Livid

So i have been waiting on an endo appointment since last year, called about 4 months ago and was told it was a 9 month wait. Called today, 14 months and i was referred in aug 2016... this is after 4 years of pleading to be referred! I can't afford private. I am so frustrated at now being on 300mcg a day of levo, which isnt working and the dr thinks it ok?? I had a cardiologist in my work (i'm in the medical industry) with a background in endo, i told him my drugs and dosage and he told me to get back to my dr asap and demand an appointment for the endo to be rushed through as my heart is taking a beating with that dose they have me on. I feel like no-one is listening to me. I drink 3 litres of water per day and recenty had a body analysis done, i have 35% water which is extremely low that i was told to get a liver function test, did so, came back 'normal'... i pee constantly, esp at night, my mum keeps telling me to go back to the dr and demand answers and tests and dietician. I try but they just keep telling me i'm normal. I'm at my wits end!!! I'll have my printed results soon and post them here but i just feel like crying my eyes out!!!

10 Replies

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  • That sort of wait is not helpful. But as you are no doubt aware getting an appointment may not bring any/all the answers. Can your GP make the appointment an urgent one or are you at the mercy of your bloods and a GP that can't do much more? We all feel for you as the lack of real consideration of us in our entirety is what is most disheartening. No doubt more knowledgeable people will be able to offer some insight.

  • At the mercy of the gp unfortunately. I know, thats another point i am afraid of, actually going to the endo and getting nowhere :-( i think i will have a breakdown! I have attached my bloods, only managed to get them back so hopefully someone can help me make some sense of it all

  • There will come a time when our reaction to poor and damaging treatment will not be one of personal hurt or anger. One day. We will also not be told it is purely in our heads. But until then please don't allow the bustards to actually damage you further by you absorbing the erroneous messages they so confidently spout. After sitting in bed for years with no life worth living I have found some answers and realised that money keeping me 'safe' in that living death should be redirected. Yes the NHS should have correctly diagnosed and treated me but after so long I really had to accept that they are 12-20 years away from actually doing what I need from them. Still a long way to go and a heck a lot of reading but this is my life. I hope that you get some answers soon.

  • Lulubella,

    I've not seen any research saying that high dose Levothyroxine is damaging to the heart. Has your GP done a tissue transglutaminase test to rule out coeliac disease? Coelia disease is the leading cause of malabsorption leading to requirement for high dose Levothyroxine.

    3L water is quite a lot. I'd be peeing all night if I drank 3L daily.

  • Lol i know it seems a lot of water but i'm not able to retain any of it no matter how little or lot i drink... even on days where i maybe only have a couple of glasses (rare) i will still pee 3-4 times at night. Can't win in this thyroid game ha

  • I don't think that cardiologist did you any favours, telling you that, and worrying you. Because I'm not entirely convinced it's true. It might be true if your body were converting all that T4 into T3, but it doesn't look like it is. T4 is just a storage hormone. I'm not sure it has any effect at all on the heart. But, what you really need to know is your FT3 level.

    You know, in the days before the TSH test, that would not have been considered a high dose. It was quite a common dose. And l really don't think people were dropping like flies with heart attacks. It's only since the TSH test was invented, and doctors became obsessed with it, that doses have got so much smaller, and so many patients are left suffering as a consequence.

    I imagine, on that dose, your TSH will be suppressed - which would be perfectly normal - and perhaps that is what the cardiologist was referring to. But, simply having a suppressed TSH is no danger to your heart, as long as your FT3 is in rang. So, that's the first thing you've got to find out. Then, you can go from there. :)

  • Thanks greygoose, i have attached all my results :-)

  • Just had look at your results, I'm afraid most are over my foggy brained head but very, very surprised at your TSH being that high 4.29 especially when you take 300mcg levo! like greygoose I expected it to be supressed! T4 relatively low too really at 16.1. Is there a result for T3 as can't see it?

  • No they dont do it for our T3, i still havent got the blue horizon done so i really need to invest in that as soon as i can afford it!

  • 3L is a lot of water, and water is considered a diuretic. You should drop down to a maximum of 8 glasses a day. Also, how are your electrolytes? Sodium, Potassium, etc? An imbalance of sodium or potassium will cause excessive urinating. I went through this when I went low on magnesium (from proton pump inhibitors - nasty drugs those are), which made me low on potassium which caused my kidneys to try to balance these two minerals via excessive urination. This stopped once I started taking magnesium everyday and using a 1/2 sodium 1/2 potassium chloride blend on my food.

    You may also want to get checked for diabetes.

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