So angry!!! will not give me results

Phoned doctors surgery 3rd time this week and I am getting less info everytime, told all was normal. Today I have asked for my CRP, but was told that I have to request that off the doctor, recep is not allowed to give that info to me!!! I requested a copy of my full blood results, but she said that also has to be requested from Doc not available to me just like that!! I did manage to get some results yesterday, but only VitD 74 and Folate 10 and B12 644. What on earth can I do. I am becoming less and less bodily able to do things, I ache from head to toe, losing my hair constantly, lack any energy, tired all the time and weight gain is constant. Want to label me with Fybromyalgia, not the fact I had Graves 6 years ago and never felt right since treatment stopped 5 years ago. What can I do, I can't work as I can't concentrate for long enough or feel like moving half the time, worn out within 5 hours. TSH says I am fine apparently, testing at 3.8 (range 0.35-4.5) T3 and T4 will not be tested in my area, and I can't afford to get it done privately because I can't work or claim any benefits. I am at my wits end, whats the point of living, just to sit and feel useless to my husband and 2 kids, I am more of a burden than anything else.

Please help.

44 Replies

  • Hi Gilly

    Sorry you are having such a difficult time. My surgery allows telephone appointments - can you arrange one of those and ask the GP to release the information you need? a tsh is "normal" for the labs but people can feel horrendous with this. Plus TSH isn't everything - I've had okish tsh's before but barely any hormones :)

  • Not having much luck with the other GP's in the surgery, this one I seen last week actually seemed to be understanding, but only works 2 days a week!! I am just sitting here crying and feeling absolutely useless. I have been admitted to hospital twice in last 6 months with unknown diagnosis, think they all reckon I'm a bit nutty. I feel like a prisoner, in fact I think prisoners probably get treated better, I want so much to feel better and live life like I use to before this hell started. I am so worried I am going to loose all ability to even be able to think for myself soon, I am so tired of all this.

  • Write a letter to your GP (or the one you want to speak to but can't). Include a stamped, addressed A4 envelope so they can post the results back to you. Ask for a printout of your blood test results as tactfully as possible. Don't make it sound like you are challenging anything or anybody, just say you are interested in keeping your own records and monitoring your own health.

    If your letter is refused or ignored then you could send another letter later on, getting a bit heavier, quoting the relevant laws etc. But a pleasant, polite letter is always best before the big guns are brought out.

    The receptionist cannot give people results without the approval of the doctor. She could lose her job if she did so.

  • Actually, I think an A4 envelope might be too big. I was getting a bit carried away there. :D

  • You are legally entitled - under the Data Protection Act - to have the printouts of your lab results with their reference ranges. You should not have to beg or plead for this. It is YOUR DATA. Put your request/instruction in writing and keep a copy of your letter/email.

    Their behaviour is disrespectful, patronising and unlawful.

  • Thanks to you all. I wish I could be assertive with doctors and all this, but I am just losing the will I'm afraid, its been going on so long, since 2009. Doctor just thinks I'm a menopausal woman with nothing to do in life, not the fact I feel bl***y lousy most of the time.

  • Give me the number. I'll pretend to be you and get a print out. Cheeky beggars. As londinium said youre entitled...... How dare they withhold information about YOU!

  • Yes, it was bit of a JOBS WORTH today I think. Frustrating as all I wanted was my CRP, could have got it off the other lady yesterday. Do I really need to speak to an emergency Duty GP to get that info, what a waste of time and money. NHS needs sorting out, BIG TIME

  • Calmly call them back and tell them you'd like a full print out please as you're entitled. Do you really want a receptionist to come between you and your health? Go kick ass girl you can do it!

  • I think I should warn you that your practice can charge you for printing out the results. Mine charges £10 for a sheet of A4. They treat it as revenue. Remember that GPs are private practitioners who are contracted to the NHS - always have been. The only way you can see your blood test results for free is to make an appointment to view your records, as long as no more than (I think) 40 days have elapsed since an entry was last made on your file.

    I'm in a similar bind. I need to see some specific info on my file before my next hospital appointment, but I can't shell out the fee the practice is asking without having to cut back on expenditure for medication etc. I can't often drive now and the surgery is 6 miles away. :(

  • £10 for one sheet of paper??? Write to the Practice Manager with a copy to the CCG, they should not be profiteering.

  • It was the new practice manager who tried to charge me! It seems there is no barrier to charging in this way, as far as I know. The £10 I was quoted is their minimum charge on a scale. Not sure what the highest charge is - I didn't ask!

    The last practice manager was an awful person to deal with in many ways, but she never charged me for copies of recent records. On a couple of occasions I needed a lot of copying to be done from my file, covering a period of many years. I was asked to pay a nominal sum per sheet towards printing costs, which I thought was fair enough.

  • Surely that should be 10p per sheet?

    I paid £50 for 14 years worth of medical records despite originally being told it would be £30-£35.

  • I got a 404 Not Found notice when I tried to open your link. I assume it related to a charging scale or something like that?

  • Why don't you try taking your own paper for them to print on? Be much cheaper!

  • The link worked perfectly well for me.

    You may be charged a fee to view your health records.

    Charges for health records that are:

    held electronically: a maximum of £10

    held in part on computer and in part on other media: a maximum of £10

    held entirely on other media: up to a maximum £10 charge, unless the records have been added to in the last 40 days in which case there should be no charge.

    If a person wishes to view their health records and then wants to be provided with copies, this would still come under the one access request. The £10 maximum fee for viewing would be included within the £50 maximum fee for copies of health records, held in part on computer and in part manually.

    By law, you're entitled to receive a response no later than 40 days after your application is received and any relevant fee has been paid.

    More information can be found in the Department of Health's Guidance for Access to Health Records Requests (PDF, 122kb)

    What happens?

    After you have made your request in writing (this includes email) to the data controller at the NHS organisation where your records are held, for example, the hospital that treated you or your GP surgery, you will receive an appointment to see your records.

    If you have asked to see a copy of your records, they should be written out in a way you can understand. This means that abbreviations and complicated medical terms should be explained. If you still don’t understand any part of the record, the health professional who is holding the record should explain it to you.

    Health records of someone who has died

    If you want to view the health records of a deceased person, you can apply in writing to the record holder under the Access to Health Records Act (1990). For more information, see Can I access the medical records (health records) of someone who has died?

    Read the answers to more questions about NHS services and treatments.

    Further information:

    How do I access my medical records (health records)?

    Can I access someone else’s medical records (health records)?

    How long should medical records (health records) be kept for?

    Do I have to tell my employer about my medical history?

    Find health services near you

    About the NHS: health records

    NHS England: How do I request information held about me?

    GOV.UK: power of attorney

    Page last reviewed: 11/01/2013

    Next review due: 11/01/2015

  • £10 - wow! I get charged 90p for a print out at my surgery. Scandalous asking for so much.

  • Wow £10 is a lot of money for ONE sheet! Mine charge 10p a sheet (But have actually never asked me for the money and didn't take it when I offered) I suppose all surgerys are different but you are definitely entitled to a copy of all your results. The receptionist may need the GP or practice managers permission but they cannot refuse you x

  • can't even buck up the courage to phone again or face the receptionists, yet alone be asked to pay for the privilege of knowing what's wrote on my blood test results.

  • Yes, an A4 envelope is also classed as needing a large stamp, so more expensive.

    How awful that you feel so rotten and you aren't getting help. 3.8 for your TSH is too high and needs to be lower. Ask if they can test for thyroid antibodies.

    Hang on in there. Would your husband go with you to the doctor as (and I hate to say this), they take more notice if a male goes with you.

    Let's hope you get your results soon.

  • Antibodies was requested as was T3 but the laboratory refused apparently, my doctor did warn me they won't always do it. The fact they haven't done it since I was taken off Thyroxine back in 2009!! it does worry me what it might be. I can't help but feel they are all trying to hide something.

    But there again I am getting a little paranoid.

    Husband is wonderful, but he won't say boo if I did take him, and this is all too much for him to take in, he's not well himself.

  • Don't worry, he wouldn't have to say anything, just be there so the GP can see you have support. Do you have another doctor in your practice?

  • This GP is the best one in practice, I have tried 6 others all who have said its probably Fybromyalgia and want to put me on Pregablin, I have been fighting it because I feel its been my Thyroid causing inflammation to all my joints and this GP agrees I do have clear inflammation on xray results of my shoulder, but he feels its antibodies attacking my joints caused by arthritis, but agrees I need to see an Endo, but he needs to get a reason to send me with actual results not just my TSH because that is within range as far is Endo is concerned. Its all such a mess.

  • I think you will find so many of us on here have been in this terrible mess and I sympathise with you 100%. He seems to be a fairly understanding doctor, so perhaps you could mention the thyroid anti-bodies again (with your husband present) so that then perhaps he could refer you to the endo if they were positive.

    It is a sorry state of affairs where labs now decide what blood tests a patient needs when they haven't seen the patient, don't know the history and don't seem to understand that just because the TSH is within range, that that patient could still have thyroid disease.

  • There is such a big problem with Thyroid Disease being diagnosed in this country and elsewhere. Very frustrating when its making so many of us feel so lousy. Its unbelieveable that Labs can dictate what and when to test for things, over-riding what a Doctor requests.

    Thanks for everyones advice, you have all kept me going today.

    Maybe I will feel a little stronger and get the courage to phone the surgery again tomorrow!!

  • Ask why then is an unqualified person allowed to give results over the phone.

  • Gillypop, I'm so sorry, it seems I got that charging information wrong. I've just looked at the NHS website, and it implies that you can be charged £10 even for viewing your records. I'm sure this wasn't the case when I last raised the subject with my practice.

  • Another apology: I think I was right the first time, about being able to view records free of charge if no more than 40 days have elapsed since the last entry.

    However, the NHS and DoH websites appear to be at variance on what can be charged for and in which circumstances. This is why I got so confused. The more I look into it, the muddier the picture seems to get. I would try quoting the DoH guidance if you have problems.

    I agree with Muffy - try taking your husband to a consultation. His presence alone may have an impact!

    Best of luck.

  • Thanks so much, yes I would like to take Hubby I think, its so difficult with his work commitments and when the doctor is available, I'm waiting on average 3 weeks a time to see Doc and he only works 2 or 3 days a week. But I do see what everyone is saying, persistence I think is the way.

    Best Regards

  • This topic was covered extensively a few days ago. You can read my views, and other people's, via the link.

    I can't add much more, other than to suggest that your partner calls them for printouts of your lab tests. I don't think you can be charged several pounds for a couple of pages of results and reference ranges. They cannot use this as a means to raise revenue and make a profit. Their price per page must be ethical and in line with ordinary photocopy shops like Rymans.

    Your results and records will probably soon be accessible online. And, if the hackers get their way, it'll be accessible to everyone.

  • I was told by the manager at my practice that their minimum £10 charge was to cover admin costs, but wouldn't give me a breakdown of those costs. She said they are not reimbursed by the NHS when patients access their records, and repeatedly referred to the practice as 'a private business contracted to the NHS. The whole thing stinks to high heaven.

  • Hillwoman,

    I don't want to keep re-hashing and repeating myself. Please see my link!!

    Contact your local &/or regional manager of Nhs England &/or PALS. They're not allowed to charge exorbitant fees or profit from this.

    They tried to charge me £10 for 3 pages of photocopies. Printouts are even simpler - with fingertip merely pressing PRINT. How hard is that?

    Above manager rang them and told them that their fees must be ethical and proportionate and not profiteering. Instead of dropping £10 to 30p, they waived the fee completely.

    Also tell your councillor and MP that they're profiteering and charging more than Rymans etc for providing a simple printout of your lab results.

  • Londinium, I did read your previous thread.

    I got absolutely nowhere when I challenged. I live in a sparsely populated area where there is only one group practice. The former PCT made it clear that although they knew of problems with the practice - and believe me, this was by no means the most serious - they could not take action, because of the huge difficulties in overhauling a sole primary care service in a rural area. The position now is even worse with the CCG - they're all b****y doctors!

  • Contact your Regional Nhs England/PCT and PALS and councillor/MP.

    I pushed my regional manager Nhs England to get involved re their puerile behaviour. When they lied to him about what I wrote in my letter to them, he had them read my letter down the phone to him and saw they'd misinformed him. Until them he'd believed them. I had to push him on everything - even on getting a letter of apology from them cos they thought a verbal apology given from them to him, to pass on to me, was sufficient - it wasn't, as far as I was concerned.

    Either you accept position, or you contact people who are higher up.

    If you think it's bad now, wait till you reach a care home. These people are w*****s.

  • I won't have the money for a care home. :) But I take your point.

  • Care homes, hospitals, GP practices, clinics, etc... as seen in the media every day of every year.

    "Lessons will be learned" means... "we knew all along, and although we were/are employed as healthcare workers we didn't, and still don't, give a toss".

  • Naturethroid and Armour are readily available online without a prescription and are affordable. I'd order some and use it until I start to feel better. Focusing on the mean receptionist and the officious lab isn't helping. Treat yourself until you muster up the strength and courage to stand up on your hind legs and advocate for yourself.

  • Thanks Kraken, yes maybe that is an idea, I would just like to know what I was dealing with really. I am considering private blood tests, think it may be the way to go. But please nobody suggest Blue Horizon, I found out that operates from my Doctors surgery!!! and its my GP that runs it. All a bit strange really. But I am trying not to cloud my judgement on that.

  • The NHS link says a maximum of £10 making it the minimum must be challenged.These docs are on over £100k per year{Labour doubled their pay over night at the same time as reducing their commoitments.Many of them are just greedy. One in South yorks owned a care home ,restaurant,and a garage and employed his son as practice manager1 Another made his receptionist pay for stamps for all outgoing mail-difficult to make it up.

  • Hopefully, at least for getting to view test results, this will resolve with Patient Access in April this year.

    I have signed up to Patient Access at my surgery - said the only thing I could do was make one appointment - until I took in proof of ID. Took in my passport and the receptionist had no idea whatsoever what it was about or what to do with it. :-) Oh, well, I have done my bit to get registered so will have to see what happens.

  • Ferritin is dire MUST BE HALFWAY in its range

    TSH MUST BE under 1

    After Graves your body is so sensitised to high levels of thyroid you can never again function on "normal"

    you need your T4 and t3 right at the top of their ranges or even over

    Old Swedish research

    if your doctors wont face this self treat with NDT fact you will be better off on NDT anyway

  • You have a right to your test results and don't let anyone tell you otherwise. I insist that my are printed out every time and I have never paid a penny for them. you need this information so that you can watch what is happening with your own levels and then you are able to tell when you feel better and when you feel worse. My doctors receptionist always reads them out to me if I can't get there straight away to pick up a copy. Remember you are the service user and they are the provider. You are not considered to lack capacity and therefore you should be completely involved in all aspects of your care. Good luck xx

  • I had the same problem today. I was told the Doctor would have to authorise it. I'm so tired of having to make a fuss about it.

  • The doctor does have to authorise you getting copies of your notes. If it was a receptionist who told you this she was right. Her job depends on her following the rules set by her employers - the doctors.

    There are loopholes in the law allowing people to see their medical records, e.g. if there are mental health problems, or if third parties are mentioned. It is the doctor who must decide if any of these loopholes apply, not the receptionist.

    If you ask the receptionist to ask the doctor on your behalf for permission to get copies, then you ought to get them in a day or two. But if you are refused, the person to see or speak to or write to is the doctor, not the receptionist.

    In some practices the receptionists will give out copies without quibbling, but people just have to test the waters themselves to see how their surgery reacts.

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