GP issue re private results

GP issue re private results

Hi, I'm desperately trying to get to see another GP as mine is on leave until the 31st... I've listened to the advice re needing possible jabs and sorting out a test for the Pernicious Anaemia and have emailed the practice manager re the results from Blue Horizon.. Apparently she didn't get them, so when I phoned she was quite snotty about the private test and asked who were Blue Horizon.. Stating they had tested me as per your yearly gp review... I stated I realised that but I wanted a set of results for myself and it had thrown up deficiency's... As the Endo wants a bone scan, which also I can't get a date for (backlog) I wanted to have the private test to help with my complaint about not knowing if my scan would be done by July 19th (next Endo visit)...

my question is to you all is... Are all gps dismissive of private tests? And as I don't seem to matter re deficiency part what should I do? I don't really have the money to have the two tests B H use for Pernicious Anaemia and another one... I'm starting to lose the will to live as you feel no one cares out there...

Any thoughts shared experience's would be good.. Jo 😊

30 Replies

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  • Yes, many are dismissive but then sometimes the GP repeats the private ones you've got (probably to try to disprove your private ones)em (which they don't normally do as the stick mainly to TSH and T4).

    Why has your GP not tested your vitamins - you are deficient in Vit D, Vit B12 (should be around 1,000 is now the recommended upper level to prevent neurological damage). Folate and Ferritin below range. All of these deficiencies could be the root of your problems. 

    So ignore the snotty receptionist and say you had to pay privately in order to find out you were deficient in the most important minerals/vitamins. 

    Your TSH is high (not according to the BTA guidelines which state we shouldn't be diagnosed until TSH is 10, but this is a link from Thyroiduk.org.uk . I haven't looked at your profile yet but you can judge from the link about your thyroid hormone blood test results:

    thyroiduk.org.uk/tuk/testin... 

    thyroiduk.org.uk/tuk/testin...

  • So is the answer you only get better if you pay for it all yourself... It's so wrong... I think the Endo is more open minded as she talked about studies and some evidence shows blar blar... He can't despite results they came out of the same arm at the same time lol.. Thanks for reply

  • is there any chance that the deficiency is my whole problem and I don't actually have ANY thyroid problems? If that's the case would a gp blood test not tell them that? Or is it a case I have the 2 issues thyroid and deficiency? Sorry if I appear a little stupid... Thanks

  • It might well be although of course your blood tests wouldn't be positive for hypo but you can never tell.

    Some peoples' TSH never rises high enough to be diagnosed despite awful symptoms..

    I was never diagnosed by any of my symptoms and I only found out once diagosed they know/knew none. No one did a blood test and if wasn't for a first aider I doubt I would be on this earth.

    I think you will certainly be having symptoms of deficiencies. Your GP should prescribe D3 and give you B12 injections. Others will respond re your other deficiencies. Symptoms can overlap from one to another.

  • they have always fluffed about as I have been border line in their eyes a lot! Now I know that they really don't calculate to try and help 😡 so I think I must have the 2 issues which will ease if I bring my Vits up? I've sent gp and Endo results.. I guess they don't see it as urgent enough for same day response... Thanks for your help.. Glad you are about..

  • There is a remote possibility (in my view) that your whole problem is multiple nutritional deficiencies. Your thyroid hormone levels, conversion and TSH may improve with better mineral and vitamin levels but will they improve enough to make you feel well? The only way to find out is to try and fix what you can with the nutrition aspect and see what happens.

    Much more likely though (in my untrained opinion) is that you developed the deficiencies because you are hypo. One of the things that hypothyroidism does is to "dry people out". So people can end up with one or more of the following problems :

    1) Dry mouth

    2) Dry skin

    3) Dry hair

    4) Dry ears

    5) Dry lungs leading to irritating coughs and respiratory infections because the lungs don't clean themselves out very well.

    6) Dry eyes

    7) Dry vagina

    8) Reduced stomach acid secretion

    9) No sweating

    10) Constipation

    11) I'm not sure whether "drying the body out" causes problems with bile secretion, digestive enzymes, problems with the pancreas, but I wouldn't be surprised if it does.

    Number 8 (and number 11 may contribute) is a strong contender for causing deficiencies. With too little stomach acid the stomach takes a long time to empty after eating. This leads to indigestion, so people take indigestion remedies, antacids, and PPIs which block acid further.

    Without stomach acid to break food down the body can't extract minerals and vitamins, so deficiency begins, which eventually has a knock-on effect on all sorts of body processes.

  • Dry whoo whoo is not me or the sweating... I cant sleep but that's an hrt problem... I am seeing some one Tues re that as it appears I am allergic to Oestregon but cant sleep re night sweats... The cough bit is helpful as I had a cough at Xmas and it;s still niggling away... I have never smoked, am a veggie.. I have dry eyes but that could be normal for me anyways... Very helpful info.... Thanks :) Jo

  • Hi scorpions,

    In answer to your question are all GPs dismissive of private results.I guess it's like everything some are,some are not.My gp fortunately is not.I regularly get private results done,to get a complete picture of thyroid issue.he takes them and they are logged on to my records. He will often also do them but of course he only ends up getting the tsh passed by law even if others are requested ( although this request is rarely asked for by him. Forget the snotty practice woman- and take the results to GP and firmly but nicely request him/her to retest for themselves.thats my advice anyway!

    All those ones that you are below range in will probably also be contributing to your feeling underpar.

  • Oops forgot to add we are in. The southeast uk blue horizon is the same lab as the NHS uses around here so that helped! He acknowledged that.

  • I'm in Essex and said if I wanted the private Pernicious Anaemia one I would need to go to Spire Brentwood... Said I couldn't afford the tests B H suggested... This Practice Manager just said we have taken your blood re thyroid... I said Yes, I know that's when I had the private one/vile taken... I'm on t3 and levo I want to feel better than I do... So she then said send again... She has received the tests as I had email receipt... 😊

  • My GP is more than happy to put my private test results on my file (I am, after all saving him money out of his increasingly limited and tightly controlled budget) 

    As far as most are concerned.....TSH in range.....all sorted! No more tests required.

    How far from the truth that can be. 😕

    Should be routine to check Vit D, B12, folate and ferratin if thyroid issue present or suspected.

    Hoping NICE guidelines on thyroid management will be updated to include this. 

  • pernicious-anaemia-society....

    I would contact the above society - leave a message and someone will get back to you. They are VERY helpful. They will give you advice how to go about dealing with your GP practice and in some cases will do it for you. Read the blogs. Also there is a Draft letter for the GP about B12D on the website below ....

    b12deficiency.info/b12-writ...

  • Thanks I appreciate the help 😊

  • .... so did you connect with the links ?

  • I have them in my fav in my phone and will do later when near my pc... The way I am now I have to read stuff a few times to take it in.. Which cripples my confidence as I have a degree and I'm not stupid... I've also become a ditherer and I normally get really mad at those :0... So I will look at what you have sent I've even screen shotted it to refer and decant stuff from... Thanks again Jo

  • You are not alone - I too am/was a bright gal - but always have to keep referring back to stuff - hence I have so many links available :-) Do not get mad - get even ....

    The advice I usually give is about being active in your own care and health - so am hoping the links will be useful ....

  • what I find the worst... Is my lax strength re decision making... Yet, I'm not that person and am wonderful at planning or advising others on issues.. I'm most mad at myself tbh 😊 Thanks you all help so much x

  • Focus on the positives and not the .....

  • Deep joy the other gp has just called me and asked me to go in at 5.15 to talk about my blood tests... My heart sank when I should feel hope that I will be able to get the PA test and the other one Blue Horizon advised... But he's more about money... I'm wondering if I get no where do I still go private next week... I'm really not looking forward to having him tell me my private tests are wrong even tho out of the same arm same time for the surgery one!!

  • Glad you have found your way to the PAS forum ....

  • Lol... I have rare eye condition called Aniridia and I have a steam phone I can enlarge a PC that I can do the same with... However, most times I dont know where the hell I am as text can be all over the place and buttons you press disappear... So if I am ever repliying in the wrong place or get it mixed up that why lol.. Lifes a B and then you die I guess...Ive signed a petition so I am trying :))

  • Hi, over the weekend when on my PC rather than on my phone I am going to join the Society and my book should have arrived by Martyn H .. I have saved a lot of the links to MY FAVS so I have looked at lots but I will go back over it... I had the first b12 it wasn't too bad and so I am not sure if I will feel better straight away or maybe because I am not getting the loading thing, not really feel a benefit at all with the sparce treatment... It's a waiting hoping game :) Dont worry I took screen shots of replies also so I could keep looking at them.. The most important thing that's gone in ... Is that the IF test would not be affected as I have started b12 but it's not at all a definite marker.. Im learning:)) Hope you are ok and of course Thanks.. Jo

  • My BH tests are added to my medical records by my GP.

    I get a BH test and if there is anything wrong I make a doctor's appointment. I then take a copy of the tests in and tell the doctor what is low. I try and make my appointments online though my current doctor's receptionists don't ask what is wrong if I make them on the phone.

    While I have my BH tests in Buckinghamshire, one of the labs BH use are in Surrey. The Surrey lab is an NHS lab used by Surrey hospitals.

    There is no need to involve the receptionist or practice manager as they are not medically trained. In fact I would be surprised if the results end up in your notes

    I was told by a completely different GP years ago to basically not discuss anything with the receptionist. You can either do this by illustrating you know a lot more than them - which shuts them up - or by simply asking their medical qualifications and when they reveal they don't have any saying you will only discuss the issue with a doctor/nurse.

    In your case I would have simply said the symptoms you were seeing the doctor about to the receptionist, then gone in with the test results and told the GP these particular ones are below range.

  • I couldn't print mine off for some tease pc issue when I got them.. Actually the receptionist was ok said email them to Practice Manager gave address and said once done they would arrange a phone consult.. (guessing as my lady gp is away it's quicker to call for the remaining gps).. I'm going to make appt and go.. We shouldn't have to fight if there is evidence that they go by dodgy results... This should be about how someone feels... Christ, I'm dreading the jabs so why would I be begging to give them a try?? Cause I'm not well... If I was an attention seeker I'd have a pedicure at least I'd gain nail polish, rather than a puncture in my bum!! They swore an oath to make you well.. Grrrr thanks all x

  • Some doctors presume patients are making it up for attention.

    I know a few doctors socially and until some of them got into long term relationships with people like builders they couldn't understand that lots of people don't get paid if they don't work, and lots of people work irregular and long hours.

    They basically mix in the same circles of people. This is why it's a shame more British educated doctors don't come from working class backgrounds.

    Incidentally the one who wasn't born and completely educated in the UK was the most helpful but she emigrated.

  • my Endo is Koo Chang and his fellow a woman Chinese and she has talked about studies and variations etc... So open to other ideas, but surely nhs restrictions mean they have to do or not do things due to that... Which keeps folk ill... It's overstretched but then I go all political re all that so I'll stop lol.. 😊

  • For vitamin D there are different protocols around the UK.

    Where I am you get prescribed 60,000IU tablets for 12 weeks and get told to take 1,000IU after that. At 6 months you then have another blood test on the NHS. If still deficient in another 6 months you can have another blood test.

    A friend in a different part of London was told to take 5 times 800IU tablets per day for months. Then have a blood test after 6 months.

    Others on here have said their NHS area will only do vitamin D tests every 2 years even if they were severely deficient initially.

    In general the NHS practises are sh*t. My current GP practice and the nurse who originally found me deficient admitted as much.

    Some people need 60,000IU for more than 12 weeks. I was told by an MS sufferer to continue taking a high dose until my blood levels where in the normal range. In other words continue to supplement with 5,000-10,000IU per day.

    Once my levels were in the optimal range instead of going on 1,000IU I was advised to take 2,000IU.

    I ended up with severe bone pain while on 60,000IU. I then had another blood test privately which was actually to check my iron levels and found my phosphate level was too low. I did some research and found I should have taken D3 with magnesium.

    There are other vitamin and minerals you should take due to your low folate, ferritin and B12 levels. In your case you should take vitamin K2. As you should be supplementing with iron I should ignore zinc for now. You need your calcium levels checked as well.

    One reason I found City Assays is because it was implied by the nurse, then I also researched and was told by a paediatrician, that the NHS protocol for adults who are found to be severely vitamin D deficient is not good enough. You should actually be checked after 3 months to see if you are absorbing the vitamin D as there may be other conditions that prevent you from doing so.

    Once your levels are optimum you should be tested every year to ensure you stay there. The NHS will not pay for that regardless of whether you are an adult or a child. If you have a good GP if there are any issues they will try and get you retested for Vitamin D but the lab under the instructions of the CCG will refuse to do the test.

  • Who are city assays? Would they do the Pernicious anaemia test? Thanks for help

  • They are the lab for Sandwell and West Birmingham hospitals NHS trust*. There is a link to them on the thyroid UK site.

    They don't do PA tests by post. There are other providers like Blue Horizon who do various nutrient blood tests. Again links can be found on the thyroid UK site.

    *This is why doctors who refuse to accept private test results are dumb. Many NHS labs do private work.

  • I will go to Spire then who are Blue Horizon.. There's one in Brentwood or Southend might do them... 😊

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