Who is responsible for diagnosing

My wife's history of Thyroid Test Results show her TSH levels in 2007 as 1.3, 2008 1.3, 2009 1.3 and early 2010 as 1.5 the range being 0.35 - 5.0. During this time her T4 hovered around 17 and the range being 9 - 21. She was well and displayed no signs or symptoms of thyroid disorder. However from late 2010 her TSH started to decrease from 0.9 to 0.7 in Feb 2014 and her T4 decreased to around14. In 2010 after a particularly stressful period at work she took early retirement. In early 2011 her father died. In late 2011 she started to complain of anxiety, dizziness, palpitations and tremor. Her TSH and T4 were not tested until March 2012 and were at that time 0.7 and 13.6 respectively. Of course as they were within range the GP concluded the result as normal. Her condition and symptoms continued to deteriorate until Oct 2014 when she was diagnosed with Alzheimer's Disease (now being disputed). The diagnosing psychiatrist referred to a thyroid test from Feb 2014, some 8 months previously (TSH 0.82 and T4 13 respectively) and concluded again as being within range and normal and therefore eliminated thyroid disorder. In May 2015 after suffering from a frightening episode of delirium she was admitted to our local cornorary care unit with Atrial Fibrillation and thyrotoxicosis later diagnosed as Graves Disease. I am now of the opinion that her thyroid disorder was missed and I am now challenging the diagnosis of Alzheimer's Disease. Does any member have any knowledge as who would or should have exploroed the possibility of thyroid disorder and to what extent should they go. I managed to obtain her medical history and I believe her optimum levels are 1.3 and 17 and had some medical professional took the time they would have seen that for themself and perhaps taken a different approach to my wife's health and well being

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  • Has your wife's vitamin B12, iron and folate been measured recently? If not, then get them done urgently. Low B12 can give symptoms similar to dementia. And B12, folate and iron are essential to each other. It is unlikely that iron will have been tested but ferritin (iron stores) may have been tested instead.

    It would also be helpful if Vitamin D could be measured as well.

    The numbers you give for TSH and Free T4 would not indicate thyrotoxicosis was in the offing. If anything, decreasing levels of Free T4 could indicate that hypothyroidism might happen in the future - but that future could be years away. Thyrotoxicosis is caused by an excess of thyroid hormone not a deficiency. The TSH is normal, and the Free T4 never gets terribly low or terribly high.

    You really need to get a full set of thyroid function test results. Getting such tests done by the NHS is difficult, but in view of what happened to your wife they should have been done by the hospital.

    TSH

    Free T4

    Free T3

    Thyroid antibodies - TPOAb, TgAB, TRAb

    See the following link for more info on antibodies :

    labtestsonline.org.uk/under...

    As well as the thyroid function tests, the vitamins and minerals I mentioned earlier need to be tested too. Hypothyroidism lowers vitamins and minerals due to low stomach acid and poor digestion, and hyperthyroidism lowers vitamins and minerals because the body uses them up too fast.

    As to your original question... Who is at fault for not diagnosing earlier... I don't think you will find anyone to be "at fault" according to the way that the NHS treats thyroid disease and performs thyroid testing. The doctors involved did the tests that the NHS considers to be adequate.

    In order to have found your wife's problems earlier it would have been necessary to have done a Free T3 test and thyroid antibody testing too. Free T3 testing is considered to be "specialist" and wouldn't be requested by GPs, only hospital consultants. With thyroid antibody testing, the NHS usually only tests TPO antibodies and not the others. TgAb might be tested if thyroid cancer is suspected, and TRab would only be tested when Grave's Disease is suspected. I think any complaints you make are likely to be dismissed. NHS complaints usually are. The problem is with the poor standards and guidelines in thyroid treatment. But if the doctor sticks to the guidelines (no matter how useless they are), then s/he won't be found to be in the wrong.

    If you want to get your own tests done privately, it can be done without the permission of a doctor being required. See this page for more info. If you are interested, ask for more advice.

    thyroiduk.org.uk/tuk/testin...

  • I appreciate the response but a bit confused by some of the terminology used by different people referring to to blood results. From my post and her history her TSH levels were on a downward trend which to my knowledge is heading towards hyperthyroidism or at least possibly subclinical hperthyroidism. I would agree that her symptoms could be hypo but my issue is that this also appears not to have been considered. Personally I dont care how it is labelled but what is not in doubt is she ended up seriously ill and diagnosed Graves. As we had no indication of thyroid disorder I have since done some research and had Blue Horizon tests Oct and Nov 2015 bothy of which indicated high serum folate at >45.4 and range of 10.4 - 42.4, B12 ok at 577. I also had a cortisole test done which they (BH) indicated a possible adrenal deficieny but endo dismissed this and carried out a synathen test which was found to be normal (dont have figures). I know what the NHS is like and therefore trying to use their official tests only. My issue is that her AD diagnosis was based on a time when she was all over the place with the use of anti-depressants and beta blockers By the way are you aware there is a warning on the patient information leaflet that you should consult your GP if you suffer from thyroid disorder before using beta blockers. Who would know to do that? I contacted the manufactures (Actavis) who advise that the use of Propanolol can mask the symptoms of thyrotoxicosis. I just feel that, as we all know there is a vast ignorance of thyroid disorder among medics and there should be some better more robust way of evaluating other than looking at a blood test in isolation and who would be responsible for this GP, Endo or Psychiatrist?

  • Yes, Jim you are very correct - there is a vast ignorance in the detection and treatment of thyroid gland dysfunctions.

    It's fine if your bloods are way out, but 'within' it's practically impossible.

    We would expect Endocrinologists to be au fait with all of the clinical symptoms like they used to be before the introduction of blood tests and levo but it seems so easy to them, take blood look at results and diagnose. Nevermind that they've taken no notice whatsoever of the symptoms (ignorant about them) so the poor sick patient goes from pillar to post being diagnosed and medicated for this that and the other. Never given their desperate need for thyroid hormones which runs our whole body. It's just not like a broken wrist etc.

    Best wishes to you and your wife as your journey continues and she'll turn the corner now.

    I myself had 'diagnoses' but it was pure ignorance by the medics that didn't even take a blood test over the 4 to 5 years.Being given various 'exams' and an op. Discharged by the A&E cardiology dept as 'probably viral with high cholesterol'. My TSH was 100 and I had only been given a suggestion by a first aider a few days before the A&E. My GP phoned 2 hours after blood test and asked who gave me the form and I said 'I did'. She said come and get prescript immediate. I was bedridden but thankfully, husband like yourself, had to get it for me. I am well now thanks to Thyroiduk and 'other' doctors I saw.

  • Whant an encouraging reply. Thank you and stay well

  • I am not sure in this link will be helpful and I'm sorry your wife is undergoing and you too, a very stressful time. You will be amazed to know the amount of people who remain undiagnosed due to the TSH alone. Previously, doctors diagnosed on clinical symptoms alone but now all depends on the blood tests.

    thyroiduk.org.uk/tuk/testin...

    Other members have also made good suggestions.

  • Again thank you for the link. I have seen this before and when taken in comparison with official documentation, find it confusing. Again, depending on who or which organisation you refer to for authority, they will provide differing opinions which I find most unhelpful. I appreciate the work Thyroid UK are doing to get this sorted but so far it seems to fall on deaf ears and the establishment of the BMA, BTA and Soc of Endo seem to be of a different stance. Whether we like it or not this is who will have the oficial right for treatment until such time it gets changed. That doesnt mean they are right and like all medics mistakes can be made but do they just accept the opinion and judgement of their colleagues or should they investigate for themself if they are to diagnose? If it was me I would be looking to investigate a far as I could and not rely on previous information but then I am not a medic!

  • The main problem JimA, is not who is right or wrong. It is the fact that Big Pharma pulled out all the stops when introducing levothyroxine as the perfect 'product'. Making False Statements about NDT which has been successfully used since 1892 and being believed. They also provided monetary incentives to doctors to prescribe their product in the USA. Big Pharma has made millions of $s through the blood tests introduced at the same time as levo. It wouldn't suit them if we were allowed to switch to whatever makes the patient well.

    Nowadays most doctors, BTA, RCoP, Endos go along with the promotion. Left behind are those of us on this forum who remain undiagnosed due to the TSH not being in the 'correct' place. Ignoring all of our clinical symptoms and prescribed 'other' meds for the symptom instead of the thyroid hormones we desperately need. Being given too low a dose in order to keep the TSH 'in range'.

    Doctors pre 60's medicated, even on a trial basis, according to our clinical symptoms which were well known for more than 100 years and given a trial of NDT.

    We will never know the number of people who've developed other more serious illnesses, either through too low a dose or undiagnosed.i.e. heart disease or cancer or anything else. Not to forget suicides or the many people incarcerated due to 'mental' illnesses. The list is long. What about being unable to work, sacked because we aren't diagnosed with anything but incapable of fulltime work through fatigue etc and feeling so unwell. By the way as far as I know there was no Chronic Fatigue, M.E. or Fibromyalgia before the introduction of Levothyroxine. They may well not have been hypo but deficient in some thyroid hormone, particularly T3 which NDT would have provided.

    Many members' consultations with Endos and doctors have been derisory to the patients.

    Thyroiduk.org have come on leaps and bounds, believe it or not, since it's inception in Lyn Mynott's front room and all of the people who helped voluntary one way or another and to raise funds.

    This site has been a great success and more members are joining as they are not getting - either diagnosed - but clinically have symptoms. Patients being denied an alternative if not improving on levo (I'm one of them but T3 was added and made a huge difference).

    We've nearly 40,000 members = maybe small against those with hypothyroidism etc. but it is still huge if you stand them side by side.

    Some doctors conscientiously do their work to alleviate patients' ills but many are prevented from alternatives as they will appear before the GMC like quite a few doctors, trained in the 50's. have had to do despite them assisting their patients to get well and lost their licence.

    The 'modern' method in the American Thyroid's Association's Conference a couple of years ago one Endo said that patients who were dissatisfied with levothyroxine but had a TSH 'in rang'e were actually suffering from a Somatization Disorder! So what of all the Endos worldwide who read or heard the topic - who would they believe - The Expert or the poor, sick, fragile patient desperately hoping against hope the doctor can pull something out of the bag - what happens? probably sent of with a prescript for an Anti-d plus a reprimand for wasting time.

    :) :)

  • Firstly I have to apologise. It was remiss of me not to mention that my wife has now had radioactiveiodine treatment 8 weeks ago and yesterday started on 50mg of Levo. In anticipation of her being Hypo I bought Thyroid 1000 Tablets from Thailand as I know members have concern regarding Levo. Can you use both of these at the same time? If using NDT only can you overdose on this? I dont have much faith in the NHS at this time but obviously dont want to cause her more harm through my ignorance

  • If you mean Thiroyd, yes, you most definately can over-dose on it. Especially if you're taking it at the same time as Levo. Levo is T4. NDT (Thiroyd and many others) is T4 and T3, basically. You would be giving her a double dose of T4.

    I cannot see why you would want to take both at the same time. Especially in the beginning. You have to start low and increase slowly with hormones. Levo might be all she needs. The vast majority of people do very well on levo alone, but they Don't need to come onto forums. So, all you'll hear on here is people moaning about Levo.

    I Don't mean to be rude, but I think you need to learn a lot more about it before you start 'self'-treating your wife.

  • Thank you. I was not intending to self treat without advice hence my queries and really do appreciate your response. It is however a really confusing situation which is not helped by the stance of theestablished medical profession Furthermore some of the advice you see on this site and others doesn't help hence the reason why, in anticipation I had bought Thyroyd, It is tough to watch your loved one suffering but in meantime will follow advice from medics. Thank you

  • Well, that's good to know, anyway. :)

    Yes, it is confusing in the beginning, but you'll be surprised how quickly you get the hang of it. We've all had to do it with brain-fog, so it should be a cinch for you!

    I'm not sure I've ever seen conflicting advice on here. But, you have to take into consideration that most advice is given to suit the particular case. There is no size-fits-all. But if you see something that confuses you, just ask! There will always be someone here to explain to you.

    I can imagine how difficult it must be for you to Watch your wife's suffering. But, at least she's got you looking out for her, now. So, she's really one step ahead! As for doctors, they really Don't understand what they're doing. We all know that. You can argue with them if you like, but it's a waste of time - they've forgotten how to listen. That's why we're all here - to look after ourselves - and each other.

    Take care.

  • Apreciated - thanks

  • :)

  • I believe greygoose has given good advice. Start on levo as doctors' suggested. It should be taken first thing on an empty stomach with a glass of water.

    Wait approx an hour before food. Some prefer night-time dosing so as long is stomach is empty (about 2 to 2.5 hours after protein) you dose the same way.

    If having a blood test it should be the earliest possible and fast - water can be taken. Leave 24 hours approx between dose of levo and the test (you miss night dose and it can be taken after test if you wish) and take a.m. dose as usual after blood test.

    The dose will be gradually increased every six weeks and always get a print-out with the ranges and you can post for comments. Give levo a good chance but I think most TTs benefit with the addition of T3 to the T4. Some convert T4 perfectly to T3 so it's a wait and see I'm afraid.

    At least you've got some NDT at hand anyway..

    It is a slow process to get to an optimum but your wife should gradually begin to improve and symptoms diminish and I hope this is the case.

  • This makes some sense to me after all and I really appreciate that. Thank you

  • Jim, I am sure you have explored a great deal of literature and resources searching for clues.

    From your explanation, the underlying problem appears to be an autoimmune condition which has recently been manifested with graves and the possibility of Alzheimer's.

    The immediate question that jumps to mind whether your wife has been tested for coeliac.

    If not, there is an urgent need to arrange for this to be investigated.

    I hope this helps!

  • I am not aware of her being tested for this and will look into it. Thank you

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