Why is it hard to get diagnosed

Hi all after reading a lot of posts it seems to me that a lot of doctors doesn't want to diagnose thyroid problems why is this? I have a lot of symptoms of underactive thyroid I had a blood test last June and my doctor just said everything is normal apart from I am low on iron and a little anemic I've had symptoms since then and went to a different doctor and he's now sent me for more blood tests now waiting for results I just don't understand why this seems to be so hard to get diagnosed and treatment x

26 Replies

  • Am sure thousands of people are asking the same question. We have too much trust in a medical system that no longer has the time to listen to patients or look for clinical symptoms. I recently read that when anti-biotics were created - the shift to good health was huge and people instantly had faith in their Doctors and were thankful for having their lives saved.

    This gave Big Pharma huge power and ideas. They then went full pelt into finding a pill for every symptom and the root causes were left on the back burner. The medical model became one of - pull out the prescription pad - and all will be well.

    GP's are governed by rules and regulation by various health Bodies like NICE - who are supposed to care for public health. Many of them are on the payroll of Big Pharma - so will not bite the hand that feeds them :-(

    We have also lost sight of old fashioned remedies used by our grandparents - a bit of bi-carb for indigestion - inhaling steam with a blocked nose - resting when unwell - chicken soup and so on ! Instead people flock to over burdened surgeries for a quick fix.


    Scroll down in the above link to watch the 4 minute video explaining what has gone wrong.....

    Also please bear in mind that if the thyroid remains untreated/undertreated many of the remaining symptoms can be treated with a variety of drugs - earning far more for Big Pharma. Levo is reasonably cheap to produce and not a big earner :-(

    I am someone who has had the benefit of modern medicine over 40 years ago - which also resulted in ongoing ill-health for many years - hey ho.....

  • Because they are totally hamstrung by barbaric guidelines, that are widely interpreted as rules. And refuse to look at or listen to the patient in front of them.

    My TSH was 4 and I was on my knees, off work for 4 months, and had no choice but to self medicate. And I work for the NHS, so it's no better if you are staff!!

  • How did you self medicate and monitor ? I might have to take this route

  • you dose by symptom relief with ndt or t3 only. Blood testing confuses things.

  • I started on a quarter of a grain twice a day & increased slowly, about every 10 days. STTM has a good guideline to starting although I did it slower than they suggest.

    I do believe you need blood tests as hypo & hyper symptoms can be similar. I use medichecks, blue horizon or genova for testing. I use the finger prick ones you can do yourself

  • One of the problems is that the symptoms are vague and you can have them all without having a thyroid problem. So they over rely on the tsh. It may be that some of the symptoms are from different co existing conditions too.

    What were your tsh and ft4 results? What was your ferritin and haemoglobin? Low iron does give symptoms which overlap. Have you got your iron up now?

  • ps reading some of your other posts, your anaemia may well be causing the nighttime panic attacks and palpitations and occasional tinnitus. Do you find you need to stretch and shake your legs at night before going to sleep?

    Anaemia has serious effects.

  • I had palpitations etc. before I was diagnosed. Intermittent ones mainly in the middle of the night but also during day. Get a print-out of your most recent blood test results with the ranges.

    Was the blood test done at the earliest and did you fast (you probaby didn't as it is a recent suggestion for thyroid testing) . It is recommended we have it at the earliest (TSH is highest then) and fast. Also ask for Vitamin B12, Vit D, iron, ferritin and folate and also cholesterol (we have a higher cholesterol level usually) and get a print-out.

  • Asking for a cholesterol test is likely to land any hypothyroid person with a prescription for statins. I would be wary.

  • Well you can always refuse the statins, I do.

  • Oh yes, I know. I refuse statins too. But I already have a reputation of being an awkward customer, so I have nothing much left to lose.

    Anyone who has a reasonable relationship with their doctor might not want to start developing a "reputation" like mine. So my logic was that people shouldn't ask for tests if they aren't prepared to take the "cure" prescribed by their doctor.

    My doctor no longer tests my cholesterol since I've refused statins twice.

    The second recommendation for me to have statins came from a cardiologist - it was sent to my GP along with some other results, so it was the GP suggesting them on another doctor's advice. When I turned them down my GP didn't turn a hair, and commented that the cardiologist had recommended a really high dose too. She hadn't mentioned that until after I turned them down.

  • Thanks all for our replys no I didn't ask for a print out of results last June coz I didn't know anything about thyroid and no I didn't fast either had test in the morning sometime but I did fast this time and had test done at 8 40 am and I will ask for print out I only had test done last Thursday 11th will post it when I get it thanks for all your help x

  • I find it very hard to get any diagnoses too, mentally or physical. I feel if I had a diagnosis I would get more specific, constructive treatment and support.

  • I'm sorry to hear that rontgen it's horrible when everyone is suffering and they can't get diagnosed yet if you were a drug or alcoholic abuser you would soon get help with it!

  • Or if I had a broken leg rather than a broken mind !!!

  • T4 (with 4 iodine atoms) is the prohormone produced by the thyroid, which gets converted into the active hormone T3 (with 3 iodine atoms) by the removal of an iodine atom. The conversion is done in various tissues of the body e.g. the brain, the liver. The thyroid also produces some T3 directly.

    It doesn't work the other way around. :)

  • get your results and put them on here and you will get advice from those in the know. If you need to and choose the self- medication route you can find out where to buy ndt, t3 from people on here by pm. and also get support and advice as you take your health in your own hands.

    my gp was sympathetic but would not treat on symptoms alone even though the list was as long as his arm :) Mind the risk there is being dragged before the bma and /or struck off for daring to treat patients not lab results :o

    good luck


  • In the UK, it is the guidelines which are skewiff in that the doctors/endos are instructed to wait until the TSH is 10 before prescribing. When finally diagnosed, many doctors believe that once it is anywhere in range you're on sufficient which is not the case.

    Our doses are usually far too low to compensate for the need of T3 which is essential in all our receptor cells with the result that more clinical symptoms can appear after beginning treatment. Thankfully some will prescribe if TSH is lower but many countries now prescribe if the TSH is around 3 with symptoms.

    Medical professionals are also ignorant of clinical symptoms, are unaware of them and they've lost this important skill and don't think of them as crucially important.

    Patients are then vulnerable to develop other more serious conditions, the pinnacle at present seems to be Lorraine Cleaver's post yesterday.

    The insistence that only levothyroixine alone is sufficient and it may be for many, but there are groups that do not. So they never, ever, recover fully and life is just so much diminished with ill-health, diagnosed as mental or any other 'name' when we relied so much on the doctors to heal 'where possible'.

    It is only hormones we lack which can be replaced but they are absolutely essential and doses shouldn't be adjusted according to the TSH but how the patient 'feels', i.e. well or unwell..

    Levothyroxine isn't compatible with the bodies of some and the addition of T3, or T3 only or NDT should at least be offered without them being withdrawn due to 'cost' and False Statements made by the Authorities. The doctors tell 'us' how we should be 'feeling' due to the results on a piece of paper/computer - not listening to our pleading that we feel absolutely awful.

    It is time for a return to 'patients first' and guidelines second - after all the first part of the statement is 'guide' not 'set in stone'.

  • I tried to find Lorraine Cleaver's post of yesterday, which you mentioned. Can you give me the link?


  • My computer's been down. Sorry for the delay. Here it is:-


  • Thanks

  • The woman is still severely hypothyroid. Diverticuli are common when hypo. Same with severe constipation.

  • I have been tested several times and my results always come back in the borderline area, but they never advise any treatment.

    having Fibromyalgia and IBS as well complicates things, but i feel constantly fobbed off.

  • Hi Midori - do you have copies of your borderline results. It is possible someone here could spot something that may need a tweak. Your symptoms should also be taken into consideration. Fibro can often be linked to LOW FT3 and I don't expect that thyroid hormone was ever tested by your Doc. Also important to have thyroid antibodies tested. What about VitD - B12 - Folate - Ferritin ? They all need to be OPTIMAL for you to have a well functioning thyroid. Are you in a position to have your tests done privately through Thyroid Uk with a discount.

    I was once diagnosed with Fibro by a Rheumatologist but found once on Thyroid treatment some 5 years later in 2005 - things quickly improved :-)

  • Unfortunately I cannot afford private tests, as I am a pensioner, but I have low Vit D levels. Truth be told, I have got so fed up with my doctors that \i haven't been for over a year. My Gp came out to me just before Christmas, but I just can't justify £10 worth of taxis just to see him.

  • My GP is good but he still puts 95% of what I say down to mental health not physical health, ie, he is not believing what I say ! As I have big trust issues, this can be a big problem for me which makes me feel much worse than before I saw him.

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