How best to use an nhs appointment: I don’t want... - Thyroid UK

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How best to use an nhs appointment

Ginny52
Ginny52

I don’t want to bore everyone to sleep/death, so I’ll be brief and answer questions later.

Two years ago, confused by the mismatch between my ongoing illness and the diagnosis of a London teaching hospital, I found this forum- and half an hour later, humanbean had correctly diagnosed a problem which has turned out to be beyond nhs medicine for 25 years. A catastrophic obstetric haemorrhage had caused secondary hypothyroidism, (Sheehans Syndrome). I thought my problems were over, but I had no idea how resistant these arrogant doctors would be to any input they hadn’t thought of themselves.

First, I bought t3 online- and came back to life!

Nhs endos clung to their unhelpful misdiagnosis of subclinical hyperthyroidism.

I went to see Dr Vanderpump privately. He believed me and prescribed t4. I became an nhs hypothyroid patient- until my gp saw my suppressed tsh, didn’t understand that it was meant to be like that, and withdrew Levo.

I was desperate for a while, but have now got a source of t3 sorted. It feels precarious and I don’t like the feeling of no support or guidance, but at least I’m functional.

I have an nhs endo appointment next month, and after all the harm and time wasting they’ve caused, I wasn’t going to go, but I feel that if I don’t persist, then they’ll think they did a good job and the service for nhs patients will go on letting them down, and they might not all be as lucky as me in finding answers.

I know there are a lot of gaps here and will happily fill in- but what do people here think I should do/say?

Thanks, Ginny

25 Replies
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SeasideSusie
SeasideSusieAdministrator

I wasn’t going to go, but I feel that if I don’t persist, then they’ll think they did a good job and the service for nhs patients will go on letting them down,

I know there are a lot of gaps here and will happily fill in- but what do people here think I should do/say?

I'm nomally a very positive person, but sad to say I don't think there's anything you can say or do that will change the mindset of doctors who blindly accept the little they are taught about thyroid disease, that TSH is all that matters regardless of absolutely anything else, and aren't open to further reading/research/evidence. My endo had a very closed mind, I had to do what he dictated or he would not see me, and he made me very ill. That was back in 2002 and from what I understand from someone else who was unfortunate enough to be referred to him he is of the same mindset now.

Ginny52
Ginny52 in reply to SeasideSusie

I feel a bit sorry for anybody who’s so bad at their job- and he’s so smug!

I spoke to an nhs advocate-she’s great! She thought I should wait until I get a proper diagnosis (when I can afford more private endo) and then make a formal complaint. Maybe best to save my energy!

Hidden
Hidden

The only people who can ever influence or change the mind of most doctors is other doctors, the rest of us might as well be talking to thin air. Dont harm yourself for the cause of trying to educate them, they are unable to learn. What you might want to do for possible legal purposes is write a history of your issues, symptoms and treatments from you own perspective and ask for this to be put on your endocrinological notes. Could you PM me with some feedback re Vanderpump. I have thought of asking him to see my child.

Ginny52
Ginny52 in reply to Hidden

Right away!

SlowDragon
SlowDragonAdministrator

Personally, I agree with you....I think, if you have the energy to go...you should and fight your corner

Ideally taking full Thyroid and vitamin test results with you

The tide is turning slowly and we all need to keep telling them they are missing the point

Presumably you have some documentation from Dr Vanderpump, agreeing with Sheehan syndrome

If Pituitary is not functioning correctly you have central hypothyroidism

Research shows 20% Patients with no thyroid can not regain full health on just Levothyroxine

ncbi.nlm.nih.gov/pmc/articl...

Indepth research into T3/NDT - very positive outcomes

ncbi.nlm.nih.gov/pmc/articl...

If SCOTTISH PARLIAMENT can take action so can England

healthunlocked.com/thyroidu....

scottishparliament.tv/meeti...

Yes I agree with Slowdragon. If you have some documentation to take with you and don’t set your sights too high. If you can even get Vanderpumps diagnosis in your notes that will be a start.

Ginny52
Ginny52 in reply to Aurealis

See below! X

He’s such an arrogant so and so- he had no time for Dr Vanderpump’s opinion, although vastly outranked by him! He reduced Dr V’s prescription of 75 mcg to 50, and didn’t explain suppressed tsh in central hypo to my gp, so that the gp withdrew it altogether! Now that I have to find it myself, t3 is easier and in many ways better, although paying is not great.

I feel angry about being put in a position where I have to choose between self medication and life-in-death though. I can’t afford private testing as well as buying the medication, and I think he probably should still offer nhs testing- he can’t really withdraw that (can he?)

He would probably say he didn’t withdraw the Levo, but without explaining hypopituitarism to the gp, he might as well have done. 50 mcg was too little anyway, and he refused on cost grounds to do dynamic pituitary tests.

I found a Sheehans online support group, and through them an endo at Barts who will do the tests I need. I was thinking of asking the present one to make a tertiary referral (since he is unwilling or unable to do his job, although I might not put it quite like that).

In the absence of any explanation of the basis on which the Levo was being prescribed, my gp thought that a hyperthyroid patient was being prescribed t4 by a wicked greedy predatory private doctor (he has no idea who Vanderpump is), and started raving since none of them explained the suppressed tsh to him, and that is the only thing he’s been taught to look at.

Rapunzel
Rapunzel in reply to Ginny52

life-in-death is all I ever got from the medical profession full stop

You have to weigh up the inevitable stressors of dealing with these arrogant buffoons against your own continuing wellness. Resigned to the likelihood that I will be dead ( but with perfectly good bones for my age and no heart issues) before anything changes, I will console myself that inevitably, endocrine science, in its infancy at the moment, will eventually have your particular endo in books which will pair 'wholly discredited' with his name.

Ave humanbean a very wise one 😘

Ginny52
Ginny52 in reply to Rapunzel

Humanbean probably saved me from suicide- no life except shivering on the sofa, dozing all day in horrible nightmare-filled sleep. And I would never have found out what was wrong!

Aurealis
Aurealis in reply to Ginny52

I just wonder if it isn’t a reasonable expectation by the endo, that a GP should have basic knowledge about hypothyroidism and that it can be primary, secondary or tertiary in origin. Your GP is required to undertake cpd under the requirement of registration, so it’s not a case of passive ‘taught to look at’. If his knowledge is lacking he is responsible for identifying and remedying this. For example, he could read a basic book for patients about thyroid disorders in a pharmacy! There is nowhere for him to hide, not even behind an endo.

Ginny52
Ginny52 in reply to Aurealis

Sorry, just read this.

I did try to explain- he said that he left that to the endo clinic. My advocate says he can refuse to prescribe if he feels out of his depth, and they are only taught about primary hypo. I think you’re right. That would be something that needs to be said to the endocrinologist. He is a good gp, but would not take the word of a patient over that of a consultant- he has far too much faith in them. He also has unshakable faith in an nhs consultant’s word over that of a private one (ie Vanderpump).

I think cpd here is overruled by deferring to the consultant- I’m not allowed to say he’s wrong!

I will certainly tell the endo that my levo was discontinued because he failed to explain and see what he says. That seems a good reason to go to the appointment in itself!

Vanderpump says essentially that in the absence of full testing, the patient’s account of their symptoms should be believed, which is the advice in the 2018 ETA guidelines, and a trial of 75 mgs of t4 given. Smartarse disagrees, and I don’t think these guidelines are enforceable.

Ginny, my journey has been frustrating, but probably not a patch on yours.

Only my last but one set of bloods, my TSH had become suppressed, although absolutely nothing had happened with anything else - no rise in FT4 and T3 still below range. My GP wanted to reduce my Levo.

In the end, we agreed we would defer that action, as for the couple of months immediately leading up to the tests, I had been overseas in a totally different environment, so the numbers could have been skewed.

When my most recent TSH ws still suppressed, I decided I would have writtento my GP explaining how I felt about the suppressed TSH and other numbers.

I wrote my letter and explained why I wasn't at all concerned about the suppressed TSH, as it merely meant my body recognises the exogenous T4, and therefor my pituitary didn't have to shout for more.

I then went on to explain in my terms my understanding of the balance of my results, and how concerned I remain that whilst the relatively passive FT4 is in range, albeit low, the introduction of T4 has increased it by 1 point (literally) and not increased my T3 at all. That number being identical over several months.

She called my explanation and conclusions compelling.

I think sometimes when I have gone to my GP as an informed patient, I have got a bit tied up in the science of it all (as I expected them to understand that), instead of explaining how I understand my own position, against the science and how I feel about it. This latter approach has worked much better.

If my understaanding of the science is flawed, then they can educate me, or give me references to educate myself.

My earlier conclusion was that a doctor, or anyone else can disagree with something, but they cannot tell me what I feel is wrong. How can they? How could they know that?

I do hope you go to your appointment. "We" cannot influence change if we steadfastly walk away from that which needs to change.

I think that must be right- if I don’t say, then how will they know if they’re causing harm?

I think this reliance on tsh testing must be causing suffering to a lot of people, and rubbish though I think he is at his job, my nhs endo can’t want that.

I think a large number of orthodox endocrinologists are prepared to cause almost any degree of suffering rather than admit their precious tsh test is not applicable in all circumstances.

Hidden
Hidden

I have to confess that this is the first time I have seen a reference made to Sheehan's syndrome,apart from knowing that my own mother suffered from the condition way back after my own birth in 1941,in the middle of the London Blitz !! but of course it was never diagnosed at that time.I sincerely sympathise with all that you must have suffered.

In later years I only knew that she was very, very ill.....I'll go no further, except to say that during my late teens she used to attend conferences at our local NHS hospital.They used to send a car to collect her, in order for her to sit at the conference table and to answer questions for the student doctors to learn about the condition.

( We didn't have a car in those days.)

I believe it affected the pituitary,thyroid and gonad glands.She spent the last 25 years of her life on Hydrocortisone steroids and used to call them her lifeline.

She was a wonderful mother whom I loved very much.Happily,when my father retired,

they moved to Norfolk and she was still able to see her specialist at Norfolk and Norwich hospital,enjoying over 20 years of retirement before passing away at the age of 83 years old in 1992.

I send you my very best wishes.x

Thank you so much. Your poor mother!

Without humanbean’s inspired help, I don’t know where I’d be. The ignorance of conventional endocrinology about this is astounding, and makes me think a lot of women are suffering undiagnosed. My biggest recent breakthrough was the discovery of an online group called I Have Sheehans Syndrome. Although this is primarily a US group, there are women from lots of other countries, UK included. It is not that hard in this day and age to have a life-threatening obstetric haemorrhage, from botched delivery, miscarriage and unable to get an ambulance (which is what happened to me)- there are still plenty of ways to lose a few litres of blood, but endocrinologists stubbornly deny it. Tests are available, but hard to get if you aren’t rich.

My cortisol level seems not to be too bad, but the pituitary hormones affected are different from person to person. I think this cause of hypopituitarism/hypothyroidism is miserably underdiagnosed- I’m glad your mum was with you for many years, and it’s sad to think that although better treatment is available now, we have to fight so hard to get it xx

Hidden
Hidden

Thank you Ginny52 .It makes me really appreciate all she did for me.She was a person who always put everyone else before herself.

Can you imagine going through all that during the war.My dad was serving in the RAF away in Driffield,Yorkshire and had to be given compassionate leave to come home.

I still have the invoice for the 64 days she spent in hospital in Romford,Essex when I was born.It was part paid for by the RAF benevolent fund and part by the local council. ( NO NHS in those days) I spent my first 3 months living with my Aunt and Uncle until my mum was strong enough to bring me home and look after me.All this with the bombs going off in London...........on a lighter note .......10months later,my cousin was born.I guess I made my Aunt broody !!😊

Ginny52
Ginny52 in reply to Hidden

That’s an amazing thought- I was born in 1952, and lots of my friends, who are close in age to me, were therefore actually born before we had an nhs. It feels to me as if it’s always been there, when really it’s been a very short time, and we seem perilously close to losing it again.

My former husband was born in 1944, so another pre- nhs baby! His mother was another lovely woman like yours- she once went about with a broken arm for three days because she didn’t want to mention it and be a nuisance! Xxx

Miffie
Miffie in reply to Hidden

I was born in April 1951, I was brought up to believe in the good the NHS brought to the country. I think it is now a victim of its own success. All quite sad as now so many people have so little faith.

What a heart warming memory you shared with us about your mother. Thank you for doing so. x

Hidden
Hidden

That was a sad and awful situation to happen to anyone.....how horrible.

We have so much to be grateful for.

I sat in the waiting room area at hospital on Monday for an hour,before my thyroid check up with my Endo.It was long enough for me to witness a lot of people who were worse off than me,even if I was in a lot of muscular pain.

However, I managed to get a prescription from their pharmacy for the Liothyronine that I had been taking for 5 years before my local pharmacist switched my brand.It's early days yet but this morning having washed my hair, I suddenly realised I was holding my hairdryer up without pain.......such a small thing I know, but what a difference small improvements make when you are hypothyroid.

All Best Wishes x

WOW!

As one who has been working myself up to a bath all morning, respect! (Not going to try the hairdryer thing on the same day though!)

Love and luck, Ginny xxx

If you have access to a desktop/laptop, there's a small, free, analysis program called SPINA Thyr, available from spina.sourceforge.net/

Your test results (TSH, FT4 and FT3) are entered, along with the type of substitution you're on, and the results calculated. Hovering your computer's cursor over the results reveals the usual ranges.

I'm a newbie with it, and have out of range results. There's some guidance from an American doctor/sufferer at: chronicfatiguediagnosis.com... and chronicfatiguediagnosis.com...

diogenes may be able to help with interpretation of results, which would hopefully guide treatment options, though the cybernetic feedback theory would likely be way beyond your GP and endocrinologists.

This sounds like exactly what I need! I’m going right there.....

Thanks very much xx

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