My one kidney: I have just found out that the one... - Thyroid UK

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My one kidney

xeena profile image
27 Replies

I have just found out that the one kidney i have is at stage three of kidney disease - is this good or bad - i do not know what to do as i cannot get a doctor where i am now living as i am not in any catchment areas for any of the local doctors - i am wanting to know also what tests privately should i have for pernicious anaemia - b12 - vit D ferretin/folate - and should i have a full blood count - homocysteine and MMA thyroid - antibodies and parathyroid - please advise as i am not in a very good place at the moment - i have just had laser on my eyes and they just keep watering - i was at the hospital again yesterday and i must not use any drops - but i have been searching the internet and found that B12 deficiency causes the myelin sheath to be stripped away from the optic nerves and no one will give me answers at the hospital - not that they agree with this anyway - any help would be appreciated - thank you all. Xeena.

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xeena
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27 Replies
bantam12 profile image
bantam12

Stage 3 shows your kidney is beginning to struggle, you should be referred to a Nephrologist and Dietitian for monitoring and dietary advice, you can do a lot to slow down the progression to full kidney failure.

Kidney disease can cause secondary parathyroid problems which can be managed with medication, you need to see an Endocrinologist for that.

xeena profile image
xeena in reply to bantam12

Hi bantam 12 - it is only because i asked for my medical records that i have found this out about my kidney - but it was noted in July 2015 by the doctors and they did not tell me. They also say i have Lloyd George problem - i have looked it up and i am really angry as i always trusted what my doctors told me and i only know that i have many things wrong with me because they have told me over the years - in my records it also states that i have pernicious anemia - i was told about that but never treated for it. I had to pay £50 for my medical notes and most of the pages i cannot read as the ink must have been running out on their printer and i do not know if i can ask them to re-print them as i left that surgery when i moved in September 2017. Why are doctors so devious and nasty - they really do not care about people these days. I am still trying to get a new doctor - but they all say i am not in their area even though i am less than a mile from most of the surgeries. Thank you for your input - i think i will have to try and go private with the endocronologist. Xeena

Silver_Fairy profile image
Silver_Fairy in reply to xeena

If you are usually resident in the UK you have the right to be registered with a GP.

Since January 5 2015, all GP practices in England have been free to register new patients who live outside their practice boundary area.

Taken from the NHS website.

xeena profile image
xeena in reply to Silver_Fairy

Hi there Silver_Fairy - well i rang two doctors who are just under one mile from me and they are taking on new patients - but when i gave them my address they said i was out of the catchment area - i quoted what you told me and they said that they do not have to take me - i rang NHS England and they said they could not help me as it was up to the individual surgery. I am born and bred English and have always lived in the UK - i am going to try the Ombudsman - maybe i will get some help there. Thank you so much for your input i really do appreciate it. Keep well. Xeena.

Silver_Fairy profile image
Silver_Fairy in reply to xeena

Well I hope you get more help, you really need to be under a GP. Good luck.

xeena profile image
xeena in reply to Silver_Fairy

Thank you Silver_Fairy - i will just have to keep trying to find a doctor that will take me or i will have to move home again and perhaps be lucky and find a good GP. Thank you for the good wishes.

Hillwoman profile image
Hillwoman in reply to xeena

Hi xeena, can you contact your local PALS, or the CCG for your area, and tell them you are having difficulty registering with a GP practice? This simple administrative matter ought to be within their capabilities. ;-) As Silver_Fairy says, it is your right to be registered with a GP.

I can't advise about your kidney problem, but if you only have one left, clearly you need medical advice as soon as possible.

As for the PA diagnosis, it is nothing short of negligent not to offer you treatment for this. You will need B12 injections straight away, because PA leads to malabsorbtion of B12.

b12deficiency.info/

xeena profile image
xeena in reply to Hillwoman

Hi there Hillwoman - thank you for your message. I have already contacted them a few weeks ago and they also tell me that there is nothing they can do to make a doctor accept me in to their surgery - i really have tried every avenue in trying to find a GP who will take me - there is one approx 0.9 miles from where i live and it takes me six minutes by car to get there - but they say i am out of their area (well the receptionist tells me that) yet when i first rang them a young man answered the phone and said i could register there and so i went along to register and the receptionist was very curt and told me that i could not join that surgery - i even rang and asked to speak to the practice manager and was told no. So i give up. Thank you for taking the time to message me. Bless you. Xeena.

Hillwoman profile image
Hillwoman in reply to xeena

I find this very strange. PALS and your CCG have a duty to help you. No-one in the UK lives outside a practice boundary - that's what the NHS is for. Contact your MP if no other agency will cooperate.

Hillwoman profile image
Hillwoman in reply to Hillwoman

Just to add, please let us know how you get on.

xeena profile image
xeena in reply to Hillwoman

Hi there Hillwoman - - i have just spoken once again to PALS and CCG i have explained that i still cannot get a doctor and she has told me yet again that there is nothing they can do - but she will ring me back tomorrow to let me know if she can find a doctor who will take me on - so it is a waiting game and yes of course i will let you know how it all goes - thank you for all of your help it is so so appreciated. .

xeena profile image
xeena in reply to xeena

Hi Hillwoman - yes i will try my MP as well - thank you. Xeena.

Hillwoman profile image
Hillwoman in reply to xeena

I'm sorry I can't be more help to you. I really think your local PALS is failing in its duty to you. It used to be the case, and I thought it still was, that an unregistered patient could be assigned to a practice in their area, even if the practice had closed its list.

xeena profile image
xeena in reply to Hillwoman

Hi there - you have been a great help to me - i really appreciate all that you have told me - i am sorry that you live in a remote area it must be hard if you wanted to move to another practice. Bless you for all your help - i will keep you informed - thank you. Xeena.

bantam12 profile image
bantam12 in reply to Hillwoman

We moved to a hamlet outside all the nearby practice boundaries and none would take us but then our original surgery 7 miles away, where we had been patients for 20 years agreed to keep us on, if they hadn't we would have been stuck.

Hillwoman profile image
Hillwoman in reply to bantam12

??? I'm honestly dumbfounded. It's a fundamental principle of NHS care that everyone must be registered with a GP, and that the relevant body (PALS, CCG) can oblige a GP practice to register an unregistered patient living within their boundary.

bantam12 profile image
bantam12 in reply to Hillwoman

In a rural area where everything is miles away there aren't that many surgeries and it's a good distance to any village or town that happens to have one, we are actually outside our practice boundary but our GP is also a friend and neighbour so we got lucky.

Hillwoman profile image
Hillwoman in reply to bantam12

I'm glad you found a solution! It still worries me that this is happening at all. I live in a sparsely populated rural region (the North Pennines), which is apportioned between GP practices that each have a monopoly in their specific part of the region. So, one practice in my County Durham dale, one other in the dale to the south, another one in the twin dales to the north-west, and so on, and so on. PALS told me the Yorkshire Dales are managed in the same way. It causes problems for people like myself, who wish to move to a different practice and find that they can't.

xeena profile image
xeena in reply to bantam12

Hi Bantam 12 - that was very good of your surgery to keep you on - i am so pleased for you and thank you for your help and advice - i will let you know how i get on. Xeena.

xeena profile image
xeena in reply to xeena

Hi Bantam - just to update you about my lack of a GP - i have contacted everyone i can - even the MP and i still get told the same as before that i am not in their area -so i just have to pay privately which is not much fun when you are a pensioner and disabled - which by the way i cannot even get help with any adaptions to my bathroom - i have to go to my daughters house to be able to have a bath and for the security of knowing that she is there if i should fall - so i have given up now. I wish you and everyone well.

Coastwalker profile image
Coastwalker

Hi Xeena, My Mum had Kidney failure, yes do get your vitamin B12 checked and vitamin D. Mum sadly now passed had both these deficiency's.

My Mum also had late life low thyroid which I believe was overlooked for years as she could never loose weight and had piled it on with her diabettes. Sometimes overlooked low thyroid can lead to diabettes, then she was never on optimum dosage for thyroid. (I too have low thyroid,)

Also she was on a statin and statins can lead onto kidney failure or bring on diabettes or make diabettes worse. If anyone is on a statin for high cholesterol, Doctors years ago knew that high cholesterol meant you had Low thyroid. High cholesterol and low thyroid have an inverse effect on each other.

xeena profile image
xeena in reply to Coastwalker

Hi Coastwalker - i am so sorry that your mum suffered at the hands of doctors - i too have been in this state for years now - i have thyroid problems diagnosed in 2011 by Genova diagnostics but doctors who i was with at the time poo poo'd the results of my private tests - my one adrenal gland was exhausted at that time - i have never had any treatment for it and i was even told about my low B12 and vitamin D deficiency way back then - i also have very high cholesterol but i will not take statins as i have heard too much about them and i have also started to gain weight again after i suddenly lost three and a half stone - i am nearly fourteen stone again - one doctor did tell me that i was hypothyroid but nothing was ever done about it. I have told doctors that i think my high cholesterol is due to thyroid problems but it is ignored and i am labelled as a bad person. Bless you and thank you - Xeena.

Coastwalker profile image
Coastwalker in reply to xeena

We took my Mum down off of 9 prescription pills and she started to heal, but sadly too late. Be aware that some prescription pills can actually cause B12 deficiency. Good you are not on the dangerous statins.

Thyroid, B12 Deficiency and vitamin D often go hand in hand.

Can you get hold of any Thyroid blood results you have had recently ?

If you post up again asking which thyroid bloods you need Members can help push you forward and insist you have more tests. Sounds to me like you have an over looked thyroid problem, like I said over looked/missed or undertreated low thyroid can lead to other issues as I found out with my Mum.

Google 'Can Low thyroid lead to Kidney failure' No doubt.

xeena profile image
xeena in reply to Coastwalker

Hi there - sorry i have not answered sooner but i had laser eye surgery a week ago and i had to give my eyes a rest. When i lived at my last address the doctor i was under sent me to see a gastroenterologogist and she told me that i should stop taking the pain killer tablets called tramadol and also the morphine patches that i was on - she said told me that my doctor was lying to me and that i have a diseased liver - she asked did i want to be referred to another gastro as she was leaving the NHS as her conscience would not allow her to carry on having to lie to people - i declined and i also stopped taking all prescription medicine i was also on lansoprazole for acid reflux and i stopped them as well as they stop absorbtion - so i just get on with my old fashioned home remedies - i will let you know about my blood tests as i am going to get some more private one's done i no longer believe the hospital one's as i have even had nurses in the hospitals telling me that the doctors are lying to me - so what chance does anyone have in this day and age. - Thank you for all of your help and keep well. Xeena.

Coastwalker profile image
Coastwalker in reply to xeena

xeena, something I have recently learned in other areas, well worth looking into and makes sense.

Baking soda for kidney disease Patients NHS - UK

Cant believe this information is actually on a NHS site.

nhs.uk/news/medication/baki...

If the link doesnt work just Google kidney patients (or even kidney failure) and Baking soda. There are many to look at.

I actually take baking soda myself daily. It keeps the body alkaline, good for kidneys too.

xeena profile image
xeena in reply to Coastwalker

Hi there again - yes i will google this and i will try the baking soda as well - how much do you take?? - thank you so much - this is such a wonderful site - everyone is so helpful and knowledgeable it is like one big family - i am just so grateful that i can be a part of it. Blessings - Xeena.

Coastwalker profile image
Coastwalker in reply to xeena

I take half a teaspoon, twice a day, but I read that one teaspoon twice a day is also OK, but do google it yourself to make sure it is OK. Gobsmacked at what you said about the lies you have been told, so good of that lady to tell you the truth, but I am so not surprised, we have experienced this in our family too, NHS is unbelievable at times, much is hidden over if they wrong you and they form a barrier together if you complain. Yes brilliant site here xeena :)

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