Please can anyone help??: Can anyone please tell... - Thyroid UK

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Please can anyone help??

xeena profile image
47 Replies

Can anyone please tell me what a blood test result of - Plasma P/Thyroid Hormone abnormal really means - 17.0pmoL/L - range - 1.6 - 7.3 and it states abnormal but my GP will not see me or even tell me on the phone - this was only done on the 3rd of September and i had patient access to my test results and the whole lot were abnormal - but they have taken away my patient access and will not give me an appointment. Thank you for any help you can give me, also my vitamin D is at ten - i have AKI (and only one kidney) which is also abnormal and at the warning stage - B12 abnormal and Fev1/FVC Ratio N/A - Abnormal - sorry if i am being a pain. Thank you.

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xeena
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47 Replies
greygoose profile image
greygoose

The question is: which thyroid hormone? It's a strange range. But, I think it could FT3?

Your doctor's behaviour is also strange - and probably illegal! If you have abnormal results, he should see you.

Do you have Hashi's, do you know?

MaisieGray profile image
MaisieGray in reply togreygoose

greygoose It says "p/thyroid hormone" which I'm guessing is parathyroid hormone. The reference interval certainly fits with that quoted by Gloucester Hospital Trust, of "1.6 - 6.9 pmol/L when the patient is normocalcaemic".

greygoose profile image
greygoose in reply toMaisieGray

Ah, ok. I don't have any experience of that. Thank you.

in reply togreygoose

TBH, I don't even know what the parathyroid is or does...!

in reply to

Sorry, there even seems to be two of them...!

greygoose profile image
greygoose in reply to

I think there's four, actually. They are above the thyroid, but not connected. The control calcium levels. But, I don't know any more than that.

in reply togreygoose

Yes, I just saw that...! I have never, ever read or heard anything about the parathyroid glands. If they are not connected to the thyroid gland, that would explain why I've never come across them. I cannot remember any of the thyroid blogs I visit regularly mentioning them either so it seems they play no role in the diagnosis and treatment of thyroid disease...which is a relief for someone already struggling with thyroid, adrenal, and ovarian issues...!

greygoose profile image
greygoose in reply to

No, they don't. They're an entirely separate problem. Trouble is, they're often damaged during thyroidectomies, due to their position.

xeena profile image
xeena in reply togreygoose

Hi there greygoose - i could not copy all of my results as they stopped my patient access and i am not that clever with the computer - i keep asking for an appointment but get told no so i am trying to find someone who will help me within the NHS. Thank your for your reply.

greygoose profile image
greygoose in reply toxeena

But, on what grounds do they refuse you an appointment? Surely that's can't be legal. Not even a telephone appointment?

xeena profile image
xeena in reply togreygoose

I had blood tests done approx six weeks ago and four weeks ago by the nurse and i then asked to see the doctor and was told no he is on holiday so i gave it two weeks for his holiday and rang again and was told no again as there were no appointments available - the receptionist asked why i wanted the appointment and i said for my blood test results (normally i would not discuss anything medical with the receptionist) she told me that my results were all normal - that is when i went on to patient access and was able to access some of my results - i was suddenly logged out and have never been able to get in to my account again. The doctor sent me a text and told me to make an appointment which i tried to do and all i get is that there are none to be had - i asked for help to access my patient access so as i could look online and make an appointment myself but they will not let me in to my account anymore. L cannot even change doctors as i am not in the catchment area for another doctor who is close enough for me to go to. I am terrified of having the CT Scan on my bowel as i also have diverticulitis and when i had it done before - i got punched in the back and held down by five nurses -as they removed some polyps - i rang the hospital and explained all of this and they promised that will not happen this time. I have no one to talk to as my family are fed up with my ailments and they avoid me like the plague and i lost my husband thirty one years ago - so i am at a loss as to what to do. Thank you for all your help.

greygoose profile image
greygoose in reply toxeena

I think it's time to do some complaining! Sounds like the receptionists are a little bit above themselves! Often happens. Write a strong letter to the practice manager - threaten to go to the press if all else fails! This just cannot be allowed to continue. It is your legal right to have access to your records and results. Remind them they are braking the law!

As for your hospital experience. Words fail me. Did you complain about that at the time?

xeena profile image
xeena in reply togreygoose

They tell me that they are very busy and that i have to ring at eight o'clock in the mornings to see if i can get an appointment - so i do and i hang on the phone for maybe one hour and longer and in the end i give up. Thank you.

greygoose profile image
greygoose in reply toxeena

Isn't there a health ombudsman, or something like that? There are medical lawyers, if it comes to that. But, I don't know how to access any of them. I don't live in the UK.

xeena profile image
xeena in reply togreygoose

I have never been told that i have Hashi's - but i was told about five years by another doctor that i had hyper/or hypo parathyroid problems - all went un-attended. My doctor ignores my tortuous aorta and enlarged fatty liver and the fact that i have only one kidney (lost the other one due to doctors neglect) he ignores my COPD and Asthma and i am booked to have a colonoscopy on Tuesday which has been booked for a long time - but i am scared to have it done as i do not know if i will get any answers - he even ignores the eye hospital about what eye drops i should have and my eyes are getting worse - i cannot bear the sunshine and do not go out when it is sunny as i can hardly see - i think most of my problems are down to pernicious anemia and B12 deficiency - could i be wrong. One again thank you - your help is always very gratefully received.

greygoose profile image
greygoose in reply toxeena

Sorry I can't be of more help. But, MaisieGray gives good advice below, and you really should take her advice. This needs to be sorted out rapidly. You cannot go on like that.

MaisieGray profile image
MaisieGray in reply toxeena

A GP is perfectly free to ignore and even act against the advice of any other health professional; but from what you say, it sounds like yours isn't doing so in order to implement a better alternative treatment, but out of negligence and/or bloody mindedness. There's always two sides to an issue of course, but when your health is at risk and your eyesight is deteriorating, you can't hang around waiting for him to be less oppositional and more proactive. I would write down everything that isn't being actioned, or actioned badly, as an aide memoire, and definitely present yourself at the surgery ASAP to see the Practice Manager as suggested. When we are unwell we shouldn't have to be fighting our corner, but nevertheless you need to take the upper hand to get things sorted because your GP sure as eggs is eggs, isn't. You might also phone the CCG and say things are so bad that you are thinking of appointing a solicitor as you believe negligence is involved, and what do they suggest in terms of your GP working for you, rather than against you, to avoid that necessity.

Meanwhile it's important that you have your colonoscopy if your symptoms require it - worst case scenario if your GP ignores any recommendations of the Gastro, is that you have more fuel to your fight.

xeena profile image
xeena in reply toMaisieGray

Hi there - i have repeatedly asked to speak to the practice manager - but she is always in a meeting or away on holiday - how can i argue the point with what i am told - yes i do try to argue that she must be there sometimes but i can never get to speak to her. Thank you.

cwill profile image
cwill in reply toxeena

I would ring to make an appointment with them. Mine takes considerable effort to talk to an is extremely dramatic when I ask for support to get my drugs supplied locally. But I always go though the process as it is yet more evidence of obstruction or ignorance of the system in my case.

I keep asking what days they do work and for an appointment either in person or by phone.

Nico101 profile image
Nico101 in reply toxeena

As this has got so out of hand you may want to start putting as much as possible in writing and recording all verbal communication. it will help if you need to go down the legal route.

xeena profile image
xeena in reply toNico101

Thank you for your input and yes i will do just that and see where it gets me. Bless you x

xeena profile image
xeena in reply togreygoose

Thank you for the reply - i am documenting everything as i have had enough now. I appreciate your input.

greygoose profile image
greygoose in reply toxeena

You're welcome. :) Hope you manage to get something sorted out soon.

xeena profile image
xeena in reply togreygoose

Hi there - no i have never been told that i have hashis. Thank you.

MaisieGray profile image
MaisieGray

xeena Were you aware that you were being tested for a possible parathyroid dysfunction? What were your symptoms?

Twice my online patient access has been withdrawn, and on both occasions it has been the fault of Patient Access, and the surgery has happily given me a new set up password although I've not bothered with it (by the way, depending on what works with your surgery's systems, you aren't limited to using Patient Access, there are any number of systems that provide the same - my surgery offers four or five). So just checking, are you sure that it isn't a software problem rather than your surgery removing it? That not withstanding, unless you've ''misbehaved' in some way and have been taken off the surgery's list, in which case they should have informed you formally, and indeed good practice is to discuss any problems first and/or issue a warning; then they have a duty of care towards you. If it were me, I would go into the surgery and ask to speak to the Practice Manager and ask why you aren't able to make an appointment and more importantly, why have the GPs not actioned your abnormal results.

MaisieGray profile image
MaisieGray in reply toMaisieGray

And while you are there, you can ask for a printout of all your recent blood tests, which you are entitled to by law.

xeena profile image
xeena in reply toMaisieGray

Hi there - no i was not aware of the fact that i was being tested for that - i thought it was because of my constant diarrhea that keeps me stuck indoors most of the time - it is very awkward most of the time for me to venture out and even if i do go to the surgery i only get told the same as when i ring them - so i just give up. Thank you x

xeena profile image
xeena in reply toMaisieGray

Hi there - i can honestly say that i have been a good girl and bitten my tongue most of the time - yes i had a couple of moments but nothing that would warrant me being excluded from the practice. I wish i knew why he has not actioned my abnormal results - but if i cannot see him then i cannot do much about it. I am going to try and phone the surgery in a minute for an appointment or for the doctor to ring me back and see how far i can get today. Thank you.

MaisieGray profile image
MaisieGray in reply toxeena

No, I don't doubt you have behaved perfectly appropriately especially given the circumstances. (Increasingly I find myself fighting the urge to scream, shout, swear or smack someone, with nearly every interaction with health 'professionals' nowadays! Good luck and let us know how you get on.

xeena profile image
xeena in reply toMaisieGray

Hi there - thank you for your reply - i have managed to get through to the surgery just now - i asked for an appointment - they told me there were none to be had - i asked to speak to my doctor - he will not be in until Tuesday so i then asked for the practice manager and was told that she is very busy and cannot talk to me - upshot is that my doctor will ring me on Tuesday for a telephone appointment - i asked for help with the online access but the lady who helps with that is also busy - so i am at a loss of what to do now - i did say that i was going to take legal action now as i wanted to know why i am having a colonoscopy and the doctor has never been available to tell me so i am not going to have it done. Thank you to everyone who has been so kind as to try helping me - i hope you all have a lovely weekend. God bless.

MaisieGray profile image
MaisieGray in reply toxeena

Oh for goodness sake, what on earth is going on at that surgery? Is it in Special Measures, because it sounds like it ought to be. Are you keeping a written diary now, of all that is going on (or NOT going on, as is more the case); I advise it, if you aren't. I was a non-Exec Director of a Health Authority, and one of my responsibilities was as Chair of the lay panel that heard patients' formal complaints against GPs - up to and including investigations of patient deaths, but also as basic as poor bedside manner - and the key thing in going against a GP is having hard, accurate facts and evidence, because Drs are always very well protected by their professional advisors and legal team. Even if hopefully, things don't progress that far, having the written facts at your finger tips can help if emotions run high during conversations with them.

Meanwhile, now you have the telephone appointment booked, try and have a restful weekend. :-)

ps In terms of reinstating online access, what happens at my surgery is that they simply print off a standard paper listing a choice of service providers (I've just checked, and we have a choice of 9 in fact), followed by "Provide the following details when prompted" (presumably when you go online, and not just randomly by any stranger in the street lol, they really take incompetence to a whole new level); followed by a Linkage Key, an ODS Code, and an Account ID. So we just take that away, and input those three codes to the online site of our choice. Job done. That woman surely can't be too busy to print off a single sheet of paper for you, can she?

xeena profile image
xeena in reply toMaisieGray

Hi there - yes it is all documented and i will try to log in to another provider but i do need the Linkage key, ODS Code and an account ID from the surgery - i did ask for a new one but as yet have not got it as she was too busy to do one for me to pick up so i will ask the doctor when he rings me. Thank you for all your help.

MaisieGray profile image
MaisieGray in reply toxeena

You're very welcome. I was thinking only the other day, how lawless the medical profession, and GPs and their staff in particular, have become.

xeena profile image
xeena in reply toMaisieGray

Yes - i agree on that wholeheartedly - thank you x

xeena profile image
xeena

I have tried - but there are no more practices near to me - i was lucky to get in to the one i am at as they tried to refuse me at first as they are just under a mile from where i live but they took me on in the end. Thank you.

humanbean profile image
humanbean

The only way that I can get an appointment at my surgery is to go there in person at about 7.30am - 7.40am and queue up. (It opens at 8am.) Trying to get through on the phone at 8am is impossible.

If you can't get anyone to talk to you about your over the range PTH and you can't talk to the practice manager, then you have to start writing letters.

Make sure that you send them registered (not recorded) delivery or take them to the surgery in person. If you take them by hand (which is what I would do) then write on the envelope AND the letter "Delivered By Hand" and underline it so it can't be missed. Hand the letter(s) to the receptionists, don't put it through the letterbox.

I think your letter should be a complaint, but be polite. To be fobbed off like you have been with a result that is more than double the top of the range is abysmal.

.

You should find this website of interest :

parathyroid.com/

.

bantam12 has experience of parathyroid problems and may be able to help.

xeena profile image
xeena in reply tohumanbean

I have looked at the website you mentioned and it is a mind of information - i had kidney stones for ten years and my GP at the time just kept giving me antibiotic for the whole ten years until one day i was in so much pain that i was admitted to hospital and was in there for ten days passing two stones and my doctor was told that i had another stone lodged in a pocket in the kidney that he just ignored until the next time i was rushed into hospital and had my kidney and adrenal gland removed. I do have a thyroid nodule in my neck that makes swallowing very difficult - i also have high blood pressure / cholesterol and osteoarthritis/fybromyalgia and chronic fatigue and my vitamin D is down to 7 and my B12 is just around 95. I really do not think i should still be here with all my ailments. I am supposed to be on b12 injections every eight weeks but they just will not do it. I am terrified of this CT scan as the last one i had done made my one kidney collapse and i was rushed into hospital - it was the contrast dye they used that caused it to happen as it entered my one kidney so i was in for a few days - it was really frightening. I also asked my GP for co-factors to help the B12 and vitamin D absorb into my system but he said i did not need them and i said yes i do as i have had my gall bladder removed so i cannot absorb into my system and i also told him that B12 is what protects the myelin sheath that covers the nerves and especially the Optic nerve which is the problem i am having as told to me by the consultant at Moorefields hospital - he said i needed the B12 injection and wrote to my doctor stating this as it was stripping the optic nerves of the myelin sheath - i am not back at Moorefields hospital until February - so hopefully i will still be able to see. - Sorry for the long post - but a huge thank you to all who have replied to me - love and hugs to you all - God bless.

xeena profile image
xeena in reply toxeena

I have left a new message on here at the bottom of my other one's - it was meant for Bantam 12 - but i am not so clever as to post it to him - how could i do it as it is a rather long post - thank you all you wonderful people for the help and advice that you have kindly taken the time to give me.

humanbean profile image
humanbean

Regarding the colonoscopy, if you have had a polyp in the past it is standard practice to have repeat colonoscopies to check that no further polyps have grown because once you've had one the risk of having more is greater than it is for people who have never had one.

nhs.uk/conditions/bowel-pol...

bantam12 profile image
bantam12

Secondary hyperparathyroidism is common with kidney disease, my husband has no kidney function and has secondary hpth, he takes Cinalcet which controls levels.

kidney.org/atoz/content/sec...

xeena profile image
xeena in reply tobantam12

Hi there - i have left you a message three hours ago but i could not find how to send it to you - so i hope that you get to see it and thank you for your help, it is greatly appreciated.

xeena profile image
xeena

I will try and see if my grandaughter will come with me - but she gets cross with me and tells me off and says that the GP's are very busy - but worth a try. Thank you for your reply.

MaisieGray profile image
MaisieGray in reply toxeena

Mmm, perhaps not your granddaughter then. A neighbour or a friend who is not emotionally involved, won't speak, and will remain neutral would be better suggestion (I am a qualified mediator and that would be my suggestion). You need them there as a brake on the Drs behaviour and having someone wading in with "Look Nan, the Dr's right and he's very busy, let's go" is not going to help you. By being uninvolved they can do the listening for you too, in case you miss things said.

MaisieGray profile image
MaisieGray

Ha ha, I know what you mean. Fortunately my daughter is cut from the same cloth as me, and we'd both go wading in if the situation required it, whilst my Mum was much more conciliatory and retiring if it was a general annoyance - unless someone was 'attacking' me and then they'd better be aware. A teacher once made a comment about my social standing because we ate our evening meal without waiting for my father to come home - he worked long and hard in a foundry at the time - and my Mum was at my school like a bullet out of a gun, giving the teacher what for lol. But more importantly for xeena, her granddaughter isn't 'on side', and is even a little 'anti' from what she's said, so could even make matters worse.

MaisieGray profile image
MaisieGray

Lol, egg on face time :-)

xeena profile image
xeena

Hi there - thank you for your input it is greatly appreciated. Yes i was wondering who i could ask and i thought of asking my OT as she herself tried all last week to get hold of the GP and the practice manager - she knows what i am going through so yes i will approach her and see what she has to say. Thank you. x

xeena profile image
xeena

Hi there Espeegee - that is brilliant and yes i would have done the same as i have done so before with the vegetables being rotten - good on her. x

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