Is this normal behaviour for the doctors surger... - Thyroid UK

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Is this normal behaviour for the doctors surgery!!!

miss_mae profile image
26 Replies

So I had some blood tests last week, I have under-active thyroid and I was getting tested for vit b12, folates, ferritin, Free t3, free t4 and TSH levels.

I called today for the results, and was told by the receptionist that my levels were normal.

That was it, normal, for all those tests, thats what Im supposed to go away happy knowing.

When I asked her if I could have a copy of all the results she asked me why.....WHY!!! Remember she is not the doctor here!! I said because I would like to see the results myself, she responded that she would have to check with my doctor that Im allowed to even have them, and if she agrees, it will cost me £10.

What is going on!!! Im so mad right now!! Has this happened to anyone else? How dare the doctor, let alone the receptionist question why I would want to see my results! And how can they not allow me to have them?? Is this against the law? Surely we are allowed to see our own blood results!!!

Any help on this matter, as to what to do if they refuse me to see them, would be greatly appreciated!

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miss_mae
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26 Replies
Redditch profile image
Redditch

Rubbish....it's your result and you are entitled... and you don't have to pay it's not a freedom of information request it's your blood results.. just write to you doctor and ask nicely for a copy of the results...

It's interesting that they did all those tests.. mostly they skim the surface so in that sense they are quite good.. but if they ARE "normal" and you still feel rubbish. you need to see someone who is listening.. change your GP or get an endo.. I wrote to mine... a long letter.. see extract below

Dear Dr

After my consultation on Monday 25th February, I thought I should write to you and express more fully the issues that I am having.

Whilst I fully appreciate your investigations into other underlying or possibly related auto-immune conditions that may be affecting me, I am pretty certain that my symptoms are all commonly Hypo-thyroidism symptoms that you are dismissing because of my “normal” blood results.

You clearly don’t know much about this condition because “normal” blood results don’t necessarily resolve the symptoms..

“blood tests for TSH, free T4, and free T3 levels are of limited value. They are meaningful only when they are way out of range. If they are in-range or close to in-range, they are useless in telling you whether you have enough thyroid hormone regulation. The only thing they tell us is the effect of the pituitary’s TSH on the thyroid gland, and the effect of the thyroid gland’s hormones on the pituitary. They tell us nothing whatever about the effects of thyroid hormone on the cells of any other body tissues”.

Reference

1. Lowe, J.C.: The Metabolic Treatment of Fibromyalgia. Boulder, McDowell Publishing Co., 2000.

I understand that whilst most patients feel well when their blood results are “normal”.. there is a significant minority who don’t and I believe I must be one as although my symptoms are probably half as bad as when I started on this journey, I am still putting on weight, still very tired in the afternoons, have memory and “mental fog” issues so they are still severe enough to prevent me going back to work full time which is my immediate concern

There are three types of patients who don’t feel well on “normal” ranges…

a) Those who need OPTIMAL ranges of other vitamins and blood levels in order to use thyroxine effectively at a cellular level

b) Those who need a little more Levothyroxine to feel well Or absorb NDT or Natural Desiccated thryroxine better than Levothyroxine commonly prescribed

c) Those who need supplements of T3 as well as or instead of T4 to feel well

I think I must be one of these.. You didn’t share my actual results with me and kept telling me not to self-diagnose, but with all due respect, sir. I am a well-educated professional.. of course I’ve read up on my condition.. I had 5 months off work to read up on it. I have read the BMA book “understanding thyroid disorders” by Anthony Toft and “Your Thyroid, how to keep it healthy” by Dr Peatfield.

I don’t know what my blood test results were but OPTIMAL for someone with my condition is a TSH of around 1.. and FT4 in the higher range - possibly as high as 28-30

Some people (around 13%) don't do well on thyroxine only and it is mainly these people who need their TSH much lower in order to feel well. They often find they need their TSH below 1 to feel well. This is by no means the case for everyone. All patients are different.

A patient “normalised” on 25mcg will still have a reasonable amount of thyroid function so will be making their own thyroid hormones, just not quite enough so need a "top up" with thyroxine. Because thyroxine only contains one hormone which needs to be converted, patients whose thyroid makes very little itself often need their TSH lower in order to have enough thyroxine to be converted.

Ultimately one should be guided by how the patient feels. If they feel well then they are probably on the right dose for them and there is no need to try to lower TSH.

“It is also noted that other factors affect the efficient use of thyroid supplements; serum iron, ferritin (70-90 minimum value), vitamin B12 (at least 500 for optimal health), folate (middle of the range at least) and vitamin D 80. All of these are important for the metabolism and are important for the cells to be able to use the thyroid hormones being taken. Deficiencies also all have symptoms similar to hypothyroidism, including fatigue and depression to name but two.

With the above optimised and checking that cortisol levels are good, if a patient still doesn’t feel well, it may be that they need something different from levothyroxine but it can be difficult to get alternative treatments on the NHS.

With the right treatment it is possible to achieve relief of all symptoms. It does take some work getting vitamins and minerals and adrenals (cortisol levels) optimised. After that, switching to NDT (natural dessicated thyroid) seems to have improved things for many patients”

Presumably, my recent tests have not revealed anything more likely than me being one of the 13% who don’t feel well when the bloods are “normal”.

So I would like to first try another 25mcg of Levothyroxine as it is most likely that although “normal” I am not “optimal” for me. This combined with

• Ferritin close to 90

• B12 of 500

• D of 80

• Folate of upper middle range

• Good cortisol levels

Should get me back to work…

Before this, I was in a Senior Management role with a six figure salary, I am currently working in a very junior Project Manager role for three days a week and not really doing a good job of it..

I need to get back to work, I am the bread-winner in my family, and my career is important to me, not to mention the income. I can bring in my books so that you can satisfy yourself that I’m not making this up, or if not, please just refer me to someone who has more expertise in this area.

in reply toRedditch

Excellent! It's the only way to get things done.

Moggie profile image
Moggie

Maybe you should put your feeling down in a letter to the practise manager asking him/her why they are allowing an untrained/unqualified medical person to give opinions on whether blood results are acceptable. Also you might want to mention her comments regarding your request for copies of these results.

Here is a link to information about gaining access to your medical information and a really good draft letter.

ico.org.uk/for_the_public/p...

Moggie x

Totoro profile image
Totoro in reply toMoggie

I agree you should bring this up politely with the practice manager. Otherwise that receptionist will be denying all the patients there their own results.

miss_mae profile image
miss_mae

Thank you Redditch and Moggie for your helpful and understanding reply's. Im sitting here in amazement that a receptionist feels she can speak to someone this way, I forgot to add that when she said there was a £10 charge for the results, I said that I thought this was odd, not really, was her reply, in a rude manner.

I am so shocked that we as patients could be spoken to this way.

Redditch your letter to your gp is outstanding, I will be reading over it a few times, your knowledge on the thyroid is fantastic and has made me want to learn even more, thank you so much for sharing your information with me, I really appreciate it.

Moggie, thank you too for your words of wisdom, the way I feel right now I think it would be better for me to write it down than to go there and speak face to face with the receptionist and/or doctor. I will have a good read of the link and consider putting in a letter of complaint against the receptionist, thank you for replying to my question, again, I really appreciate it.

shaws profile image
shawsAdministrator in reply tomiss_mae

Some Receptionists unfortunately (though not all thank goodness) have an attitude.

It is your health, your blood test results and are entitled. She has no right to tell you 'normal' when they may be in the normal range but probably the TSH is not below 1.

Say to your GP that you now want copies of all your blood test results, with the ranges, for your own records so that you can refer to them when needed. You intend to recover your health and are doing research. He should then put a note on your file to that effect.

Totoro profile image
Totoro in reply tomiss_mae

About the fee there is this:

nhs.uk/chq/Pages/2635.aspx?...

Fees to access health records

Accessing health records is free of charge if:

the records have been updated in the previous 40 days

they are in the form of paper records such as letters, X-rays or films

you don’t require a copy

I'm not sure if those three categories have to all be met to get access for free or if it's just one of them. It's not clear. Worth ringing someone in the NHS to find out perhaps.

In any case results from lab work are often sent back from the lab on paper so as long as you just wrote down the results yourself you would satisfy all the conditions of getting them free.

Totoro x

miss_mae profile image
miss_mae in reply toTotoro

Interesting Totoro, so actually I don't have to pay, as my records have been updated within the last 40 days, I will ring the NHS tho just to make sure, I want to have all the info I need so I know what Im talking about. Thank you for the link too!

Jane104 profile image
Jane104 in reply tomiss_mae

Just ask them to dictate all the numbers (with all the reference ranges) over the phone, or ask if you can copy them from the screen in the surgery. Then say it would be easier if they just give you a printout! You are entitled to 'see' your records free of charge if they are less than 40 days old but they are entitled to charge for copies.

Moggie profile image
Moggie in reply tomiss_mae

For £10 you can have copies of ALL your past blood results, not just the recent ones - teach then a lesson, pay the £10 and then ask for every single blood test result that you have ever had.

That will keep the rude receptionist quite for a couple of hours.lol

Moggie c

miss_mae profile image
miss_mae in reply toMoggie

Haha, this is great! Is there a link to this info to show that if I do pay the £10, they have to legally give me all my results?

Moggie profile image
Moggie in reply tomiss_mae

Yes it is in the link that I sent you. You just have to remember when you joined the surgery or when blood results first started for the first date (you need to write a to date and a from date in the request letter) and then the from date would be "present"

Does that make sense.

p.s. There is also a phone number to phone for info in the link - maybe give them a ring to clarify that it will only cost £10 for ALL your blood results, which I'm almost sure it does.

Moggie x

p.s. Let us know if you do put in a complaint/request and how it went.

miss_mae profile image
miss_mae in reply toMoggie

Thank you Moggie, Ive plenty of reading to do tonight! Ive just looked up who the practise manager is, so I know who to address my letter to, I have the receptionist's first name, now need to try and find out her surname!

I'll let you know when I put my letter of complaint in, and what results from this.

Crazy, all I want are my blood results, why is such a big deal made of it all??

Moggie profile image
Moggie in reply tomiss_mae

The more we know the less they can get away with - that why the GP's don't like us knowing to much.

Moggie x

I made a request in writing to my GP that I wished to see my medical records as I needed to be prepared for Endo appointment. This may or may not be strictly true!

Some months ago I made a formal complaint against the GP, who's actually Head of Practice, for failing to help me regain my health. Have a good meeting with him and Deputy Practice Manager.

Anyway, appointment was made with DPM and I looked at my test results and wrote it all down. Was not charged and, in any case, there's no bloomin' way I'd pay having been left ill for years.

Be assertive, write a letter of complaint to Practice Manager about the Receptionist. Only way to get things done!

miss_mae profile image
miss_mae in reply to

If I was seeing a private doctor cinnamon_girl, I would understand that there could be a charge, but the NHS??

Thats great that you challenged your GP, what happened after your meeting with him and the DPM?

in reply tomiss_mae

Well, fair enough if they've had to print lots of pages but, in my opinion, when they've *failed to listen/done nothing/lacking knowledge/lazy etc* (delete as appropriate) they need to be reminded that they are Civil Servants. Paid for by our Taxes. We've therefore paid for a service and not getting it!

Following meeting, it was an eye-opener for GP and he realises, although can't admit, that I've been treated, or rather untreated, badly.

On the other hand, very tongue in cheek here, he was probably relieved to pass me on to an Endo so as he wouldn't need to deal with my assertiveness/argumentativeness!!

Good luck with it all and do let us know how you get on.

helvella profile image
helvellaAdministrator in reply to

You do not have to explain or justify your request at all.

You should not be asked why.

Rod

rosetrees profile image
rosetrees

What's with some doctors? When I asked for my blood tests going back a few years, they simply printed them off and left them in an envelope for the receptionist to give me. Mind you, the receptionists at my surgery are wonderful, friendly people. (The polar opposite of where I used to live).

When I asked my GP for a print-out of my latest results he just clicked on print and gave them to me straight away. He has a printer on his desk.

helvella profile image
helvellaAdministrator in reply torosetrees

That is exactly how it should be, in my opinion. With at most a 10p "honesty box" collection to cover actual cost of paper if they think it necessary.

richard123 profile image
richard123

I bet they wish they had just handed over the results now

Lol :)

Ruby1 profile image
Ruby1

What about arranging an appointment to see your doctor as you're still feeling rubbish - so you do need to get help - See what else they might be able to check. When there, ask the doctor if you could have a copy of the results - or write them down there and then.

This would be cheaper and hopefully you might get nearer finding out why you feel so rubbish.

Giving them the benefit of the doubt, the receptionist may not know the protocol and the doctor may have thought you wanted all your records.

Best of luck.

belwom profile image
belwom

My receptionists are nice but also just tell me 'normal'. They do print out tests from the last 3 months without charging or asking questions. The receptionists' attitude is probably a reflection of what the doctors tell them to tell patients when they ring up for their results. There is however no reason to be rude.

miss_mae profile image
miss_mae

Thank you to everyone for your comments, I decided to make an appointment with my doctor so Im going next week. No point wasting my time with this rude lady today (She wanted me to ring her this afternoon so she could let me know if Im allowed my results!) I'll definitely be writing a letter of complaint against her, and talking to my doctor about it.

One more bit of news, I met a lady about 2 weeks ago, we got talking and she works as a receptionist at a doctors surgery, so we started talking about all things medical, and I told her about my thyroid and how it affects me, and how this site has given me so much information.

I told her about T3 tests and how I'd never heard of it, never been tested, never been mentioned, and that I felt as tho this is because doctors don't want to prescribe it as its expensive for the medication should someone need it, she pulled a face, and I asked her what was wrong, and she said that in her surgery, the only ones who get extra tests for thyroid are the ones who know and ask.

She was really embarrassed, I said this wasn't her fault, and when I told her more about how having an under-active thyroid affects you she was upset that this doesn't seem to be treated properly.

So it seems as tho we need to know as much as we can about this illness so we know what to ask for at the doctors, this has definitely made me re-think about how much trust I put into my doctors budgetary controlled hands!

I have a lot of reading to do this weekend!!

Zabby profile image
Zabby

My surgery just charges a 50p printing fee, which I think is fine. The only time they've refused to give them to me was when the doctor who'd viewed them had written that I needed to speak to someone about the results (my TSH was too high, which I was expecting) and they weren't allowed to give me the results until I'd seen/spoken to the doctor, which I think is understandable. I would be fuming if I were you!

Mrs_Sch profile image
Mrs_Sch

My last surgery told me that my results were 'normal' and 'fine' for 6 years, occasionally they gave me a number, but with nothing to go against, and never any clues about what it was related to, I just trusted them. (foolishly)

Recently, I had my 3rd miscarriage, following a lack of care from my GP. I won't go into it, but I had to threaten him with legal action for medical negligence to give him a kick up the bum. He finally sent me to the endo, who took one look at my results and said that they had never been either 'fine' or 'normal', and that I'd been on the wrong dosage for 7 years 'if I had even been treated correctly in the first place'.

Brilliant.

On a less related note: Husband has Osgood Slatters disease in his knee, went to the same practice today (different GP). GP hadn't read his notes, didn't know what was wrong with him, couldn't see any problems, called him a puzzle, wanted to know about his BMX ing, and has sent him to see an Ortho specialist. Can't decide if this is a good thing or not - I'd have liked her to have at least read his notes, but he's seeing a specialist, so that's good.

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