Levothyrox: The controversy over one of France's most commonly prescribed drugs

First, I concur with David and Stella.

Second, do you not need to have your condition monitored regularly? 18 months seems an awful long time to consider going without any monitoring and just hoping you get the dosage right. A Doctor’s appointment is only 25€ (not sure about the cost of a blood) and, I imagine, would be worth the price for peace of mind.

Would you also pay for the prescription above the 25 euro?

My levels have been very consistent for the past 10 years so going 18 months would not concern me.

Just as a tip - a friend of mine pops over the border to Spain to buy her stash of (original recipe!) Levothyrox - she buys about 6 months worth at a time - cheap as chips apparently and they accept her French prescription. She can also get it in Andorra but they charge a ridiculous price up there as they are fully aware of, and profiteering from, the issues in France. It may just be worth the trip over the border/s from time-to-time.

Yes you would have to pay for the prescription on top of the 25€.

She’s fortunate to have a MT who will prescribe for 6 months. Mine won’t give more than 3 months. I don’t have to pay so makes no odds to me how much they are.

Actually Mandy the prescription is only for one month but they don’t seem to care about that over the border - they just want the business. Pharmacia’s full of French residents on drugs runs !!

2 Likes

Not to forget the washing powder, alcohol and tobacco runs, all those trolleys piled so high :shopping_cart:
Pity we live so far from the borders !

2 Likes

hello Mandy
went to doc… last week --told him that with the new formula( you recommended ) …my itching had reduced —but not stopped ! my breathlessness had continued and my neck pains were still there—He is sending me to heart specialist on/around 20th march --------love Terry.

Hi Terry

Always good to get these things checked out. Hope all will be well. Best of luck.

1 Like

Hi Mandy,
Make a long story short: I trialled L-Henning from mid-Nov to mid-Jan. Not so great for me. Had serious stomach cramps regularly especially after mealtimes. Anxiety and restless sleep. Worst side-effects. Not tolerable.
So my Endocrinologist prescribed Euthyrox. Wasn’t easy to find here in Lyon. Managed to buy many boxes on trip to Zurich. So now I’ve been on it about 6 weeks. Some problems with stomach gas and restless sleep but better than on L-Henning. If doesn’t get better over time, Dr will prescribe liquid version of Levothyrox (normally for children). I seem to be really sensitive to excipients in these formulas.
Look forward to just being my normal self without side effects. Been long journey since last spring when new formula was released.
How are you doing Mandy?

1 Like

Oh I’m sorry to hear this. How unpleasant for you. I’m fortunate to be doing really well now thank you. My only continuing symptom is a problem with my memory and I’m starting to think it’s not connected to my thyroid treatment. I hope you get back to normal really soon.

Hi Mandy, Glad to know you’re doing well. Memory loss can be a side effect of these meds too. But you may already be aware of it. Thanks for your well wishes. Take good care!

1 Like

Hi i have been on levothyrox for 25 yrs and was very ill last year when they changed it
I now take " L-throxin Henning " feel very well and have no side effects. I have a blood test every 6 weeks and adjust the dose accordingly. It comes from Henning in Berlin. The pharmacie has to order it so i make sure i keep a good stock it comes 100 tablets in a box.

I’d been following the problems in France as I have autoimmune hypothyroidism (Hashimotos). I had discovered my current treatment is not available in France. In fact it actually appears to be “illegal”. After not doing well on synthetic levothyoxine (basically may as well have taken sugar pills) I eventually after several years of researching & “working with” my GP, saw an endocrinologist who prescribed Armour Thyroid. It’s basically dried pig thyroid and provides ALL the thyroid hormones the body needs not just T4. I’ve been doing really well on it . As it is assimilated immediately by the body unlike the synthetic, I’m able (with the endocrinologist’s agreement ) to regulate how much I take so long as I don’t exceed the prescribed dose. I managed to get my U.K. GP to give me 4 months supply before we left but I’m dreading having to go back on synthetic levothyroxine. The pharmacist in the U.K. said if I can’t get Armour in France I might be able to get my GP in the U.K. to issue a private scrip for it !! Given I no longer live there that’s seems highly unlikely & would not practical (they’ll only issue 1 month’s prescription at a time) or economic as I know it costs £137 for 30 tablets so add on a private scrip and cost of getting it and it becomes unfeasable. We are in the very early stages of trying to find our way through the various bureaucracies but started by registering this morning with a doctor at a Centre Médicale today. He noted that I’d not done well on levothyroxine, confirmed Armour cannot be prescribed in France but noted that when I need a scrip that I should be prescribed …Euthyrox!! I will just have to hope the positive lifestyle of France counters the zombie like effects of being back on levothyroxine! As an aside husband mentioned at our joint appointment that he has bad hip & knee pain since just after we arrived - probably irritated what UK GP said years ago was arthritis (he’s only 50 & it first manifested itself in his 40s ) during our move as he helped lift our worldly goods onto & off the lorry then spent the next week or so unpacking & putting stuff up. The doc charged the €25 for the consult plus the scrip came to €29. The doc , a youthful (anyone looks young to me) and kindly chap would not accept our EHIC & said we’d have to claim the costs back using the feuille de soins once we’ve got a Carte Virale… deep breath!

Hi Mandy

My wife has been on Levothyrox for some time and about two months ago her doctor upped the dosage from 25mg to 50mg. Since then the side effects mirror most of yours regarding pain, so she now takes pain killers three times a day. Best described as pain travelling round and manifesting itself in different parts of the body on a permanent basis. Consequently, has difficulty with most tasks and now has no quality of life. Just been given yet another blood test.

Any recent thoughts and experience on the drug from you would be helpful

Thanks in anticipation

Terry

Hi Terry
I have been back in the UK since January and taking the UK version of levothyroxine which seems to suit me fine.
I’m sorry your wife is not well it must be awful to be in so much pain. I wish I could help but I’m not sure I can. Maybe she should get a referral to an endocrinologist to make sure all is well.

I really hope you get something sorted out soon.

Thank you for your reply and very kind thoughts Mandy. We have an ongoing appointment with an endocrinologist but will suggest to her GP if there is any alternative medication available. I feel the sudden and rapid arrival of the migratory pains is somehow linked to Levothyrox.

Best wishes to you

Terry

1 Like

That is a very low dose. Frustrating that this is having side effects.

Hi Mat,

Yes, it just seems odd that the pains arrived quickly around the time of the change. Aware I may be acknowledging the bad press of Levothyrox

Actually, it would be an enormous dose - but I assume Terry meant micrograms (µg) not milligrams(mg).

It might be related to the excipients - the national scandal seems to have been associated with a change in the non-active constituents of the tablets, is it possible to speak to the pharmacist about alternative manufacturers?