Thyroid UK
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2ND ENDO APP AND A DIFFERENT ENDO- WHY DO WE BOTHER!!

Hi all i am very disappointed again and have come to the conclusion that does any endos actually know what they are talking about and they dont have any interest in making us feel better.

I today spent 40 mins in a room with a endo who has told me nothing that i didnt already know and also said that "your tsh is great and really going up now" my tsh is now hypo levels at 5.48 lab range upto 4.00. I said" my tsh is over range now and hypo and it will continue to rise on 5mgs carbi and my frees are low in range, so i dont agree its great"

She then at this point she said you are hyper-i said im not hyper any more im hypo, she did ask my symptons, cold. Pins and needles, trembling, palps, breathless etc and i did say these are hypo symptons aswell, she was shaking her head and tutting, very rude i thought and at this point she went out of the door and brought in another endo to back up her theory of hypo symptons are not trembling and palps etc and are definitly hyper symptons -i disagreed again and also stated that i am overmedicated on carbimazole and that i had titrated dose to three quarters of the tablet and as you can imagine this went down like a lead brick- he said that people do not titrate like that and there is no such thing as quatering a tablet etc and should be given the all xlear by them, at this point i had lost interest, i told them i am not going back up to 5mgs so we come to the agreement of taking 2.5 mgs a day and will see me back in february.

I have also mentioned about hashis but that fell on deaf ears and caught sight of the eye roll, they will be doing another thyroid scan as i am not happy with regards to nodules that maybe pressing on my windpipe, even though he said this was impossible!!

The last thing he did mention was that i was quite knowlegable on my thyroid condition and implied that thyroid uk told lies and could not offer any good advice and knew nothing about the workings of the thyroid as they are not proffessionals. Just felt that we are alone in this, all i want is too feel well again and normal. I will get there it is just taking ages

My wish for myself and everyone here is that we deserve proper endos who listern and take things seriously instead of generalising that one size fits all.xx

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Well, they are not the ones trying to get back to work. Sorry you had a bad experience.

Remind me, did you have TSI or TRAB antibodies for Graves Disease or did it turn out you had TPO antibodies for Hashimotos??

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Had tpo done and yes i have hashis but that fell on deaf eyes, last endo would not do tsi and this one said no aswell as he said waste of time as nearly everyone has graves, again another stupid answer.xx

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I don't understand why they tell patients things that are clearly in contravention of good guidelines that anyone can read on the internet.

The guidelines below for Graves Disease from the American Thyroid Association make it clear that NOT everyone has Graves and there are clear guidelines for defining it. The UK Endocrinology Associations work together with the ATA so these guidelines are recognised in the UK.

American Thyroid Association on Graves disease

thyroid.org/graves-disease/

online.liebertpub.com/doi/p...

British Thyroid Association guidelines - if you scroll down you'll see the ATA listed as one of the guideline reference organisations.

british-thyroid-association...

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Hi Rmichelle

I have also come to the same conclusion as you, and it appears looking on here and other thyroid forums it’s a common occurrence.

After paying privately to see an Endocrinologist whom was lovely and understanding (so I thought) concentrated on my vitamin levels (to be far they were low) tested positive for Epstein-Barr and scan confirmed Hashimoto’s.

It was me that mentioned a full Thyroid test after advice on this forum, and the scan.

I also took several vitamins selenium etc and went gluten free, again advice on here, not from him.

My very last visit was to discuss my thyroid private blood test and my scan. He took no notice of them and looked at the blood test he requested after my private bloods.

He requested TSH, and it showed in range this time, despite me still feeling freezing cold, hair loss, neck stiffness, muscle pain in fingers, hearing loss, feeling not earthed, spaced out.

Anyway basically told me that as my TSH had improved nothing he could do, no medication would help.

I said so this is my life forever, I’m 39 years old, I don’t smoke, drink and eat healthy and you are telling me I have to deal with all my symptoms for life.

He then said he wanted me to have a second opinion, at that point I thought I was just peaing in the wind.

I went to my GP over xmas as felt dreadful, requested a trail of Levothyroxine, but GP looked on Endocrinologist letters and said as he didn’t prescribe anything she can’t help.

I explained I had been diagnosed with Hashimoto’s and the scan confirmed this. She told me nothing she could do and I had been misinformed about Hashimoto’s.

When informed her Thyroid UK were supporting me, she looked at me gone out.

She also asked if it was anxiety.

I’m going to self medicate, with the guidance of people on here and other forums.

I’ve wasted too much money on people I thought would help. I want my life back.

Best wishes

Peanut31

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I feel the same way. Pay doctors too much money with no results but confusion.

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I think good endos are far and few between, just a big shame we are very poorly looked after.😊

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Websites like this and AI technology are going to make a doctors role redundant in many cases. Already you have a computer program which is spotting cancer in a particular area much more successfully than the consultants.

Forums like this are a simple technology, but they are massively powerful because it allows exchange of specific health info between people having these problems. This never happened before. Possibly you may have a chat with a friend about your cancer or thyroid condition, but you really couldn't learn about your specific problems at all. The only outlet for you on your illness/ disease was the doctor and we trusted them totally.

I am sure the bright docs can see that this technology is very powerful and must worry some of them.

We are just very lucky to now have this technology.

I feel the next step in human everyday development is the realisation by simple folk (not people on these forums) that actually you can very simply learn what is wrong with you on the net and the doctor is not the best place to get information from.

The internet is responsible for shining lights on many aspects of modern life and displaying the true reality. This is why we are seeing so much upheaval in the management of many areas of our modern life.

So my point is to be happy you actually understand more about your illness than a highly paid professional. Don't let it get you down. You can take full control and you can get what you want. It might be a fight, but we are now able to do this. Pre internet you would just be ill and it would be all YOUR fault.

Stay positive.

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Thankyou marsaday that was a very positive reply, i think you are right these so called medical proffessionals are quite on edge when he comes to people k nowi and disagreeing with what they are saying about their conditions.i wont give in as im a fighter but just makes me wonder how they would feel if it was them!!

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My GP put in my notes 'ADMITS to researching online'. They get really defensive....The lady doth protest too much, methinks.

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Lol that made me laugh😊

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My GP wasn't really much of a lady...more of a shrew :)

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I know how you feel i really do, i felt like sayind stick yiur ranges and eyerolling up your@ss. It makes me angry and sad that people here are not receiving the proper treatment they need to live their lives and the newer people here who are pining all their hopes on 1st endo app thinking all will be ok- endos attitudes are appauling and unhelpful. Thank god for this site.☺

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It seems like UK Endocrinology is in a mess. There don't seem to be clear pathways for diagnosing or treating patients. Hashimotos and Graves get muddled up and confused by both doctors and Endos. Doctors don't seem to understand how thyroid hormone works and no-one is able to interpret symptoms and what they mean.

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You have hit the nail on the head -just proves my endo knew nothing by saying my tsh level was great when its over!! Im still hyper-i dont think so.

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Not just in the UK! It's much the same in France. :(

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Don't forget the US! It is pretty bad here as well. Is it good anywhere???

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I imagine it is not brillant anywhere, i think we all should come back as animals in the latter life as they get much better treatment.🐱🐶

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I'm so sorry they failed you again, Rmichelle. It's quite unbelievable, really, isn't it. How can they say things like 'everyone has Grave's' (presumably they're talking about antibodies?) when it's quite obvious that not everybody does! Do they really believe such things? Or do they just think that's we're so stupid that we will believe it!?!

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Oh well-nothing gained really apart from another scan!! 2.5mgs carbi now-cant believe they wanted me on 5mgs when levels were going up.xx

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I can't believe they refuse to test for Grave's but continue to treat you for it! How scientific is that?

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I cant believe they thought that my levels of tsh going up and up was great and my frees going to lower was ok!! Then saying going back upto 5mgs to make me more hypo, wheres the sense in that, i get the impression that she alone could not handle my disagreements so got back up from a so called more experienced colleague.😊

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Oh, I'm sure you're right! She has no idea of the wheres and whyfors, just parroting the little she learnt in med school without understanding the subtleties. Unfortunately, he didn't know any better!

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Feel angry today, what a waste of time, we are truly responsible for us and thats what im going to do.x

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I feel angry most of the time, if I allow myself to think about it all. I would really like to smash all their smug faces in! lol

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Lol, i will hold them down and you can do the smashing but make it quick as i get exhausted easily.xx

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I will, I promise! lol

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Wow I think we may of seen the same endo! Ha the first time I saw mine she chucked a load of medical words at me like hypertension graves Hashimoto etc I asked her to stop and explain it she said .... go away and google it!!

What is she being paid to do! anyway she has now left the nhs and I have met a new endo my gp says he is good though when I googled him he is a specialist in diabetes.

It is so frustrating for us all as all we want is to be is healthy and get our lives back. I’m sorry I don’t have any words of wisdom to help you but I guess for you to know you aren’t the only one receiving this treatment. I wish you well and a speedy recovery.

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Thankyou lisa254 it is really a disgrace, bloody animals are treated and monitired better, its ok i should ive known better from my experience of the 1st appointment but it is a comfirt isnt it knowing we are not the only ones but it should not be that way.xx😊😊

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Rmichelle ~ I think they actually do! One of my daughters has several cats and when one of the older ones went hypo, he had amazing treatment ~ hideously expensive, but monitored and dosed correctly. Massive list of instructions re nutrition, special diet, vits/minerals etc. he lived well and healthy for years! Makes you wonder how much supervet charges! :0)

On a serious note, their eye rolling and indifference is a disgrace and delusions of grandeur springs to mind. Thank various gods we have this forum, or we'd all be in the madhouse! Your reply to GG made me laugh ~ thanks for that ~ I think that's one of the reasons they all get away with it ~ we're too weak to fight back! Take care, and have a Happy New Year without them! x

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That's about the only thing that's efficient in France and cheap too. The Vet.

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Well I don't BOTHER i just sort myself out and it works well!

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I think the only reason i have bothered is the fact thatvim off work sick and they wouldnt take it seriously without referrals to hospital and gps etc. Just wantvto get 2nd ultrasound out of the way and take it from there.😊

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Yes I understand what your doing, I am in a different position to you. I am retired and before was self employed. Good luck with your appointment I hope that you improve soon.

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Hi sweet again just read all how bloody appalling the way u were tret and I suppose many others.he said you were knowledgeable well there you go you out did him and they don't like that.so sorry it didn't go well.I wonder what treatment they get if it happens to them.guessing better than any of us.try and keep smiling best you can loads of luvand keep that fight up girl xxxx

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Felt deflated and angry when we got back at 7.15 i was in such a vile mood after travelling on a train to get there and then a taxi for what? im over it now and boxing gloves are back on but you are right i was not going to fall for there continous blah blah.

If you fall get back up and brush yourself down-rmichelle is back.lol keep well trophygirl and think of me when you put the kettle on.xx

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Just an idle thought...

Since doctors have declared that people aren't really hypo until their TSH is over 10, I've been under the impression from a few posts that some doctors have got completely muddled and now think anything under 10 is hyper.

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Yes could well bea it wouldnt surprise me, i wonder how much of their time in med school is actually spent on endocrinology? Very little i imagine but who knows what goes on in their narrowminded brains, if we dont match their way of thinking they dont want to know.

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