Who can I trust? please answer

Lots of you have have kindly answered by two questions that I posted - one when I received my test results back and the second one when my GP does not want to treat me at the present time.

The opinions Im getting elsewhere are that I should not "google" for answers and that I should trust my own GP. I felt that desperate tonight so very ill Ive had to phone for some support to a helpline - they questioned why I thought the Dr would not treat me if I was really that poorly and that I should trust the GP and maybe my anxiety was making things worse.

What do you guys think about not being trusted that you have given me correct advice

(By the way I do trust you as you come recommended by Thyroid UK and I feel sure that you would not be able to give the advice you do)

By the way insomnia is high at the moment although im sooooo very tired x

10 Replies

  • Hey I know it's overwhelming and pretty confusing. I was the same when I first started researching back in 2003. All these tsh, ft3 and 4's, adrenals and levothyroxine etc. but I read and I learnt. You will too don't worry!

    Ultimately, you have to trust yourself. Do you feel well? Do you feel something's wrong? Get advice and opinions from everywhere and weigh it all up. Get second, third and fourth opinions if you have to from gps. Having said that there are guidelines and ranges to diagnose hypothyroidism. The top of the range for tsh used to be around 6 whilst in the USA I think that it is 4. A few years back the uk upped it to 10. You are over the range, you need treatment. Your gp is being overly cautious at best.

    I see a nhs Endocrinologist who is German. He has told me that the range for tsh at 10 is too wide. He would treat at 3-4 in his country.

    If you wanted to wait for three weeks for your thyroid blood test and it came back the same you would be offered treatment.

    You know a lot of people do not understand thyroid disease, the controversies over the bloodtests and diagnoses or the devastating effects upon your life. In 2003 I had a tsh of 5.6 and had to give up my job because of the fatigue. I spent a year practically in bed before the next summer when my tsh rose above 6, (which was the top of the range then ). Then i got my thyroxine. It didn't matter to them that I was suffering all that time. I knew that something was wrong but they chose to only look at the numbers not the clinical picture.

    We give advice based on what we have been through as we don't want others to suffer unnecessarily. So read all the advice you can get and research everything but ultimately trust your instinct and look after your own health. You live in your body, you know how you feel. Doctors do not always know what is best!

    Hope you get sorted

    Keep us posted

    Carolineanne x

  • Hi again

    I meant to also say that I am sorry that you are feeling so poorly. Please take care of yourself until you can speak with a doctor. If you can't get an appointment try to see the nurse and explain what is going on.

    Hope you are feeling better X

  • Trust YOURSELF! Only YOU know how ill you feel. Unfortunately my opinion is that GPs are general practitioners, they do not specialise in anything and have limited knowledge especially when it comes to thyroid. As long as you are 'in range' they will not change treatment, they are too afraid of operating outside the guidelines for fear of being struck off. Arm yourself with knowledge and in that way you will learn about your illness and have the confidence to demand the treatment you need. It is still a battle as some things have to be paid privately for, but it is worth it to feel better. Could you sleeplessness at night be down to poorly functioning adrenals? Cortisol should be be highest in the morning (to get you going) and lowest at night (to help you sleep). Have you look at the Stop The Thyroid Madness website?

  • Hi liketoknit,

    I can't offer an instant answer, but I can add my support to what others have replied on this thread and your others.

    You REALLY should have some help from your GP with test results like those. You don't give the reference ranges, but your TSH is high in anybody's book, and still rising. You are entitled to help from your GP, and not to put it too strongly he is being negligent.

    I don't know which helpline you phoned, but they clearly don't know their stuff either.

    This information may help if you can get to see a doctor today:



    It is very very wrong that you have to fight so for treatment. Is there anyone you could take with you to an appointment to give you some moral support?

    Good luck today. Keep us posted. Jane x x

  • Yes you need to trust yourself and unfortunately not your doctor. They don't know enough about thyroid disease.

    I went to the doctors feeling ill 2 years ago (anxiety, dizziness, vertigo, tingling hands and feet, feeling spaced out, headaches),and blood tests showed I had a TSH of 18.0 but my ft3 and ft4 were just in range, although right at the bottom. My GP referred me to an endo who basically said nothing was wrong with my thyroid and that all of my symptoms were caused by health anxiety. i was sent to see a counsellor who agreed and told me to stop looking on here, as this was feeding my health anxiety.

    Any way to cut a long story short I stopped seeing the counsellor. I thought I was going mad as no one believed that I had a thyroid problem because a specialist had said so. I kept looking on here and believed that it was my thyroid, in spite of what the doctors said. Fortunately my TSH shot up to 59.0 and my ft3 and ft4 went below range. I started on thyroid replacement and am now feeling so much better. The doctors had all been wrong. I have always trusted doctors before, but unfortunately where thyroid issues are concerned, this is not the right thing to do. xx

  • There are no easy answers, I'm afraid. I read the message boards, and I don't agree with everything that I find here. But I also think that the medical profession is not as knowledgeable as it would like us to think it is! I used to trust doctors implicitly too, but now I realise that they don't know everything.

    There is an alarming tendency for doctors to ignore the patient's symptoms because these can be subjective. One symptom can have many causes, so I understand that they have to be cautious in how they interpret symptoms. But things go too far the other way, and doctors rely too heavily on the tests and appear to completely ignore how the patient is feeling. They are also tend to downplay things in what I guess is an effort to be reassuring, which often makes it seem like they don't take you seriously.

    As patients we care about things in completely the opposite way - we care about the symptoms above all and the tests only if they can help guide us to the correct treatment. And we want someone to validate and understand how we're feeling, and give us hope that we will get better.

    I think they will treat you in three weeks time. But if that's too long to wait, then it might help to write a short, simple letter to your doctor, saying exactly what you've said here - that you feel so ill that you can't go on like this much longer - and asking why are you not receiving any treatment for your thyroid condition. Sometimes a letter can have more impact.

    Things will get better


  • If the ten medical people I saw before I was diagnosed cannot diagnose someone with a lump at the front of their neck, a hoarse voice like a 100 day cigs - with a TSH of 100, what hope have we - none. Even an overnight stay in the A&E cardiac resulted in 'probably viral with high cholesterol'.

    Finally, it was a person who does first aid pointed me in the right direction.

  • Often even a stranger. I was told by everyone around me for 4 yrs I had gall stones. But the doctors No...

    I was in and out of a &e like a yoyo for heart I kept saying I think I've got gall stones.

    All those yrs and pain.. one doctor asked if I was depressed then asked hubby when I left room, ...... Guess what it was gall stones.

    Trust in yourself

  • Thank you so much for your support - I would have been on sooner but have been on the bed for most of the day - having spoken to another GP at my surgery they still will not budge on my results not just being a blip and want to do another test in 3 weeks so I have to trust that they know what they are doing "not"

    Thanks again


  • Categorically DO NOT TRUST ME!

    I try to do is point people at information. Hopefully, I point them at useful, decent sources.

    But at the end of the line, don't take what I say on trust. Find out. I positively encourage those who are able to look things up.

    I would far, far rather someone came back to tell me I was wrong and, hopefully, why they think that, than they went of and followed things slavishly.

    I am old enough and ugly enough to take a few knocks. :-)


You may also like...