Today I have received a letter from a consultation I had back in Aug. Been waiting for some time! Summed up the Consultant has said, in her opinion, that I have a type of neurological functional disorder. And has suggested a referral to a Prof in London St George’s.
I’m a little worried as to what this news actually means going forward
I’ve read you must inform the DVLA and you shouldn’t drive either!! I’m so much better in myself since I started on NDT with the T3 element.
Has anyone had this diagnosis and what happens next please.
Thanks
Pam
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McPammy
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I looked into this when I was undergoing investigation for my symptoms (which resulted in a diagnosis of essential tremor in my case). As I understand it, it's fairly common, and is "functional" because the symptoms affect the “function” of the body rather than being caused by any damage to the “structure”. A computer analogy is that the hardware is intact - nothing is degenerating or nasty, but the program is not responding. Psychiatrists have sometimes referred to the same condition as “conversion disorder” because patients may be thought to be “converting” stress into physical symptoms, but it's now recognised that not all patients experience significant psychological problems and that many patients just have an accident or a period of illness and then develop functional symptoms afterwards.
One of the Sheffield Teaching Hospitals usefully describes it this way:
"Functional Neurological Disorders (FND's) is the name given for symptoms in the body which appear to be caused by problems in the nervous system but which are not caused by a physical neurological disease or disorder. Health professionals sometimes call these disorders ‘medically unexplained’, psychosomatic or somatisation. We prefer the term ‘functional’ which just means that the body is not functioning quite as it should.
FNDs are quite common, occurring in about one quarter of the patients we see in our neurology clinics. For most people these symptoms are short-lived, but for others they persist for months or years and are very disabling. Symptoms tend to change with time, and as a result patients may often repeatedly consult their doctors for advice or investigation. Many doctors also find these conditions puzzling, and patients may find that they become frustrated by the shortage of information about why these symptoms occur and what to do about them."
Thank you so very much. I can relate to being frustrated for sure. As for months I feel as though I’ve had little real help from the NHS. I still believe that my problem is Endocrine related. I just couldn’t tolerate Levothyroxine after 11 years of being on it. When I took it my strength just melted away. I even stopped Levothyroxine for a whole week. Within 2 days I was fine!! My GP saw this and requested NDT which I’m now on and so much better but not 100% just yet. It’s tsken 3 months to get better than I was. Now today I have a letter from a consultation back in Aug saying I have Neurological functional disorder. I think they haven’t realised how much better I am today on NDT. My Endocrinologist here in Chester has been lacking in support all along. I don’t know why. I thought Drs are supposed to help patients. It doesn’t make sense to me.
I’m worried about the driving side of things. I am driving now and have been back to it for a good few weeks. I feel fine with it.
Beware the word 'functional' in any medical context. I've had the term applied to me for neuro symptoms and signs (the cause turned out to be pernicious anaemia, an autoimmune condition), swallowing problems, sleep apnoea etc. etc. All were complex problems that no-one wanted to treat, and increasingly the 'MUS' designation is used to pass the buck back to the patient and deny them useful help. humanbean has written a few posts on this subject, which you might find interesting. I'm not suggesting that you don't take up your referral, but it's as well to be cautious when dealing with doctors in this context.
Hi. Thank you!!! I know exactly what you are saying. I feel as though they can’t be bothered or trying to swerve me as it’s maybe a little more complicated than the norm. Functional to them I believe is no more money on this patient now. Drs have sent me on wild goose chase I believe just so they don’t have to look deeper and try and problem solve my condition. I have improved but by this site and helping myself mainly. From being unable to walk for months to now going out for walks and starting to enjoy life a little better. Just building gradually. I’ll tske a look at humsnbesn’s posts thanks.
In your shoes I would reject the diagnosis. A "functional" disorder boils down to the doctor saying it's all in your head and you are mentally ill. The number of words and phrases that doctors use to hide "all in the head" diagnoses is staggering :
Medically Unexplained Symptoms
Medically Unexplained Physical Symptoms
Persistent Physical Symptoms
Conversion Disorder
Somatoform Disorder
Somatic Symptom Disorder
Bodily Distress Disorder
Bodily Stress Syndrome
Functional Disorder
Functional Neurological Disorder
Functional Somatic Symptom Disorder
Functional Distress Disorder
Physiologically Explainable Symptoms
Polysymptomatic Distress Disorder
I'm sure there plenty of other fake conditions made up of standard words that they just toss together, see what falls out, and then string them together in practically any order they like.
The basic idea behind it all is that patients have either
a) nothing wrong with them and they are mentally disturbed by normal sensations in the body
OR
b) they have a condition which is known about or treated but they (the patient) still insists they have uncorrected symptoms.
The usual policy is to gaslight the patient, put them on anti-depressants, and refuse to test or investigate further. This is because the doctors believe doing further tests and investigations convinces the patients they have something wrong with them, even when they don't, so the patient must be abandoned (other than prescribing anti-depressants).
It's all bullshit designed to save money for the health service and the DWP. Having such a diagnosis on your notes will make it much harder to get treatment for anything in future, so reject it.
In the future when the NHS has ceased to exist as a viable health service and we all have to pay for insurance, then insurance companies will deny benefits if they can to people with "mental health" issues like functional disorders or somatoform disorders, because if you have had the standard treatment and you still say you are ill they will cut you adrift and deny benefits because you are choosing to be ill.
Please note that UK psychiatrists are spreading their poison far beyond the shores of the UK, and that their beliefs are carrying weight in places like Australia, New Zealand, Denmark, The Netherlands, Sweden, and other places. I'm not sure if the USA is getting sucked in too.
Oh my good god I’ve finally found someone who agrees with me.!!! 👍. I agree with all you have said.
I’m going to reject it as not enough had been done to check my Endocrine yet.
I cannot believe how I’ve been treated this year by the NHS Endocrinologist from Chester Hospital. He referred me to a neurologist before he’d checked if I needed NDT and cancelled my insulin stress test to see why my ACTH was too low. He even said in the same referral letter to consider unexplained diagnosis. I was shocked. He only saw me that once after I had collapsed and was taken to Chester Hospital. I don’t know to this day why he was so dismissive so early on. I had low TSH. Low Cortisol and low ACTH all under the range. I also had low blood pressure and heart rate in low 40’s. Which I’ve never had before. All budgets and get rid I thought back then in May this year. Now I’ve actually been diagnosed with NFD. I’m mad as hell with it. I’m trying to get to see a private Endocrinologist as soon as I can. I’ve even lost my job this year working for Rolls-Royce as contractor. I’ve worked all my life and never felt this bad ever.
Thank you so much for your valuable message. I’m going to show it to my partner as soon as they get here tonight.
Hi McPammy, thanks humanbean! I know a little bit about pituitary/adrenal issues & you're right not many Endos have much idea about these issues & aren't very good at interpreting the results of the short synacthen test or even ACTH & cortisol levels. if you contact the Pituitary Foundation they will be able to direct you to an Endo who does. You certainly need further investigations for low cortisol & ACTH results. I'll pm you a private Endo who is fantastic & very helpful.
One thing I forgot to ask is how can you reject a consultants findings. Do you have any idea. Or do I just write back explaining why I think it’s not NFD.
I don't know whether rejecting the diagnosis does much good, but doing and saying nothing about it will definitely not help. Write a letter to the consultant, copied to your GP, explaining in some detail but as concisely as possible (I know that sounds contradictory, sorry) what your symptoms are. Stress the physical nature of the symptoms and include test results that show you have an untreated problem. Keep the letter to no more than a page if possible.
Make sure you specify to both the consultant and the GP that you want the letter stored with your hospital and GP surgery records.
It mentions three types of adrenal insufficiency - primary, secondary and tertiary. I think that endocrinologists will often only test for primary adrenal insufficiency i.e. they look for Addison's Disease and not much else. If you have a problem of secondary or tertiary adrenal insufficiency then you might not get diagnosed because they often don't test the pituitary or the hypothalamus.
I may have gone off in completely the wrong direction - my knowledge of cortisol and adrenal health is superficial at best.
Hidden knows a lot more than me about the adrenals. Hopefully she may visit the forum, get notified I've tagged her, and can comment more sensibly than me.
You’ve been absolutely brilliant and absolutely right. I can’t thank you enough right now.
Just to know I’m not alone is this world is a huge tonic.
I will right to the consultant and point out professionally and politely some results and change of meds that I think needs to be considered. I’m hoping to see John Wass too to help me understand where my health has fallen down this year.
Thank you again. I will let you know any outcome. I don’t want to bother you though. I’m sure you have enough of your own stuff to deal with.
I hope you ate alright right now and your health is stable.
Glad I could be of help. Make sure to keep any letters you write as polite as possible. It really helps in any appointments with doctors, when the problem is invisible, for you to have a witness with you - preferably a man - if at all possible. You are also legally allowed to record appointments, and you don't have to mention you are going to do so, unless you want to.
I don't go to doctor appointments without my husband any more. (I hate having to do this, but pragmatism wins out over principles every time.) Doctors are far more polite than they used to be as a result, and it takes some of the stress out of having to see them.
It's galling to say this, isn't it? But you're right, even in the presence of a female doctor (who ought to know better) one's word gains added weight in the presence of a male partner, nodding in confirmation.
Yes, my husband is worth his weight in gold in all sorts of ways, but in doctor appointments he's priceless!
In an ideal world I would always be taken seriously when seeing doctors, but after nearly 45 years of struggling I've given up hope of this happening when I am alone. I do still go alone if the condition I'm complaining about is visible though.
It occurred to me recently that before puberty my doctor appointments were almost always about visible things e.g. mumps, measles, chicken pox etc.
But since puberty the problems I've had have almost all been invisible and I apparently turned into a lying hysterical waste of space the day my periods started.
Hi. Thank you again for your valued suggestions. I’m not 100% sure which way to play this. The consultant has referred me to a NFD NHS specialist in London, who is supposed to be the best in England. I was thinking of making an appointment to see a private Endocrinologist John Wass who is in Oxford. I live in Chester. I guess it depends on waiting times to see them. Maybe I should see them both.
With regards to taking in someone with you. My partner has always been with me at all times. However, I am gay and my partner is female. I have wondered if this aspect hasn’t done me any favours. In hospital, the three times I’ve stayed in this year, my treatment from staff has not been poor. I have wondered but then thought surely not in this day and age. Maybe I’m wrong. Some doctors look down on women even within their own family. So what chance do I have in my circumstances. I did record some ward rounds with Drs in hospital. Only so I could play back and not miss anything they said. Sometimes I can’t understand them clearly.
I have kept all my blood test results and got copies of all other hospital tests too. As nothing ever has happened to me like this before. I’m in strong belief it’s something to do with my thyroid and cortisol. Maybe my ACTH too as these bloods were under range. My vit D is quite high at 98 and has been all year, even in March during the deep winter we had. All the sun we had this summer I never sat in it once as I just couldn’t.
Each time my TSH is over or under the range my strength is greatly effected so much so I can’t walk. I’ve even been crawling along the floor I was that bad for months.
Thank god my GP saw me when I abstained from Levothyroxine for one week and she was convinced I needed another thyroid drug. As I was back to normal strength just for that one week. NDT was slow to improve me but after 3 months on it now I am 90% better. Just a wobble each time I do something too physical like painting or clearing out my garage lately. I had to stop as my legs started to crumble. I was fine again the next day. Cortisol or TSH?
Anyways I’m sorry for going on about my symptoms. I’m just very glad I’m so much better. It’s tamen 8 months and I’ve lost my job. But I’m still alive to tell the tale!! 👍😀.
I hope you’re doing ok and things are at least stable for you.
Many, many thanks. This is a boost for me to keep going.
And / or write to consultant you have been referred to, explaining improvements & bloods etc and asking if he / she feels it is necessary to attend. Hopefully they will write back saying not!
If consultant referred you on then it may be worth attending...
Not to agree with diagnosis but ..
1. Take your bloods along demonstrating endocrine issues
2. Inform that changing to different meds and ditching Levo has improved things
3. To inform where you are at now, since properly medicated and how much better you are
Any ‘specialist’ that a consultant refers you to who specialises in ‘functional’ diagnosis should be able to write back to consultant (copying in GP) suggesting it is more likely endocrine related and as significant improvements not likely ‘functional’
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