I will have to see another doctor with him. my experiance of child care in this country and observations are that the doctors can be very controlling re thier patients and the service provided is crud. He is very poorly and hypothyroid. If he does not have genetic resistance then I am in for a battle to get him some treatment. I am contemplating hiring a soliceter to attend his appointments with us. I suppose I need to talk to a legal team to see if this might be possible. His last peaditrician threatened another doctor who had offerred to give a second opinion. Lied on paper, refused to work with an endo from addenbrooks who offerred to help and was utterlly obstructive about getting some bloods done. I know that if I turn up to an appointment with a soliceter in tow I will not be the most popular parent in the world but it will ensure the doctor behaves professionally and should help my child get the treatment he needs. Any thoughts?
I am thinking that if my child does not have ge... - Thyroid UK
I am thinking that if my child does not have genetic condition he should soon be tested for.
Where do you live?
bristol Bunny jean.
I'm afraid I can see a dr refusing to see you and your son with a solicitor present. They'll probably shout " patient confidentiality" I think there'd be a limit to what could be achieved with a solicitor present.
Agree with you totally about the woeful state of health care in this country. We're all being fed propaganda by the government to shut us up.
Would it be beneficial to see a consultant privately ?
I've never heard of anyone having a solicitor present, but I cannot imagine it would achieve anything. They would not know enough about medicine.
Has your son had any blood tests? Your GP must have referred you to see a paediatrician, I'm guessing. Does the paediatrician think your son is healthy or does he think he has some other problem? Most hospitals have a complaints procedure if you wanted to take that route.
I'm afraid our NHS is not in a great state. Doctors are tied to poor budgets and not enough time, but I suppose at least we do have an NHS. Perhaps as suggested it would be an idea to pay for blood tests and see if you an glean anything? Or perhaps you could see your helpful endo privately if necessary?
Yes he has had limited blood work. The main reason the NHS is not in a great state and the cause of my child lack of treatment is down to the arrogance of the medical profession. It has been the cause of most unnessasary deaths for decades and I cannot see that throwing money at them is going to humble them enough for them to start listening to patients and famly and other professionals. Treating thyroid patients would save the NHS loads of money. It will also not stop the NHS from being so utterrly controlling about child care. I would take him to Belgium to see a very good specialist there but he would be removed from me when I got back as happened to the last person.
If you are seeking the best medical care for your child, how is it possible for him to be taken from you in Belgium? Is this the same Europe wide?
Several cases of children bring taken into care when parents disagreed with NHS. One family was pursued by Interpol and arrested because they wanted to get proton beam therapy for their child's brain cancer but NHS disagreed. Child got the treatment and got better - so now there is going to be to be a proton beam therapy unit in England. NHS is way too powerful.
I see. But if you know of a Dr who would help you, and your child isn't already in hospital, then go for it if you are able. I would .
No child would not be taken in Belgium but if we returned back to Uk. It is not safe to seek an opinion or treatment for a child outside of Uk even in Europe. Unfortunatley the NHS control in such matters was reinforced by high court recently. It is deeply racist and abusive of familys but a reality of being a parent in this country is that on the whole state services are unsafe.
Not the same Europe wide. Children are very rarely removed from parents from what I can gather in other countrys.In this one they can be taken if parents do not doff thier hats low enough when a doctor tries to enforce rubbish care.
Have you tried asking the Addenbrooks endo what you could do if the paed dr won't cooperate?
I have sacked paed and hoping that addenbrooks dr will help. She has very kindly offerred to see him re genetic testing. It is a bit of a shot in the dark and I am trying to wrok out options. I can imagine dr refusing to see me with soliceter there but wondering what legalitys are I think proabably unviable but also not sure that a doctor can refuse to treat someone. I am just not confident that this genetic test will work outand as kind as this endo at adennbrook is being all she could do if not genetic is reffer him to another endo in bristol. I suppose I am jumping the gun a bit but just want to think about the best way to tackle medical profession if this happens.
I'm in the process of trying to get my learning disabled brother seen by Professor Chatterjee at Addenbrookes. Do you mind me asking how you went about seeing this endo re genetic testing?
Professor Wass in Oxford apparently takes private referrals via a GP. i don't know whether this might be an option for you. I was pm'd by someone on here who has had him as her endo for 20 years and really rates him.
You might be able to pose your question about the legalities side of taking in a solicitor by asking via this site: justanswer.co.uk/sip/justan...
I can't vouch for them but I consulted a vet there years ago. From memory I think you just pay if you are happy with the answer.
I always click my sound recorder on my phone at any appointments I attend. It's good to have a record of the conversation.
I contacted one of the reasuerchers directly when I first found out about resistance to thyroid alpha which I presume is why you want your brother seen. Thye was an offer to work with the peaditrican from hell to get my child tested but she would not play ball and involved another endo whom she claimed falsley was also involved in the reasurch who declared my childs blood results perfectly normal.Which they were not.I decided to get him privately tested and had saved for six months to pay for this at a lab in exeter but the price went upso I contacted the reasurch team agin to ask if they knew of anyhwere else I could get it tested and they offerred to see him as part of thier reasurch if my GP refferred. This has been done and I am just anxious not knowing much about genetics incase he does not have the right genes for this to enable treatment and I have to battle else where.
Ithink him having dyspraxia was an important factor in him being seen as were hisblood results and glaring thyroid symptoms. Although he has a lotof the markers such as large head and there are a lot of makers in my family such as skin tags galoure, possible genes that lead to early oestoearthristis and obesity connected.There should be short legs. No body in my family has long legs. We have shortish legs and long bodys but the genome normally leaves people very short. My child does not have severe leaning difficaultlys and high avergae IQ although he has gone down hill. But people in my family oftenhave very high and sometime superior IQ some maybe some balancing out. I am not sure and wont be untill I see the team how well he fits.
I will look up this professor Wass on 'I want great care' to see reviews. Just need back up plan.
It might be worth you contacting the Professor Kattergee yourself and it might help to get brother diagnosed with dyspraxia if he has not already been so.
You don't have endocrinologists in Bristol worth seeing. In fact none of them is specialising in thyroid related issues there.
Look further afield i.e. London.
Yes I am aware.
There are lots of doctors who will treat a symptomatic adult with low tsh these days but none will touch a child even with private care. I will keep looking.
Hi Mamdyjane it sounds like you have had a really tough time, is your son on thyroid medication? My daughter was diagnosed 2 years ago withM. E/CFS which there is mi tmt for. She had numerous throat, sinus and ear infections and I had asked GP's to refer her to an ENT specialist on numerous occasions and they refused and said there was no point. She was admitted to A and E with sepsis and treated with antibiotic IV, Only through bei g admitted to hospital did she get to be referred to a ENT and is now soon having tonsillectomy and adenoids removed. I don't think GPs look back through their notes Ask for your sons medical records its free, we found things and visits we had forgotten and counted 14 infections. You can also contact CCG if you are unhappy and you also can ask to see a particular specialist even one that isn't closest to you. How old is your son? I have had to be very proactive on behalf of my daughter. With my daughter I think GP's were a bit dismissive because they thought everytime anything was wrong with her it was her M. E symptoms and got fobbed off.
If you decide to take that route, rather than take a solicitor in, tell dr you are recording the appt, it is your right, i do it, they are not keen but cant refuse (well they can refuse the appt and ask you to leave on tape) my first endo told huge fibs when i took her to ombudsman so her word against mine but i got apology and my complaint upheld. So i now record all my appts in case i ever need to refer back to it, i tell them my memory not good and i want to make sure i understand everything, iv never been refused.
That way you have recording should you need to see solicitor, I agree with hollyberry that dr could refuse solicitor being present but cant refuse you recording appt as long as you say up front 'you dont mind if i record appt i case i dont understand something and need to refer back to it'
I would also consider changing dr to one more agreeable. x
I chnaged dr a while ago lunatic that she was.I might well try that recording thing.
I have found recording each appt they are more careful what they say, i dont get the flippant, dismissive answers like i use to, altho they still try to justify not doing something by saying they dont think relevant or necessary, i make a point of leaning into my phone and repeating...just so we are clear, you dont think it necessary, i do and i am asking you to take my concerns seriously and follow up, this is my health you are dismissing... tbh it is hard work but i have had to fight every step of the way x
My mother had similar problems with me and that was 60 odd years ago. You just have to keep fighting. Best of luck.
Thank you Elwins. Planning to keep up the good fight.
I live in Bristol also. I was ok as a child but have had problems in my 30's but that was in a different area. I would change surgeries if that is possible. I don't think for one minute the GP will allow a Solicitor to go into an appointment. I also do not think a Solicitor would advise it.
You are entitled to by law, ask for a referral to see a Endo. As a child I never had any problems. (been on meds all of my life)
I have also put an official complaint at the hospital, it did not get me very far in terms of apology but I am still on the medication I was going to be refused or taken off.
What have you been told so far and what has your child been tested for exactly - there are so many conditions with similar symptoms. What tests have been done also?
You need to get all the information you can. Have you got any results.
Take care 
I have no problem with my GP and wouldn't dream or need to take a solicter to appointment with me to see him but if my child needs another refferal to endo or peaditrician I am contemplating how I can get the best service. I realise lots of conditons with similar symptoms but I am confident this is thyroid and one of the problems with the previous peaditician was her refusal to take all the blood appropriate to rule out everything else out. Unable to remmber blood results exactly but along the lines of normal TSh of 2.5, low T4 bottom of range and high T3. His symptoms are cold, constant fatigue, huge weight gains, pains in his legs, constipation, poor memory, loss of eyebrows, big round face, no apetite, acne at age 10 and increasing learning difficaultys.
His bloods and symptoms are consistant with thyroid resistance which he should get good treatment for, if a genetic marker is found.
Has he been examined for Cushings also?
Nobut he should be. I noticed funny streach marks on his legs a couple of days ago. I will look up symptoms and talk to GP.
So sorry to hear your story mandyjane, but so not surprised by what you have said mandyjane, you are not alone on this one. We know personally these cover ups go on, we came to realize a particulate medic had very poor knowledge on low thyroid, which is scary. Another Doctor in a different department was extremely worried about the child's presenting symptoms, they wrote emails out to higher up Medics, whilst we were sat there and insisted the child got a higher up second opinions, it just went round in a big circle and got the parents and child nowhere.
Go for a free half hour session with (a family law) solicitor, my Daughter was so pleased they did, it gave them courage to fight back and not sit back quietly. The more you shout and ask them more bamboozling medical questions the better. Childs parents were worried they were going to 'medically kidnap' their child (for 6 weeks in a hospital ward they were threatened with, can you believe ?) to check their child for supposedly 'over feeding'.
Eventually a brilliant Doctor asked if parents wanted a printout of their child's blood tests from a top childrens hospital, many years too late, (which seemed to have been overlooked by these new medics,) parents then had solid proof of 'borderline thyroid' written down on official notes.
Social Services had also been cruelly called in by medics, which made it far worse for the parents, having to face lots of horrible 'parent blaming meetings' and even pushing Mum for a mental test over and over (again can you believe ?) but after a very long upsetting period for the parents and the child, the SS saw sense and dropped the case and informed parents they had told the medic involved NOT to use SS as a go between. All very scary at the time for those innocent of the 'supposed' crime. The child hates hospitals and seeing Doctors now. Many in our family now no longer trust in Doctors and can you blame us ?
Yes these people can be very controlling and sometimes dangerously wrong, leaving many still ill, as many of us have found out for ourselves. Adults are able to get second opinions, but for children medics can easily take over or take away parental rights.
First mandyjane I am very sorry you have a little baby who is hypothyroid and who doesn't seem to have had optimum care from the medical profession. The worry of parents is very exhausting to try and get an answer.
I am not able to advise but I can appreciate your worry and hope a member who has had a similar situation will respond.
Thank you Shaws and good to hear from you. I was worried you might have disappeared. I think I am over worrying about the boy due to a bad week with him bless. Hopefully he willbe found to have genetic markers.
I have regrets too with regards to my daughter who was forever having problems as a child and up/down to GP : tonsils out etc. The result of the GP telling me off for 'putting ideas into her head' (10 years old) was stating to him that my sister had Rheumatoid Arthritis. He didn't take any blood tests and neither did hospitals.
The result: she is severely disabled and wheelchair bound. Thankfully she has a great husband and she came to terms with not being able to conceive. That was a bigger blow.
So we mothers try our best but we need sympathetic doctors who take family backgrounds into consideration. We do expect them to have some knowledge of common conditions and not blame us for being concerned and fussy as our instinct alerts us and we want answers as to why our child is suffering.
How tragic Shaws. Thye are so wrong and it is not just mistakes they make, everybody does that it is the arrogance that stops them learning and listening that is so damaging to us all.
did you see 'britains best jnr drs' on tv last week, final this week. Thyroid was diagnosed 3 times, once wrong it was sleep apnea, once hypo and once hyper. However that was just talking to patient, as we know next step tsh and the old 'no your ok everything is normal, here are some antidepressants'
Not ONE medical personnel diagnosed me at all but did give me diagnoses which I didn't have. Never got money refunded. I tested for hypo after a first aider commented that I should have thyroid gland checked. I did and TSH was 100 by then. You can guess I was feeling awful by then.
It is appalling the lack of knowledge shown by Dr's. I am an engineer, I would be ashamed if I was as useless as most the Dr's iv met and I would certainly not get any work. They seem able to just coast by in nhs regardless of ability. I suspect all the good ones are either in private practice or abroad.
One of our 'good' doctors was pursued because he diagnosed and treated people who were referred to him by other doctors/specialists as they were puzzled as their patients had 'mysterious diseases'. He was a virologist and found that they were hypo and treated them thus. He prescribed what they needed, i.e. NDT or T3 added to T4 or levo and for that he was pursued relentlessly and appeared before the GMC several times. He died prematurely.
Since then, about three years ago, his beloved staff have collated all of their scientific notes and are hoping to publish now but, of course, they need funding to do so. I do hope they are able to as Dr Skinner's evidence will be an eye-opener and he stated that due to guidelines patients are put in a 'parlous situation'. It was he who saved at least one woman's life who was about to commit suicide after having her thyroid gland removed. Doctors have no idea of the suffering but forget we are human beings who need optimum hormones and are not robots. Lorraine got the name of Dr Skinner who also consulted in Glasgow as well as Birmingham.
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