MISDIAGNOSIS

I am sorry I am reading this yet again ..lack of understanding of the THYROID in this day and age ..

I will be 80 years old next year and understand the Fight women have to be heard and understand all about this problem .

.I met Diana Holmes years ago when her first book was published regarding her fight and the misdiagnoses time after time with her thyroid .... ...is anyone out THERE still listening? ..Have we moved ?on NO NO NO !!!! it would seem not ..it is with a heavy heart and great sadness I read the stories of women out there in the world ......

.Remember endocrinologist Dr Skinner (UK) and his fight for us women and how he was hounded for his believes about the thyroid problem and methods of treatment ..about the perimeter scales for this problem .. Read the Book "Tears behind closed Doors"by Diana Homes ...

Dr Skinner died through stress and his fight for us a young man by today standards .he was hauled before the G M C and twice they tried to strike him off for practicing and helping other women a very good wonderful knowledgeable man whom I went to

.

Lack of understanding when will it end? and there be more doctors and more specialists to learn this and be become more savvy on this subject ?? I really do not know as it does not move on at all.

I Pray for all suffering women as it is seen in many MOON faces and puffy eyes that you develop,plus all other side effects that go with it ...I know only to well .......God Bless you ...Margaret Gaskell .

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  • Unfortunately, Wall, things haven't changed at all regarding the diagnosis and treatment of hypothyroidism. In fact, I it has got worse as most of the doctors who trained like Dr Skinner have died or retired. Nowadays, clinical symptoms are rarely used (if indeed they are known at all) and the suffering continues or other medical conditions develop. Medical students are not trained in clinical symptoms and have no knowledge except to diagnose by blood tests. I personally believe it has got worse as one 'specialist' has decreed that we are to be diagnosed with a Somatization Disorder if we still complain about our symptoms and/or are dissatisfied with levothyroxine. Explanation of the disorder:

    'Somatization disorder is a long-term (chronic) condition in which a person has physical symptoms that involve more than one part of the body, but no physical cause can be found. The pain and other symptoms people with this disorder feel are real, and are not created or faked on purpose (malingering)'

    Dr Skinner is a great loss as he had the integrity/stubborness to not give up although it cost him dearly.

    I have read Diana Holmes' book on her journey to health with Dr Peatfield and of her assistance to Dr Skinner which was very helpful to me.

    Things have moved slowly but with forums like this it is a great way to educate and help others to health. I have recovered mine through Thyroiduk.org and Dr S plus lots of reading.

    Thyroiduk had a great Conference, fittingly in Birmingham, in October with excellent speakers so although it is 'slow' we have learned a lot and many have got better despite the guidelines which are promoted by the NHS, who also make False Statements about the use of other thyroid hormones.

    Best wishes

  • Well said . Thousands of us share your sentiments. Please, do read ---- Why Doesn’t My Endocrinologist Know All of This? --- Kent Holtorf M.D. National Academy of Hypothyroidism - nahypothyroidism.org ---- I believe this explains ‘all & everything’

    The following are just a few extracts

    Dr. Lenfant discusses the fact that the proper practice of medicine involves the combination of medical knowledge, intuition and judgement and that physicians’ knowledge is lacking because they don’t keep up with the medical literature. He states that there is often a difference of opinion among physicians and reviewing entities, but that judgement and knowledge of the research pertaining to the patient’s condition is central to the responsible practice of medicine. “Enormous amounts of new knowledge are barrelling down the information highway, but they are not arriving at the doorsteps of our patients. (9).”

    William Shankle, M.D., stated,---- “Most doctors are practicing 10 to 20 years behind theavailable medical literature and continue to practice what they learned in medical school…. (10).”

    Sidney Smith, M.D.,a former president of the American Heart Association,----- is very critical of physicians for not seeking out available information and applying that information to their patients, arguing that doctors feel the best medicine is what they’ve been doing and thinking for years.

    He goes on to say ----They discount new research, because it is not what they have been taught or practiced, and they refuse to admit that what they have been doing or thinking for many years is not the best medicine. ------ “A large part of the problem is the real resistance of physicians------ many of these independent-minded souls don’t like being told that science knows best, and the way they’ve always done things is second-rate (12).”

  • It all sounds so complicating to me. Your all so much cleverer than me, and because I feel unwell, I've got to admit I'm worried. I go on these sites to try to help myself, but I've got to admit all this Thyroid,blood tests,and medication just boggles me.

  • Don't worry as you will slowly learn about what tests mean because the doctors aren't trained so well and if we want to get better we have to 'do it ourselves' unfortunately.

    If you are feeling unwell and have had a recent blood test, ask the surgery for a print-out (some may charge a nominal sum for ink/paper) Make sure the ranges are shown as, just to complicate things, labs have different ranges.

    Post them on a new question and members will comment on them.

    When you have a blood test for the thyroid gland have it as early as possible and do not take levothyroxine before it, take it afterwards. If you have breakfast you have to have two hours gap between it and taking levo and don't eat for two hours afterwards. If GP hasn't tested your Vitamin B12, Vit d, iron, ferritin and folate ask for these to be done as we are usually deficient.

  • Just like to say thank you shows. I'll remember that.

  • God Bless you,and thank you !!!Margaret xx

  • Hi Wall,I am now 71yrs old,and suffer chronic IBS for about 13yrs. About ten years ago a friend gave me Dianna Homes book to read, she thought it may help me with my Tum,so I went and seen my GP ( who at the time was really good to me ) to ask for a thyroid test, to which he agreed and also said he would do the test every 6mths. It came back clear,so I thought that was something else I could cross off. 3yrs ago I had a heart attack I was put on Amidrone for about 6mths,it was then changed to a Beta blocker. My heart nurse recommended a good Gastrologist to me for my IBS. I did get to see him more blood tests. I then had a phone call off an Endocrinologist who told me to go straight to my GP to pick up a prescription for an Underactive Thyroid as it was Quite urgent the Amidrone he told me was the cause. I now take 100mg of Levothyroxine. Someone kindly picked me up on the IBS site and told me to get a copy of my blood tests and to put them on this site for another oppinion. At the moment I don't seem to be getting anywhere because I really don't understand an Underactive Thyroid or the blood tests. I do have other illnesses including Rheumatoid Athritis which seems as though it all links in. I just wish I could understand it like you and most people on this site. Sorry to have gone on so long but it's a long story,and I'm so desperate. It was only this morning I said to my husband instead of the careing sick people need in this country in the year 2014 it's like we've gone back to 1950s. If you have read all my post thank you.

  • Hello Gemini71

    I have read all of your post dear, yes you have my sympathy ..it is a very frustrating thing ..as I pointed out it needs more attention but somehow they (medics) do not wish to address this ..it is complicated without dought and we are all different as to how we are effected but this problem ,but they need to link up symptoms of which there are many and put 2/2 together.stop giving out pills and guessing what is wrong....of cause it all takes time and MONEY so yes backwards is about right ...

    We do not understand all of it on this site but try to help each other with the misery of suffering it brings,with suggestions ...I take thyroxine 100/150 alternately and VitC and an anti-inflamatory tablet as when i feel I need it, as they are bad for the kidneys !.

    I suffer fibrillation's and refused to take Warfrin my choice, I read about it and was not happy and made my mind up NO. .

    .I have diverticulitis pockets in the bowl that get inflamed and not nice very it can be excruciatingly painful ..

    .I can go on but better not .....Take Care of yourself keep up the fight to be listened to, it is your health your life ! Bless you Margaret xx

  • Thank you so much for reading my post Margret,You sound like you've got a lot of my similar problems,only difference being you sound more positive than me. I do keep persisting with GP,consultants,and so on,but with Thyroid problem it totally baffles me so I don't understand it well enough to put up a fight. I also have Emphesema, but with that and the RA which if I don't take the tablets for,I'm in severe pain.The problems I've had over the years is Haveing to much faith in doctors so consequently I'm takeing meds which I'm struggling to come off. Just like antidepressants like I saw in your later post. It's took me a long time to learn to take my own health into my hands. But the Thyroid is beyond me. Oh and Margret as for my life I don't feel I have one,and you know why that is,( a silly thing called IBS ) Good health to you and God bless. Norma x

  • Dear Norma ,yes well I have bowl problems I have said I think,i n one post divaticlus pain is unbearable when a bout comes on ..I know yours if different but I understand your despair as that how it feels ..but you know we do have to try to keep going ....My problem was diagnosed, I must have had it 3 years and had many things checked and eventually an MRI which we paid for ..well I have paid for most of my consultants have been private it was the only way without waiting ..I do have friend with your problem and she has had it years.ISB..try to be strong I know what you mean also when you say no life ..well I do not go out shopping to often because of walking my husband does most ..on a good day I do try to get out as I did today I made it to the canal cafe home cooked food for lunch and a lovely shop for greens/meats and things they sell ..and also to a place near by that sells wooden items he makes from trees so I got out in the sun ..and got wooden sculptures for Christmas gifts ...But get someone to explain about thyroid or buy a book to refer to ..do not give up though days you feel like it ....Good Luck ..Margaret x

  • Thank you Margret for your kind replies, That beats all the pills and potions in the world. God bless NORMA

  • Ah bless you !!it is nice to understand you are not alone with misery ...but!! be cheerful as you can .

    I always try to think well there is always someone worse off than me (not much consolation) but "Positive" thinking is best Love Margaret xxxxxxxxxxxx

    Chin UP !!!

  • Once we have one autoimmune condition, we are apt to get more. At present I have three. I would think quite a few members have more than 1.

  • Hi Shaws, are we talking like,RA,Osteoporosis,Underactive Thyroid. And I don't know if you would call IBS one. I've also got Emphesema,and a dicky Heart, don't know what it is because by then I didn't want to know. But as Margret says Hey Ho, try and keep smiling.

  • Yes, you maybe first in the running for autoimmune conditions.

  • Hi Shaws, are we talking like,RA,Osteoporosis,Underactive Thyroid. And I don't know if you would call IBS one. I've also got Emphesema,and a dicky Heart, don't know what it is because by then I didn't want to know. But as Margret says Hey Ho, try and keep smiling.

  • The somatization thing, what is the point of that? Is it saying we are imagining our continuing symptoms, is there any advantage to getting this dx?

  • if you know you are not right you have to get a doctor to listen to you ..you know your body and none of us want to be ill do we? ...feeling well is a wonderful thing ......do not give up !!!!!POSITVE thinking ....

  • There is no advantage in getting a diagnosis of somatization disorder at all. In fact, getting such a diagnosis would probably make it almost impossible for you to get anything diagnosed ever again, so it should be avoided at all costs. Somatization disorder is basically a way of saying to patients "All your symptoms are in your head, now go away and stop wasting our time."

  • Did you see the video (voice only) in which this was stated to a larger conference of Endocrinologists. They have the excuse now.

  • If you're referring to Weetman's talk, yes I did. :(

  • My heart sank when I listened to it. Another nail in the coffin.

  • What do you think is his problem? He definately has one. It sounds as if he really hates all hypos and is doing all he possibly can to undermine them and stop them getting treatment.

    Do you think he was traumatised by a hypo when he was a baby?

    I don't know, but there's something that doesn't quite add up there... Is he being paid hug sums by Big Pharma, do you think?

    Did I say before (hypo memory kicking out here) that I wrote to him and suggested that as so many hypos had somatisization disorder that it must be a hypo symptom, and therefore patients should be treated on increasing doses of thyroid hormone replacement until it goes away.

    He just wrote back and said 'thank you for your opinion'. lol

  • I don't know about him being traumatised but we can imagine how many of his patients will be after a consultation, I should think.

    He is probably wonderful if your TSH is outside the range but thrown out if it is 'in range' and prescribed anti-depressants/pain relief.

    I have no doubt he has been paid well for his appearance and I assume the levothyroxine producer contributed very well to the coffers of the Conference.

    There would be no natural dessicated thyroid displays to be seen at the ATA conference I am sure.

  • The point of re-naming our clinical symptoms is that they don't need to bother one iota about prescribing thyroid hormones (not that they are expensive about £1.50 a month) they just close their ears and eyes and it is just arrogance in their belief that what they spout forth is the truth and what we, the patients know and feel, is all in our 'minds'. Never mind that he said that the first patient was 'cured' by levothyroxine ???? in 1892, I think not.

    They are so determined that the TSH is the ONLY way to diagnose us and so many people slip under the wire and develop other illnesses.

  • The 'somatization thing' was suggested for me when on T4 ( conversion problem) and having calcium crashes following TT. I had terrible muscle cramps including my mouth which has pushed my teeth together - had a gap in my front teeth for 56yrs which is now not there- and has altered my bite. Don't see how somatization caused that nor how anti-depressants, which is what was offered, would have helped!

  • No you do not want antidepressants !!...for heavens sake they take some getting off also and make you feel ill!...I believe it has effected your calcium level ..have they checked it ?....it effects so many things as the thyroid gland has so many functions and if one is not working it has a great effect on the body in many ways ...muscles /cramps /aches and pains/eyes / oh so many things ....

    ..Good Luck Margaret xx.

  • A little PS - a thyroid-savvy doctor I heard (can't remember his name) said he was appalled to realise that medical students are using the same book on thyroid as he did twenty years ago.

  • Hello Linda-57..so good to know there are some that are "savvy" doctors but why do they not say something ? yes there must be updated information as in lots of things ..as time moves on .. but a subject that seems to get looked over it seems .......

  • I had IBS symptoms (as well as many other) when my whole body was shutting down (or it felt like it). After being prescribed T3 (private doctor) all those symptoms went. Several years after my GP told me I must stop taking T3 (he was very concerned about suppressed TSH). Feeling so well I thought perhaps he is right and I no longer needed it, so I stopped as directed. Within a week the first symptom to come back was the IBS one, and within a month they were all back with a vengeance, plus a stone on but appetite decreased. I went back on the T3 and again the first improvement was normallity with bowels and then gradually other symptoms went although they did take a couple of months. Most of my symptoms, and I had many, were vague and I never felt cold. I had plantar fasciitis, frozen shoulders, bells palsy all about the same time so do not know whether they would be thyroid related, but my four big main debilitating, horrendous, life changing and distressing symptoms were pins and needles in my hands and arms that rubbing would make no difference, the IBS symptoms, the fatigue and tiredness that I would fall asleep in the middle of talking to someone. After 12 years of of all the endos and GPs being apoplectic over my 0.01 TSH and me taking T3 one bright spark of an endo decided he would prove to me that I do not need it. So he arranged for all the tests they should have been doing over the years (they moaned about me taking T3 yet none would do even a T3 test), and found my T3 to be below the range and it was agreed that I do need it. I often wonder what would have happened had I not have gone to the private doctor and had the T3 prescribed (later I decided to buy NDT as I was having to buy the T3). I was about 60 then, a diabetic at risk of heart attack. Maybe with my T3 so low and I daresay going lower, I would have had a heart attack, and they would put it down to the diabetes. I am now 75 and feel like I could go on forever.

  • Hi Lilian,I am pleased to hear you are doing okay ..no doctor has the same opinion!...you keep following your feeling yes it is a major gland for the body function !! surely you would you think they would take this into consideration? time and trouble it seems to me ... take care keep well...

    I understand all you say in your feed ....

    I have so many things wrong..thyroid type 2 diabetes (9 years controlled by diet )back problems ...diverticulitis .ha ha it is great fun !!!... but hey when you think 80 next year well ..I leave it to you to guess .. ..

    I keep fighting the good fight and do my best .......Bless you Margaret xx

  • Diet is definitely worth considering for autoimmune folk too.

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