Severe cut in thyroxine by stupid GP

[sulamaye]

I have had a diagnosed under active thyroid for twenty years, since I was27. Over the years with a supportive GP my thyroxine intake increased to 150mcg plus 20mcg of liothyroinine sodium, otherwise known as t3. T3 lowers tsh levels making it impossible to read blood tests in the usual way, but I had no symptoms of being hyper so my GP was happy to leave it as it was as I felt well and had been able to lose the 3 stone I'd put on when first ill.

3 years ago I was diagnosed with M.E/CFS.

We moved to wales from England two years ago. The health service is distressingly bad and our GP practice awful with no alternatives.

Two months ago my GP decided to cut my liothyroinine sodium totally and my levothyroxine to 50mcg!! I argued strongly that this was unscientific and if anything cut the liothyroinine sodium then retest to see if any indicators that levels too high, but no. Eventually she spoke to an endocrinologist and agreed to only cut to 100mcg! Still a massive drop for my poor body.

I have been making slow but steady progress recovering from my hellish M.E. Then 3 weeks ago suddenly started getting a relapse and reoccurring of symptoms like tingling and thrumming I hadn't had for over a year. It took me a bit of time to realise it was 3-4 weeks since my thyroxine had been so drastically cut.

I know my GP won't care and certainly won't increase my medication and I doubt that an endocrinologist will either as he sanctioned this ridiculous approach to my medication. So I guess there is nothing I can do. But I can not describe how distressed and desperate I feel at having my progress so violently halted, perhaps never to recover. What on earth can one do? It' s insane and I really object to the complete lack of science!

[Clutter]

Sulamaye, please post your last thyroid blood results with the lab ref ranges (the figures in brackets after your results) to help members advise. TSH can be suppressed by T3, as you say, but what were your FT4 and FT3 results?

[sulamaye in reply to Clutter]

I don't have those figures this GP doesn't consider me worthy of them! I will try and get the tsh ones but I don't think she actually tested for anything else. Thank you

[Clutter in reply to sulamaye]

Sulamaye, The Data Protection Act entitles patients to see their test results with the lab ref ranges free of charge within 40 days of the test although you may have to pay a nominal £1/£2 fee to cover the cost of printer ink and paper.

ico.org.uk/for_the_public/t...

Labs often decline GP requests to test FT3 unless TSH is suppressed. You can order private FT4 and FT3 tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

Dr Toft, consultant physician and endocrinologist at the Royal Infirmary of Edinburgh, states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

thyroiduk.org.uk/tuk/about_...

email [e-mail] for a copy of the article to show your GP/endo.

[sulamaye in reply to Clutter]

I have emailed you, I hope you received it safely?

[Clutter in reply to sulamaye]

Sulamaye, Louise won't see the email until she's in the office next week.

[sulamaye in reply to Clutter]

Okay thanks, what is the name of the article?

[Clutter in reply to sulamaye]

Dr. Toft's statement in Pulse Magazine.

[shaws in reply to sulamaye]

Are you in the UK? If so, we have to be given a copy of our blood tests, with the ranges, if we ask. They cannot refuse.

[sulamaye in reply to shaws]

Havin read Tofts article I am a bit confused as he says tsh shd not be suppressed if taking t3. Mine was so can't see the article helping with my GP. stil trying to get through to someone to ask what my last reading was.

[shaws in reply to sulamaye]

No, maybe it's not a good idea.

[shaws]

Your doctor can cause serious problems for you by adjusting your medication due only to the TSH. He should gradually increase it again till you feel well. They are truly ignorant and believe the TSH is the way to adjust and not by the patients clinical symptoms. Go to the letter dated July 15, 2006 to read the question/answer and also read the question above which is how we should be treated.

web.archive.org/web/2010103...

[sulamaye in reply to shaws]

The problem is that the majority of them are ignorant of their ignorance and won't accept any logical arguments. I was so lucky with my Suffolk GP she had a brain and accepted that I had one too! I can't even find a better practice to try so I can't see what else to do. I'm waiting to see an endocrinologist, but my experience is that their not much better. I will read what you advise though, but they have ultimate power over all don't they?

[sulamaye in reply to shaws]

Hi I've been looking at the link and can see that you use an approach more like my old GP. The problem is most UK GPs will not take any notice of the research that you site. Don't you think that if my current GP had a scientific rather than frightened approach she would have listened to my logic that if she insisted on removing my t3 that she then wait and reduce my t4 only if there was some evidence that I had too much in my blood stream. And that's putting aside all the arguments you make as to why using bloods is pretty pointless. I feel such despair that for the last 14 years I had a doctor willing to treat my symptoms and not my blood results and now I have one who won't even use a scientific approach to treat me let alone a patient based one. I am very concerned now that this drop in all thyroxine will reduce my chances of recovery from M.E CFS, to be honest I despair, I can't see a wAy forward.

[shaws in reply to sulamaye]

Once you get a copy of Dr Toft's article, highlight question 6. She cannot dismiss Dr Toft who was President of the BTA and hopefully she will up your dose again. You will have to stand your ground and they do not know better than us, who suffer when they do stupid things like adjusting medication according to the TSH which is useless as it changes throughout the day.

They mistakenly think we should be kept 'within a range' but Dr Toft says we can be suppressed if it makes us well or T3 added.

I hope you are successful, as you do not want a recurrence of your symptoms.

Dr Toft's article was in Pulse Online, which is the doctors magazine, so she could have read it but unfortunately doctors don't appear to keep up with information which is vital to some of us.

[sulamaye in reply to shaws]

Thank you for your help, I really appreciate it all. I think my best bet is try a new surgery and put the article to them. I know all the surgeries have bad reputations around here but I had such a set to with her about it, I think it best to try with someone who hasn't got pride to maintain. When I get to see the endo I will try the same thing. I tell you you don't know how good the English NHS is until you move to wales. It makes me weep that the welsh people are getting such a terrible service, around here at least, they don't know any better! It's not just been this, my mum and my partner suffer at the hands of the local hospitals and GP s.

[shaws in reply to sulamaye]

I hope you get a nice sympathetic GP who will increase your meds or let you add some T3. It is frustrating you cannot even trial some for a period.

[greygoose in reply to sulamaye]

Sulamaye, Have you considered self-treating?

[sulamaye]

I did for a short while in 1999 before my then GP put me on t3 , but I seem to remember it was rather expensive and as I now have M.E/CFS I have less money, and have spent all my savings on various approaches to trying to recover from M.E.

[Glynisrose]

NO doctor can remove or alter your medication without your permission, unfortunately this includes you not saying anything! NEVER let your doctor titrate your meds by blood tests alone and NEVER let them reduce your meds as they rarely raise them if you need them!

[TSH110 in reply to Glynisrose]

Do you mean you must not argue or tell them you don't agree for it to stand?

[helvella in reply to TSH110]

I see absolutely no possibility of a patient being able to force a doctor to prescribe something that the doctor strongly disagrees with. After all, the doctor takes a considerable legal burden when they prescribe anything so the idea that they would be unable to refuse seems fanciful.

I do not see the mere fact f it being a repeat prescription being of any significance in the discussion/argument.

Rod

[TSH110 in reply to helvella]

That makes sense Rod. So you do not have the right to stay on medication you feel ok on if they have other ideas.

[sulamaye in reply to helvella]

Exactly, it doesn't matter what you want as a patient. I know of no NHS legislation that says you have the right to be given the meds u want when within their NICE guidelines you r being ' treated'

[sulamaye]

I'd be interested to know how you stop them? I had a blazing row with my GP, I refused to agree with her actions, I forcefully told her that what she was doing was not only wrong, but lacked any science as she was nt titrating my meds in the same pattern they had been raised but slashing them. No one could have challenged her more forcefully, she told me the whole practice had discussed me and simply there was nothing I could do! I argued so forcefully against her original decision to cut them down to 50mcg that she phoned an endocrinologist and rang me back to say she was willing to allow me 100mcg of levo. So tell me what else could I do? What would you do to stop her? She prescribes it, the whole practice were telling her to do it, just how could I stop her? I don't think anyone could interpret me as having colluded with her.

[TSH110]

It is shocking such arrogance and ignorance a very dangerous combination. Is it worth putting it writing? If they can't legally change your treatment without your permission then you could challenge any written response to that effect.

I had problems with a GP trying to halve my Levothryoxine when I felt badly under medicated already at the dose she was suggesting my TSH had been 44! I called my endo's secretary and she advised I demand to be referred back to them. I went in with my results and told her I was so concerned I had contacted Guys and wanted a referral and told her my TSH levels on that dose. She backed down straight away. I had moved from London but apparently I had the right to go back to where I had been treated. I self medicate on NDT now and feel loads better. That is one way to get around these incompetents.

[Glynisrose]

You have rights according to the NHS and one of them is that any changes in medication is DISCUSSED and AGREED with the patient, you cannot force a doctor to prescribe you a particular medication but you can sure as hell stop them from altering or changing meds WITHOUT your express PERMISSION!!

[sulamaye]

Bearing in mind all that I've said how?