I went to see Dr S in early Jan and he put me on a graduated dose of Thyroxine. I am now on 125mcg. I've not noticed much improvement and am due to see Dr S next week so he'll up my dose I expect. Dr S also wrote to my GP in Jan to tell them that I am most definitely hypothyroid. My GP kept telling me for years my massive weight gain was due to eating too much even though I have always had a very small appetite. Now I know its Myxademia. (Apologies if I've spelt it wrong). I was always a size 10 or a size 12 max. Now I'm a size 22. Anyway I phoned the GP today to see if I could have my Vitamin levels checked but they said no. The receptionist also said there is nothing on my records to say I am hypothyroid and nothing on my records to say that I am on Thyroxine even though they have the letter from Dr S. What should I do about this as it seems they are completely ignoring what Dr S has told them?
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Karispitit
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They have ignored Dr S as he is a virologist and your GP would probably have checked. Some doctors would prescribe but yours obviously is ignoring whatever Dr S says.
It is very frustrating but you will have to purchase your levo yourself and Dr S will give you a private prescription.
When you feel better and begin to lose weight - it will be proof to your GP that he was wrong. So many people are undiagnosed due to the TSH blood test which is actually from the pituitary gland
My So**ing GP's totally ignore Dr S too. I spent 5 hours typing a 4 page letter of complaint last Friday (enough to complain to the GMC) about the way I've been treated by them only to be completely ignored. They drive me insane :-(( My previous doc was so glad to get advice off Dr S, she even made sure my dose of levo was written in stone before I moved house. I'm just waiting in the next month to see my 175mcg reduced to something stupid like 50mcg..................
Our GP ignored Dr.S. letters for both my daughter and husband. He preferred to take the advice from the local hospital which doesn't even have an endocrinologist and where neither had ever been referred or seen by anyone.
Some people are lucky enough to have a GP who will pay attention, however, but it is the luck of the draw.
The letter form Dr. S should have been filed and should be in your records, even if they are paying it no attention. Do they definitely have it? We have found that paperwork has mysteriously disappeared from our family's records. Do you have a copy of the letter?
Jane x
• in reply to
Hi Jane,
The GP actually sent my blood test results without my knowledge or permission to an endo I have never seen!
They definitely have the letters because the last time I saw this particular GP she was bullying me into not seeing Dr S again.
Yes I have copies of the letters. His concerns have never been followed up.
Helen. X
• in reply to
They dont actually need permission to consult with someone else (for their benefit of treating correctly) unless you have specifically stated you dont want them too. There will be a code of practice info leaflet available on request or in the surgery that you can read, it comes under the sharing information part. You will have agreed by default when you joined the practice. (or your mother will have if you have always been at the same one)
• in reply to
Thanks for this info. I will write and tell them I don't want my info shared.
Good Medical Practice: Providing good clinical care
2. Good clinical care must include:
a. adequately assessing the patient's conditions, taking account of the history (including the symptoms, and psychological and social factors), the patient's views, and where necessary examining the patient
b. providing or arranging advice, investigations or treatment where necessary
c. referring a patient to another practitioner, when this is in the patient's best interests
3. In providing care you must:
a. recognise and work within the limits of your competence
b. prescribe drugs or treatment, including repeat prescriptions, only when you have adequate knowledge of the patient's health, and are satisfied that the drugs or treatment serve the patient's needs
c. provide effective treatments based on the best available evidence
d. take steps to alleviate pain and distress whether or not a cure may be possible
e. respect the patient's right to seek a second opinion;
f. keep clear, accurate and legible records, reporting the relevant clinical findings, the decisions made, the information given to patients, and any drugs prescribed or other investigation or treatment
g. make records at the same time as the events you are recording or as soon as possible afterwards
h. be readily accessible when you are on duty;
i. consult and take advice from colleagues, where appropriate;
j. make good use of the resources available to you.
I see the under-lined bit as being of particular relevance.
Of course, these words tend not to mean nearly so much day-to-day but if a complaint is entered they take on a heightened import!
Rod
Thanks for this Rod! I like point e. too. I did at the end of my letter state "at the end of the day I have patient choice, and I will do whatever it takes to get well" I bet that went down like a lead balloon.
Dr S has raised other concerns too outside my hypo symptoms, one problem requires surgery. I have also asked to discuss my scarred kidneys, also have a cyst and flecks in the left one. I did state in my letter that the last time I had a bladder and kidney scan I had the cyst but no scarring. I know a diminished blood supply to the kidneys in hypo can cause scarring. I have asked to discuss this further, but I've heard nothing. They are in my opinion leaving themselves wide open for a case for neglect of my health.
Hi GP`s will often not take any notice of private doctors or prescribe on their instructions. A private consultant is totally different. The GP has to refer a patient to them, and always follows there instructions. I see 12 to 16 ,depending how I am.Then following their letters after a consultation, I receive the drugs etc etc.
Hi Jackie, I was referred by my previous GP to Dr S, she was very glad to have a second opinion. She followed his treatment as she new full well I was very poorly and not responding to her treatment.
I have explained this to the new GP and got shouted at. Apparently there was a "quack" his word not mine, locally treating thyroid patients and had decided as a practice to ignore and not respond to any other doctor treating thyroid patients. It was very ugly, the doctor was very aggressive and made me cry with his threats of withdrawing my meds and blood tests. The next morning the practice phoned and said that he had decided to treat me. I have recorded all this in writing and made a complaint. Now I won't go to this practice for anything other than repeat prescriptions.
Hi That is dreadful but I am not surprised.Can you not change practices? There is one of the GP`s ( senior) at my practice ,who has caused me so many problems and risks but I am unable to change. The GP I see knows, she is never to be involved in my treatment on my own GP`s and my instruction .or give any info. Trouble is, mine is part time and hospital consultants often phone, without our permission for info, when very ill. If she is the only one there as often the case, she causes so much trouble by down right lies.totally different to the notes! There is little that can be done. it disgusts me, when some wonderful doctors have all the trouble with the GMC and not people like her! Etc. There seems to be very little, I am told, that we can do , because they are self employed, except taking them to the GMC and all the that involves.
Hi Jackie, I'm in a very remote rural area. There is another practice about 9 miles away. The partners are in dispute and 2 of the GP's are not getting paid because someone pulled the plug on the account that pays them. The next practice is 15 miles away. I would drive to this to get good treatment though.
I am so scared Dr S is going to retire, he's my lifeline, I did say that in my letter of complaint to my GP, lol! I don't know how he copes with everything that has been thrown at him. At the end of the day he's just being a good doctor. XX
Hi Helen, It is such a problem for you. When I saw Dr. S for 2 years, as only person I could see as referrals not needed then. I was very grateful to him. Every week I had the most appalling letters with threats from my head of practice ( who I avoid ,like the plaque now, for other reasons). She used to write to him too. I was entirely on my own, she said that I had nothing wrong. I recently found out that 10 years before that my then Nephrologist/kidney specialist had said that I needed something done! She never told me and no copies of letters in those days. So, I have a very poor opinion of some docs, fortunately some totally different like my endo.I have no problems now as I see an endo but she would not refer me!
Hi Jackie, you have been made so very poorly by your doctor, it's hard to live with the anger I know. Thank goodness you now have a good endo you can trust. It seems most of us have to step outside the NHS to improve our health. XX
Thanks for the replies.and for the guidance notes from the GMC I asked my GP to refer me to Dr S and she was happy to (get rid of me) refer me. I am so very shocked at how badly we are all being treated and my heart goes out to you all. They should make a documentary about our experiences. I continue to shake my head in disbelief and have so much compassion for all the posts on here.
I will write to my GP next week and ask them to confirm my thyroid diagnosis has now been stored on my medical records and if not why not. I lost my mother through medical negligence 13 years ago. Her GP said there was nothing wrong with her she was just a bit depressed and 24 hours later she died in my arms. I have a son and I see it as my duty to get myself well again for his sake as I do not want him to go through what I did losing my mum.
A few years ago a consultant told me I had breast cancer and didn't have long left to live and that I needed an emergency op. Then I found out after the op none of it was true. I saw another consultant years later and it became so obvious there was a cover up about it all. I now have absolutely zero confidence in the NHS.
I know GP's hate receiving anything in writing as it creates a paper trail so I will put them on notice that I will hold them legally responsible if my thyroid condition continues to be ignored. I am sure they still won't care but at least I will have protected myself should things get worse for me.
Hi, That is simply dreadful. We all know there are risks associated with surgery. To put you through that unnecessary is dimply awful.I hope you at least had an apology?
Best wishes,
Jackie
NHS GP's have no obligation to treat anyone who has gone private.
Once you go private you have effectively opted out of NHS care for that particular illness and associated problems.
They cannot however declare that you dont have whatever you are being treated privately for, if there is test results to prove otherwise, although, they will stick by the (self-imposed) guidelines of who is and who isnt considered to be hypothyroid based solely on the TSH test.
<insert word of choice here to describe this kind of doctor, the word of my choosing would get the post deleted>
Hi first time writing. I am a health professional but not a doctor. I am autonomous in my practice which means that I do not have to follow a doctors recommendations if I disagree with them. I would have thought that is the same for GPs in the NHS as well as private practice. The only thing you can do is to find a Dr which is willing to follow your consultants recomendations
Hi Roslin, if that is the case then as the patient we have a legal right to know whether our GP is going to accept the consultants advice or not. My husband is concerned about me as he says if ever I am taken suddenly ill or in an accident those treating me need to know I have thyroid problems and am being treated for it. Fortunately I am one of those people like others on here who will not take no for an answer and I will mountains to make sure I get the health care I need. I was forced to go private because the NHS GP wouldn't help me and I worked all over xmas and xmas day to get the money to pay to see Dr S so there is no way I will let them ignore my diagnosis. If I have to take it to court to get it noted on my medical records then I will.
Hi Karispitit, I did not mean to upset anybody at all with my comment. I was just stating fact which doesn't mean that I agree with it. I am very much in the same boat as you. I had cancer of the thyroid in 1980 and was OK on levothyroxine for 2 decades. For the last 15 years I have been going downhill gradually. Nov last year when I had a kidney removed for kidney cancer. I got over the actual OP in about 3 months but since then I have hardly got off the sofa. I have all the symptoms of hypo but my tests are showing very high T4 and TSH, I am on 200 mcgr. I am gradually asking for all the tests from the GP and I am doing a private cortisol spit test today.
Regarding your husbands worries, I live in Scotland and in the Lothians there is a computerised system which will flag up chronic conditions and medication. I don't think that it is linked to anywhere else in the country("communication" within the NHS has always been a problem). Why don't you a bracelet which will alert to your problems. Good luck with getting what you need to feel well.
Hi roslin, you didn't upset me and I'm sorry if I gave you that impression. I think your idea of wearing a bracelet is a very good idea and it will certainly put my mind at rest. I hope the results of your cortisol spit test were good. I'm on 125mcg of Levo and its having no effect on me apart from making me very depressed so I'm going to see Dr S on Saturday and will ask if I can change it to NDT
No they don't and they get away with it too.
After serious failures by an nhs gp practice in SW London, i obtained a private report from a specialist as to a number of diseases they had failed to diagnose. I presented the written report to the nhs gps and they ignored it, even when i made a formal complaint.
My complaint has now been escalated to the Ombudsman.
NHS gps even ignore NHS specialists as i recently found when my nhs gp refused to implement any of the recommendations made by the specialist to whom she referred me. Beyond useless, and my tax money keeps them in a job.
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An actual apology from a GP!!!!!! Thyroid patient fights back. 
Bloods, T3, and Endos
HELP please with new 'private' blood test results compared to GP's. 
How long does GP surgery have to supply records
