oh well lets get booking a space in A/E

[mandy72]

when i seen my endo he wanted me back on levothyroxine tablets even though i told him they made me really ill

just logged in on my repeats to see if my prescription is done and there it is 150mcg levothyroxine tablets a day

when i was on the tablets before in was forever at the drs and made regular visits to A/E

im going to have to get what i need doing done today then call around chemists and see if i can get eltroxin, ive asked a few while we have been out and about and been told its out of stock

im really angry that i was ignored

yet again down to money

[Nanaedake]

Did your Endo test your vitamin levels? How long ago were you on Levothyroxine and when did you stop taking it? What brand did you take before?

[mandy72 in reply to Nanaedake]

he did nothing, i mentioned my cortisol may well be high still and he said thats fine

he did no blood tests at all

just asked why i was on the liquid and i told him i was very sick on the tablets and he then said i want you back on the tablets and discharged me wanting a blood test 6 weeks after starting tablets and if TSH is bad then i need referring again

years ago i stopped the tablets and went on NDT and did great for months then cortisol went high and i couldnt take even a small dose, so was put on T3 for a trial, did well brought my own and was great, then couldnt take that, went back on another NDT with T3 because of high cortisol and couldnt cope with that then onto the liquid, was going ok and been on it for months, did a increase a while ago due to TSH being 3.32 but it was too much so went back to 6ml

[Nanaedake in reply to mandy72]

I can't understand why he wants you to change it if you're stable and doing OK.

I would get your doc to check your vitamin levels urgently, vit D, B12, folate and ferritin. Have you got results for thyroid antibodies? If not, I would get those tested too. If vitamins are not optimal then Levothyroxine does not work efficiently.

What diagnosis has the Endo given for your thyroid condition?

[mandy72 in reply to Nanaedake]

i can ask for the tests but not holding my breath

i did have high antibodies a few years ago

endo just said my thyroid was perfect

[Nanaedake in reply to mandy72]

What year did you first start on tablets after being diagnosed and when did you start feeling ill on the tablets. The reason I ask is because there was a big problem with Levothyroxine tablets in the UK between 2008 and 2015. people were reporting problems from 2008, in 2011 these reports increased. The MHRA who are the regulators of human medicines in UK carried out an investigation. You can find the report on the Internet released in 2013. They found that Levothyroxine was wrongly categorised as a stable drug which it is not. And that it wasn't bioequivalent between formulations. They changed the dissolution test and re categorised the drug in the British Pharmacopeia . One manufacturer in particular was not producing Levothyroxine to the standard required and it was making people very ill. Not only that but swapping between products was making people I'll. The manufacturer had its licence withdrawn but since then has reformulated the product and the MHRA have licenced the new product. However, on this forum I have seen a lot of complaints about the new product so I for one am not convinced the MHRA have succeeded in effectively controlling the quality of newly licenced products.

Eltroxin is the reference drug for Levothyroxine in the UK, however it seldom seems to be available.

It's very likely that Levothyroxine has caused your problems. I would put this information into a letter to the Endo. Copy it to your GP, include a copy of the 2013 MHRA report on levo, look up all the recent complaints on this forum about TEVA Levothyroxine and insist you stay on the formulation that suits you. If they insist on a change of formulation and it makes you illl I would hold them responsible.

Your Endo must know about the historical problems but isn't telling you. He probably thinks it's resolved now but this is not necessarily so. The evidence is pointing the other way.

He should not expect you to change your Levothyroxine without discussing this aspect with you and providing reassurance that you will not become ill on a change of formulation. I think he is irresponsible and has NO idea of the destruction it caused to people's lives.

I ended up in A&E as a result of the lousy Levothyroxine and other problems too so I know how worried you feel.

Write to your local Healthwatch too and complain.

[mandy72 in reply to Nanaedake]

i started thyroxine 4 years ago, never got above 75mcg, symptoms stared within the firs few weeks, air hunger and palpitations were the worst i was at the drs every other day and in A/E at least twice a month

the endo said my thyroid was 'perfect' TSH 3.31, the scan i had 4 years ago stated thyroid was small due to being attacked so how can my thyroid be perfect

i had a letter off him today stating im very overweight and should look into losing some (there scales have me much heavier than i am) he thinks i have sleep anea because im tired during the day and i snore

i shall give the tablets a go and keep everything crossed im ok, im hoping the reason i was so bad was down to the fact i was never given a high enough dose

[silverfox7]

Not commenting about you Mandy72 but I have seen posts where ones have gone on to self treat as Levo wasnt helping to read that Levo dose just needed increasing. So if this mad knee jerk reaction continues I hope it becomes apparent that many GP's are struggling to understand this condition and something positive emerges to change that.

It's unfortunate that the increase of ones on forms of T3 brought about by patients learning and getting a better understanding along with some GP's was at the time the NHS realised they are paying so much and a travesty they have taken the wrong decision and not allowed us all to request medication outside the UK without conditions attached. Yet they did this I understand when MP had a production problem but without noticing how cheap it was.

Ok MP state it is difficult and expensive to produce so I can only conclude that they are not using the best methods so should keep up with modern technology or are telling porkies. Whatever you think they should be held to account and if incompetent should be stopped and their licence taken away and permission given again to import T3 from reputable sources.

[mandy72 in reply to silverfox7]

i was never given a decent dose

with the liquid i was started on 4ml, i increased to 5 myself and told the dr, then i was increased to 6 by dr as TSH was 20+ then last TSH was 3.31 so i increased to 7ml but found that a bit much so back down to 6ml so will start the tablets at 125mcg and see how i feel

i cant afford to buy my own so stuck on thyroxine but if things get bad i will be asking my dr for liquid again