Thyroid UK
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Refused blood test results & Endo can’t supervise me! 😩

Sorry for the long post & rant!!

Firstly due to changes in legislation and after a lengthy meeting with my practice manager. I have been refused a print out of my blood test results done on Monday.

They were abnormal ie my FT4 so lab has requested a repeat blood test. I expected a low FT4 as I am on T3 only. I requested a copy for my own personal records and to discuss with my Endo so I could increase my T3 with his supervision. This was refused by one GP. I’ve never had a problem before so went into see the practice mgr to discuss and get them! Even showing the NHS choices website stating I can have access informally with going down the SAR route.

In the end I agreed to put it in writing for the practice mgr to investigate and come back to me. But in future I would need to do a letter each time I required a result which seems totally bizarre. The practice cannot provide the online service until its introduced in our region in may 2018.

So I ring my Endo (he has access online of my results). Firstly although I’m low in range on FT3 he says if I increase by 1/4 25mcg he thinks it’ll take me over range so advises me not to increase. But I feel poorly so going to increase anyway.

Also the hospital have decided that they can no longer supervise patients self medicating unless they get a private prescription and buy from the UK supplier at £258 pcm for 20mcg per day. Most can’t afford this.

He said morally it’s wrong that he can no longer look after me but his hands are tied by his employer. He is writing to my GP to advise him also. And said my GP might supervise me. But I know they won’t as he freaked when I first said I was going to self medicate on T3 as he is not insured. I also then won’t be able to get my bloods checked at my surgery. And what if I’m sick and it’s my thyroid? Doesn’t the NHS have a responsibility to look after me if I have hypothyroidism even if I’m not taking Levothyroxine?

I feel at a total loss today! I’m also under rheumatology with a rare muscle disease and connective tissue disease. So value my health care professionals looking after me. It’s scary to feel on my own taking T3 with no monitoring when I’ve been struggling for 2 years to get it stabilised.

I value this forum greatly, and without it I wouldn’t be where I am now. I probably know more than my GP’s but feeling isolated with a health condition that I have to self medicate because it’s so expensive the NHS won’t supply it is disgusting! They won’t pay £258 pcm at least for me yet they expect me to find the money and like many others I’m off sick disabled in benefits. Just feel like I’m fighting a losing battle.

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This is a wretched state of affairs. Patients are being left in an untenable, unsustainable condition. What are they suggesting? That you revert to levo. only altho' it doesn't work for you as that would enable them to supervise your care?

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Yes that or I pay privately for T3 but have to buy it in the UK from the same source the NHS refuse to pay for??? Isn’t this discrimination?

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I bought 100 x 5mcg T3 from private endo for £76.

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It has to be the licensed T3 available on the NHS in the UK which I think there is only 1 or 2 both cost approx £258 per 25mcg a month

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Hi, I saw Prof Toft in Edinburgh last week.They supplied me with a 100 x 5mcg tablets which cost me £76. It came with an " unlicensed and off label medicines" leaflet. I got 5mcg tabs as he prescribed 5mcgs twice a day but I assume they have other strengths available had I needed them.

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That’s great news I’m glad your being looked after. Unfortunately my Endo wants to prescribe but the hospital still had T3 blacklisted so I can’t get it. Plus am on 37.5mcg a day. Are the laws different in Scotland? Although each hospital makes its own decisions and run independently like CCG’s.

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I paid to see Prof Toft privately as he has retired from NHS now so I expect that is why it was "easy" to get. I got 5mcgs tablets as he wants to me take 5 mcgs twice a day alongside levo, like I say I assume they would have been able to supply a higher strength had I reqd it. I agree it is completely unacceptable the lengths people are forced to go to. He did say that he feels the T3 situation will get resolved to the satisfaction of patients eventually. He is meeting with government minister in Nov to discuss but he feels parliament will respond more to public pressure rather than doctors. Small comfort meantime I know.

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Well I’m buying abroad like most on here atm. But for my Endo to look after me I have to be on UK licensed T3 so no light at the end of the tunnel for me so might as well continue to self medicate until the situation improves. But thank you for commenting it’s nice to know there are doctors out there who want to prescribe it to us! X

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Did they show you the legislation, as I'd be inclined to look this up if the practice is that obstructive. It's your body the results are for. I keep a copy of standard letters on my computer, so I can just change the date, etc. It's still a poor show that you have to do so, & that the medical establishment have let you down so badly.

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She wasn’t being obstructive just cautious so is investigating it. She says it’s a minefield and if information is supplied incorrectly a GP can be struck off.

I said I’d do a template for future results. However I doubt I’ll be able to get my thyroid checked if no one will supervise me!

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I'm under the impression that your personal information cannot be witheld. Seems like she's a bit of a control freak to tell you that, & your GP is covering up? Maybe I'm just paranoid...

Do you feel confident enough to judge the efficacy of your medication dose? I'm unable to cover the cost of private tests as well as medication, so do the latter. Any hiccoughs I've had have been ironed out with the help of all the good folks on here. Still a pity that the NHS let me down so I had to do so, though I'd rather feel better with TUK help than trust the medics.

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No she’s just being cautious and thorough. If she thought she could provide the info then she would but she feels she’s needs to look into it. Hopefully when she’s investigated it she will inform all doctors and staff so they are aware of legislation. So although a battle for me right now hopefully once they’ve checked NHS policies and data protection this won’t be a problem in the future for me or other patients at the practice. Just surprising I’ve had no issues prior to this week and they should already be aware of my legal rights to my medical records and results.

I’m just getting there with my T3 only dose. But with other medical issues incl a rare muscle disease I’m scared and want and need to be looked after. I will have to manage but surely I have a right to care on the NHS the same as everyone else! Why should a certain group of us not get that care because we NEED T3 but it’s too expensive to supply. It’s just wrong and when your sick we haven’t the fight in us.

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I hope you get somewhere soon, & the medical staff everywhere you go are more helpful. Nobody should have to feel unsupported or unhelped!

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Thank you

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It’s not a minefield. The law is quite clear, you are entitled to a copy of data about you. It’s your data. It’s a printout, how could it be supplied incorrectly? I very much doubt a GP would be struck off for a printer error. Ridiculous excuses.

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For a surgery introducing a new system including training etc it is for them not me. They just want me to put it in writing every time which I shouldn’t have to. They’ve introduced online access this month so I’ll be putting it in writing that I want and need access straight away so I can access my results as I’m entitled

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General Data Protection Regulation (GDPR) come into force in the UK on 25 May 2018. This puts much greater onus on data holders to ensure access without difficulty and, usually, without charge.

The ICO would absolutely agree that you should not have to put a request in writing. They have even held that a tweet can count as a valid subject access request in some circumstances.

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That’s very interesting to know I appreciate you sharing this information! Thank you

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Have a read here of the current how to submit a request:

ico.org.uk/for-the-public/p...

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MissFG,

The 2012 Data Protection Act entitles patients to their test results. I don't believe it has been superseded by new legislation. Ask your PM what this alleged new legislation is?

Three or four years ago when Mercury Pharma was the sole UK T3 supplier and supply was interrupted GPs were advised to prescribe German and French Liothyronine even though they were unlicensed in the UK. German and French T3 is much more affordable than UK T3 so if it was good enough then why is it not good enough now instead of expecting you to pay £258+ for UK Liothyronine?

I think you need to write to PALS and cc your MP and question why NHS will only monitor you if you take UK T3 which is unaffordable and won't monitor you if you access Liothyronine yourself.

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Tbh Clutter I think they’re having some much training as a surgery and with the online Sumatran being introduced she is unsure of legalisation so is checking to protect the practice. If I Request my records via an SAR form that will only provide up to date medical records and won’t be ongoing for future tests will it? So if I want them until the online system is introduced I’ll have to put it in writing every time. Unless of course once they’ve investigated this they are willing to supply me in future at my request?

I’m so tired and sick getting everyday treatment such as the egg free flu vaccine is a battle I don’t have the strength to fight the system it just makes me feel tearful. Stress makes me sick and this is just more stress I felt my need.

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MissFG,

You shouldn't have to make written request every time you want your test results but if the PM is being stupid about it just take a letter or send an email when you go to have a blood test and you should be able to pick up the results a couple of days later.

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That’s what I thought. Maybe once she’s looked into it, it’ll be clarified for me and other patients and the practice in future. Just seems so daft that a simple request has suddenly become a huge issue!

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Whenever I request a copy of blood results, I have to sign a form at reception and they are happy.

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They’re obviously more organised!

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Sourcing your own T3, which should NOT be the case will be much cheaper than the cost to the NHS. There are two other T3's available at less cost but these are unlicenced so you are caught in between as doctors wont prescribe unlicensed..

I self-medicate on T3 and am well thankfully. I've gone the rounds like most on this forum, like the Scarlet Pimpernel - ie. you seek it here, you seek it there, you seek it everywhere.

I would make an appointment to see your local MP and you can give him the information from Thyroiduk.org.uk about the withdrawal. The BTF also stated that if well on T3 it should not be removed but this has been ignored. Excerpt:

The current situation – triggered by what would appear to be an unjustifiable cost increase – has left patients, and many of their doctors, in a very difficult position. We are hearing from patients who have been treated with L-T3 for many years who feel they have now been abandoned without care, and whose doctors, no longer able to prescribe it, are leaving them to their own devices and in some cases even advising them to buy L-T3 on the internet (where it is available from other countries, and at much lower prices than in the UK). Sadly the relationship of trust between doctor and patient has been seriously compromised. Patients are confused as to the reason why their doctor’s decision to prescribe L-T3, based on clinical judgement, is now being blocked. Is the real reason for the restriction due to recent price increases or to sudden doubts about the strength of evidence for its use? Should clinical need not come before financial considerations? Who should have the final say about whether there has been an improvement in patient well-being?

The proliferation of online health information and forums has added to the confusion. Access to peer support is often beneficial but unfortunately patients sometimes find misleading and false information about their condition and the treatment options, and the consequence of this can lead to faith in their own doctors being undermined, and they are left concerned and confused.

btf-thyroid.org/information...

and from BTA

healthunlocked.com/thyroidu...

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If I went to my MP could they act on my behalf? Even if he would, would it even make the slightest difference to me personally? Can one MP turn the whole system around or even the one hospital who treats me personally?

It’s a battle many of us in the UK face, but I’m on my own, with other illnesses on benefits not working trying to bring up my daughter on my own sick! Seriously if I go to my MP is it likely to really make any difference to me in the near future?

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I don't know but the more people complain - after all your health is at stake and it would be good if Endocrinologists would not insist that levothyroxine fits all.

You could refer your MP to Thyroiduk.org.uk Lyn Mynott who would be able to confirm what is happening to many all over the UK. Those who have no access to the internet will also be completely stunned that they can no longer get the hormones that they used to.

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MissFG I had an appointment with my MP earlier this year to discuss my funding two health conditions which is not sustainable. She offered to make contact with my GP but warned me that her experience is that when she's become involved the patient is left to deal with very obstructive GPs who've been hacked off at an MP becoming involved.

It could be worth speaking with the Care Quality Commission or even the Patients Association to make them aware of what patients are being subjected to.

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Yes that’s what I don’t want is upsetting my GP’s when their hands are tied by the trusts the same as my Endo is. However it’s my Endocrinologist head of department who has stopped supervision due to liability as patients are having to source their own and they have no control. My Endo wants to help just can’t

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MissFG I don't recall ever seeing a patient on here saying that their Endo has refused to what is effectively overseeing self medication. Ask your Endo for proof of this liability.

Sorry, I'm very cynical when it comes to the medical profession and don't believe a word they say!

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Sounds like they’ve been very thorough looking into it with the head of Endocrinology and the head of pharmaceuticals at Hallamshire Hospital. A letter is being sent out to both myself and my GP. But if he won’t supervise me then my GP definitely won’t. My GP told me a year ago their insurance doesn’t cover them.

My Endo really isn’t happy and said it’s morally wrong however he has to do as he is advised. He said I could try to find a private doctor who may look after me buying overseas but again it’s an expense I can’t afford and shouldn’t have to do.

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I'd definitely talk with the CQC and the Patients Association. In fact it would be interesting to know what the GMC have to say.

Do keep us updated and could be worth keeping lynmynott in the loop.

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Once I get my letter I’ll post it on here. But I’ll also do a cover letter and send out to them. Who knows what could help. May even send it to some press contacts I have maybe raise some further awareness to our difficulties in the UK.

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Please do, thanks. Would love to know how they stand legally on this cos frankly it could end up backfiring on them.

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Surely legally I’d have a case for discrimination or neglect? 🤷🏼‍♀️

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Would certainly hope so cos from where I'm sitting it's looking as though the NHS wants to kill off patients. Is this Jeremy's latest bright idea of saving money?

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Miss FG.

I am so so sorry you are going through all this .I was so upset reading all this.

My blood boils .

Why can't you endo prescribe t3 on the nhs. When my endo said if they say the patient needs it then the powers that be back off .so why can't yours .I would ask your mp why different rules being applied all over the place .

I didnt convert t4 to t3 enough . So started on t3 only .tried reintroducing t4 but makes me ill .

Also if I ask for a print out of my results go just prints it .

So must be ok to do .

Please contact pals .patient advice and liaison service. They are like free solicitors and a breath of fresh air .

And then mp if no joy .so sorry you are having all this s*^t .

My Sincere Best wishes

Poppy

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I'm so sorry about your predicament, and I feel it’s a political problem, and something that MPs should be involved with- mine has written to Jeremy Hunt and NHS boss. If I were a pharmaceutical company boss I wold be worried about where my shedloads of money were going to come from, now CCGs are banning T3. I would persuade the NHS to force patients to buy my very expensive T3 privately, rather than more cheaply elsewhere. Am I cynical?

Just sending you a private message...

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I wonder if the practice manager freaked out when you mention SAR? The point is that most practices now give access to blood test results but getting access to your whole record is not available until 2018. However, if practice manager thinks you might put in a SAR request I wonder if there are notes in your medical record that they would prefer to delete so they are delaying your request to give them time. I'm just thinking about someone else who posted on this forum who had put in a request, got their notes and saw GP had written rather personal and unkind opinions.

I would point out that many people self medicate with illegal and extremely harmful drugs and even overdose but the NHS does not refuse to treat them so it seems an extreme attitude to refuse blood tests and basic healthcare even if they can't provide T3 medication.

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Yes I saw that post. She said the online access had pitfalls as sometimes info is included that patients shouldn’t see as in names etc due to data protection rather than derogatory comments about patients. So she said they’re not looking forward to it being introduced due to the work involved.

When I mentioned SAR she was fine as she does want to help and has before wherever she could which is why I ask to speak or see her. Although as far as I know on NHS choices SAR is available now you just have to ask for a form and there maybe a charge. I said I could approach my hospital and practice but why when I only want this set of bloods which I’m legally entitled to.

OMG your right! Do they refuse to care and look after drug addicts, alcoholics, smokers etc which are all harmful and cost the NHS money. You make a very good point!

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Your practice is defying NHS instructions to provide online access to blood test results from 2015.

NHS medical records – getting them.

nhs.uk/chq/pages/1309.aspx?...

emishealth.com/media/1537/0...

Contact your local Healthwatch and ask them to find out why surgeries in your area are not making online results available.

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Last thing I want to get their backs up and isolate myself without giving them the opportunity to respond to me. I’m sure once she’s checked legislation she’ll see I have a right to access. However if I have to I’ll have no choice but to take it further

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Very wise. Hopefully they'll get back to you with something positive. It is difficult when you don't want to upset them. Hopefully you won't have to take it further. They shouldn't really have to check legislation though since the rules came in 2 years ago, they're a bit behind but never mind.

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A new Data Protection Act is expected next year but not aware of any recent changes to access to personal information.

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I think all the staff are more on the ball at the surgery as they’ve all been receiving training. But obviously still have a lot to learn on this

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Miss FG, I'm so sorry to hear this. I haven't heard about any new legislation. Is there any chance you could ask for the specific legislation for Thyroid UK?

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Thanks Lynmynott I think it’s more the staff at the surgery are undergoing training on existing legislation and have little knowledge re: data protection. Therefore the practice mgr is researching patients accessing medical records so they can respond accurately and not share any info they shouldn’t so they meet NHS regulations. I’m sure they will come back to me and allow me access again

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MissFG,

I understand that there might be additional details to handle, but the NHS itself is pretty clear about what is allowed. It doesn't take much to find this:

nhs.uk/NHSEngland/thenhs/re...

Which at least shows that the usual case is that patients should be allowed access - and exceptions are very much the unusual and special cases.

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Thank you. I also showed them this and the NHS choices website page on it. But I have no option but to allow them to investigate it and come back to me hopefully with the appropriate response

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Me too- off work so couldn't afford this insane cost brought about by government mismanagement

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The new consultation changes things even though it’s still red lighted. So maybe worth contacting you Endo as I have. I’ve a battle as it’s my hospital that gave actually blacklisted T3 but they’ll have to change it now based on the new consultation guide lines.

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Reply is below, in the wrong box, sorry!

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Can I ask what your connective tissue problem is? I have EDS, which makes a lot of extra work for my GP, which I feel bad about, and I also find being a self-medicating thyroid person to be an added layer of difficulty to negotiate here. The GP insurance thing is something I hadn’t thought of. Thanks, Ginny

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I’m under a rheumatologist a Connective Tissue Disease is a title for a group of illnesses including arthritis, lupus etc. I’ve got focal myosotis but improving, arthritis and am being tested for Sjögrens. I’ve also referrals to gastro and neurology.

My main issue is my hashimotos though and as I was so sick two years ago my body is struggling to recover even on T3. My GP is lovely but I try to not go to much to him as my consultants are the best ppl to help me.

My GP knows very little on FT3 and suppressed TSH and as I self medicated acknowledges I know more in this area.

The CCG in my area say if there is a medical requirement a specialist should prescribe T3 as a GP is not knowledgeable enough in this area. So it’s the hospitals and Endocrinologists who need to support and prescribe patients with a clinical need

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Thanks! I ask because I also value the help of my very nice gp with my own (non-inflammatory) connective tissue problem, EDS, and I would hate to make his job harder re insurance, but the self-medicating seems unavoidable (although he did offer to send me to a different endocrinologist, and maybe I should take up his offer-although the last one was a dismal waste of a long time) G x

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It has to come from an endocrinologist. My GP has said he wants to prescribe me it and would but it has to come from an endocrinologist initially to instruct your GP.

They consider it a specialist medication that not everyone requires so if there is a clinical need it needs to be investigated and proven by an endocrinologist.

My Endocrinologist wanted to give it to me but the hospital stopped him! It’s just an ongoing battle I’m afraid x

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It does feel like discrimination. How come diabetics haven’t had their insulin withdrawn? (Though what a bad idea this would be).

We should get T3 and NDT on NHS. Why else would we have medical exemption certificates? It’s crazy

But if we have to buy our own drugs, surely we shouldn’t be buying them out of net pay, they should be tax deductible. And surely we shouldn’t be paying national insurance at the full rate too.

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