Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 I had (have) the same problems with my endo. He prescribes my Erfa and is constantly trying to reduce my dosage. Now every time he suggests a dose reduction I assertively tell him I am fine on 2 grains, I keep repeating that til he listens! (Broken record method!!) He quotes blood tests, (which I am refusing to have at the moment as he tries to refuse to listen to me). I explain thus: My TSH is low because I am getting everything I need from Erfa and my dead thyroid does not need to be pushed into trying to produce hormones, IT IS DEAD!! My FT4 is well in range as is my FT3 - when they get out of range then we will discuss again. (When he starts to listen to me and I resume blood tests) I also explained to my endo that I am the one who suffers this illness and I'll be the judge of what symptoms I have and when, not by some innacurate numbers on a monitor. You have to tread a fine line but I would say if your endo is already prescribing Erfa then you have a little leeway to assert what you know. Don't forget that the NHS rules state that any treatment has to be discussed and agreed by patient and doctor, not foisted on you by them. Glynis > I have just received a letter from the registrar this morning saying she has discussed my case with Dr M and I have to stay on 2 grains of Erfa as my TSH is low > I am so upset I have actually been on 2 1/2 grains since last Friday and have felt slightly better and lost a pound in weight. > I don't know what to do, I know i need to be on more than 2 grains to feel well. I have my Erfa funded through the Huddersfield hospital as my PCT refused to fund it and so feel tied to seeing this stupid endo. > > What should I do?? > > Love Lizzie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 Hi, Try printing out the research from Dr Lowe that Sheila has posted earlier today on TSH levels- that should sort him! > thyroid treatment > From: arianrhod@...> Date: Fri, 23 Jul 2010 12:16:02 +0000> Subject: Re: Am so angry> > I had (have) the same problems with my endo. He prescribes my Erfa and is constantly trying to reduce my dosage. > > Now every time he suggests a dose reduction I assertively tell him I am fine on 2 grains, I keep repeating that til he listens! (Broken record method!!) > > He quotes blood tests, (which I am refusing to have at the moment as he tries to refuse to listen to me).> > I explain thus:> My TSH is low because I am getting everything I need from Erfa and my dead thyroid does not need to be pushed into trying to produce hormones, IT IS DEAD!!> > My FT4 is well in range as is my FT3 - when they get out of range then we will discuss again. (When he starts to listen to me and I resume blood tests)> > I also explained to my endo that I am the one who suffers this illness and I'll be the judge of what symptoms I have and when, not by some innacurate numbers on a monitor.> > You have to tread a fine line but I would say if your endo is already prescribing Erfa then you have a little leeway to assert what you know. Don't forget that the NHS rules state that any treatment has to be discussed and agreed by patient and doctor, not foisted on you by them.> Glynis > > > > I have just received a letter from the registrar this morning saying she has discussed my case with Dr M and I have to stay on 2 grains of Erfa as my TSH is low > > I am so upset I have actually been on 2 1/2 grains since last Friday and have felt slightly better and lost a pound in weight.> > I don't know what to do, I know i need to be on more than 2 grains to feel well. I have my Erfa funded through the Huddersfield hospital as my PCT refused to fund it and so feel tied to seeing this stupid endo.> > > > > What should I do??> > > > Love Lizzie> >> > > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 Hi Lizzie, Have a look for the Dr Lowe's thyroid Science message Sheila posted earlier today about misuse of TSH levels- this fits so nicely with your results. When on NDT ignore TSH- it will always be non existant and concentrate on FT4 and FT3- usually the Ft4 will be low in range and FT3 will be high as the NDT has more T3 in it that a healthy human would produce. I agree that the registrar had it right. Daft lot! Carefully compose and send that letter! > thyroid treatment > From: lassey@...> Date: Fri, 23 Jul 2010 11:43:42 +0000> Subject: Am so angry> > Hi Everyone> > You may recall that last Friday I had my endo visit and ended up seeing the registrar instead of Dr M. I was actually quite pleased with the visit though as she had told me to increase my Erfa to 3 grains, from (they thought i was on) 2 grains but was actually on 2 1/4 grains.> > I have just received a letter from the registrar this morning saying she has discussed my case with Dr M and I have to stay on 2 grains of Erfa as my TSH is low - 0.08, my T4 - 7.1 will be low as their is less content of T4 in erfa and my T3 - 4.5 is normal. > > I am so upset I have actually been on 2 1/2 grains since last Friday and have felt slightly better and lost a pound in weight.> > I don't know what to do, I know i need to be on more than 2 grains to feel well. I have my Erfa funded through the Huddersfield hospital as my PCT refused to fund it and so feel tied to seeing this stupid endo.> > I am tempted to carry on and play ignorant and pretend the letter never came, on the other hand I feel quite tempted to email his secretary and tell him I refuse to be kept ill due to worries about low TSH.> > What should I do??> > Love Lizzie> > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 Can I suggest you write a note to the person who sent you the letter, explain what the endo said and that you are going to do what the endo suggested. I would add what the NHS says about treatment being discussed and agreed between patient and doctor and in future to CONSULT you not arbitrarily change your medication levels. Glynis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 Hi , Thank you, I may well do that if it becomes necessary. Love Lizzie > > 500 erfa tablets are about £80 plus ransom demand from customs, so it works out about £100. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 Hi Lizzie, I'm so sorry this is happening. Be angry, you should be and then when that has dissipated a little, start to get a clear idea about what you need to do with this structure that you're up against. I understand that you get your ERFA on scrip, so do I, so I realise how precious that is... and probably how hard fought for. However, and it's a big however, you cannot allow your health to be effected by this crystallised concept these people have about how to treat our condition. We don't have to live in polarities though....either keeping quiet or raging, there is a middle way. My experience of the NHS is to feed em with what they love..... facts and figures. Get a diary and write down everything that's gone on and is going on. Have a daily list of what you take and how you feel and especially in big red pen of when you went to the endo and what they said. Show in black and white that you feel better as your meds increase.Go back to them again and show them what you know. I always make a big deal of slapping my diary on the endo's table ,opening it up and refering to what he said and the tests I had and the results and most importantly how I felt after meds etc were changed. My endo always eyes this diary. Facts are facts and the written word always carries gravitas. If it comes to it, yes.... if I were in your position (which I kinda am) I would add what I need to the dose they prescribe and just keep going along to them for the blood tests and in order to get the main bulk of your meds prescribed. It's not ideal but you have got to do what you have got to do. Have you seen Dr P.... if so, what did he say to do about your dosage ? I am on 120 of ERFA and my T3 is above range. I still feel like the walking dead (and only just walking) and my endo, who's a nice guy, almost had a cardiac in front of me last time I saw him when I told him I was taking Isocort and that I felt under medicated with the ERfA. I thought he was going to take me off his list he was so angry. But, I am increasing my ERFA none the less and I have stayed on the Isocort because this is my life..... and apparently, no one can sort it out except me. Be strong... cry, be angry, throw stuff... but be strong and work the system so that it doesn't work you. We are all one, julia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2010 Report Share Posted July 25, 2010 Hi Lizzie, You have two choices- to follow the registrar or the consultant. Why don't you try the increase to see how it goes, before you next appt, so then you will know who was right, after all if the increase doesn't help then you never need tell the consultant. > thyroid treatment > From: lassey@...> Date: Fri, 23 Jul 2010 16:41:30 +0000> Subject: Re: Am so angry> > Thanks Glynis and > > I have had a horrible day, I am so cross that the endo can look at my blood results and say to stay on the same dose, fullstop. There would have been no harm in him contacting me to discuss it with me going on symptoms as well, but oh no, just look at the bloods. It makes a mockery of the whole system, having an appointment and going to see them, what is the point, they aren't going to listen to you anyway. I wouldn't mind but I had taken time off work, had to wait an hour to see the registrar who was behind, even though I thought I was seeing Dr M, I feel like I have been treated like, well rubbish. > > I am so fed up of having to go and argue with them just in the hope of leading a normal life, if ever.> > To be honest I was feeling so relieved that I had been given the go ahead to increase and not have to be lying about the dose I was on and worrying about running out of tabs. Now I just don't know what to do for the best. I could write and complain about the way I have been treated and refuse to reduce the dose, or I could pretend I didn't get the letter, or pretend I got it after I came back from my holidays and was already established on the dose and not happy to reduce it. I feel so devious and disappointed.> > Thank you for pointing out Dr Lowe's research but I doubt this jumped up ignorant endo will even bother to read it.> > Love Lizzie> > > > > > > Hi Lizzie,> > Have a look for the Dr Lowe's thyroid Science message Sheila posted earlier today about misuse of TSH levels- this fits so nicely with your results.> > When on NDT ignore TSH- it will always be non existant and concentrate on FT4 and FT3- usually the Ft4 will be low in range and FT3 will be high as the NDT has more T3 in it that a healthy human would produce. I agree that the registrar had it right. Daft lot! Carefully compose and send that letter!> > > > > > > > > I have just received a letter from the registrar this morning saying she has discussed my case with Dr M and I have to stay on 2 grains of Erfa as my TSH is low - 0.08, my T4 - 7.1 will be low as their is less content of T4 in erfa and my T3 - 4.5 is normal. > > > > > > I am so upset I have actually been on 2 1/2 grains since last Friday and have felt slightly better and lost a pound in weight.> > > > > > I don't know what to do, I know i need to be on more than 2 grains to feel well. I have my Erfa funded through the Huddersfield hospital as my PCT refused to fund it and so feel tied to seeing this stupid endo.> > > > > > I am tempted to carry on and play ignorant and pretend the letter never came, on the other hand I feel quite tempted to email his secretary and tell him I refuse to be kept ill due to worries about low TSH.> > > > > > What should I do??> > > > > > Love Lizzie> > > > > > > > > > > > ------------------------------------> > > > > > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2010 Report Share Posted July 25, 2010 The thing to do is to insist that you put down the name of the doctor you wish to see when you have your outpatients appointments, and then sticking to one, you won't have this stupid problem. I INSIST on having " Will only see Dr P…. " on the front of my Medical Notes, and I am never called in to see anybody else. He knows me and I know him. Luv - Sheila Hi Lizzie, You have two choices- to follow the registrar or the consultant. Why don't you try the increase to see how it goes, before you next appt, so then you will know who was right, after all if the increase doesn't help then you never need tell the consultant. Quote Link to comment Share on other sites More sharing options...
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