I believe in fairies!

This is a bit long, I can’t decide if I’m in a Pantomime where I am deliberately being sent in the wrong direction, or if the brain fog means I've forgotten where to go.

My GP practice will only discuss 1 issue at a time, so a year ago when I went with a dizzying array of symptoms I was asked which was I most concerned with.

Which would you pick?

-the lack of feeling in your toes

-the tingling you get in your hands that makes you drop what you are holding

-the memory fog, so you can’t remember the pupils names that you have taught daily for 2 years

-The weight gain

-The always feeling cold, but dreadful night sweats

-The fatigue, and 16 hours sleep that you need a day,

-Lump in my neck ......... and the rest of the symptoms which don’t seem as important.

You all get the idea. In the end I said ‘I don’t know I’m not a trained doctor which do you think I should be most concerned with?’.

GP decides to send me to Neurologist, who takes one look at my blood tests (swears under his breath) and asks why I’m not on B12 with such a low result of 248 (lower range 246). Refers me back to my GP saying I need B12 – GP says "Oh no you don’t’ (Pantomime voice),’ you are within range." So I self-medicate.

“Well I still have all these symptoms – what should I do?”

GP packs me off to a throat cancer specialist, who takes one look at the ultrasound, and says I need you to have another blood test. Results back – letter to GP, ‘your patient has 9 small nodules, consistent with Hashimotos disease, and high antibodies to prove it’.

"So GP, what do I do now?"

‘Nothing – your TSH level is normal (1.25) so we won’t do anything, but your Vit D and ferritin is a little low so here is a prescription’ (Vit D was 17 which I now know is more than a little low).

Back after a month when prescription runs out – GP ‘so your levels will be fine now – off you go ‘

"But don’t I need to keep taking supplements?" "NO – bye" So again I self-medicate.

I leave it a few months – back to GP (I should say that it’s never the same one) – I have 2 new lumps on the side of my throat. This GP is young, so a little more flexible, she refers me for an urgent scan and biopsy, I see an ENT Radiographer who refuses to do a biopsy, saying that it’s just an enlarged thyroid – I point out that if he looks at the last ultrasound (6months previously) I had nodules but not an enlarged thyroid. Results go to ENT consultant– who says I need a biopsy – back for another Ultrasound. Radiographer says I don’t – ENT registrar says I do, so I have now been referred for my 3rd ultrasound in 2 months!

So in a final desperate bid, I have booked a double appointment with the young GP on Tuesday, These are my symptoms, please treat me as a whole person. I am going to appeal to her good nature, and beg on my hands and knees (not sure I’ll get up again).

I know my last TSH is 1.25, I know that my fasting glucose is 6.4, but normal afterwards, I know that I have Hashimotos, I know that the lumps are likely to be nodules, I know that the difficulty swallowing is now likely due to an enlarged thyroid, I know this.

I just don’t know what I’m begging for, I don’t know what to ask her to do next, I don’t know what I’m hoping she will do, I think it’s like believing in fairy tales, and hoping the good fairy will come along and save the day. I still need to believe in fairies!

8 Replies

  • Sorry I can't really help, but think it better to believe in fairies than the NHS these days. Can't believe they are still paying doctors not to diagnose us. Maybe things will change when doctors have to be re-validated? Have you also had your ferritin, folate and iron checked? Wish you well, Janet.

  • I guess you have never had an FT4 test? Still less likely an FT3 test?

    I am not convinced your TSH is reflecting truly the levels of your thyroid hormones. In Hashimoto's you quite often see FT4 drop, and FT3 rise for an extended period before they both drop. People can feel pretty bad during that period.

    This "one issue" approach can be crazy. But maybe you can push it round a little bit more to your advantage and say the issue is Hashimoto's? (Rather than any single symptom.)

    Very much agree about iron, ferritin and folate needing to be tested. And, I'd hope, a B12 test sometime? And vitamin D?


  • Up until now I hadn't had T4/T3 but after going armed with some info my GP has agreed. She has also agreed to re-test my B12 and Vit D. Thanks for the advice and support

  • Gee your GP should be head of all the Specialist Consultants considering he seems to knows better than they do !! ( yes I'm being sarcastic )

    Why send you to the Specialists and then disagree with their resuts ? .. why can't you continue going to the specialist and let him / her treat you.

    Sorry I wouldn't know what to suggest you do other than change your Surgery / Medical Center and take advice from the people on here who know what their talking about and the tests you need.

    Their all alike after an Operation I had two years ago .. I had lots of things starting to go wrong within a couple of days .. infection, pain in my pelvis and front thighs that I couldn't stand and had to use crutches .... like your GP mine also only treats one symptom at once even though all the problems were caused by the op .. The antibiotics made me really ill but I took all of them anyway and on the last day of the course I looked like I had chicken pox .. ( and it didnt clear the infection either ) , when I went to see her she said oh another one to add to the list of what you cant take .. she stood up and said ok your five minutes are up now while I was still trying to tell her I still had the infection and pain.

    She told me those were seperate problems and I must make seperate appointments for them ?????

    She just wouldn't treat me as a whole person ? WHY .. why do they do this when its obvious that many '' illness '' symptoms are one of the same problem .... BECAUSE I've come to realise its all to do with money if they take each symptom as a seperate problem they get paid more money.

    Its disgusting grrrr makes me so angry.

    There were other concerns regarding my diminishing health connected with my thyroid so I changed my GP within the same Medical Center.

    I had to write a letter of request for a change of GP and why I am requesting the change .. So I told them.

    I had to have an interview with the GP I had requested and once he agreed to take me as a patient ..... it was then sent to the Dorset Medical Trust for approval and transfere to his list.

    I accompanied a friend last week to her GP in the same Medical Center and they were giving out a tick box questionair to everyone to fill in after their appointment .. It was asking how were you treated, were you listened to, were you treated with respect , was your problem sorted out to your satisfaction, did you have enough time to discuss your concern etc; etc; etc;

    GOOD I hope they have been reported to the Medical Board or whoever it is they have to answer to.

    If everyone wrote a letter of complaint when their not happy with their treatment instead of silently seething maybe something would be done. Theres power in numbers.

    I hope you get the treatment you need and you start to feel better soon. x

  • While I hate hearing all these terrible stories, it's a bit comforting to know that it's not just me!

  • Without wanting to be discouraging, I would suggest that you don't take this "whole body" approach. The worst appointment that I ever had was the one where I went to my GP with a list of symptoms and asked them to look at the whole picture.

    This kind of "complicated patient" means that they want to come up with something, so they fall back on those generic catch-all conditions that can't be diagnosed with any blood test: depression and chronic fatigue.

    In my case it was utterly laughable to suggest I had chronic fatigue. I wasn't intolerant of exercise - quite the opposite. I was so intolerant to cold that I was running around just to stay warm. I still am cold intolerant to a certain extent even today, but this was sooo extreme that I was quite literally surviving on adrenaline. And of course, I wasn't feeling happy, I was feeling pretty unwell!

    (Actually, it turned out that a major part of this was iron deficiency).

    You have to work with the existing GP system as best you can, and in my experience they don't do "whole body" problems very well. Although my experience is just one experience, I don't think it is unique.

    So I suggest you focus the conversation on two areas - book a double appointment if you have to - and explain you have two problems: neurological and thyroid.

    You've had the advice from the consultants, so why aren't they treating you accordingly?

    Every time they say your B12 levels are in range, then you can quote "but the consultant said..." Besides, there is now new information showing that the levels of total B12 don't always show up deficiencies - there is now a new test for "active B12". To my way of thinking, it would be easier to give you a B12 injection to see if it helps, than to send you off for a fancy new (and probably expensive) test.

    For your thyroid, I believe there are conditions where a trial of levothyroxine may be indicated, and one of those is where the patient has an enlarged thyroid. There are also studies showing that levothyroxine treatment is one of the few (if not the only) thing that can slow the progression of Hashimoto's disease - which the consultant says you have. I would find some good information about that to show to your doctor.

    Just my thoughts - I'm not medically trained.

  • Good advice, it's because I refused to accept a diagnosis of ME a year ago that I have had the other tests. Double appointment this morning, went in with open mind asking for help, but well informed to be able to ask lots of questions.

  • I hope it went well this morning.

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