Sorry this will be rather long... so apologies but I need help please.
First armed with a copy of results from blood tests of 16 December I asked her who had checed the results as I was surprised that EVERYTHING was NORMAL when in fact my RBCs are above range (as indicated by lab) and my MCV and MCHL are below range (as indicated by lab). GP defensively told me SHE had checked results and "that this was normal for me considering my health issues"!! Obviously not prepared nor caring to help me improve my quality of life and just accepting my health will carry on decreasing till I drop dead!
BLOOD RESULTS and ranges:
Full blood count.
Total white blood count: 6.38 10*9/L (4 - 10)
Red blood cells: ABOVE RANGE: 5.24 10*12/L (3.8 - 4.8) Outside reference range
Haemoglobin concentration 140 g/L (120 -150)
Heamocrit: 0.432 (0.36 - 0.46)
Mean cell volume: BELOW RANGE : 82.4 fL (83 - 101) - outside reference range
Mean cell haemoglobin level: BELOW RANGE : 26.7 pg (27 - 32) -outsite ref. range
Mean cell haemoglobin concentration : 324 g/L (315 -345)
Coeliac disease unlikely at present time (sensitivity 96%), provided patient is taking a normal gluten diet. If patient known to have CD. this TGA level indicates adherence to gluten free diet.
I told her I felt I had probably been wrongly diagnosed with Vaso vagal syncope a year ago, as I only tersted mildly (and most people put through through Tilt Table Test would, as have been told by cardiologist and neurologist seen privately) and that my fainting episodes are more likely due to fact my RBCs have a poor haemoglobin uptake as shown on blood results, and a B12 and Folate deficiency. She said B12 not low and Ferritin and Folate were ok.... I pointed my levels were very close to the minimum levels of ranges (especially Folate and Ferritin) and that taking into account how ill I have been feeling for past 15/18 months (really before that time) and getting worse with loss of balance, tinnitus, dizziness, the fogs, strange headaches, confusion EXHAUSTION, no energy at all, breathlessness, the need to urinate frequently, my heart behaving strangely, etc. and said I would like the chance of being given B12 injections to see if it made any difference, stating B12 is a water soluble therefore cannot cause any harm. She then said she'd consider it for a period of 3 months but that she would discuss it with her colleagues and let me know by letter....
Got letter the letter the following day: ..."I had a chance to discuss B12 with colleagues. CONSENSUS was to see if there was a response to B12 by giving ONE injection dose and then seeing what happens to blood work at 2 weeks..... Please phone nurse to make appointment.etc..
Obviously this is not going to work and give them the right to say NO need for B12 as no real improvement. Dis not phone nurse but she phoned me today (25/01/17) at request of GP. Told nurse there was no point in this useless experiment. Seeing GP on 2 February....
Also said to GP I should see an haematologist to which she replied he would not see me with such results! Could this be true when there is an overproduction of red blood cells and that they have a diminished uptake of haemoglobin? I am puzzled and seriously worried... HELP please.
When I saw her last I had many photocopies of guidelines for B12 requirements/symptoms, having highlighted my symptoms ... she did look at them briefly (looking fed up) but NOTHING is happening.
As I have an appointment with her on 2nd February I would truly appreciate any support and guidance as how to proceed now with her regarding B12 and requesting further investigation regarding the state of my blood cells before I become more seriously ill. Am very concerned and scared and feel totally ignored by GP. They are all the same at the practice....
When I said I wanted/needed the cause(s) of my problems to be found... she said "investigations must son come to an end"....!!!! I have seen a cardiologist, neurologist and ENT consultant privately and am going to see another cardiologist privately at the end of February. I had to do all the research and push her to refer me....
I also take thyroxine (100 mcg and 75 mcg) on alternate days, have done so since I had a partial thyroidectomy (nearly all of it removed really) in 1980. Have not had very recent tests done regarding this.
Thank you for taking the time to read this epistle.... and your help in trying getting through to GP.
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JGBH
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Your hematology reports are absolutely all right..... in case u may have Thalassemia minor or mild iron deficiency,, but u need not to be worried about it.....just go for a TSH assay to access your thyroid status.... stop visiting doctors.....do some meditation/yoga/pranayam.,,I am sure all your symptoms will disappear.....
Thank you for your reply. However you're telling me I do not need to worry about my blood results... I would like to be able to do so in the absolute knowledge that an over production of red blood cells and yet lower haemoglobin uptake is not a cause for medical concern. With all due respect are you medically qualified to make such a statement?
Will request a full thyroid test (but will need to go privately to get antibodies tested as this is not done routinely on NHS). Do you recommend any specific forms of meditation?
JGBH is exhibiting the symtpoms of B12 deficiency: the blood test results do not rule that out. These symtpoms cannot be 'cured' or made to disappear by meditation, yoga or pranayama.
There is clear evidence of iron deficency anaemia in this and other previous blood test results.
In the UK, treatment for iron deficency anaemia should always be done under direct medical supervision.
I fear that some "advice" given on this site is rather ill advised and if, naively taken could be rather dangerous. This could be the case as one feels so vulnerable when feeling so ill.
PLEASE I need advice on HOW to cope with my GP at my next appointment on Thursday 2/2, next week... this is most urgent. I can see her reinforcing the fact that "investigations must now come to an end"... having resolved zilch! All investigations have been guided by me... and I really need an efficient GP to now bring everything together (co-ordinate all things) in trying to see what the problem(s) is/are and give me a better quality of life. So would really appreciate sensible advice as how to proceed next with GP, asap.
JGBH. Just to let you know...power outage at home. No internet. Phone almost dead. Have suggestions. Will reply when able - not currently looking good for this evening 😖. Fantastic support from forum members 👌😀🆒
Foggyme... how dreadful for you. Do hope you will be "back to normal" very soon. It will be fantastic hearing your suggestions when you are able, thank you.
Indeed GREAT support from a bunch of lovely people from the forum! With much appreciations and thanks to all. xx
JGBH...I am sure that foggyme will get back to you when she can and give you more info than I can but just one thing. Do check when you last had a thyroid assay done last and ask for the results.. the receptionist at your surgery will do this for you. You are entitled to a print out under the data protection act. You should be having this check done by your GP at least annually and if it has not been done recently it is relevant to your symptoms and worth checking. Best wishes.
Hi pugdogs10. I will ask for my latest thyroid tests results and must have some new ones done, I don't have problems asking for a copy of my tests results. Thank you. The members of this forum are incredibly helpful and thoughtful.
You need a FULL Thyroid Profile testing - to include TSH - FT4 - FT3 and thyroid anti - bodies. Go to website below and click onto Blue Horizon for a test kit to be sent to your home - Thyroid 11.
Time to take control. Also go to the Thyroid UK Forum here on HU. Lots of good advice - think you need some T3 - but first the tests 😊
Hi Marz - Yes I will do a full thyroid profile testing. However do not want to do finger prick as I find it difficult (have neurological symptoms in fingers) and very little blood comes from my finger tips so that would be a waste. I am a member of Thyroid Forum.
Your situation is very similar to mine and I had to battle the doctors for b12 treatment. If you go to my profile and read my early posts there is information on what to do next which will involve putting things in writing, there are also links to documents kindly provided by other members here. I did succeed to some extent although they will not give me any more frequent injections than two monthly now and it has become evident that I need weekly injections so am doing that myself now.
Hi, I'm in the US. Is it possible to buy vit b12 online without a prescription? I'm afraid my neuro is going to stop my weekly injections, make me wait a few months and recheck bloodwork. I'm in college & cannot crash. My exhaustion & brain fog is getting better also. I only have 2 more weekly injections. I feel like I'm finally starting to feel less depression. I have neuropathy, headaches. I don't think that is improving much yet. I'm only 20 Once I have my last injection in 2 weeks I'll have had 8 weekly injections.
Had EVERY thyroid test done, all is good. My mom just started injections once every 2 weeks for 2 months through her GP. And my dad never had injections but takes b12 pills daily.
I was taking antidepressants for 8 months. Never again!
Hi, sorry I am in the UK so am not aware of how available b12 for injection is in the US. Have you done a search of the forums as someone may have asked the question before.
I am new to this site but it sounds to me like you might want to consider changing your GP. She doesn't sound like she is listening to you and your concerns. I would think if you request to see a haemotologist that it is your right and not up to her to do anything other than support you and write a referral. I would not bother battling her but save your energy for the journey of testing and trialling treatments that you will no doubt need to embark on to find out what your body requires in order for u to lead a full life. All the best
Indeed GP pretty useless and her colleagues are much of a muchness, they stick together of course. Changing GP would mean changing surgery (only one where I live) would mean having to drive quite a few miles away. Unfortunately, living alone, this means I would not be able to drive miles away when feeling very ill, this is a consideration I have to take into account, am afraid. Otherwise I would have changed ages ago. Having many serious health issues it is most important and logical to find the root problems(s) before embarking on self-treatment. However the main issue at the moment is HOW to deal with my GP before my next appointment next week.
Hi JGBH, I would normally advise a change of GP, but I'm no longer confident that there are many GPs out there who are really interested in working with their patients to improve chronic health problems and quality of life.
As Marz says, it's time to take charge of your own health and organise a thyroid panel privately. After thyroidectomy, most people need T3 added to their meds, either as combo T4/T3, or T3 alone. Blue Horizon will provide the necessary for a standard blood draw, but you will have either to go to a partner hospital for this, or find a nurse you know who would be prepared to do it for you. In theory, a GP practice nurse should be able to do it, and they should charge a smaller fee than a private hospital.
Best of luck, and don't give up. You may end up self-treating your thyroid and B12 deficiencies, like so many of us. It might be a good idea to write a summary to your GP of everything you have done so far to engage their help, e.g. guidance documents given and discussions attempted. You could add a few remarks about what you think could/should be done to improve your health, and thus maintain your independence into your later years. Insist that your summary is placed on your medical record. Put the buggers on the spot!
I have been thinking of writing a summary and give it to her at my next appointment, asking her to include it in my medical records. Your idea is encouraging as well as your message of support. Only hope she will not ask me to live the surgery if I am not pleased with the service they provide and find a better one!!! ? Basically they don't want to be bothered too much.... just dealing with usual everyday problems is what they expect... anything else, especially chronic conditions are too much for them, too time consuming.
Hi Hillwoman, just realised I made a typo error in my last post to you... sorry. Not "ask me to live the practice... but leave of course! arrh! getting too tired to think clearly.
It used to be the case that a patient who was asked to leave a GP practice would simply be reassigned to it, if it was the sole practice in the local area. I was told this about 15 years ago by the now-defunct Community Health Council, so the rules may have changed since then. It might be worth looking into this - perhaps ask PALS?
Hi JGBH,,I just replied to your recent hematology reports.....yes,i am a medical student doing my internship.....but sorry,i should have read your previous posts....just now I did my blood tests ...vit b12-140,ferritin-27,rbc-6.5 million,low mcv and mch.... my symptoms are quite different from yours.....but I came across lots of patients in a day with somewhat similar symptoms like yours....many subsides as such...I am really very sorry if my reply hurts u or any other one......
Battles with GP are standard practice. Personally I did as advised by foggyme and others. I wrote to gp on several occasions basically blinded him with knowledge and no he still to this day didn't treat my son but he did send him to a haemotologist (I wore him down and got on his nerves). We saw the haemotologist yesterday and he agreed my son has b12 d (164.4 with horrible neurological symptoms) and is now doing all the tests gp should of done and is writing to the gp to carry on my sons treatment (we took him private to be treated as soon as gp said no and haemotologist said it was the right thing to do in the circumstances). So I guess persistence is key, if the gp won't help ask to see someone who will. By the way we had also seen 4 neurologist they never picked up on b12 either. It really is a battle but after yesterday I am very pleased I persisted.
So glad your son got a diagnosis at long last. hope he will soon feel better.
How long have you been having battles with GP? Was your son diagnosed by haematologist seen privately and could he refer your son back to NHS for treatment without any problems? Hope you don't mid answering my questions.
He felt better instantly after first injection but we don't know as yet what unrepairable damage has been done but with every jab there is progress.
7 years ago this all started. We have seen the 'best' neurologist in NHS to no avail even told he definitely didn't have b12. In August last year I took control of matters did private blood test (with medichecks £149) and with resounding results. Those results I took to gp he ignored them and phoned the NHS lab that did my sons previous b12 test and they said my son couldn't possibly have b12 with those results. Still I was undefeated and spurred on by the guys on here. The haemotologist told me yesterday my sons previous NHS results were obsolete as they a) didn't run the right tests b) he didn't fast for the tests c) he said the results didn't make sense!
The haemotologist is NHS and I wasn't holding my breath but I would have to say he was brilliant- so far! I have been told by many people once you go private you can't go back to NHS - says who? Haemotologist applauded what I did not the opposite. He had no qualms about private he even said he will write to my unhelpful gp and to my private gp. How fab is that?
Thank you so very much for sharing your experience. I note you went to see a private gp as well. Was it him who referred you son to the NHS haematologist then?
What a battle you had but congratulations on getting help for your son! That's brilliant and I do hope he will make good recovery in time. So pleased he's getting treatment at last.
Thanks for information. Feel pretty sure my gp wants to get rid of me.... this has been going on for well over a year now... but when I told her I should be referred to haematologist she said that "with results like that he would not be interested"... so the obvious habit of waiting for something more serious to happen to start doing something... the patient paying the price. GPs don't seem to understand what "prevention" means...
Nope they don't. I just kept repeating to them you are not treating his symptoms. That struck a cord.
It's hard, very hard and I would disagree the haemotologist will look at you regardless of results as according to my gp my son was well in the normal range.
Just keep trying but put it in writing they are more inclined to act and say in the letter you have sort advice and quote all you can. You have nothing to loose. Xx
Thank you so very much for the encouragement and help in dealing with GP. have already written several letters in the course of last year, asking for her to refer me to specialists privately and one on NHS... and explaining I was getting tired of doing research and being a "full time" patient and wish for the whole situation to end but not until I know what is the problem.... Said similar things to her face to face, and she said " investigations will need to stop soon"!!!! Will write a letter to request referral to haematologist, as well as a summary of all that my visits, my visits to consultants privately and the one on the NHS.
Hi Cena, You haven't hurt me at all, however your "recommendations" were rather disturbing to say the least! One does not assume things and then advise on assumptions, etc. , very dangerous!! The fact you had not read my previous posts before giving such a reply is concerning considering you are a medical student! I l assume it's your first year? Are you in UK?
The trouble is medical students are not really taught enough about B12 deficiency and the very serious and debilitating irreversible neurological problems associated with B12 and Folate deficiency. Hence GPs haven't got a clue and in their ignorance deny B12 treatment for so many patients whose life become a misery. I believe the caring side of the job does not exist anymore, the so-called vocation has disappeared from the medical profession! Sorry but it needs to be said.
I would be interested to know how you progress.
Best wishes.
Thanks a lot,JGBH... it's really my fault not reading your previous reports....I am a 3rd year student from INDIA.. regarding the medical education,,u may be right becoz even my teachers use to say about the declining trend..... Anyway,we would love to hear about the symptoms concerning our patients to keep ourselves updated....
Well Cena, we all make mistakes as long as you use this experience as a "learning curve"... and you learn from it by becoming a better doctor, not just diagnosing from tests which can, sometimes, give flawed results (ie: clinical evidence) but also from the symptoms presented and described by patients (ie: evidence-based).
Thank you very much for your reply with very useful information. it will take some time to sort through it all while choosing the most relevant bits. I appreciate your support.
It can be very frustrating when your GP is not being helpful. I had problems with a GP a number of years ago but was able to change quite easily.
I also have a number of autoimmune diseases, including Type 1 diabetes, PA and a thyroid disorder. It seems to be quite common to have more than one. Unfortunately your symptoms can be attributed to a number of diseases. I notice that you need to urinate frequently so have you been tested for diabetes? The pharmacist can sometimes do this one for you. The diabetes UK website can also give advice on doing a finger prick test, washing your hands in warm water, drying them thoroughly then letting them dangle for a bit helps before you start.
In dealing with Doctors in many situations for the last 30 years I have found that a few things have helped. If at all possible ask someone to attend with you, they don't need to say anything but I have found that when you have company you are taken more seriously. If I am anticipating problems I will take a note book and take it out. I have my questions written down so I don't forget but I also make notes of what I am told. Again this means I am taken more seriously. I will also ask the question "can you explain why....." or can I have a second opinion when needed. I found the PALS very helpful when I had serious concerns about advice I was given by a GP.
Hope this helps and the next appointment goes better than expected.
Hi JGBH. Well....your GP's are not covering themselves in glory, are they!
The comment that your blood tests are 'normal for [you] considering your health issues' is really not good enough. And to be told that 'investigations must come to en end soon' is quite...well...I'm speechless...
Surely investigations come to an end when causes have been identified, treatment commenced...and the best possible recovery achieved. Hmm..
And to offer one B12 injection and then test your serum B12 levels is quite the most ridiculous thing...as you well know. And most certainly not in line with any of the current guidelines...so,goodness knows where a batch of GP's got the idea from.
I've had a look through your previous posts so first, some thoughts and then some suggestions that you might like to try...
You have a whole collection of autoimmune conditions (RA, uveitis, Sjogren's) proof indeed that these tend to come in clusters. Your GP should know this...I can see on mention of you being tested for pernicious anaemia? Ask for the anti-IF antibody blood test. (If positve, you definately have PA, if negative it's only 50% accurate - you could still have PA (anti-body negative PA - I doubt your HP will have heard of this). Your GP,is quite wrong to assume all your health issues are due to your existing autoimmune conditions. Each condition is different - an each needs different treatment. PA is a definite possibility.
Referrals: not so sure you've had the right ones yet.
Multiple long standing gastric issues (hiatus hernia, GERD). Have you been referred to a gastroenterologist? Not an unreasonable request to make given that you have been ill for so long. And you might be lucky and find one who actually understands B12 deficency (and PA if you test positve).
Your have neurological symtpoms - your GP should want to investigate these - especially as she is so convinced that they are not caused by B12 deficency (I suspect that they could be). But...best practice would be to refer you so that there are no,other underlying health conditions.
Haematologist - you have the right to ask for a referral - your GP is wrong to tell you that you won't be seen - though you may ha e better luck with a neurologist or a gastroenterologist (haematologists, unfortunately, tend to be more interested in blood results way outside the reference range. 😖
However...think your GP may be expecting to see macrocytic (large red blood cells) anaemia in your blood results and this may be why she is reluctant to refer you. Obviously not aware that B12 deficency can be present without having these changes (or, incidentally, a positve PA result).
Also - your below reference range MCH and haemaglobin, the low in range MCHC and the low ferritin levels are indicative of iron deficency anaemia. Never I mind about what she called 'normal for you'...you should be treated for iron deficiency anaemia. (GP may thin ferritin is 'normal' - that's just an opinion - it needs to be mid-reference range for optimum effect. Low ferritin and low folate effect the uptake of vitamin B12...and your folate could do with being in the top rid of the reference range. No matter what your serum B12 level, your body will not be able to utilise it properly unless you have adequate folate and ferritin.
Your GP should also test your for heliobactor pylori (a bacterial infection of the stomach). This is very common in people with autoimmune conditions and impedes the absorption of B12. Also - PPI's - these also do the same.
And I agree with Marz . Get a full,thyroid screen and get thyroid antibodies tested. Because of,your autoimmune history you may well have Hashimoto's (autoimmune condition of the thyroid) which may well need a different treatment regime to the one you're currently on). But best to do the thyroid 'things' on the thyroid forum - they're the experts on that 😄
So...what can you do.
Think the best approach here is to write your GP a formal letter (as others have suggested). But, conscious that you're not able to change surgeries so perhaps an 'appeal' for help would be better that a complaint about your current treatment (or lack thereof).
Think you would need to be quite concise...outline your concerns (symtpoms of B12 deficiency with neurological symptoms), concern that you may develop irreversible neurological damage (subacute degeneration of the spinal cord - information about that on the PAS website/internet), state what tests you wish to have (as above - in part because of your autoimmune history) and the treatment you are requesting (intensive B12 regieme for those with neurological symtpoms).
You will have to link all these requests to evidence for the GP's to look at (will give you all the links you'll need below). Highlight the places in the information that evidences what you are saying to support your requests (GP's won't read everything but they have to note the highlighted bits if you've pointed it out to them.
Also - ask for referrals to a gastroenterologist and a neurologist (if you haven't already had them). Simply say that your health problems have been going on too long...that these are new problems and you do not think it is your best interests to assume that these are connected to your existing autoimmune conditions...and you'd like these investigating.
Ask for them to reply in writing and if they are unable to treat you for B12 deficency, please can they include medical evidence to support that decision...as you'd like to understand the reasons behind that decision (they won't be able to,provide evidence, because there isn't any).
Other things to think about...
I note that specialk16 had success with a private something or other 😄. Just thinking outside the box here...it doesn't really matter which specialism you see...the main factor is that it must be someone who understand B12 deficency and its treatment. Any consultant can write to your GP and ask them to prescribe and deliver the correct treatment. If you want to go down this route, try putting up up post with the area you live in and ask if anybody has found any kind of specialist who understand B12 deficency - ask to be PM'd the details.
Another idea - you can't easily change GP's but there's nothing to stop you consulting a private GP just for B12 deficency treatment - if you can track one down who actually understands it. They perhaps would be willing to provide regular prescriptions and also teach you to self-inject. Not ideal, I know....but perhaps an option if you can't get treatment any other way and you don't want to go down the 'buy it and self-inject it route'. Many have been forced to do this and it's something people here can help with if that's what you ultimately decide to do. You could perhaps track one down in the same way as above - put up a post.
Another route to help...Tracey Witty at B12dediceny.info sometimes acts as an advocate an will intervene with GP's on behalf of people who are really struggling to get treatment. Contact details are on the website if you decide to email her...she's pretty quick at responding. (Incidentally, the website contains a draft treatment request letter to GP's which you could download and edit to your requirements if you don't feel confortable writing one from scratch - might just to have to add your own unique stuff'.
And if none of the above works, think the only other option is to send a 'treatment appeal' to NHS England and ask them to intercede with your GP, on your behalf (NHS England contract GP's to deliver primary care so should be concerned if this was not being delivered - especially if you've demonstrated that current guidelines are not being followed - to,your detriment.
I know you've had lots of information and links before but I've just pasted some below to make it a bit quicker for you. Everything you need to argue your case will be in there (apart from details about Subacute combined degeneration of the spinal cord, which you'll have to track down, as suggested above).
Any JGBH...just about out of ideas....really hope that you find something that works for you...let us know how it goes 👍
P.s. Excuse any typos....the auto correct sometimes goes crazy...but I've been looking at the screen too long now to be able to notice...😄👍
Just wondering if your GP has ever referred you to a rheumatologist?
Sjogren's can be quite a tricky conditions and its usual for patients with it to be cared for by a rheumatologist. Some of your new symtpoms coild possibly be to the Sjogren's not being treated / controlled properly - it can affect many systems in the body. (Though B12 is most likely an issue too).
It can sometimes be accompanied by other autoimmune conditions such as Rhumatoid arthritis, Lupus etc. So...if you're not under the care of a rheumatologist, perhaps you should be. In light of your medical,history and 'new' symtpoms, your GP cannot refuse to refer you if you ask.
Here's more about Sjogren's - note recommendation for rheumatologists care:
Bonus - you could also explore your B12 with the rheumatologist - might not know much about it, but you might hit lucky.
Private referrals - if you want these, your GP cannot refuse. Your paying for it! Having said that, you should not have to get private referral simply because your GP is refusing to make NHS ones.
Also - some private consultants do not require a letter from a GP to see you. Check websites where they practise for details or track down their private secretaries through hospitals switchboards for more information.
Again, as for your GP saying that investigations must stop...well, sounds like you've been paying for them privately...your are entitled to have as many referral as you wish...and your GP must write letters for these, if you ask for them. It's is your right.
Hi Foggyme. Laptop out of action since last night so it's a pain typing on iPhone. Have RA (rheumatoid arthritis since late 30s spent a year in hospital on and off being so ill, lost my job... have fibromyalgia apparently plus sjogren's . Have a rheumatologist but only see her once a year now (+ RA nurse twice a year) and have blood tests 3 times/year. Self inject with Enbrel (etanercept) once/week: an anti TNF Biological drug which gave me my life back prescribed by rheumatologist. Have been told there is nothing to do for sjogren's as anti tbf should help and put loads of eye drops as dryness is incredible. Hoping my grandson (back from university for weekend) will be able to sort laptop out then I'll be able to give you more info. Really appreciate your guidance and support! Thanks
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Once I have my last injection in 2 weeks I'll have had 8 weekly injections.
Low b12 heart palpitation
Totally predictable visit to GP. Why am I surprised?
