are also manufacturing problems (read the 2013 investigation into levothyroxine) the methods used to formulate the tablets cause variations, degredation, differences in dissolution, lack of bioequivalence and bioavailability resulting in lack of efficacy. The production of Levothyroxine is prone to problems resulting in instability which has the potential to make people very ill indeed.

What are the MHRA doing about regulating the stability of the drug? Who is advocating for thyroid patients to make sure the drug is adequate?

Claudia_Leonor profile image
Claudia_Leonor

I have not finished the article yet but I am totally gusted.

I have been taking Levo since 2008 and I have experienced quite many terrible periods... the GPs simply don't get the problems we face from long time Levo. They only see the blood results. Even my lovely Endo did not get things. We had some excellent start but he has a hard time believing Levo is not good enough in providing a satisfactory life since my bloods tests are "normal".

Like many of you here, I have been prescribed different drugs to deal with the different problems I faced... did not take any of them btw. Since most of my problems are digestive, I have been searching for my perfect diet. I found a way of eating, or not eating, things that hurt me. Easier said than done but it works most of the time. Found my triggers: fructose and milk... Nothing new (humans over 50 have serious trouble digesting milk). Also, during two years I lived a completely sugar free life. Currently, I quit all syrups, sweeteners and honey and eat very little to no sugar. I have also quit milk and cream. The only dairy I eat now are cheese and cultured butter. I have had long periods with no problems, but it is not always perfect. Had trouble to sleep and decided to stop coffee drinking after 14:00 and notice that I have developed sensitivity to caffeine...

The same way I attributed the symptoms of Graves to life after 40 (until it almost killed me in a Thyroid storm) I have had great difficulty identifying what are effects of a Levo based life and what are the ones of life over 50. I know life with HypoT and Levo sucks. It is worse than Graves (except for the Thyoid storm part).

I have never taken Levo with bad date, never. I am sure it got to have something to do with Levo per se. Or Levo is just not enough for me. Just saying.

Nanaedake profile image
Nanaedake

I'm sorry you've had such a bad time but it's a common experience of many of us here. Levothyroxine is not a panacea. I think drs offer other meds because they don't really know what to do but a lot can be helped by good advice and acknowledgement that levothryxoine can be unstable and cause problems. I have found things are better since I optimised my vitamin and mineral levels but I have some stomach problems and some joint ache and I don't think it's down to the food I eat. I do take a teaspoon of organic apple cider vinegar with water whenever my stomach is not quite right and I take a teaspoon with a glass of water before my main meal. If you google it, you'll see it has a number of benefits. I don't think symptoms are down to being over 50 except for overheating which could be one of those things.

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