Gp's hands are tied! Test results

Hi again, I've just got back from seeing my go. I've waited weeks for this appointment so I could see THIS gp as he is a good man. We looked at my last bloods from September and he could see that TSH 0.13is suppressed. That FT3 is low 3.9 And FT4 is high at 18. I explained that perhaps I wasn't converting T4 to T3 well. He admitted that he didn't know enough. He advised me to see the only private endo here in Norwich who he said could prescribe T3. He also said that he couldn't prescribe it even if he wanted to. He tried to do a blood test form for me to measure FT3 FT4 etc. But if he puts that I am on levo the computer will only let him test TSH! If tsh is suporessed the lab then do T3. Poor man tried! He totally got where I was coming from but can't help me. He will support me if I want to buy my own T3. Or NDT. Hair still falling out. TED bad today. Eye painful. Feel very foggy too. Let's see what endo says....

17 Replies

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  • Hi - you could buy many years worth of T3 for the price of a private endo appointment! Unless you really need reassurance (and experience of many here shows you don't always get that from endos) - why not self-treat and have GP monitor?

    Good luck

    Gillian xx

  • Thanks for reply. I'm not sure if I need T3.

    TSH 0.13 (0.35-3.5)

    FT3 3.9 (3.8-6.0)

    FT4 18 (8.0-16.0)

    I want this particular endo so hoping he will continue to see me on NHS. I need eye refers too. Because my eye is bad I'm worried about self medicating. Do you think I need T3? Or NDT?

  • FT4 should read (8.0-21)

  • Your FT3 should be towards the upper part of the range not bottom.

    This is a link which may be informative:-

    drpaoletti.com/faq-thyroid....

  • Thank you!

  • Your FT4:FT3 ratio should be around 4 for good conversion, yours is more than that so you are not converting well. I see in earlier posts you were advised to get your nutrients checked and post the results - did you ever get these? A less than optimum result in any of these can reduce conversion.

    I can't say whether you need T3 or NDT, there are individuals that do best on one of these and not the other and vice versa. But you do really need to check those nutrients before you even attempt to alter your type of medication. T3 and NDT are both quite unforgiving and can cause more issues if everything else is not right.

    I am confused about your endo situation. In your last post you said endo was unhelpful. Here you say you were advised to see a private one, but now you say you hope to continue seeing the private? one on the NHS?

    Gillian

  • The last endo I saw was unhelpful. I want to see a different one. My gp can't refer me to a specific one. Apparently he refers me and I get put on the list of the one who has space. So the only way I can garantee to see the one I want is to get a private referal and then hope he will continue to see me on NHS. Does that make sense?

    I am going to get a blue horizon thyroid test done this week. Will post results. Thanks

  • If you email louise.warvill@thyroiduk.org who has a list. Some may be NHS - I'm not sure but others are private. If you select a name you are allowed to post the name and ask for information to be sent to you by Private Message.

  • Thank you again!

  • Before you try T3 or NDT (as many others have already said) you really need to know your current levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells.

    Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking.

    As you can not get GP to do these tests, then like many of us, you can get them done privately

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

    Blue Horizon - Thyroid plus eleven tests all these. £99

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible.

    Even if you can get a private appointment with endo of your choice, it would still be very good idea to get these tests FIRST.

    As you have Graves then you may find adopting 100% gluten free diet might help reduce symptoms, especially if you still have high antibodies it may help lower them.

    Selenium supplements can help improve conversion of T4 to T3.

    You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's & Grave's too.

    chriskresser.com/the-gluten...

  • Thanks for full reply. I am getting private bloods before I see endo. I am taking solar multi vitamins. Should I stop them before my blood test? I think I read that should stop iron 5 days before bloods done. Thanks

  • Stop taking them completely full stop.

    Multi-vitamins are a waste of money because if you are deficient in any vitamin they won't contain enough to stop you being deficient, and some contain minerals that interact with each other effecting their absorption.

    Finally you may now not get a true vitamin B12 reading. So you need to state you were taking the multi-vitamins when you give your results.

  • Thanks bluebug. I think I'm feeling so bad since I started them. Been up all night with eye pain. Eye has swollen up. I took some prednisone at 3 am. Will tell them that too. God its so hard to get it right! Especially when you are feeling so bloody lousy! Anyway, keep going! Thanks again.

  • When you get the test results from your nutrition blood tests start a new thread with the results AND ranges. Other posters who have had nutrition problems are well versed on giving advice. Also post your approximate age as this is important for giving advice if you need to supplement iron.

    Believe or not doctors are not taught about nutrition and exercise in med school. All they are taught is that if it's above lab range you should not get the worse diseases, so they are unhelpful in this respect. Therefore it is up to you to sort your nutrition out. Please remember the advice given is specifically targeted at you and not anyone else.

  • Thanks bluebug I've always eaten well. Since RAI have days when I can't eat at all. I'm basically vegetarian but will eat a steak this week as feel bad. I've ordered my blood test. Will post results. Thank you. I'm very grateful.

  • I think this is just a way of saying 'we won't pay for t3'. If it is too expensive to buy - why? They need to negotiate. I was recently told that it was because a couple had bought the 'rights' to T3 and had bumped up the price. I don't know how true this is but how was this allowed to happen? I've become very cynical, but wonder if this has been orchestrated. The medical world have always been a bit sceptical about t3 -trying to convince us all that all we need it t4? Why? We are all different and react different - why would these, so called, intelligent people, believe that 'one pill fits all'? It makes no sense to me! It is wrong that people need this drug, and suddenly cannot get it. Even people who have been on it and it obviously works for them. I am one of the lucky ones at the moment, on t3 only and still being prescribed it. If you have a hypothyroid condition you are entitled to free prescriptions, because the condition is potentially fatal yet the NHS is refusing people the medication they need?? I think this is criminal!!! Worrying!!! They know what they are doing!

  • Here's the article all about it

    m.imgur.com/a/U42vD

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