Unaware of choice

[Pixipot]

Until I came on to this site I wasn't made aware by my Doctor that I had a choice of brands to chose from when taking levothyroxine, it's really annoyed me to think I'd been saying to him for months, I'm feeling vomity in the morning and I've had a sore head for days, my heels are really sore in the morning & he just recommended upting my iron dosage, I'm so glad that I realised through coming here that Levo comes in different brands & has varying effects.🙂

[Bari77]

Hi, I have just been to my local pharmacy (in England) on recommendation of an endocrinologist, and they told me that it is difficult to be requesting different brands and that they cannot guarantee it will be delivered to them. They get what they are given - in other words what is probably the cheapest option for them and it would just be more work if they were wanting to satisfy all their customers. I totally get that and understand from administrative, logistic and financial point of view but if some excipients in medicine are making you ill as a patient, you should be able to and have the right to explore other options. It is very frustrating like the whole thyroid game we as sufferers are part of. The pharmacy said they will place an order but cannot guarantee if it will be delivered (somehow I doubt it). Apparently another option I have is to take the prescription and go to other pharmacies in the area and see if they have the brand I would like. At least there is an option. I hope you get your prescription sorted.

[humanbean in reply to Bari77]

This is why I am not happy about having been forced to have a nominated pharmacy as a result of Covid-19. I'd been able to avoid it up until then and had always picked up a paper prescription and could take my prescriptions to any pharmacy I wanted. I could phone up any number of pharmacies and check that they had what I wanted in stock.

There is one particular thing that I have been prescribed occasionally (not thyroid-related) that every pharmacy from my immediate area told me earnestly that the thing I was prescribed was out of stock and had been for months. And yet a small independent pharmacy was able to get it within 24 hours.

I haven't yet been in the situation where I can't get something I've been prescribed from the nominated pharmacy, and I don't know what the procedure is when it happens, as I'm sure it will eventually.

[Bari77 in reply to humanbean]

I have a nominated pharmacy but they said if I am not happy to take the brand I can take paper prescription and go somewhere else.

[humanbean in reply to Bari77]

That's good news.

[MichelleHarris]

The Levo was making me very unwell when I was titrated up to 75mcg with shooting pains and swollen lymphs. I looked and felt awful. My former GP disagreed that there could possibly be something in the Levo that didnt agree with me. I had my partner with me and it was the worst I have ever been spoken to.

I saw a different GP who was concerned as soon as I walked through the door and sent me for an urgent scan and to see the Endo. NHS Endo listened to me and said the Levo had caused a Sjogrens flare which the scan confirmed as damage was visible. He was happy with me being on NDT.

I think you just have to persevere to be taken seriously and, like anyone, some GP’s are entrenched in what they have been taught and can pass exams but arent intelligent enough to have an open mind. Like my first Cambridge educated GP x

[SeasideSusie Remembering]

Pixipot

My understanding is that if the brand is stipulated on your prescription, the pharmacy has to dispense that brand.

I had a brand stipulated on my prescription years ago. Then that brand disappeared altogether. The pharmacist explained and said to try what he had and see how I get on. Next time he asked if I had got on OK with it and I said yes, so he put it on my record at the pharmacy to only give me that brand.

The brand was Actavis and I've had it for years. Now, of course, the name has changed to Accord (it is Actavis, just a change of name) but it's now been removed from my record that I'm only to have that brand. I'll have to look out in the future to see if they actually do dispense a different brand.

[shaws Administrator]

It's a pity that so many of the medical professionals have little knowledge at all about hypothyroidism and how best to treat patients. They did this successfully before the introduction of levo and blood tests, both of which provide Big Pharma with good profits. Plus, of course, the extras some need to try to relieve symptoms.

[shaws Administrator]

It comes as a surprise to us that doctors have no clue at all about clinical symptoms - which they used to know before the introduction of blood tests and we were diagnosed according to symptoms alone and given a trial of NDT (natural dessicated thyroid hormones.

They seem to have no knowledge at all except for keeping the TSH within range - which could be around 10 (in order to be diagnosed) and I doubt they are aware that - once diagnosed as hypo - the aim is a TSH of 1 or lower with both 'frees' i.e. FT4 and FT3 should be towards the upper part of the ranges.