Just to let the people who have been giving me advice i am back from the GP.
It was a young female locum, she seemed quite interested in what I was saying, however my carefully devised speech which i hoped would make me sound like i knee what i was talking about came out a bit garbled with some tears thrown in(damn my emotions).
She felt my throat for possible enlargment of goitre but stated she did not feel anything. However she will ask for thyroid ultra sound but explained it may be rejected. She is requesting for the B12 test and Pernicious Anemia test and she was the one to mention vitamin D. She said i may have to wait seen as i only had some tests done not that long ago.
She also suggested depression and to look into Chronic Fatigue Syndrome, which was something i thought about months ago.
She didnt seem overly concerned about my Thyroid results. She has prescribed folic acid but i dont know if i should wait until I have tested again to start them. She has also suggested vitamin supplements.
Guess its just a waiting game now.
Thank you everyone for your support and advice.
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HappyH81
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Reject a diagnosis of chronic fatigue syndrome. It's a dustbin diagnosis that is generally taken to be a sign that people are mentally ill and they just think they are ill, they aren't really ill. Once you have that diagnosis on your notes you'll be lucky to ever get treated for anything.
There is probably no such disease as Chronic Fatigue Syndrome, just a lot of badly treated patients with thyroid and adrenal problems. Since the NHS say it is not curable, it is an excuse to ignore everything that goes wrong with you for the rest of your life, So don't accept a diagnosis of CFS. Ditto depression unless there is scientific proof via a blood test that shows low levels of neurotransmitters.
CFS may have been recognised as a physical (biomedical) illness by the WHO but in the UK it is recognised as a mental (psychosocial) illness for which the treatment is anti-depressants, CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy).
People who are given CBT of the type used in CFS assume beforehand that it is aimed at helping them to cope with their illness, but it isn't. CBT can differ depending on what the therapist is trying to achieve. And in CFS they are using CBT as a way of eliminating the patient's belief that they are ill. And apparently this treatment is often abusive and bullying.
GET usually makes people worse, because if you don't have the energy to exercise then forcing yourself to do it just makes problems worse.
Another problem with CFS is that the NHS is starting to employ all sorts of weird and wonderful treatments. For example, the Lightning Process, which is often used in children who can't fight back. The "treatment" is basically teaching children to lie and then others assume the lie is the truth. If you tell the truth ("I feel awful") then the sufferers often get intimidated and bullied and told they aren't doing the "treatment" right. They are supposed to say something like "I feel well".
I'm not knowledgeable on the causes of CFS. I'm inclined to believe that many cases are caused by all sorts of commonly ignored problems or problems which are under-treated and assumed to be minor, whether it be related to thyroid, adrenals, nutrient deficiencies, poor gut health, and probably dozens of other things. But I'm not an expert and could be completely wrong about everything in this post!
Yes. My friend died from a twisted bowel after having CBT and GET as they denied that she was physically ill and made her affirm that she wasn't - even though she'd needed an iron infusion a few weeks earlier. By the time her husband worked out she was really ill, it was too late to save her.
That's appalling and very sad. It seems to be the way that the NHS is going for all sorts of conditions - blame the patient's mental health and dismiss them to carry on suffering - it saves money.
You are not obliged to take anything that a doctor suggests. You don't have to take anti-depressants if you don't want to. However, since some of a doctor's salary is paid on the basis of incentive schemes nowadays, they don't have to agree to treat you if they don't make any money out of you. (As far as I know.)
Like some others on this forum I avoid visiting doctors if and when I possibly can, and I test and treat as many of my own health problems as possible. But I realise this isn't something that everyone wants to do.
Humanbean your information sounds very interesting. I always wondered why they were so quick to dish out the anti-depressants.
Tbh the treatments that are suggested to treat CFS is not something i woukd really care to try. I have some training in CBT and i dont see how this will help me. My sister in law had the light therapy and i feel that made her mental health worse. And the graded exercise i know i will hate as going to the gym makes me feel ill after. I hear people saying they feel great after it. Ive never ever felt great after a gym session i feel nauseous.
I've never (as far as I know) had a diagnosis of CFS but I have had diagnoses in my youth that are still used to judge me 40+ years later. I don't know what those diagnoses were, by the way, because I was never told I'd been put on trial and found guilty. I just know that I've been assumed to be a lying, attention-seeking hypochondriac pretty much my entire life.
As a recent minor example of the type of thing that sometimes happens...
I had a minor accident (a fall) while I was away from home a few months ago. I thought there was a possibility I had broken a bone, and so I went to the closest A&E which was about 70 miles away from my normal haunts. I stood in a short queue waiting for the people ahead of me to be dealt with by the receptionist. She was smiley, friendly, jokey and chatty with the patients ahead of me, then it was my turn. I gave her my name and date of birth and she looked me up. I was surprised to discover that she had access to my details. And as soon as she found me she scowled at me, became very brisk and dismissive, and the smiles and friendliness completely vanished. This is a pretty standard situation for me to find myself in, with admin staff, nursing staff, doctors and consultants.
I do read some CFS forums on occasion, because I'm aware that it might be something I get diagnosed with. I want to know what I'm up against. And I feel very, very sorry for the people with an ME or CFS diagnosis because they appear to be almost universally derided by loads of people.
If I were you, I would ask to see a copy of my medical records to see exactly what is on them that is causing this problem for you. If it’s wrong I would write to GP and ask to have it removed from the record.
You can have a copy of your records under GDPR legislation and the GP can’t now charge for this. It’s terrible that you are being treated this way.
I bought a copy of my entire GP record, but the doctors can remove anything they like before they hand over any copies. They use the excuse that it is done for the good of the patient's mental health. My records had been sanitised before I got them and there were some suspicious gaps and omissions.
Nothing can be removed from one's medical records, as far as I'm aware. Additional information can be put in by a doctor but I suspect this doesn't happen often. And patients can write letters and have them kept with their records. But if the doctor doesn't trust the patient then any information from the patient is unlikely to be believed.
Must admit I have little trust in the medical profession too after terrible experiences with my profoundly deaf brother in law, my profoundly deaf mother and myself with Hashimotos. They definitely don’t like informed patients! And most definitely don’t want any help in dealing with deafness because of course they “deal with deaf people all the time”. They don’t, they deal with people who are hard of hearing! Entirely different! I try to avoid the medical profession like the plague too. Not easy at the moment with Hashis and TED.
My trust has been severely shaken since my diagnosis of UAT 3 years ago. I deeply regret I wasn't more informed and sceptical when my dear Mum was so poorly. She kept getting fobbed off by her useless GP. I might have been able to help her more before she died, 4 years ago.
I would email the hospital you visited 70 miles away (phone their Medical Records Legal Dept for correct email/postal address & a name) request copies of ALL records including computer held, all notes, reports and test results (blood tests, radiology etc)
Then write to your local hospital + any others you have attended, request the same.
You should get everything now, without charge and without delay.
Oh my word that is so unprofessional. Can you speak to Citizens Advice for further help in relation to your treatment by medical staff and what is on your records?
I suspect my only choice would be to take them to court. And besides, I have no proof. No recordings or videos, and as I said, my GP notes were sanitised before I got given them. The NHS has taxpayer's money to call on when defending themselves in court, but sadly, I don't. I would be afraid of being made bankrupt. I've read that one way the NHS gets round awkward court cases, in the event that they lose, is that they appeal and appeal until they've bankrupted the person who is suing them.
This link is about whistleblowers rather than patients, but it describes how the NHS works very well :
I’m not sure if anyone has said it yet but please make sure you get good quality folate NOT folic acid if you haven’t been tested for the MTHFR gene mutation. If you have this mutation, which is pretty common, the folic acid will build up in your body and remain unusable (and potentially dangerous).
I hope you get proper answers and not just assumed depression or CFS.
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