Hypo (post-RAI, 125mg), exhibiting hyper symptoms, told to stop Levo entirely for a month to see if symptoms persist. HELP!!

Hi all, I'm 8 years into my over/under journey and today I've been advised to do something that I've never heard of before and would like some input.

I'm post-RAI, so hypo, but in the last month or so I've begun to notice some of my original hyper symptoms - insomnia interspersed with bouts of intense fatigue, palpitations, heat sensitivity, agitated, restless, aggressive, fast digestion etc. Had my bloods done and my TSH has come back normal (1.1). Apparently my trust won't test T4 unless you write to them with a special request with your reasons. GP said that my results were normal, and when I asked what we do now about all of the symptoms I'm experiencing he told me to stop taking thyroxine for a month and then go and have more bloods done.

This seems like a really bad idea to me (especially as I just got married and we're thinking babies). Can I have your thoughts, please?

Thanks you :)

10 Replies

  • With a TSH which is euthyroid (aka "normal") and symptoms which seem to be hyper you can't make any sensible decisions about your treatment at all. You simply don't have enough information.

    You are right about not stopping your levo. I suspect that is very likely to make things much, much worse.

    Reasons for hyper symptoms when you are actually hypo are :

    1) Insufficient T4 and/or T3.

    2) Low nutrients, particularly iron and B12, but there are other important ones too, e.g. vitamin D and folate.

    3) Low or high cortisol. There is a lot of crossover in symptoms between low and high cortisol so it isn't possible to "guess" which one you might have. You would need to be tested.

    I would suggest you get some private tests done if possible. I wrote the following yesterday, and it may be helpful to you too :

    There are thyroid tests you can do privately which can be ordered off the internet without the interference of a doctor, nor do you need a doctor's permission.

    bluehorizonmedicals.co.uk/T... (£99)

    bluehorizonmedicals.co.uk/T... (£139)

    The first test package linked above can be done as a microtainer test or a vacutainer test.

    The second test package linked above can only be done as a vacutainer test.

    Microtainer : Finger-prick test. Spring-loaded lancets are sent to you to allow you to prick your fingers. Little vials are sent for the blood to be dripped into.

    Vacutainer : Blood sample required from the crook of the elbow. A nurse or phlebotomist will have to take blood for you. All the equipment required is sent to you.

    Once you have your blood samples they must be packaged up and taken to the post office where you must post the package asking for "Guaranteed Next Day Delivery By 1pm". Since you want the blood to be processed as soon as possible for greatest accuracy, only do blood draws on Monday - Thursday and post the samples as soon as possible. The lab isn't open at the weekend.

    Timing : Take blood samples early in the morning, by 9am at the absolute latest.

    Fasting : Don't eat or drink (except plenty of water) overnight or on the day of the test until after the blood has been taken.

    Taking thyroid meds : Before blood is taken, levo should be left off for 24 hours, any meds containing T3 should be left off for 12 hours.

    Supplements : Avoid these for 24 hours. For iron supplements, some sites e.g. STTM suggest leaving these off for 5 days before testing.

    Whatever you do with regard to timing, fasting, stopping meds and supplements, take note, and be consistent from then on - always do tests the same way.

    Phlebotomy for vacutainer tests :

    People make their own arrangements for this. They may know a friend or relative who will take blood for them.

    Some GPs will allow patients to make appointments with the surgery phlebotomist, either for free or for a price, some won't allow it under any circumstances.

    Some NHS hospital phlebotomy services will take blood for private testing, usually for a fee. The size of the fee varies dramatically. Phone up in advance and ask whether they will do it for you and how much it costs. Remember to take your tubes away with you. If you have a few hospitals near where you live, shop around for the best response.

    There are private phlebotomists, who might come to your house. They are expensive.

    Some private hospitals may take blood for you, for a fee. But some insist that it can only be done if you are seeing one of their doctors, which is what you want to avoid.

    Getting your results : These are returned to you via email.


  • Do Blue horozion to test for hashimotos

  • Welcome to our forum and am very sorry for the run-around you are having at the moment.

    Personally, and I have hypothyroidism I cannot understand when someone's thyroid gland has been knocked out altogether that they cannot add some T3 to your levo (T4).

    Despite your clinical symptoms (of which they know nothing about) and assume due to the TSH only that there's nothing wrong with you thyroid-wise. They are so very wrong most of the time and that's why we've over 40,000 on this forum.

    Those who have had RAI or gland removed will also respond.

    If you can afford a private test, we have recommended labs and you get a small discount. They will do the whole range of tests. You can do it at home and post.


    You will then know for sure what's causing your symptoms.

    Myself, hypo, on levothyroxine I was forever in and out of A&E with severe palps, etc. Nothing wrong with heart after all tests. When I stopped levo, so did my heart palps and when I took T3 (liothyronine) everything in my body calmed down.

    New research has shown that we do need T3 as well as (or instead of) T4.

    Never accept 'normal' with regard to blood tests if you are not 'normal'. i.e. feel in good health.

    The blood test for thyroid hormones should be at the very earliest possible and it is a fasting test although you can drink water. Also don't take levo for about 24 hours before test. This allows the TSH (as that's all they take notice of) to be at its highest.

    You need TSH, T4, T3, Free T4, Free T3. One of the labs do pin-prick tests and members have been happy. Also you can have a lab or doctor's surgery to draw blood for you (if you request). Just tell him you're not happy with the NHS and you are suffering.

    Also ask the GP to check Vit B12, Vit D, iron, ferritin and folate as we can be deficient. In order to be better we have to read and learn ourselves, unfortunately or fortunately as we might then have the best chance to feel well again.

  • Still can't get my head round this, gp and endc- say take levothyroxin before test. Is there something am missing , why do they tell so many of us to take meds ?

  • Hi did you get your TPO tested? Over 20 years ago I was given RAI the following blood test come back with 'in range' results- as did every yearly blood test. I was given no meds though (sadly). 14 months later I had to have a second dose of RAI, because I had gone way over active again. Up until 5 -6 years ago with no meds in between and getting more and more ill, then given 25 mcg thyroxine for those last 5yrs and getting more sick. I finally discovered I had Hashimotos..no medical professional had ever told me that!!! I have Clutter to be forever grateful to for reading some results and informing me. I have made lifestyle changes etc and am feeling much better than I have in years..not 100% but more knowledgeable and understanding. If you haven't had this test I would ask for it if I were you. I remember thinking 'why am I getting these hyper symptoms again?' I had been assured that the RAI would improve my life, and that eventually I would go Hypo and it is easier to be treated by own GP!!! I wasn't treated. x

  • They do not know that taking hormones before a blood test skews the results - as simple as that and that is what puzzles us that they know nothing at all - neither symptoms or how to make us better. They follow the non-logical guidelines of the BTA and that is 'TSH only for diagnosis and for adjusting meds'. We know that's very wrong and we suffer incredibly due to the guidelines. Guides are supposed to take us to a 'safe' area but not with regard to thyroid hormones, it would seem. Plus levothyroxine alone - which many of us on this forum found that it didn't work and for me it made me far worse with terrible heart palps - I don't have any now - isn't that strange? As soon as I stopped T4. It suits some people but not others. As Mango_555 has suggested also ask for a Thyroid Antibodies blood test. If you have hashi's there's things you can do to ease attacks (they antibodies attack your gland till you are hypo) but you should be given thyroid hormones (levothyroxine).

  • Thanks for your advice, at the moment my heads spinning never could understand results. It's only now I realise I hadn't got a clue about thyroid conditions, trying to take everthing in.

  • You will get there and you are sooooo not alone in being ignorant of your own thyroid conditions, I trusted the medical professionals and to my cost for most of my life. Little at a time, baby steps, otherwise it will all overwhelm you. God Bless you x

  • Thank you for your lovely post, yes I've learnt the hard way, not to put all your faith in them. For the last three years I've kept letters from all consultants, also till recently i kept a log of everything. But being so ill couldn't be bothered will start again.

    Am sure the NHS has a red alert against my name, (laugh)

  • If you have only one red alert flag you are doing extremely well LOL. Dread to think what mine are. x Take care.

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