So the day I had been dreading finally came around, my endo appointment.The way I saw it I had three options.
1. My first thought was I should go and tell her exactly what I thought of her and I can honestly say that duff wasn't one of the adjectives that sprang to mind! (are you with me greygoose!)
2. Maybe my best option would just be to cancel.
3. Perhaps I should go, keep calm have a sensible discussion and who knows maybe even she might learn a little something!
I decided on 3 (yes I know what on earth was I thinking, not a lot probably with this fuddled brain of mine!)
Endo. Hello how are you feeling?
Me. Extremely unwell and angry in equal measures.
Endo. Oh so you don't feel any better after I put your thyroxine up by 25mcg ?
Me. Well just over 5 weeks into the dose I did have about 4 days when I felt much better, aches and pains subsided and I slept better than I have in years, however it now feels like I'm back to square one.
Endo. Well remember our discussion last time when I said I will try to get your TSH down to mid range, about 2.5 and you might feel a little better but I doubt it? well the your test shows that its now 2.7 and that's close enough, I wont be increasing it again because its clearly not doing you any good!
Me. (to self Breeeeth!) I'm sorry could you just repeat that I don't think I quite heard.
Endo. I wont be increasing your dose, its clearly not doing you any good your blood tests are absolutely normal. Remember on your last visit we had a little chat about CFS and I wrote to your GP?
Me. ( to self noooooo this wasn't how it was meant to go, BOOM) Well yes its about that letter that I am so angry, firstly you have got the wrong results in that letter, have you any idea how bad that is should my GP be treating me according to those results, do you know how many people actually die when doctors get doses wrong or put decimal points in the wrong place?
Endo. Oh oh yes I see what you mean I'm so sorry its just a typo mistake!
Me. And yes I do remember our little chat concerning CFS and my response to you was please don't stick that label on me all these symptoms are down to my hypothyroidism being under treated. However you just couldn't help yourself could you ?Do your realise that anything I would need to see my GP about from then on would most probably have been put down to CFS? My thyroid would never be sorted. As far as I am concerned the CFS label is one word that covers my symptoms and not an actual diagnosis. Its a label that's often used because of a shortage of either time , cash, or intelligence to make a proper diagnosis. How many other patients do you think that happens to? You left me no option other than to sort this out for myself. Do you realise how stressful this has been for me to do feeling like I do?
Endo. But your results are totally with in the normal range, they are fine.
Me. Did you ever look at any of my previous results that you have in front of you prior to when the problem began? I then put on her desk the blood chart I had printed and filled in off Thyroid UK . Nice and simple with all my prior results up until my levo dose was drastically reduced from 125mcg to 75mcg. All was fine and my TSH was suppressed at 0.1 on everyone, with an occasional comment at the side reading 'if this patient is on T4 then this is probably a euthyroid result'.
Endo. They are abnormal results.
Me. That is a normal result for someone who is hypothyroid and taking T4. Do you know what a euthyroid result is? Total silence. I have no idea whether she was too embarrassed to say or really didn't have a clue. All she kept weakly repeating was those results were abnormal and now they were perfect
So now time to bring out my printed off article by Dr A Toft in the Pulse magazine, my book of Stop the thyroid madness II with appropriate pages marked. By this stage in her head she still could not admit she had got this so wrong but her face told another story. I told her what my other options had been and why I had chosen this. She asked me what I would like her to put in the letter to my GP and that she could tell him to ignore CFS diagnosis. I told her that the best thing she could put was the truth that being I had an under active thyroid that was being seriously under treated. She then asked if she should increase my levo by 25mcg and I told it wouldn't be necessary as I had done that myself on Saturday after seeing my latest blood results as I wasn't prepared to waste another minute of my life. She then said she would refer me to the most senior endo there but with a list so long it would be many months. After this experience I really didn't care whether I saw him or not anyway as I figure they are probably all singing from the same hymn sheet so to speak anyway.
Endo. May I go and take a photo copy of the Pulse article?
Me. You may and maybe you can think about getting yourself a copy of this book ,you may learn a great deal and future patients could really benefit. (Stop the thyroid madness II) She leaves the room to get the photocopy and comes back a couple of minutes later.
Endo. You have an appointment with our senior endocrinologist 26th October.
Hopefully my blood pressure will be back to normal by then and ready for 'round 2'.
All I have to do now is to thank each and every one of you out there. You have taught me so much. Some of your threads make me sad and I hope from here you will find the strength and knowledge that I found to pick yourselves up and claim back your lives as I slowly but surely am doing. Some of you have made me smile and laugh out loud, rediscovering my long lost sense of humour. From the bottom of my heart thank you.
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Elisabeth41
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Blimey Go Girl! You deserve to be very pleased with yourself. When will they actually understand that once on T4 our TSH is likely to plummet and that we are better that way? Well done! And thanks on behalf of all her other thyroid patients that you used precious energy.
Hiya SeasideSusie , my poor long suffering husband was with me and its so good that after him reading the book too he now has such a good understanding of what we are all up against. My endo kept glancing across at him and her eyes seemed to be pleading with him to make this mad woman stop!
Go girl go, that's the way to do it, short sharp but straight to the point. Take that and that as well for all the misery endured through her incompetence.
👏🏾👏🏾👏🏾👏🏾 hopefully she'll educate herself and others will benefit from your meeting with her. Thank you on behalf of those people. Your post made my entire week more positive.
Well only time will tell. I really need to make this clear though that this was entirely a group effort that could never have happened without all of you. Knowledge is power and with that came the courage and strength. I got all of that from each and every one of you.
Wow! Now I would have had all those questions, answers, comebacks in my head, then would have gone to pot as soon as I'd stepped into the Endo's office 😧 I used to be "very quick off the mark" as people told me, but now, I can't think for toffee!
Mouldyoledoll Believe me I know what cant think for toffee feels like! On this occasion a small piece of paper with all my bullet points on did the trick!
Brava! I'm in awe at this and saving the bit about not being labelled at CFS etc to quite at my GP next time I see her. I want that diagnosis removed from my records. Again, BRAVA!!!!
I said I will try to get your TSH down to mid range, about 2.5 and you might feel a little better but I doubt it? well the your test shows that its now 2.7 and that's close enough, I wont be increasing it again because its clearly not doing you any good!
One of the biggest problems we suffer with is that doctors assume every substance they ever test shows a normal distribution when plotted on a graph. This is what a normal distribution looks like :
In a normal distribution the commonest result is middle of the range. But if the distribution is skewed, then the results might look like one of these graphs :
The most important part of the paper (from my point of view) is the right hand half of Table 3. It shows the median, not the mode, and the 2.5% and 97.5% limits of the data in each gender and at various age groups. Don't forget that, in this case, the mode would have been lower than the stated median.
It has often been stated in the last few months that TSH is much higher in the elderly, and for this reason they should not have a TSH lower than 4 - 6 (or is it 4 - 10?). But Table 3 shows that in healthy women aged under 40 the median TSH is 1.3, and for healthy women aged over 80 the median TSH is 1.7. A massive difference of 0.4.
Torture of the elderly and the hypothyroid will continue, while doctors everywhere look virtuous, and tell us the problem is "something else" and will prescribe ADs and statins.
humanbean Thanks humanbean for those links. I have printed off the one titled Thyroid Australia Ltd. as I feel that one in particular could come in very useful at my appointment with this 'Senior ' endo next month. It would be wonderful if I didn't need to have my 'battle folder' of evidence with me, you never know! I have to admit that the last link is a little too much to make much sense of with this muddled brain and blurred vision of mine just now but I will be getting back to it. Thanks again.
It's a bit much for my brain fog too, which is why I always tell people to look at Table 3, and never mention the rest of it.
Confirms what I already knew. The docs all know they are wrong and doing harm to the patient and will fob you off with any old rubbish until you stand up to them and challenge them with the truth.
Congratulations. Make yourself heard loudly and clearly with the chief endo and let us know how you get on. Have you ever thought of recording the conversation?
I did but not until the actual day. I'm not up on all things technical and my son said it would be better if I downloaded an app to do it as it would record for longer than just using my phone. I did check to see if it would pick up a conversation while in my bag and it did perfectly. I'm not sure if its legal without asking her permission though. My guess is if I had asked she probably would have allowed it, however I think she then may have cut my appointment rather short and I wouldn't have had chance to have fully had my say!
My goodness how impressive! I've just read your post out to my long suffering husband. Love that you have a 'battle folder'., we should all have a 'battle folder'. Great title.
I always took (and made sure my endo saw it) a notebook filled with questions about my treatment, test results and their ranges,, a daily note on how I was feeling - all bullet pointed, photocopied articles from Pulse that I used as evidence should I have to put up an argument for an increase and as you know they work.
I'm sure I don't have to tell you but be sure to prepare yourself well for meeting her boss and take that long suffering husband with you.
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