I had my appointment with the endocrinologist - (seen her a few times before) I was so pleased with all the improvements and feeling really positive, thinking all the hours of work I put in to understanding the illness were finally paying off - I absolutely gutted by her response - she said people try lots of different things but never get better, you just have to live with it as their is nothing we can do, every symptom I still have - is down to the Thyroid and she could not offer any test or help in anyway, even though I asked for certain tests - "we don't test for that etc etc- just one excuse after another. I was even more flabbergasted when she said "when would you like to see me again" - What on earth would be the point? My partner said to her - "what exactly are you getting paid for, you have nothing to help " - he is wonderful - I couldn't have said it better my self.
I asked about Acupuncture - she just told me to ask my GP for the list of ones that are ok - four weeks to see the GP, but then can you trust people they recommend?
So frustrating and apparently my TSH was exactly the same as last time - which must be utter rot as everyone has been saying how much better I am doing.
Their are lots of people who recover, why would she say that - I found that very upsetting
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Kitten-whiskers
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That is appalling treatment! I'm sorry you had such a useless endo
If what you are doing is helping, do continue. There are things that do help but ultimately it's a combination of getting the right treatment and the other things.
If she is saying you will always feel like this, does that mean she is prepared to state that thyroxine doesn't work for everyone - contrary to the official position on t4 monotherapy? I bet she'd backtrack then!
I love your partner's response
If there is anything we can help with, please post your questions. We may be able to spot something your doctor missed. I'm sure she missed something if she isn't even prepared to do any tests!
She said the FT3 & FT4 were in range last time, but TSH was about 10, this time she only checked the TSH which she said was the same - which can not be the case - I have improved since I last saw her
If your TSH was 'about' 10, I very much doubt that your Frees were where they should be! Why don't you ask for a print-out? It's your leagal right to have one. They you'd be able to argue your case better. What dose are you on? How can she possibly say that you can't get any better when your TSH is ten??? Doesn't make any sense. Doesn't she know you'll feel better when you get an increase in dose and the TSH comes down?
I have really had enough of doctors and Endo's - so I would rather not deal with them unless i absolutey have to. My trust and respect for them has gone.
The only reason I am going back again to her is so she doesn't stop my medication - as you can not buy it anywhere. My concern is that the reason she wants me to go back is in the hope that my TSH is then "in range" and she can stop the medication, I appreciate it is dearer but it is the only one that I can take - which is still not enough by a long way. I take 0.75ml every 6th day - hoping to increase to every fifth day.
I was gutted with her reactions, I had improved from when I had previously seen her (no thanks to her) and she is saying their is nothing she can do for me, but yet wants to see me again - I am very suspicious of that
She's an idiot. But I don't understand, 0.75 ml of what every sixth day? Liquid T4? Do you have trouble increasing, then? Have you had your adrenals tested? Or doesn't she know what they are, either?
Hello Greygoose, yes sorry I have liquid T4 - I am taking approx 2.5mcg once every 6th day. I have always had a major issue with Thyroid Medication - I have felt and still do that their are other things causing the problems, I had an adrenal test done privately which showed Adrenal Fatique - but the medication has completely ruined my health - I wish I had never ever taken the levo, when I was diagnosed, I have never been able to turn the clock back, and wonder if the damage has already been done.
I am very angry with the doctors (and of course my self) I never questioned them at all, just took the medication and ever since them my life has been hell.
The truth is I will probably spend my life searching for ways to ease the pain and calm my breathing etc and never ever return
You mustn't blame yourself, Kitten, how could you possibly have known? Come to that, how could the doctors have known? Lots of people do very well on Levo.
I do blame myself as it is a mistake that has cost me dearly, My health is my responsibility and I put it in the hands of the doctor, a doctor that doesn't have a clue about the condition. it isn't just levo, I have had T3, Nutri Thyroid, Westhroid Pure and all have done the same, this liquid T4 has been the best by far but will I ever be able to take enough to feel well, it's debatable.
I have often wondered if I have a Thyroid problem at all, just other factors interfering with the performance of the thyroid - like Adrenal Fatique and Gluten etc
I had two tests over the years for Gluten and both came back negative but yet only two months after giving up gluten their has been improvement.
I am going to try acupuncture on Tuesday - The pain is getting unbearable. I feel so angry at the medical profession, if any of them had a single clue about how miserable and painful it can be, then they would make an effort - but they don't even do this - Disgraceful.
Thank you for your response, if i see her again I will bring up your excellent point about the Thyroxine - only question I really have is about Melatonin, their seems such debate on whether it effects cortisol, my cortisol is low but I am in need of getting some sleep - for these last four years I have often only got two maybe three hours sleep - partly to do with the pain but partly because of my thyroid - I just lay their wide awake most of the night, not really feeling tired, just exhausted and also do people recover fully? I really believed if i done everything needed I would recover.
You should recover fully but will need thyroid hormones for life if you have an under active thyroid. If all is treated well you should have a pretty good quality of life.
Melatonin is something I don't know much about. If you are struggling to get decent sleep, you might benefit from a magnesium supplement - particularly at bed time. Have you tried meditating? There are various free guided meditations available online. I particularly like the 10 free 10 minute ones by Headspace. They have a mobile phone app (android. Don't know about iPhone) but they also have a website. You don't need to subscribe for those 10 and you may find they help.
How are you getting on with thyroid medication? Are you able to take enough to make you well? It can take a while to get there but do persevere. There are loads of friendly and helpful people who can support you on this forum.
How about blood tests? Have you got recent thyroid blood tests and others such as for iron, ferritin, folate, B12 and vitamin d? There may be something in these that needs addressing too. You are entitled to a copy of all your blood test results complete with reference ranges.
I hope you find a solution soon. This must be so frustrating for you.
Thank you Carolyn - I will look at the headspace website - I have really struggled with meditation in the past - but sure it will do me a lot of good. I do listen to a relaxation program before bed and sometimes do yoga but even that doesn't seem to help.
I can not take no where near the amount of medication I need, currently only taking 0.75ml every six days (this is an improvement from before)
The doctors won't do these blood tests anymore - they got upset when I went to see Dr Peatsfield and have never got over it, i did have some done when I changed surgeries a few years ago - they came back saying my B12 was above range and so was the iron.
Thank goodness for this site and all the available information - I want my life back but that certainly isn't going to happen because of a doctor.
I'm sorry your doctors are being so arrogant. If you are not getting well, you are entitled to see another doctor. They shouldn't get upset about it. They also have a duty of care so if they are refusing to get to the bottom of the problem, they are failing you.
People have funny ideas about age, a work collegue said and still believes that after twenty your life is practically over, your body starts going down hill : < - I would love to introduce him to my nan 86 and is so fit and healthly - she has a fantastic life still : >
Goodness! Your endo must qualify as the most depressing endo ever - imagine her patients never getting better and there being nothing she can do. No one that negative should be in direct contact with patients.
I discovered that my physiotherapist also did acupuncture but I'm sure if you ask around you will be surprised to find people who have had it done or know someone who has and who could perhaps recommend someone. We have a complimentary health clinic in town who do all that sort of thing so ask around. Not sure how helpful asking your doctor would be - it all depends on whether or not they believe in that sort of thing.
If you can afford it you could always get the tests you want done done privately. There is a list of labs on the TUK website. I use a Blue Horizon home testing kit for a full thyroid test because it was the only way I could get T3 done and I use the place recommended for vitamin D because my endo at that time 'didn't think there was anything in it'.
I can imagine how you felt - I always felt 'flat' after my endo visits and they were nothing like yours.. Well done to your partner. You can only hope that what he said might make her think about her approach. Would it be possible to be referred to a different hospital?
I think I will have to give blue horizon a look - it would be helpful to have tests to help me in my battle for my health. I never except much from the GP or the endo but I was so shocked by her attitude, I was so proud of my partner for saying that - of course her silencce said it all.
I would like to try accupunture but don't think I could trust the doctors, so will go privately, someone has kindly recommended someone.
I can't stop believing that I will recover fully, otherwise their wouldn't be much point.
I did see an endo at a differen't hospital and believe it or not he was actually worse, I didn't hold back with him and I really ruffled his feathers - he got so angry with me and was waving his arms in the air and shouting at me - ( I made alot of good points that he couldn't answer) but I felt better for saying what I thought, maybe I should have been a little more like that this time
You poor soul, you really have drawn a short straw with your endos. Well done for giving the first one something to think about. You just can't imagine how someone who is in the so called caring profession could behave like that.
Same with the most recent one - I can imagine you were absolutely stunned when she said all she had to say. You have to wonder how she could say all that, especially knowing you were happy with how things were going.
Acupuncture is weird, I'm really squeamish about needles yet you don't feel them going in at all. I think from what I remember I was aware of her twiddling them and occasionally it would touch something and make my leg twitch but it was ok and it fixed the sciatica.
Hang on in, don't let the endo put you off, keep relaxed, keep learning from people on here and keep getting better and no wonder you're proud of your partner. 😀
Thank you fruitandnutcase - we must keep battling for our health, must admit I did take it to heart yesterday what the endo said, but i need to look at the evidence, from how ill I was a few years ago I have improved greatly, and their is no reason why that shouldn't continue.
My legs are so painful and feel so lumpy under the skin, I can not bear to even touch them, do you think the accupuncture needles will go in without much pain?
I will have trouble staying relaxed, we have a gang of really horrible neighbours, making things very difficult and unpleasant - it never rains it pours - how true x
Give your partner a clap! He said what I am sure so many of are thinking. You wonder why they are being paid if they cannot help us. It must really be an easy job these days, as hardly any doctors seem to want to get us well, only to shove more tablets down us!
they do seem to be paid doe very little, I am at a loss to understand why she wanted to see me again - I just hope they don't take the medication away - they play god so often.
A lot of the medications piled into us have such bad side effects or in the long run do more harm than good.
They are ignorant in my opinion - but sadly lots of us suffer because of that.
I thought my partner was great saying that : > - what a diamond
Yes I am very lucky - he is my rock, I must admit I used to be like that, but not anymore, sadly even if you speak the truth you don't seem to get any better treatment # : <
So sorry to hear you have had an awful consultation. Silly woman fancy saying that to you.
We have to believe we can get better. If she will not do any other tests ask your G.P. to do them. Do not give up hope, you have been feeling better so just think you can continue to improve with the help of all the lovely people here.
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