Refused prescription and referred to the CCG?

[vitaminkgirl]

I wonder if anyone here has been through something similar to this.

I have a very nasty allergy to something in the regular UK brands of thyroxine - possibly residual cow’s milk proteins in the lactose as I have a severe cow’s milk allergy, though I have never been able to clarify what it is. It took me ages to figure out what was wrong and the experience was quite traumatic as the tablets I was prescribed made me very poorly (day long migraines, confusion, palpitations), and as a result I started getting panic attacks. My medical record on the whole issue is quite confused because it took me a while to separate out the panic attacks from the allergy symptoms.

Anyway, I’ve been settled on liquid thyroxine for about two and a half years now without any side effects. The problem is that each bottle costs the NHS a couple of hundred pounds. Out of the blue last month I requested my repeat prescription only to be told that one of the senior GPs at my practice (whom I have never met) has refused to prescribe my medication and referred my case to the CCG.

I’m concerned this GP thinks the issue is all in my head because it’s on my record that I developed panic attacks.

I barely understand what a CCG is - it seems to be a way of cutting costs by refusing patients procedures and medications!

Has anyone been in this situation? Does anyone have any experience of dealing with a difficult GP like this, or dealing with a CCG? I’m trying to get an appointment to speak to this GP and explain the severity of my reactions, but he is proving elusive. Have any of you had to go through a complaints procedure to get your medication?

Any advice or reassurance would be welcome!

Emma

[loueldhen]

Stay calm. Tell them it’s clear from your history that you have an issue with bog standard levo that went away with the liquid t4. That if they revert your health will suffer and their costs will go up because you’ll be pestering them all the time. Write down your history. Access your records from the gp if you need to to put the story together.

[sweetpea21 in reply to loueldhen]

with respect I do not think telling them you will be pestering them will be productive. Surely all that is needed is to state that the med is unsuitable due to an allergic/adverse reaction or intolerance of that brand? Can also report it online to the MHRA as an adverse reaction to that particular brand due to intolerances.

[sweetpea21]

Hi Firstly I would write to the GP and say that unfortunately the brand of thyroxine is the only one to which you are NOT allergic or have any adverse reaction to. The dr is not allowed to prescribe medication that is detrimental.

For now I would ring the Chemist/Pharmacy and ask to speak to the senior pharmacist explaining your situation. Just keep it simple explain that you have this reaction and have they got a note of your allergy on their computer records? If they ssy no then just ask them to add it on. The reason for this is because at the CCG they have a pharmacist who is on a cost cutting exercise. If the info is recorded on your prescription records at the pharmacy and also at the surgery the GP has no choice than to prescribe the med that suits you. Regardless of cost. I think it best to keep re stating your allergy/adverse reaction.

Take care.

[Nanaedake]

I haven't been referred to CCG, however, it's a little understood fact that until around 2015 when all faulty Levothyroxine was cleared off the shelves, all UK Levothyroxine was faulty. See MHRA report into Levothyroxine, Quality and Clinical Considerations.

The report was released in 2013 but it seems to have been pushed under the carpet. Lots of people who were sensitive to the levo excipients, solvents or unreliable efficacy were getting sick, getting panic attacks and other side effects due to potency irregularities. Inadequate testing and production methods. I doubt you will get a genuine explanation of why they want to switch you to a different formulation. Make sure your doctor knows you are aware of the report. Considering the NHS prescribed levo made you so ill, the least they can do is ensure you maintain a good quality supply now.

[vitaminkgirl]

Thanks everyone for your advice! I will make sure I get everything down in writing and make sure the practice and the pharmacy are fully aware of my allergy. I have finally managed to get in touch with the GP and he wants me to jump through a few hoops like go for allergy testing (again!) and try various other thyroxine options. I suggested I could try the Teva brand which I just found out about which is lactose free which wasn’t on the market at the point when I was put on liquid thyroxine. I’m a bit nervous as a few people here seem to have had bad reactions to it, but I will go along with the whole thing and see how it goes.