Omg I'm panicking

[Pixielula]

Hi this is the first time in my life I have ever done any forum posting........ My story in brief, I was diagnosed with hyperthyroidism at the age of 39 and started on levothyroxine, had problems from the start with excessive diarrhoea, as my dose was increased my diarrhoea got worse till finally having tried a variety of anti diarrhoea medications my Dr prescribed codine phosphate. This gave me some relief from the diarrhoea but the tablets made me feel whoosy and I had problems each time I put script in as they are very addictive. After about 2 years the effect of the codine started to lesson and my GP was considering increasing my dose to control the diarrhoea. My brother had recently been put on liothyronine due to side effects from his thyroxine so I asked if that might be a possible solution for me. I was put on 60 mcrgms and stopped the codine instantly. I have been on liothyronine now for about 8 years this was prescribed in Devon. All was well until I moved to Somerset and registered with a new GP practice. It has taken a year of having monthly prescriptions and having to see an endocrinologist in Taunton, and I got a letter yesterday to tell me they are stopping my liothyronine. My options are to pay for it myself or to have my life taken away and return to a life of disabling diarrhoea and whoosy codine. I am in a state of panick and have no idea what to do now

[shaws Administrator]

Make an appointment and speak to your local MP. You have a life on liothyronine and ill-health on levothyroxine. Some people have a genetic fault (sounds as if you may have) called DIO2. Link follows:

thyroiduk.org.uk/tuk/testin...

If you are forced to pay for it yourself you can buy online but must put up a new post asking for a Private Message to be sent to you with info. Mercury Pharma (I think it's amdipharm now) charge nearly £200 for 30 days. It is exorbitant.

There was a conference for all Endocrinologists and one Professor recently said that some of us need T3 or T3 added. The vote was taken at the end and 80% of the Endocrinologists said they wouldn't prescribe. After all - they have never obviously had the kind of ill-health you've had to suffer and are brainwashed into thinking that some of us are malingers or something or other because we are unwell on levothyroxine.

Nearly all of the 40,000+ members on this site are on it because they remain unwell on levothyroxine only. Otherwise they would be getting on with life - if they don't have internet connection and undermedicated they will probably get other serious problems such as heart etc. More money will be spent on the extra 'prescriptions' to treat the clinical symptoms rather than on a reasonable dose of meds.

Mind you - if your GP is willing to prescribe on a 'named patient' basis which means he takes all of the flack the liothyronine will be cheaper, I believe.

thyroiduk.org.uk/tuk/treatm...

[Clutter]

Welcome to the forum, Pixielula60mcgrm.

Does the letter say WHY they are stopping Liothyronine? You should write to the practice and to the CCG appealing the decision and pointing out the difficulties you previously had on Levothyroxine. Copy your MP on your correspondence and attach the letter the practice/endo sent you.

A private prescription for 28 x 20mcg is circa £152 so a private prescription for 60mcg is probably unaffordable. However, 25mcg T3 is available on line without prescription. Click on my username to send me a private message if you want sources.

[debbymcc60]

Hi Pixie, did you mean Hyper? This needs thyroid suppressive meds eg carbinazole. Your symptoms sound Hyper, in which case thyroxine will make it worse.

[debbymcc60 in reply to debbymcc60]

Carbimazol

[Treepie]

The Minister has said that T3 should not be stopped on cost grounds alone when it has been determined to be necessary by your doctor.Ask the CCG to give their reason in writing then appeal.

[Pixielula in reply to Treepie]

The letter from the CCG states they only prescribe liothyronine in cases where exceptionality has been demonstrated, and my case "letters from GP and endo" have not demonstrated exceptionality my GP however told me it was a cost based decision as Somerset is already over budget for there prescriptions.

[Treepie]

Perhaps your previous GP may provide a letter stating that he determined it was exceptionally necessary. That might assist an appeal. But certainly write or better still see your MP and ask that your case be raised with the Minister.The more that do the better.The Minister is well aware of the cost issue but seems complacent.

[Musicmonkey]

This is outrageous Pixie. No wonder you are panicking. Does anyone remember a recent post about getting legal support via TUK? I can't research at as on my way to a meeting. Maybe do a search Pixie.

[Pookie50]

Hi Pixielula

I am sorry to hear you are having problems getting T3 prescribed. I also live in Somerset and have had the same problem as you in that my T3 was stopped after 7 years of successful T4/T3 treatment. I have the faulty DIO2 gene so don't convert T4 to T3 which is why I did so well when T3 was prescribed for me in 2007.

I have written to the CCG, an Endo at Taunton and also to my GP, all to no avail, they are adamant that they will not prescribe long term T3 or NDT not even on a named patient basis. I have contacted our MP and had a meeting in her office with one of her staff on the 13 January and am waiting to hear back from her. I left a folder with loads of research information/copy letters and explained that because of the ridiculous rise in the cost of Liothyronine patients are being denied the medication some of us need.

However, don't despair, there are other options. Thanks to the information available on this forum I now buy NDT (WP Thyroid) online and am self medicating with great success since October last year. I will PM you with details of my NDT supplier.

Best wishes

Pookie50

[Pixielula in reply to Pookie50]

Being very new to this, and only ever taking medications that have been prescribed I have no idea what NDT is, on the defective gene issue both my parents are hypothyroid myself my brother my daughter a niece and a couple of cousins.... So there is a very strong family history

[humanbean]

Since you were prescribed levothyroxine at the start of your treatment you must have been diagnosed with hypothyroidism NOT hyperthyroidism. They are quite different.

Thyroid meds of various kinds (for the treatment of hypothyroidism) are available over the internet.

The different types are :

1) Levothyroxine also known as T4, the one the NHS prescribes,

2) Liothyronine also known as T3, which the NHS used to prescribe but doesn't want to now because the price has gone up by several 1000%,

3)Natural Dessicated Thyroid also known as NDT. This is the product which was used for treating hypothyroidism before levothyroxine was developed. It is made out of pig thyroid. Many people who have tried NDT prefer it to everything else, because it contains all the hormones that a healthy human thyroid creates, unlike T4 and T3 which both contain a single hormone.

The prices being quoted for T3 in earlier posts on this thread are what the NHS is currently charged.

From the BNF (the British National Formulary, showing what doctors can readily prescribe) :

Sub-sections

Liothyronine sodium (Non-proprietary) Prescription only medicine

Tablets, scored, liothyronine sodium 20 micrograms, net price 28-tab pack = £152.18

Source : evidence.nhs.uk/formulary/b...

The point of mentioning this, is that the NHS is ripped off shamelessly. NHS T3 is the most outrageously priced T3 in the world. I have seen some patients quoting £3.99 per 100 of 25mcg tablets of T3 from the Far East. I don't know their source though, so please don't ask me.

See this page for more info on what choices there are :

thyroiduk.org.uk/tuk/treatm...

Note that the link on that page to the BNF is out of date. It can now be found here :

evidence.nhs.uk/formulary/b...