Do you depend on Levothyroxine? If so, do you know what's happening in the global market?

[Nanaedake]

This report is priced so access is only through payment. However, what do you know about the global Levothyroxine industry? Is there anyone well informed who can tell me more? Do you know who is advocating for better thyroid medicine and better regulation?

linkedin.com/pulse/levothyr...

[lynmynott Partner Thyroid UK]

Thyroid UK wants a choice of medication for everyone. Some people do really well on levothyroxine and some don't but in the UK it's very difficult now to get T3 or NDT prescribed. I don't think any groups are campaigning for better regulation.

[Nanaedake in reply to lynmynott]

Well, the situation of getting T3 or NDT prescribed is not improving, if anything it's getting worse as most CCG's now have restricted it according to their internet accounts. How do we know how well the MHRA is regulating the drug industry as far as levothyroxine is concerned?

The drug companies won't respond to patient questions and the yellow card system does not work well for a drug like levothyroxine that is slow acting so that by the time someone realises there is a problem it could be several months after switching to another formulation.

In addition, may dispensaries mix people's drugs so how will they know if it causes a problem? Also, the NHS seems to be giving out SSRI's rather than looking into the cause of symptoms from the drugs so how is any patient meant to know what is causing their symptoms?

When Eltroxin was bought out by Mercury Pharma, who monitored whether patients had any problems due to the changes? Mercury Pharma said the drug had not changed but they would not verify that the solvents had not changed or their manufacturing process had not changed or that the storage of the bulk ingedients had not changed.

In my opinion, there is inadequate information for patients and not enough reassurance of adequate control from the regulators. The yellow card system is not an adequate means of monitoring patient response to levothyroxine when formulations are changed, manufacturers change or newly patented drugs are released.

Also, healthcare professionals need much better information about the instability inherent in Levothyroxine production, storage, manufacturing, distribution, efficacy and deterioration under certain conditions so that they can better advise patients about possible symptoms connected to the lack of stability of the drug. My experience is that the care of patients with symptoms is just not adequate because of the lack of knowledge about the kind of symptoms caused by the lack of stability of the drug.

[Nanaedake in reply to lynmynott]

LynMynott, Here is the report from the MHRA on a new formulation of Levothyroxine. How do we know if this is a good product? It states that although the bioequivalence is the same as the reference product Eltroxin (by Mercury Pharmacuticals) it isn't interchangeable because of the difference in excipients.

mhra.gov.uk/home/groups/par...

I thought Eltroxin had been withdrawn so I don't understand how the reference product can be Eltroxin?? Also, is the Eltroxin it's being compared to actually a good product? I've got no pharmaceutical knowledge, that's why I'm asking whether there is any patient advocate group monitoring this and keeping tabs on what is being approved by the MHRA?

[Angel_of_the_North]

I wonder if this spam to generate more clicks for the Pulse article and possible purchases.

[Nanaedake in reply to Angel_of_the_North]

Well, the internet article might be marketing to get more clicks or payments for the Pulse article but my question is who knows what's happening in the global market? Which of the patient advocate organisations are keeping an eye on levothyroxine production and quality? How do we as patients know if its being properly regulated? By the looks of the history of levothyroxine there have been lots of problems and the way that companies have to take out patents each time they want to produce levothyroxine means it keeps being reformulated and perhaps not always in the interests of patients. It seems like lots of people have trouble with it and the NHS has severely restricted people's choice. Have you got any insight into the global market Angel_of_the_North? What do you know about how it's regulated?