Hospitalised and signed off after medics once again fail to understand Hashimotos

I am at home, signed off for two weeks, banned from driving or going back to work until I have a 72hr ECG and an MRI of my head.

I went to my GP with visual disturbance in my left eye. I'd had a cold for a month, sinuses were so inflamed I thought they were pressuring my eye.

GP sent me straight to hospital

Hospital doctors did not listen to me at all, I ended up with the stroke team on the second day after hourly Neuro obs BP and temp, ( both of which were all over the place) the young guns were looking for something exotic whilst ignoring me saying "I've got Hashimotos, I've had a filthy cold for a month"

They asked me what meds I take and had to spell desiccated and thyroxin for them.

I discharged myself at the end of the second day because nobody was listening, and on my discharge paper it says

Incidentally patient is taking a herbal remedy for hypothyroidism and was advised not to

Which is untrue in its entirety, I'm taking Armour and nobody told not to

What really really makes me cross is that the GP smiled smugly at that and did the "told you so"

I don't think I am ever going to the GP again, they don't understand and don't want to.

I'm pretty sure I might have autoimmune hepatitis, I have a high ALT and a positive ANA, I have abdominal and joint pain

I will need to get self funded tests to confirm and then send them to someone, but God knows who

But first I have to prove I'm not going to have a stroke before I can drive or earn any money to pay for tests.

I have low cholesterol low BP the visual disturbance was in one eye not black and not coming in from side or down from top but rather going out from middle and light

I have no family history of strokes and at no time failed my neuro obs

My head CAT was clear

Why the hell are they wasting time and money with an MRI and 72hr ECG? To cover their arses because they don't understand how Hashimotos works

When GDPR comes in in May I'm going to submit a data correction request to amend the incidental comment about my medication and write them a snotty letter.

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But first I have to prove I'm not going to have a stroke before I can drive

How can anyone prove they aren't going to have a stroke? How is it possible? I've never had a stroke, and I can't predict the future. I might have one in 20 minutes time, or never have one between now and when I die. Who can tell?

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Well my symptoms taken in context and my obs weren't even consistent with a stroke, it's mad....

We don't know = better be safe and rule out a stroke in case we're sued.

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So have they (the doctors) told you under what circumstances you can start driving again? Have they informed (or are they going to inform) the DVLA that you can't drive for medical reasons. It can take ages for the bureaucracy to grind its way through the motions when you've been stopped from driving, but can now drive again. (As far as I know - it hasn't happened to me.)

Sounds to me like you've been left in limbo. :(

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My father was a consultant ophthalmologist so I've already seen one and been given the all clear. Most annoyed

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:( :( :(

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Deary me, what a performance, I can well understand how cross you feel with the whole experience. Why didn't the doctor refer you to the Eye hospital, I think he's got a severe bout of analysis paralysis! Its not difficult to see what we are all up against when a doctor thinks NDT is a herbal remedy.

The one thing I would suggest is that you have your B12/folate checked. B12 deficiency can affect the eyes and as you already have one autoimmune disease (Hashimoto's) then it is not unlikely you could develop another, I did.

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I've never been short on folate ferritin or B12 although I haven't been tested for a while. My father was a consultant ophthalmologist so I got myself checked and signed off by one of those,

But the 72 hr ECG and MRI of the head is just belt and braces where there is no evidence whatsoever that there's anything wrong in that area

I very much doubt they've told DVLA, that would involve joined up thinking.

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Glad you have been checked and signed off by an ophthalmologist, seems like the best option to avoid being prohibited from driving. My experience is that GP's/ hospitals rarely join up the dots - and then they wonder where the money goes!

On the subject of B12/folate, it might be worth having it checked again and perhaps having a more extensive test. I had severe neurological problems for several years and failed to get a diagnoses of B12 deficiency because my B12 was in the normal range (365) and folate was low but also in range. I had a private blood test which revealed over range MCV (mean corpuscular volume) which is a good indication of pernicious anemia. So....like TSH, serum B12 doesn't always tell the full story. Anyway my point is, just keep it in mind.

Hope all goes well for you.

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Thanks I think I will book myself a full test from Blue Horizon

Folate

ferritin

B12

D

Tpo antibodies

ANA

ALT

Anything else I should get?

( Just had TSH 0.02 and FT3 6 and FT4 14 done)

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They are all good but if you are having a full blood count see if that includes at least MCV. High MCV relates to B12 deficiency (macrocytosis), low MCV relates to folate deficiency (microcytosis). There are other tests for B12/folate but I am not sure these are generally included in a FBC, one is MMA (methylmalonic acid) which helps diagnose mild/early B12 deficiency and the other is Homocysteine levels, which can build up in the presence of a folate deficiency. Folate and B12 are dependent on each other along with adequate iron.

If nothing untoward shows up with your MCV, B12 and folate then it may not be necessary to have the other two done. The Pernicious Anemia Society on HealthUnlocked have lots of good information and you could post your results on there if you are in any doubt.

Your FT4 and FT3 levels certainly look good.

Best wishes

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Thanks, I'll get them all, but I've always maintained a good B12 folate and ferritin on my diet of an egg a day and artichokes and Kale and beef. Plus other stuff

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I hope all your tests come back negative. I spent 4 years trying to get a proper diagnoses and ended up with severe neurological problems which could have been avoided if my GP had done further tests and been a bit more clued up. Of course, it has to be said that I may have ended up with PA anyway, who knows!!

Look after your gut, 80% of your immune system is located in your digestive system.

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What an unpleasant and aggravating experience, redditch.

Your account reminds me of when a close friend was being treated in hospital for meningitis. One day, all her joints swelled, but she was so ill that all she could say to medical staff was "can't move". Instead of examining her, they rushed her to the MRI unit for a brain scan, discussed another lumbar puncture, and so on. My friend's mother had to start shouting before they would even look at her joints. It was septic arthritis. :-(

You mentioned GDPR, the enhanced EU data protection that will come in shortly, and you sound as though you've read up on the subject. I'm also keen to correct silly and damaging mistakes on my own record, but I haven't found the relevant info.

I hope you'll feel a lot better, very soon. :-)

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I am a director of a jolly big firm and in charge of our GDPR so am pretty clued up. From May 2018 all European citizens (regardless of Brexit) have the right within 30 days to have any incorrect data corrected. Amongst other rights, this will mean we can challenge any medical rubbish like "patient is taking a herbal remedy"

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Good to hear!

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So sorry you had all that to contend with. Awful. And herbal remedy, indeed! FFS.

I hadn't realised we could get stuff removed from our notes. I was planning to write a letter correcting various errors, to go in my file, but I can imagine how few people would actually take account of it!

I had a quick google and found plenty of references to GDPR but nothing about how to process corrections. I found this though digitalhealth.net/2017/12/g... that basically seems to be saying that a lot of NHS trusts are inadequately prepared for 25th May. What a surprise....!

I really hope you get to the bottom of things.

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Thanks for your support

I honestly think that super bad cold plus Hashimotos gave me the symptoms

But now I get a free, unnecessary, and somewhat disruptive full stroke work up! Not the test I would have wanted for reassurance purposes but doctors, not even endocrinologists, understand Hashimotos

They should have tested me for all the related immune system things as soon as they saw a positive ANA

And if they put Armour down as a herbal remedy, the level of knowledge is getting worse. We are in trouble.

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I had a positive ANA result years ago, but it has always been ignored, regardless of clinical signs and symptoms. Medics seem to regard it as just another marker that may not mean anything. Unfortunately, that often seems to be their first assumption, so investigations into autoimmune conditions stop there.

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My private endocrinologist told my GP to investigate and particularly if I reported joint pain or a marked deterioration. But they didn't

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Homocysteine is a marker for stroke and cardio issues. Often raised when B12 is low in the cells - in spite of in range serum results. It seems not to be a routine test on the NHS. Homocysteine result needs to be in single figures.

I had eye issues and there had been a bleed near the optic nerve. B12 is involved in the myelin sheath maintenance - I self-inject weekly and not had anymore 'funny turns' .....

Hope you are soon back to normal and feeling top dollar. Such a nightmare ..... 😊

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Hi

What issues did you have with your eyes?

Mine was 3 transient loss of vision and in the left eye

Starting in the middle of the field of vision as a blurred swimmy patch and growing until the whole field was blurred.

I believe bleeds present as black patches and any loss of vision is like a curtain being drawn, is that what you had?

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I was putting on make-up to go out and thought I had poked mascara in my eye ! I had what seemed to be a snake swim across my vision in my left eye - and moving. I lay down and it eventually passed. Felt unbalanced for the remainder of my Birthday lunch 😊

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Did it hurt? I had no pain

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More of a discomfort rather than pain. Subsequent funny turns just had me feeling weird and only able to keep head and neck still. Happened twice after first eye event. My whole ataxia type symptoms have gone away since self injecting B12. Gluten ataxia ? Hashimitos ataxia ? B12 Ataxia ? - no idea so I treat all of them 😊

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How worrying for you

Mine was painless

I will call the GP tomorrow and see if they will test me for anything, if not it's Blue Horizon big bill

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Hope all goes well for you with testing. Try to get Homocysteine done .....

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