You Have It! But you can't have it!!

I know I'm undiagnosed. I know I only discovered this website a day ago but already I am building up a picture of the frustration many felt before getting their diagnosis and treatment. I feel the same. I can see the despair of those who can't get the correct medicine prescribed and I can see those who had to go and seek private consultation, probably after contributing to the NHS for years! But this is what I find idiotic.

Medical science researches and based on their findings makes an extensive list of the kinds of symptoms that present when a person has a thyroid problem. The data is collected. The discovery is announced. Everyone working on the research must be thrilled at their findings. A medical breakthrough. Doctors up and down the land are told to watch out for the symptoms being reported by patients. Treatment is available! Science knows how to treat the disease. GP's can prescribe. Everything is in place everyone is ready!

Then the bubble bursts. Blood test says no. But doctor, I have fatigue, muscle aches and my hair is falling out! My feet ache. My joints are shot. Blood test says no. I feel so cold. I can't lose weight. Please treat me. Blood tests say no. My heart is racing. I can't stop sweating. I'm irritable. Blood test says no. Go away. The blood test says no.

So why compile a list? Why have scientific research? What came first the science or the blood test?

28 Replies

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  • I got my daily update of papers mentioning "thyroid" newly added to PubMed at 12:20 today.

    Since 13:56 the day before, another 26 such papers have accumulated. And that is not untypical of the rate at which paper are published.

    Things like the effect of smoking on thyroid disorder (some of them stunningly, amazingly original ideas like "A combination of levothyroxine and iron salt is better than each one alone." - yes, that is sarcasm by me, but they are right, it is true.)

    And "Current smoking lowers the risk of developing thyroid peroxidase and thyroglobulin antibodies, and subclinical and overt autoimmune hypothyroidism; the effect is dose-dependent, but disappears within 3 years after quitting smoking."

    But we have also seen recently the claim that it takes something like seventeen years for research to hit medical practice.

    Rod

  • Rod- Would this be another reason why people who give up smoking put on weight they cannot loose inspite of dieting and increasing exercise- this is what happened to me before diagnosis? This is what happened to me before I went to docs to ask for thyroid test.

  • Interesting to speculate on that being the case.

    The ability of smoking to reduce appetite is well-known - and reversal of that upon stopping might have its effect. But I am not convinced this is the actual mechanism of weight gain - I suspect it is more a factor which makes it more likely.

    Anyway, the paper I referred to is:

    Clin Endocrinol (Oxf). 2013 Apr 13. doi: 10.1111/cen.12222. [Epub ahead of print]

    Smoking And Thyroid.

    Wiersinga WM.

    Department of Endocrinology & Metabolism, Academic Medical Center, University of Amsterdam, Netherlands.

    ncbi.nlm.nih.gov/pubmed/235...

    Rod

  • I will have a read. Thanks.

  • Susie, Yes but....

    you're undiagnosed (like me) but are just plain ill and want to get better (despite any frustrations you read) - why are you going to the doctors after all - so many of us 'normal' people strangely wasting their (and our) time?... hmmmm.

    Did your GP already suspect you had a thyroid problem? Why? - symptoms matched? (I'm guessing) but he/she wasn't sure, didn't trust his/her judgement (too much at stake) - if he wasn't certain years ago you would be given Thyroid medication anyway, to see if it helped.

    But now - the norm is to send for a blood test. Computer says no (send for another - 5 in my case, no)- so GP can't argue with blood tests, otherwise he/she wouldn't dare to prescribe per symptoms. It's 'science' - if it's not in your blood - its not there ("but they're looking in the wrong place"!).

    OK we'll play the game - what are your blood test results? (ask for numbers and ranges)

    Ask to have related essential nutrients (minerals/vitamins) tested too like irons/ferritin, B12/folate and 'Vitamin' D [hormone] if they suggest another disease (e.g CFS/ME - 1 in 300) Thyroid problems are simply 1 in 20 and statistically more likely - if they want numbers that's the incidence. However, IMHO there's the little thing about having free prescriptions, 'for life' (but for life means to stay alive).

    As for medical research - how many GP are reading that (unless they suffer it too or have a special interest?) they rely on being told (CPD) by certain companies with certain interests, and Thyroid is old hat, so despite 'new' research for an 'age old' illness, just ain't gonna happen...... yet

    Meanwhile - keep getting clued up, perhaps the main TUK site can empower you more to fight your corner - I think you've got the idea! Good luck, Jane :D

    thyroiduk.org.uk/tuk/diagno...

  • TY Jane :-) have had blood tests that are all reported back as normal. To be fair I asked to be sent to a rheumatologist when my joints showed no bone problems (not even age expected arthritis) and GP was happy to do so, so might be happy to treat me for hypo.

    Rheumatologist carried out infection markers and looked for lupus, viral infections, anaemia and B12 deficiency. Blood tests said no. Docs are happy to prescribe strong painkillers like tramadol which is addictive, nsaids that cause stomach and heart problems and have also suggested low dose anti depressants. All which are good drugs but are prescribed to stop pain, not get to the bottom of the cause of the pain, lethargy etc.

    I know what I am writing is being said by a lot of people. I am sounding off but its because I am so weary and frightened that this is my lot for the rest of my life. If I have a brave GP perhaps I won't even have to ask to be sent to an endocrinologist and I think I'm going to request thyroxine, as it can't be nearly as harmful as all of the other drugs I am expected to take for pain relief. I can't wait for Monday whe I have my appointment.

  • You said the normal word.

    Is your TSH below 1? - is your FT4 in low range?

    Is you B12 above 500? Ferritin over 70 (I don't know your ranges, these are others') Vit D over 80? etc.

    I agree they throw loads of other meds at you, ignoring Levo which may actually help (85% of hypo sufferers find it does - but most are not on this site!) J :D

  • I see what you're saying, but these are risk factors. If you present at different times over the months and years with various symptoms and the symptoms then become cumulative and chronic and do not respond to individual treatments of these symptoms then the symptoms are strongly pointing towards under active thyroid, when does the penny drop with your GP? When I look at the number of times I have visited the gp over the years saying I have developed a symptom that is troubling me, I feel anger that something so obvious is dismissed because my TSH was 'normal'. I can't see the point of the medical profession listing symptoms, then dismissing them on the strength of a blood test. I said that my frozen shoulder was probably co-incidental and additional to the general joint problems I have, then with further research I see that frozen shoulder is typical of hypothyroidism, so my personal list of symptoms of hypo just got longer. I am anxious about daring to suggest to my GP that I have no faith in the avenues I have been sent along, this is why I feel beggered beyond belief when I read this site, that my practice hasn't latched on, when so many laypeople 'get it'.

  • Have you had your cholesterol checked? it is a known effect of insufficient thyroxine in the body. I didn't know about the frozen shoulder - I have had that and continue to do so at regular intervals. The more you search, the more it all adds up. I read somewhere that if you see a patient with 10 symptoms which COULD be caused by 10 different diseases, or just one, it's far more likely to be just the one. With 99% of illnesses doctors follow this logic. Why, oh why, then, does logic fly out of the window when they are confronted with a hypothyroid patient?

    In my own case it is even more logical, since I have had a total thyroidectomy, yet despite the glaringly obvious reason for being 'TATT', having high cholesterol, low blood pressure, cold, swollen tongue, hair falling out, weight piling on, he still sends me for hundreds of expensive tests rather than just increase my thyroxine until I feel well!

    When I saw him in December, he asked me if I was depressed, and I said of course I'm depressed, no-one listens to me and I'm getting sicker and sicker. His response? Which came first, the chicken or the egg? I decided to be a smartass and pointed out that if he can't use logic to work that out we might as well all go home. If the egg came first, it would have died of cold, because there would have been no chicken to incubate it. So the chicken had to come first. Logic. And I'm not ill because I'm depressed, I'm depressed because I'm ill.

    SusieC511, I do hope you get the diagnosis that you so badly need and the treatment to make you better. It is a minefield, but while doctors are so blind that even a patient without a thyroid gets diagnosed with 100 other diseases, it makes you wonder exactly what happened in the last 100 years, when both you and I would have been properly diagnosed and optimally treated then, but not now.

    What happened is 'science', or should I say 'blind faith' in science. My doctor kept telling me when I questioned the 'normal-normal-normal- normal' diagnosis - 'you can't argue with science'. Excuse me, doctor, but you can, and should, if the evidence demands it. If no-one had ever argued with science, we would still be saying the earth is flat. There is a Medical Mafia which terrifies doctors into toeing the party line when it comes to the thyroid. Step out of line and you will be hauled in from of the GMC. You don't get extra points for extra thyroxine. But you do for a diagnosis of depression, or putting a patient on statins, etc.

    Sorry for the rant - feeling a bit hypo this morning!

    Marie XXX

  • Right on the money Marie!!

    OOS

  • :D

  • they're conditioned to think they're there to spot something which will will kill you now.

    i.e. Something 'acute' not 'chronic'. They see loads of patients everyday and need the backup of of blood tests as otherwise they will be in trouble, but we have researched our own problem and find that the main (TSH) blood test is that of pituitary hormone for a start (my GP didn't know that!) and unreliable in Thyroid problems (but it's all they have - so they have been told! even if they ask for more such as FT4 often the labs won't do it - but a consultant can get additional tests).

    Ask for a trial (especially if your TSH is high) see page 88 of Dr Toft's Book - available at most chemists J :D

  • Dear spareribs - Even a consultant is not interested in getting additional tests. I had a private blood test done of TSH, T3, T4, vit D and antibodies. I had 4 times the maximum number of antibodies and was deficient in vit D. I took these results back to my GP, who had previously said my thyroid blood tests were normal, (as they only do the 'standard' ones). He was good enough to put me on 25 mg Levothyroxine and high dose vit D and referred me to an endocrinologist. I first saw the clinical assistant at the hospital, who did acknowledge that eventually this condition would develop into hypothyroidism but most doctors would prefer not to treat it. She also duly made a note of the list of symptoms I had ticked. A number of months later I had a follow-up appointment with the consultant herself, who said a 25 mg dose was not a dose at all 'so I probably did not need it'. I did not need to see the endo either to be told that: the info that this is a children's dose is clearly on the patients' leaflet. Needless to say I am still suffering in spite of trying different supplement regimes and a lot of personal research and having spent money on private consultations and tests for nothing. The hospital does not test for antibodies as 'you can have 10,000 times the amount of antibodies and have this for 16 years or longer, as long as the TSH is normal, it does not matter'. (quote the consultant).

  • belwom

    "eventually this condition would develop into hypothyroidism but most docs would prefer not to treat it".... why? (even if you have antibodies like me!)

    HAve you got the 'readily available' Dr Toft book? page 44 'sub-clinical, nip it in the bud... if the abnormality is found on more than one occasion'

    you GP was right, did to feel any better on a small dose? most folks don't, so I've read... did they take you off it?

    I asked the GP for an antibody test (TPO Ab)as I had a partial T, it was slightly raised - thats awful that the consultant said you probably don't need it.

    I'm sorry you are still suffering - keep fighting - we WILL get there - if you have already gone private with tests can you see a private Endo to take notice and help you? Jane :D x

  • thank you for this Jane - I'll look into the Dr Toft book. I didn't feel a lot better on the small dose and developed an itchy rash, which is why I would like to look into NDT or T3. Thank you again. Best wishes.

  • I have been seeing my homeopath for years who uses a Vega test machine which tests for any abnormalities in your system [she is classically trained ] I always see her prior to having tests in hospital so that I have an idea of what may be a problem. My thyroid always showed up on these tests as abnormal but having been taking T3 for a few months - on my last visit to her , there was no problem. What would the medical profession make of that !!! Ging

  • I've said it before - many, many times - and I'll say it again : Big Pharma. Big Pharma is leading the dance. They invented synthetic T4, they invented the TSH test to prove it worked. When there were still problems, many new 'diseases' were 'invented' to explain it. Big Pharma were quids in!

    Do you know they call us hypos 'cash cows'? Because so many pills and potions can be prescribed for us to treat our symptoms - not to mention the stuff we buy over-the-counter to try and feel well. Statins, diet pills, antacids, antidepressants, the list is endless.

    If we were all prescribed, on presentation of symptoms, the thyroid hormone replacement of our choice and became well, we wouldn't need all their poisonous junk, and they would lose a fortune!!!

    So, no, they aren't going to let that happen, not if they can help it. Just enough synthetic T4 to keep us alive - if we're lucky! - and keep us consuming. To a certain extent, they control what is taught in medical school, and no way are they going to let doctors learn to diagnose thyroid on symptoms! Too many sick people would be diagnosed. Doctors don't know all these symptoms. They are taught to say : it's nothing to do with your thyroid. But they really have no idea if it is or it isn't.

    Nothing is going to change until Big Pharma is brought to its knees and its domination over-thrown. Is that day close? I wonder... I wonder if they might not have over-played their hand with GM... It is a consummation devoutly to be wished!

    Hugs and good luck, Grey

  • Greygoose, you said it as it is, its led by corporate companies, nothing to do with getting us better.

    It's frightening that Dr,s are not allowed to think only toe the line. I don't know how this can be changed.

    I'm on all sorts of meds recently I've stopped some of them ie antidepressants and I feel no different, only positively thinking clearer which must be good. I havent told gp yet they think they're helping me being on them.

    I'm on 200mcg levo, still cold, mostly cold but then go boiling hot in seconds and sweating, gastric, shoulder, muscles weak pain, eyes, now heartbeat odd, and a host of other things.

    I'm so fed up not depressed, just want to feel better.

  • It seriously does my head in. I've never had any explanation of what caused _my_ hypothyroidism. Was it the virus that wiped me out years before i was diagnosed? Was it something else? I had symptoms years before the tests showed something. I have some symptoms now although I'm on levot. Docs refuse to discuss it cos the bloods come back 'ok'. But if there are different causes of hypo-t and there's lots of complex interlinked systems involved why oh why do they only concentrate on one tiny corner of the whole jigsaw? How can i get a more thorough diagnosis and treatment? Doc says lots of people being treated say they don't feel quite right...er...isn't that a bit of a clue?!</rant>

  • "Only one problem per consultation" it says in big bold capitals throughout my doctors waiting room. So how can this work? Our bodies are not made up of several components all working separately from one another like a b****y machine!

    Prior to diagnosis, I made an appointment because I had horrendous digestion problems, but when I mentioned I was having palpitations I was told there wasn't any connection to my digestion and that I should make another appointment to discuss it if I was worried. When I made an appointment to discuss the palpitations and mentioned that I was so tired all the time, I was told "well it is that time of year isn't it" (it was Autumn). When I made an appointment to discuss how generally ill and run down I felt and dared raise my voice because I was feeling worse and worse and was getting frustrated, I was told "see you are stressed and that's causing your IBS and was printed off yet another dietary sheet! For these reasons I never even mentioned my brain fog! There are only so many appointments slots in a week!

    My point is why do so very few doctors join the dots? I really think there obsession with "one problem per consultation" way of doing things does not help.

    Foreversummer

  • Galling behaviour foreversummer!

    I've encountered this 'number' regularly too.

    How about making the 'one' problem your body,mind spirit soul?

    Take in an illustrated anatomy and physiology book - they make them as big colouring books to help you learn - by numbers ( that has a familiar ring to it!)

    How about playing 'the knee bones connected to the thigh bone' on your phone?

    Apparently - the ancient Chinese only paid their healing practitioners when people were well. No payment if they were ill! Anyone like this idea?

    Fight the good fight!

    OOS

  • Mine made that mistake only once. It soon learned the hard way when I got to reception to rebook and stood in the line and in a loud voice said, Right my dear I need a day nothing has been booked on as I have 1,2,3,4,10,20,50, now what was is...problems and as that sign states clearly one problem per consultation I need 50 appointments in the same day. Do shut your mouth dear it is not a nice sight. COme on, I am a patient with multiple complaints that need looking at and as some idiot has decided only one can be dsicussed at one appointment you need to start booking me in for all the slots. I think you may find you wil have to clear his golfing schedule as I do believe the rest of the patients here have MORE THAN ONE MEDICAL PROBLEM. If, as he demonstrates with this sign clearly, he cannot cope or manage he should not be in the field of medcines especially where patients are present. I can only thank the stars he did not go into maternity. I would think the first mother he encountered and exercised his one problem only consultation would have thrown him out and a good few choice words would have been hurled too..

  • Love it Ravenhex! I was just going to suggest doing the same thing but you've been there already. Fortunately they don't have that sign up in my surgery.

    Reading the "Duties of a doctor registered with the GMC" no where can I see anything that suggests "Only one problem a consultation"

    I would report them for not "Making the care of your patient your first concern" They are obviously thinking of themselves and not the patient. Perhaps that should be pointed out to them?

  • My daughter of 8 years is going through the same problem at the minute. She has all the symptoms alopecia too which Is connected with hypothyroidism,it's now affecting her eyes but yet again more blood tests needed?!. Doctors make you more ill by having to try and fight for what medication you need whilst all the time your obviously ill!! Jess has been referred again for the fourth time and each time jess has had all the symtoms and high tsh but no treatment, this time theyres a difference though, were not giving up without a fight,if its anything to do with us she is getting treatment.

  • Well, well & oh dear. What a b......y mess we are all in. What to do I guess is just keep plugging, write letters to appropriate people, give as good as you get & so on. . Wrote to my MP, got a reply along with the reply he received from Jeremy Hunt. Am about to respond to that. The JH letter pretty much bog standard about standards being in situ, research being done to improve things etc etc.

    Question --- what does it mean when many of the hypo signs & symptoms, which were NOT there to begin with - only tiredness/fatigue- end up being side effects of the medication taken??? This too is something that has got to be addressed.

  • I think the problem is not the diagnosis, it's because being prescribed means that you never have to pay another prescription charge and they haven't got the correct figure for diagnosed people with thyroid disease in their targets so they under report. Perhaps I am being cynical

  • And I suspect that it will get worse now GPs are in charge of the budget and have to balance the books and account for money spent but again I am just getting really cynical and fed up with fighting

  • I agree, now they balance the books, he who is funded most by the Pharm giants will rule.

    What is wrong is the way, some idiot in Parliament think the NHS should be run as a business. It cant, it never can be.

    Less of the lets manage patient by doing less, then wonder why that patient ends up costing far more as more thing fail in their health.

    Treat the whole, save the pennys, it is that simple. Some Drs really need to go back to med school to find their beside manner as many are clearly lacking in such fields.

    I've just wrote to the RCP and RCGP about these breakdowns in Dr to patient care as the Drs are failing immensely to care for the patients, despite their charters and guidelines. Its about the money, money money not the keeping patients healthy as best as possible.

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