Problem with the cost of Liothyronine.

[Mugs19]

The pharmacist who dispenses my prescriptions rang me on Friday and said she has tried 6 different distributors for my T3 and they are all charging £20 more per box than she can reclaim from the Government.

Is this a result of the cost of living crisis or what?

I had the same problem 5 months ago when she managed to resolve it by shopping around (and some useful information from Helvella) but this time she can only find brands with lactose and acacia in: i.e. Morningside and Mercury Pharma which don't put her out of pocket. I'm on Teva because it contains neither.

Although I am titrating my dose gradually upwards at the moment I am on 20mcg X 3 daily. a temporary solution might be to ask her to try Roma but they are capsules and so this would only be a temporary solution till when I need to increase by 5mcg daily in about 7 weeks time and only if the price of them hasn't rocketed also.

I'm afraid I have not been keeping up to date with current news on the forum as I have struggled lately with exhaustion and pain, waiting for a shoulder replacement. I was also referred to Salford spinal unit at the beginning of September and have just had a letter expressing their regret that they just can't give me an appointment yet . Consequently I am very depressed and inclined to give up, Any help will be greatly appreciated.

[helvella]

If you are prescribed 25 in future, that would pretty much have to be 20 plus 5. And Roma do 5, 10 and 20!

If it suits you, that would imply no problem.

(I know many split 20 tablets to achieve whatever they need. But being expressly prescribed 25 is different to choosing in some way to split.)

You can tip the contents of Roma capsules out if you wish. Their Patient Information Leaflets tell you that.

[Mugs19 in reply to helvella]

Wow! what a speedy reply. Thankyou so much. Have all brands gone up in price? Is it likely that Roma will also be too expensive? If my GPs reverted to prescribing 1 month at a time instead of 2 months as they do now would that make it easier for the pharmacist?

[helvella in reply to Mugs19]

I have no idea about the actual prices that pharmacies are charged, but the NHS Drug Tariff prices are here:

helvella.blogspot.com/p/cur...

Roma prices are, I think, the only ones that are actual list prices that the company will charge. Afraid I don't know how the tariff prices and actual costs work in practice and for the other companies we do not seem to have access to the data.

I don't know why two months or one month would make a real impact but maybe it would?

[Mugs19 in reply to helvella]

thankyou for this information. Iwill see how I go with it from here. I literally shed tears of gratitude for the support I get from this forum.

[DippyDame]

Out of interest.... am I correct in thinking that you are prescribed 60mcg T3 daily...20mcg x3.....if so that is impressive " doctoring"!

Good luck!

[Alanna012 in reply to DippyDame]

It is impressive indeed! I hope you get this resolved Mugs19

[Mugs19 in reply to Alanna012]

me too. When I told him about the last time this happened he said if it happens again the hospital ought to get it for me. I think he is in dreamland as in the last few years of pandemic there have been 2 long periods of 8 months and 10 months when his OP appointments were stopped and I could not get my ineffective dose changed. These hold ups have caused more damage. Even now he is restricted in how often he can see me. I think he is willing to do this because the knowledge I have gained from this site impressed him and, poor man, he thinks I know what I am doing.

[Mugs19 in reply to DippyDame]

yes. My endo is letting me set my own pace at experimenting with dosage. Iam prescribed 80 mcg daily at present which allows scope for expanding.His letter to my GPS says it is because I may have to cut some pills and they sometimes splinter causing wastage. He is awesome but I fret that the restrictive environment he works in will bring it to an end

[DippyDame in reply to Mugs19]

Goodness....we need to clone him!!

Hopefully the T3 naysayers and bean counters don't put a spanner in the works....but unfortunately I suspect they will. We need what we need but they don't get that.

Did he diagnose a form of Thyroid Hormone Resistance?

Good luck!

[Mugs19 in reply to DippyDame]

He was a student of Dr Anthony Toft at Edinburgh University. He is a diabetes expert, specialisingin the treatment of pregnant women with endocrine problems. None of the rest of the team would prescribe liothyronine for me and the hospital policy is that everyone who has Graves gets a leaflet selling you RAI, which he duly did. I had no idea for 3 years that I had Hashimotos as well and he didn’t try to stop me having RAI. So I think he feels guilty However he does not advertise his knowledge. I think I got this treatment because I knew about it and asked for it. When I am complaining about the death of my brain cells he doesn’t hesitate to reassure me that my brain is ok and that he admires my intelligence etc … I stay with him because he at least agrees with much that is said on here and to try to find someone else would be a leap in the dark.

[DippyDame in reply to Mugs19]

Most of them are terrified of T3 because they have been fed the wrong information at med school

The endo I saw was clueless so after a lot of reading I realised my only hope was to self medicate with high dose T3....it worked!

My GP was convinced I was killing myself but after I explained what I was doing, and why, she now leaves me to get on with it. She worked with Dr T....before he had a change of mind about T3 and wrote "A counterblast to guidelines"

tpauk.com/main/wp-content/u...

The brain needs a lot of T3... mine was totally fogged up until I reached my therapeutic dose of T3-only

Glad he has a conscience... but is probably remembering how Dr Gordon Skinner was treated so is keeping his head down!

The whole thing is a medical scandal.

[Alanna012 in reply to Mugs19]

Wow. I'd be inclined to start bringing in flowers and baked goodies since he's that open minded. I'm going to assume he's near retirement? It tends to be the point that they feel freer to do what they want a bit more and are a bit more open-minded.

[Regenallotment Ambassador]

so sorry to hear about your pain and pending surgery and delayed appointments the state system is ready causing havoc isn’t it. Hang in there, remember how brilliant you are at advocating for yourself, ring the surgeon’s secretaries and make sure they know you are struggling and see if you can be bumped up.

‘I’m not coping very well’ statements really help. Be really honest and don’t feel there are other more needy people than you. You are needy and a priority.

Pain is very debilitating (I don’t need to tell anyone here that I know) the stress on your body will cause greater stress on your endocrine systems, autoimmune response, inflammation etc. perhaps mention this to the surgeons secretaries too.

Wishing you a quick resolution 🌱🦋🌱

[Mugs19 in reply to Regenallotment]

Thankyou. You are right. We all should complain more.