Not quite my Eureka moment. What now? - Thyroid UK

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Not quite my Eureka moment. What now?

melodypond profile image
36 Replies

So after getting results a couple of weeks ago which showed TSH at 2.1 and T4 at 9 (see previous post) I did a Blue Horizon test. Note this one was take at 5.30am on waking so a very early morning test. But I am still within the 'normal' range. Will I get anyone to listen to me on these results? I am at the doctors at 2pm today as still ill from the other week with sore throat and swollen glands and to discuss my low vit D - do I mention? Am so wary of them thinking I am just looking for something to be ill with! MP x

Total Thyroxine T4 96 (59-154)

TSH 3.79 (0.27-4.2)

Free Thyroxine 13.3 (12-22)

Free T3 4.3 (3.1-6.8)

Thyroglobulin antibody 14.1 (0-115 Negative)

Thyroid Peroxidase antibodies 8.5 (0-34 Negative).

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melodypond profile image
melodypond
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36 Replies
sheenah profile image
sheenah

Hello

Your TSH is only a few points from the top of the range, and your free thyroxine is only just in the range. I think if we take the trouble and go to the expense of getting these tests done then we should be given credit for that. If you don't mention it, what are you going to do with it? xx

HarryE profile image
HarryE

It's not a normal range, it's a reference range. They are not the same thing, although doctors seem to insist they they are! In fact everyone's individual range varies very little, so a jump from the bottom to the top of a laboratory reference range would be dramatic for an individual person. You results are very similar to mine when I was very ill, how do you feel?

This link might show you more about how ranges are made up, and how wrong they are!

web.archive.org/web/2005020...

melodypond profile image
melodypond

You are right I know. I am just a bit nervous, like many people on here I have been made to feel a hypochondriac in the past. It's just this result coupled with a constant sore throat (and a feeling of tightness/food stuck) does point towards hypo. You are right, I just need to get a grip and tell the doctor. Otherwise yes, why did I do the test?? I guess I was just hoping they would be outside the range then there would be no doubt. Right, that's it, I have had a word with myself and I am going to tell her. MP x

HarryE profile image
HarryE in reply tomelodypond

Oh bless you, I wouldn't tell you to get a grip! That's the sort of thing I only say to myself! ;-)

I can't guarantee she'll do anything about it, but you need to raise it at least. Good luck xx

sheenah profile image
sheenah

Yes - Best of Luck - let us know XX

melodypond profile image
melodypond in reply tosheenah

Thanks. I am also armed with the Thyroid UK symptom list of which I have ticked pretty much everything. Lord, I shouldn't be this nervous! Will let you know how I get on this afternoon. Thanks for the moral support from both you and HarryE. MP x

in reply tomelodypond

Good luck melodypond. Let us know how you got on :-)

melodypond profile image
melodypond in reply to

Hi

To say it was a disaster is an understatement. I am absolutely devastated as never been spoken to in that way by a doctor before. I am a bit too upset to go through it at the moment but will post when I am a bit more composed! MPx

in reply tomelodypond

I'm sorry to hear that. Take care.

melodypond profile image
melodypond in reply to

Thank you. I have posted longer reply below. x

HarryE profile image
HarryE in reply tomelodypond

What the hell is wrong with these people? How dare they make patients who just want to feel better so upset! So sorry xxx

melodypond profile image
melodypond in reply toHarryE

Aw bless you. I know it's awful. Have posted the details of the traumatic experience below. MP x

marram profile image
marram in reply tomelodypond

You poor thing, I absolutely understand and sympathise. XXX

melodypond profile image
melodypond in reply tomarram

Thank you. MP x

Ritaritarita profile image
Ritaritarita in reply tomelodypond

Ah honey I so understand after spending almost a grand, my Endo did nothing, just looked at me. Goitre on thyroid bloods normal to him, but after being on this web page I know they are so not normal. Sorry he talked to you like,that. Chin up hon. X x

melodypond profile image
melodypond

Thanks for your support. I need it. I feel like a small child in need of its mummy. It was truly truly truly awful. Do you mind a long post? Can I get this off my chest?

So.. I went in and said I have come back because you did some tests when I was ill and they have shown elevated LFTs, as I thought, plus my Vit D was flagged. I then said however I did notice my TSH had risen from last time so, because I feel so ill and because I have suspected a problem with my thyroid, I paid for a private test. That obviously got her back up straight away as I then said the results were.... and she interrupted and said 'just a minute let me look through the tests we did here first'. I said 'okay I will just get out the bit of paper....' I was going to say from my bag but before I could finished she said 'hold on, can I just look at these first please...'. So I said yes of course, you can see my LFT's came back elevated and ..... again she didn't let me finish she just said 'yes, can I please just look first.' Okay, okay, maybe I was being a bit keen.

She then said your Vit D level is fine. Errr, it was flagged. No, it's fine she said. It said my vit 2 was less than 10 and overall is was 56. I then said I had seen a consultant at the hospital about my LFTs (I rang myself and asked if they wanted to see me and they said yes). Again she seemed put out about that. I then said I just wanted to raise the question with you as to whether it is my thyroid or not. She said no you are in range. I said but with the private test my TSH is 3.79. That's in range, she said. I had to point out that different labs have different ranges so did she want to take a look? I said that I just felt that I have been so many times with so many different things that no-one has looked at the bigger picture. To which she replied. 'I actually find that quite offensive'. I said " I didn't mean you, this is only the second time I have seen you. I said I am only just putting a bigger picture together myself so that wasn't meant as a criticism and I wasn't being personal I just feel I am costing the NHS lots of money with different tests when it could be something 'simple' or resolvable such as my thyroid'. She then looked at the private results and said 'you are in range'. I said I know but only just and coupled with all the symptoms - I have nearly every hypo system - could it be my thyroid? Plus the fact I have been diagnosed with fibromyalgia and the NHS website says it can be caused by thyroid. She then said what are your symptoms. I got out the Thyroid UK check list and was going through the list. I only got half way down the first page when she said 'so a lot of symptoms then?' I said yes, that's why I think could be my thyroid. I said including high cholesterol. She said high cholesterol isn't a symptom of hypothyroid (this is despite my hepatologist telling me only last week it was!). 'You are welcome to get a second opinion or go private or do want you feel you need to but I am telling you I don't think it is your thyroid. You are in range.' I said I understand that but ranges are a guide and obviously everyone is different though I appreciate the need to have a guide. She then just said it isn't your thyroid, keep looking into your liver and see what that come s up with. I then asked if the two could be connected. She then got really cross and said no. She did then offer to run the thyroid tests again in 2 months. I said okay that's fine. Can you please check my throat though (I had said at the beginning it has been sore since I last went to see her, my glands - including at the front - are still swollen and I feel there is something stuck in my throat which had also prompted the private blood test). She then said you will have to make another appointment, you should have said you had so many issues so that you could have made a longer appointment. I said but I am here now and I have had this sore throat for three weeks now. I don't like taking up another full appointment if I am here and you wouldn't mind taking a look. She said I cannot sort out all your problems in 10 minutes, make another appointment. So now I was upset. I said it's fine, don't worry and got up to leave. At which point she said to my back in a really snidey way 'Oh, I am not worried'. I couldn't believe my ears. I then turned as I was going out of the door and said 'thanks anyway for your time'. Now to me, that should have been the end of it but oh no she had to have one last dig. She said: you have been aggressive and pushy (I took this to mean that she doesn't like people asking questions or trying to explore what is wrong with them). I was devastated someone could say that to me. I just replied: No I am not being pushy. I am ill and I just want someone to help me'. She then opened her mouth to say something else and I just said 'I am sorry I have to leave now as I am getting upset.' I walked out in tears and didn't bother booking the repeat blood test. I feel exhausted and drained. The worst bit is she knows I am ill. She saw me the other week when she could see it. My blood tests show something isn't working right with at least my liver. Even is she didn't think it was my thyroid she knows she was dealing with someone who is feeling very ill and instead of being rude and insulting she should have remained calm and reassuring and understanding of my frustration. I don't think I was aggressive. I was repetitive because she just wasn't listening and because, despite my not being allowed to interrupt her with a question, she constantly interrupted me and didn't let me finish. Anyway I have now rung and left a message to see if I can see Dr P. I will take things from there. I have tried the NHS way and I am never subjecting myself to that EVER again.

Sorry for long rant. Please excuse any typos etc as not feeling up to par. And thanks for all your support.

HarryE profile image
HarryE in reply tomelodypond

You poor thing. Sadly I know just how you must feel. Sending you a big hug xxx

melodypond profile image
melodypond in reply toHarryE

I am accepting and clinging onto that big hug, thank you. MP x

in reply tomelodypond

That is absolutely terrible. How awful for you. Not just because of that experience but because of the implications for you and your health.

I've said elsewhere that not every one in the caring professions is a caring professional, and your experience proves my point. I understand you deciding to go to dr P, and I wish you well with that (it's something on my list of possibles) but unfortunately it doesn't bring that GP to account. However, as my severely disabled friend says, we have to chose our battles wisely .....

Take care :-)

melodypond profile image
melodypond in reply to

Yes, you are right. It won't bring her to account. But equally right in that you have to choose your battles. I am choosing to fight the battle with my health not a horrible, mean individual such as her. Of course I have completely dissected the conversation, going through it, wondering if it was me and if I was being too pushy. But I have come to the conclusion that even if I was (which I don't think I was) it was up to her as a professional, to remain calm and understanding. I don't mind someone being firm with me but rudeness and insults is just not on. MP x

in reply tomelodypond

I have to say, that the GP I see now, having worked my way through the others in the practice, gives everyone plenty of time which means that you can wait for an hour beyond your appointment to go in, because he never clock watches. I'm sure if I asked him to feel my neck he would do, irrespective of the other things I'd spoken about. (However, I have yet to have my post-blood test appointment with him, so I may very well be writing a different post then lol!) Given how important it obviously was to you it would have been caring to just check your neck while you were there.

Yes, take time to recover, see dr P if you can, and take if from there. You may feel then that rather than see that GP again, you could put in writing everything you would have liked to have said (and had heard) today. In that way you get it out rather than letting it fester. It's something I suggest to clients - say it out loud or write it down, but get it out :-)

Ritaritarita profile image
Ritaritarita in reply tomelodypond

Write to the practice manager and tell them so at least her attitude will be on record. I have been treated like that, sometimes I,think it is because I am American and we are different regarding health. Until I came to this country I didn't have NHS. So if I went to the doctor I expected good service. Not here. It is terrible. Money scrimping on the NHS part. So sorry hon. I am beginning to hate doctors!!

melodypond profile image
melodypond in reply toRitaritarita

I know what you mean but I have to keep hoping there are some good ones out there. I do wonder sometimes if the NHS is too broken and too tired to care. However, I have never had a bad experience at my GP practice before. This doctor is new and obviously hasn't got a clue about how to talk to patients! I am going to keep holding on to that - but what shock for you coming from private practitioners to our NHS! MP x

puncturedbicycle profile image
puncturedbicycle in reply tomelodypond

I'm so sorry you went through this. I often wonder why we even try with the nhs when so many of us are subject to this kind of treatment. You may decide to self-treat and you won't have to put up with that kind of demoralising treatment again. xx

melodypond profile image
melodypond in reply topuncturedbicycle

Aw thank you for your support. I know why do we bother? I knew the reaction I would get. I have read enough posts on here to know that is how people get treated when they try to be an advocate for their own health but I thought I had to try. I deal with difficult people all day long in my job and effectively manage those people with no problems but I was reduced to a quivering, childlike wreck. I know devastating sounds a strong word but I really did feel devastated. I just can't help thinking about the people who never question doctors, they must end up in the morgue. In fact my sister in law who is an A and E nurse nearly died because of NHS incompetence (not thyroid related). It was only her training and her refusal to leave the A and E department without a scan that saved her life. She was even told by one colleague her pain was in her head and she was depressed - this, by a fellow A and E nurse!! #depressing

HarryE profile image
HarryE in reply tomelodypond

Devastated is the right word, because we all hope and believe that when we need it, someone will be there for us. And if your GP, all of our GPs, can't step up and do that, they are in the wrong job! I have felt so vulnerable, so unsafe, so uncared about from all the DRs I have seen. And it's natural to think that it won't happen to you, that this time it will be better. It's truly heartbreaking. Hang on in there x

marram profile image
marram in reply tomelodypond

So sorry. I had an almost identical experience with my own GP who kept telling me it wasn't my thyroid giving me high cholesterol, pain, depression, hair falling out, TIAs, asthma, swollen ankles, puffy eyes, yellow skin. Oh, no. It was a dozen other things, all of which he could give me a pill for. My thyroid was fine.

My reply? Amazing. How do you know that? I haven't actually seen it for 30 years. Because it was removed 30 years ago, yet you tell me it is fine? Why don't you deal with the elephant sitting at the table instead of searching for a mouse under the fridge?

If a person has no thyroid, and they have hypothyroid symptoms, I would have thought the obvious answer was that she is under-medicated! What's wrong with trying some more Levo?

He told me he would increase it from 100 to 125 but we had to be careful. I said it's a shame that you were not so careful when you reduced from 150 to 100 in one step and I ended up having mini-strokes.

He catgorically denied it could have any connection - even though my cholesterol went from 4.7 to 9.7 in 8 weeks and I had 4 TIAs in that 8 weeks - and my time was up. Thank you, doctor.

Believe me, I really, really feel for you. I wish I could give you a cuddle but you'll have to be satisfied with a virtual hug - (((((MP))))) - from Marie XX

melodypond profile image
melodypond in reply tomarram

Lord. How awful for you that you had to get so poorly. But I love your answer and the mouse and elephant analogy. Will have to try that one myself! And your virtual hugs are just as valuable to me as a real one, so thank you. I know I have to take control myself. I did actually feel more ill in 2012 (though of course am no great shakes now) but I just wonder what state my thyroid/TSH was in then! Though I suspect adrenals were more in play then too. I have learnt to pace, take lots of supplements etc which has helped a bit. But my life is so limiting. I want to enjoy my children. Let's see where my self help and Dr P will take me. MP x

Marz profile image
Marz in reply tomelodypond

You deserve so much more. Glad you have had good support from this forum. You will be so pleased with Dr P.

Take good care .....

scotchlass340 profile image
scotchlass340

OMG!! I'm sorry you had to go through that, that was not nice, i think docs tend to forget we know our own bodies! Do not let that get you down use it to make you fight harder and when your better and sorted next time you see her give her the two fingered salute and take great pleasure in knowing you were right, chin up your much better than that xx

melodypond profile image
melodypond in reply toscotchlass340

Thanks for your kind words You are right. I should use the experience to fight harder to get better. 10 minutes with that GP though and I feel I have been run over by a truck while running a marathon! Will gather my resolve, rest, get a bit of energy back and start afresh. Thanks goodness for this forum otherwise I think I would have been stewing all night, going over and over it. You have all allowed me to vent and been so supportive and hopefully I can move on from this much quicker than if I had been alone. Bless you all. MP x

Firinne profile image
Firinne

My very first post on HealthUnlocked but had to add my hugs to the others. I am actually in tears for you, you have been treated appallingly.........I'm so sorry. I have little faith in doctors and visit as rarely as I possibly can because of similar experiences in the past. There must be good, supportive doctors in the nhs and I do hope this Dr P is one of them. Wishing you all the very best xx

melodypond profile image
melodypond in reply toFirinne

Aw, thank you so much. I am so thankful there are caring people out there. What would I have done without you all? But please, let's neither of us shed any more tears over that horrible woman. She doesn't deserve them. I will report back re; Dr P but I am keeping the faith as everyone on this forum who has seen him only reports back how lovely he is and how he has helped them. Onwards and upwards MP x

BeansMummy profile image
BeansMummy in reply tomelodypond

Having come away from many appointments in tears, I now have a different plan. Much as I hate it, because I am an adult and more than capable of having an intelligent discussion, my husband has been coming with me to GP and endo appointments.

He doesn't say anything unless the doctor sounds as though they are getting to the "fobbing off stage". If he says that I have no quality of life, they seem to take more note than if I say it. It's as if the "manic, menopausal, depressed woman with a bit of a thyroid problem" can be ignored, but he is obviously talking sense.

It has made a world of difference, but is a ridiculous thing to have to do to be taken seriously. I might start loaning him out to people, because he is pretty good at making doctors take note.

I hope you are feeling a bit calmer now. Knowing that there are other people out there with the same problems (health issues and attitudes of doctors) has helped me.

Boronia profile image
Boronia

What an awful experience! I totally sympathise having had very similar experiences that really affected me. The arrogance and unprofessionalism of her....grrr!!! I have gone through all the docs in my local surgery & have settled with a younger doc and although we have different ideas-she listens and will do some of the tests and things that I ask for......as opposed to the senior doc who listens to a list of symptoms, looks at my bloods and says"it's great that you're fine now" then when I persist offers me anti-depressants......... Unfortunately a common experience!!!

It is a good idea to take someone with you for support. I did notice my Endocronologist hardly looked at me when I went alone to my last appointment and just mentioned my blood results. When i went to a previous appointment with my son he actually examined my neck. But then I am getting on and have Parkinsons so I am obviously not very intelligent..

My daughter is coming to my next appointment. Sick of being treated as if I am thick. The Parkinsons consultants are the same. I was told not to interrupt by the last one I saw when I tried to speak.

Don't let them beat you down, x

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