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Friend’s mystery ill health

(75 Posts)
Newquay Tue 28-Sep-21 21:49:43

I have a friend who has seen endless “ologists” and had numerous tests and no one can get to the bottom of her problems. No one seems to be doing anything to help her. It’s so frustrating seeing her so poorly.
I recall seeing a prog where there was a group of specialists who took on cases like this-does this mean anything to anyone?

MerylStreep Tue 28-Sep-21 21:56:52

Newquay
I remember the program. But as I remember it, it was only a group of experts brought together for that purpose.

Newquay Tue 28-Sep-21 22:31:30

Thanks Meryl I’d thought that too! It’s so frustrating-don’t know what you have to do to get someone to take charge and help. So sad.

ElderlyPerson Tue 28-Sep-21 22:32:02

May I ask what symptoms she has, or would you rather not say?

ixion Tue 28-Sep-21 22:36:24

I don't think we need to know this, EP.

Newquay Tue 28-Sep-21 22:46:40

It’s quite a long list; neurologist says she needs a psychiatrist 😞 whoever she needs she’s not getting them

MissAdventure Tue 28-Sep-21 23:04:53

I totally sympathise!
Have been having the same issues myself, and it is very unpleasant to be treated as if toddling (or hobbling) off to the doctors every few weeks is some kind of hobby.

ElderlyPerson Tue 28-Sep-21 23:07:59

It is all anonymous.

The reason I asked is because collectively someone might recognise some symptom what he or she or their friend or relative had and if so the OP could feed that back to her friend, and if the friend so chose, the friend could ask the doctor.

For example, I am a vegan, so when I had a regular well-man blood test I asked if a vitamin B12 test would be done. As I had asked it was done each time and although it was in range it was going down so I started havimg a litre of Alpro unsweetened soya drink, which has vitamin fortification (including vitamin B12) each day and it went up fine. If I had not asked I might well have gradually got a lower and lower vitamin B12 level.

Yet what is interesting is that the nurse told me that when people have a blood test that vitamin B12 is not usually checked.

So maybe if the Op's friend asked if a vitamin B12 check has been done, maybe the answer would be 'no'. Maybe worth doing.

Vitamin B12 level depends on vitamin B12 being in the food supply and upon it being absorbed in the final part of the small intestine. If the absorbing process is not working properly then that could lead to a low vitamin B12 level.

I am not a clinician. I was just trying to help. I suppose I could have just not asked and not bothered.

A test for coeliac disease is often done routinely, but it might be worth checking that it has been done.

MissAdventure Tue 28-Sep-21 23:11:16

I have just been found to have a vitamin D deficiency (after almost 2 years!) and it was only tested as an afterthought; it isn't included in the usual blood tests.
It hasn't helped me, but it may be worth testing, if it hasn't already been done.

Newquay Tue 28-Sep-21 23:13:56

Thanks for that Elderlyperson. Trouble is so many different things seem to have been tried and not worked. From being an active woman she’s now in such a state, life is grim for her.
You’d hope wouldn’t you that her GP would have run a battery of tests but it seems not; she just gets shunted, as I said, from one «ologists» to another. It’s like they’re playing pass the parcel with her-it’s so sad.
I will pass on what you said.

ElderlyPerson Tue 28-Sep-21 23:15:51

Newquay

It’s quite a long list; neurologist says she needs a psychiatrist 😞 whoever she needs she’s not getting them

Where I worked once a lady was having problems, funny headaches, strange feelings. She was worried.

She had been to the doctor. She felt he was treating her as some sort of neurotic woman.

I then suggested she say to him "Are you treating me as if I am a neurotic woman?"

A few days later I was in a library and I asked something and the lady invited me to an area behind the counter, and I noticed a piece of cardboard with, written in marker pen, "Please do not use Mr Sheen in this area". I asked her what that was about. She explained how it affected her. Bingo!

I told my colleague. She asked the cleaning lady. Yes, Mr Sheen. She asked for it not to be used in her office. Her problems went.

MissAdventure Tue 28-Sep-21 23:21:24

www.letsgetchecked.co.uk/

You can buy blood tests online from a reputable company such as this, if it would help your friend.
They do vitamin tests.
I do hope the poor woman can get some help.

ElderlyPerson Wed 29-Sep-21 01:23:12

Something that might be worth doing would be to have a consultation with a hospital dietician. This would need a referral from her doctor. Usually face to face but perhaps could be done over the telephone in these pandemic times.

The dietician could assess her diet. Even if she or he finds nothing wrong or missing then at least it eliminates that as far as could be known.

Going back to the original question from the OP, it is possible that the way to get the team approach you mention is that the Clinical Commissioning Group for where your friend lives would arrange it. But I don't know.

www.england.nhs.uk/ccgs/

If your friend contacts the Clinical Commissioning Group for where she lives

www.england.nhs.uk/ccg-details/

she night get help or be advised where to get it, though I suppose she could just be told to contact her doctor.

I looked at a few briefly, they are not all to a standard layout.

If she cannot get anywhere then she could ask her Member of Parliament to try to sort it out for her. MPs have no power as such, but do have access to Ministers and a letter to a Clinical Commissioning Group from an MP asking what can be done for her may well oil the wheels if a gummed up bureaucracy is involved.

Details of her MP can be found here.

members.parliament.uk/

When writing, even if by email, include postal address and postcode as an MP can only act on a personal matter for people in his or her area and they check. No postcode can mean no reply. Her MP is her MP, even if she actively campaigned for someone else.

Parliament is in recess at present for party conferences, but their offices are probably still running, so no need to wait until the recess ends.

I hope this helps.

welbeck Wed 29-Sep-21 01:38:38

could she afford to consult a private GP.

welbeck Wed 29-Sep-21 01:40:43

and if the neurologist thinks she needs to see a psychiatrist, why can't he refer her to one, or write and ask the GP to do so.
or is the GP refusing to do so ?

welbeck Wed 29-Sep-21 01:41:41

that link to private blood tests looks interesting. thanks.

FannyCornforth Wed 29-Sep-21 04:36:20

MissAdventure

I have just been found to have a vitamin D deficiency (after almost 2 years!) and it was only tested as an afterthought; it isn't included in the usual blood tests.
It hasn't helped me, but it may be worth testing, if it hasn't already been done.

I didn’t know that Vitamin D deficiency wasn’t checked for in the usual blood tests!

I was found to be very vitamin D deficient in January 2020.

My hair had been falling out for around 15 years and was in a terrible state.

As soon as my levels were sorted my hair has grown back.
The blood test was done for something else.
If I hadn’t have found out I’d probably be bald by now.

BlueBelle Wed 29-Sep-21 05:21:15

Newquay she has every right to change doctors, sometimes a fresh mind can make all the difference although if she’s seen numerous ologists it does sound as if she has had a lot of help and the doctor has been trying

There are many hidden things that can take numerous tests to discover We all think doctors know everything but they don’t they are not gods
All vitamin deficiencies can cause a variety of symptoms but unless they are asked for in a blood test they don’t ‘just show up’ My friend was having a blood test for one health problem and while looking to see if her Vit D levels were low they found that they were so high she was on the verge of poisoning herself ( her daughter had bought her some VitD as she’d read that many people are under in this climate and she’d bought the strongest she could !!!)
Thyroid and diabetes can cause many varied problem until they are discovered other illnesses that can cause vague symptoms without pointing to anything specific are lupus, ME, Lyme disease, allergies etc or it could as the doctor is beginning to think be psychological

You don’t give any hints as to what problems she is suffering so there can’t really be much help here

I remember the programme you mean it was very interesting

Josianne Wed 29-Sep-21 08:48:11

Surely the doctors are missing something and need to carry on investigations. Has she had scans? It must be horribly frustrating for her that all they can suggest is to see a psychiatrist.
She could see a private GP but the trouble there is that the minute they ask for tests the bill would soar.

ElderlyPerson Wed 29-Sep-21 09:31:07

Another possibility is her sodium levels.

Sometimes issues with the pituitary gland can cause the body to think it has too much sodium and dunp it in urine, resulting in low sodium levels.

So asking if sodium levels have been checked is another one that she might consider adding to the list.

I suppose that with the best will in the world a General Practitioner is having to deal with many patients all the time, so maybe going on with a wriiten out list of questions might be very welcome.

On the question about getting something done. If she does come up against slow moving bureaucracy, something someone told me years ago about getting something done by slow town hall bureaucracy that could possibly be useful with any public body.

Write a letter to the Chief Executive and send it recorded delivery. That way they cannot deny having received it. I was told that because of that, such bodies log specially each recorded delivery item and thoroughly document what was done about it so that if, hypothetically and just in case, ultimately a Member of Parliament writes to a Minister on behalf of his or her constituent enclosing proof that a letter was received and Whitehall civil servants want to know what has been done as the Minister needs to reply to a question from a Member of Parliament that they avoid being seen as obviously incompetent.

Newquay Wed 29-Sep-21 09:41:25

Thank you all for your replies. She is able to pay privately to see different specialists and she’s had scans too. I think she’s so worn out now she’s not in any position to take any positive action -like writing letters etc. She and her DH-who is not on top form himself-are just surviving.
She had a traumatic incident years ago which weighs heavily on her so it just seems to get put onto psychiatric problems but, as she says herself, she has lots of physical symptoms too which are new to her and getting worse.

Baggs Wed 29-Sep-21 09:57:18

I haven't read the whole thread so someone may have mentioned this already: if your friend's neurologist, NQ, says she needs to see a psychiatrist, has she not had a referral to a psychiatrist?

Hetty58 Wed 29-Sep-21 09:58:36

My friend has been 'ill' for decades. She's had every test, scan and investigation available - on the NHS and privately. They show nothing, she's never reassured, so always wonders what 'it' can be.

I'm 99% sure that it's all in her head. Still, her firm belief in her illness being physical means that her body is out of shape, her medical anxiety has physical symptoms too - with poor sleep, digestion and concentration. Such a waste of a life!

Callistemon Wed 29-Sep-21 09:59:12

A test for coeliac disease is often done routinely, but it might be worth checking that it has been done.

We have not found that to be the case
You must have a very enlightened GP, ElderlyPerson

Hetty58 Wed 29-Sep-21 10:08:10

What I really cannot fathom is the attitude problem. She says she has no faith in doctors - yet constantly demands all these tests. Unfortunately, help with mental health is only offered to those who demand it - after a long wait.