TSH in reference range is not reliable indicator of adequate treatment

Just wrote a new blog post on the failings of the current use of the TSH laboratory test. You can find the link to it on my 'Recovering with T3' Facebook page: facebook.com/recoveringwitht3

Best wishes,

Paul

p.s. for those without Facebook please use the link: recoveringwitht3.com/blog/t...

16 Replies

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  • Thanks for putting this on Paul. I honestly take my blood test results with a pinch of salt. My last ones i should have been manic and bouncing on the ceiling. Sadly this wasn't the case at all.

    I feel so strongly about this now i am avoiding thyroid blood tests. I think if i judge by symptoms alone i have a much better chance of getting better.

  • That may be true but if FT3 is high then it may give you a clue that something is blocking thyroid hormone action .....rT3 .... low cortisol .... iron problems etc. TSH isn't a whole lot of use I agree. Well, it is for those who really respond well to thyroid hormone but for the majority on sites like this TSH is very rarely helpful.

  • Hi Paul,

    I've in fact had my lab results back today, and i do have low cortisol, the total is 15.3.

    My last lot of thyroid blood tests showed me suppressed, slightly above range FT4 and slightly above range FT3, but I still feel terrible, all hypo symptoms unchanged. My GP cut my Levo dose and made me so much worse, including terrible double vision.

    Thank goodness there are people like you to keep busting the myths!

  • You could fix your cortisol with either NDT or T3 and then using the CT3M. Don't be tempted to use adrenal glandulars or steroids to begin with unless you have an Addison's disease or hypopituitarism diagnosis.

    Glandulars and steroids rarely provide a long term fix - they are 'the lullaby that sends your adrenals to sleep'. They reduce the signal to the adrenals making them even less responsive.

    There is so much bad mythology out there on the Internet about adrenal glandular and steroid usage and these are often promoted by some doctors too. They aren't a good move in most cases - but they are for some.

    CT3M is 'cleaner' - it requires nothing but the thyroid medication that someone should have access to anyway (T3 or NDT) and it is risk free. With CT3M there is a chance of getting the patients own adrenals to respond ..... and it often works - which is more than can be said of adrenal steroids.

    ..... off soapbox.

  • Hi Paul,

    I started NDT added in to my Levo in February as instructed by Dr S. I admit I've raised the 1/2 grain suggested to go with 200mcg of levo ( that has done absolutely nothing but given me a calmer heart), to 2 1/2 grains. I'm desperate for something to work. I'm now taking 175mcg Levo, I tried dropping to 150mcg, but the sweating, nausea and feeling drunk stopped me from getting any sleep at all. So at the moment I'm sure I' m doing myself no favours with 175mcg of levo and 21/2 grains of Armour. I have noticed my face is less puffy, that 's about it.

    I'm seeing Dr S next wek, he obviously doesn't know my cortisol results yet, but I have ordered T3 in readiness!

  • But did you use CT3M?

    The T4 is probably converting to a lot of rT3 - which remains unmeasured at the moment. Dr S is a fan of high T4 doses also. Less T4, more T3 and more cortisol via CT3M would be the direction I'd be looking at.

  • I haven't taken any straight T3 yet, just ordered some, I will be following your methods. I did wonder why I'm taking all this T4 and nothing much is improving. I did think about rT3 and probably why I feel so grotty. Nearly 2 years down the line and I haven't gotten very far.

    An additional problem is that I have to take Cimetidine for a bladder disease I have, it does prevent a lot of absorption.

    Thanks for taking the time Paul to suggest a strategy.

  • Hi Paul

    Interesting article you have written - I certainly realised early on that my TSH results were not reflecting how I was feeling (the TSH result was normal - I wasn't!!). It is a shame so many GPs decide to go by the TSH result rather than use their diagnostic training and listen to the patient and look for signs and symptoms.

    However I have been wondering if the TSH is indicative of anything at all? For example when I first developed hypo thyroid problems my TSH was 2.4, my free t3 was 3.6 and my free t4 was 13.1 so everything was in 'normal range' even though I clearly had symptoms of hypothyroid.

    So does that mean that these tests are totally useless as they don't reflect the patients thyroid health status at all? Or do they tell us anything useful? Does the TSH test just show us the pituitary is working?

    In other words - is it ever worthwhile paying to get these tests done or should we solely rely on symptoms as a guide to our treatment?

    Interested in your thoughts on this one

  • I think they are useful to at least see if anything strange is going on. However, I really don't see much help from a dosage management perspective in TSH for people that don't respond straightforwardly to meds. I also really don't like to see TSH only being tested - it really needs FT3 and FT4 and rT3 with it. Unfortunately in the UK rT3 can still only be done privately and it often takes a total headfit for a doctor to be persuaded to do FT3 (more difficult these days than it was 20 years ago to get them to test FT3 it seems). EVen when a doctor asks for FT3 sometimes the laboratory decides not to do it if TSH is OK. Crazy!

    Personally, I know how I'm feeling and I know blood tests don't help me at all. I only have them done once a year or every couple of years now on the insistence of my doctor - I guess it is useful to check that nothing truly abnormal is going on. My results are virtually unusable my the doctor though as they do not fit the pattern of normal lab test results. FT3 between 8 and 9, zero FT4 and zero TSH. If my TSH was 10 then I'd suspect something strange was going on with my pituitary. If FT4 was high I might suspect a T4 producing tumour as I don't take T4 and I know my thyroid has been destroyed by Hashi's. So, there is some value even for me in checking them.

    I do believe symptoms and signs is a far more helpful way for most people to determine dosages of thyroid hormone. Blood tests should be done occasionally though as a useful additional measure. The full thyroid panel can be very helpful in the diagnostic stage and in determining if a particular thyroid medication is working well or not. For example with low to mid FT3 but high rT3 then it might make sense to do further testing of cortisol or iron and consider adding some form of T3 containing medication during the day.

    Hope this helps.

    Paul

  • Thank you Paul, that information is very useful.

    I couldn't even get my private doctor to do reverse T3 tests so I know my NHS GP would really flip out on that one! I wish GPs would run a full panel of tests when patients first appear with hypo symptoms rather than doing bare minimum of TSH or TSH and Ferriten etc.

    I just find it interesting that from when I was first diagnosed (results in the first post from me) to where I am now TSH 0.07 (0.3 to 4.5), T3 free 3.64 (2.1 to 4.2), T4 free 0.86 (0.7 to 1.8) .

    My free T3 results are about the same and I think my free T4 is about the same - the TSH is now dropped down to about 0.04. And I have not had any improvement in my symptoms - particularly re hair loss - despite have had 7 years of treatment on 3..5 grains of armour and now 125mg of T4 and 40mg of T3. So either the treatment doesn't work for me or the tests are useless at showing what is really going on physiologically.

    I am trying the CT3M method as previously discussed with you to see if that makes a difference but bottom line is my results and my symptoms show little sign of improvement despite years of quite high medication. So I guess what I am thinking is that either the tests are useless or the medication is - if that makes sense!!!

  • The combination of high T4 and T3 is probably not suiting you. You are almost certainly generating high rT3. The medication is fine - it just isn't being used together properly IMHO.

  • That is why I am trying out the CT3M to see if that helps me utilise the meds in a better way and heal adrenals. I just get very demotivated every now and then but keep trying.

    I hope that one day I can send you a success story!

    Thanks again Paul

  • Except you are taking a lot of T4 with 40 mcg T3. The combination will totally suppress TSH which will virtually guarantee a high conversion of the T4 to rT3. I think the T4 content is far too high but that is just one person's view.

  • Hello Paul have conversed with you privately previously but have just seen this site. Could you please advise me on my tests Serum TSH level (XaELV) 0.08 miu/L (0.5 - 4.7) and Serum free T4 level (XaERr) 21 pmol/L (9 - 24) Have requested T3 (after a struggle with the doctor to have them done), and guess what like your comments the lab did not do them (second time this has happened). I have taken in a letter of complaint to the officer Manager at my surgery yesterday, with a myriad of print outs from several sites such as Throid UK etc and awaiting a reply from them I am currently taking T4 only Levothyroxine 150mcgs, and have been doing for 18 years of my life. I know that it is not working for me feeling terrible all the full blown symptoms, and main ones at this time terrible aches in upper arms and neck. Please advise how I can get T3 which you take? I am currently looking for a new doctor. Would be grateful of any information/advice that you can give me.

  • Looking for a new doctor is the best approach. I suggest you post a question on this site (not the blog area but the Q area) and ask people to private message you with the names of potential doctors that you might consider.

    FT3 and reverse T3 are the most important thyroid results. TSH and FT4 are both relatively unhelpful in concluding anything. TSH is a pituitary hormone and FT4 is relatively inactive. So, I'd place more emphasis on your symptoms, which you suggest are those of hypothyroidism - QED the T4 probably isn't working well. Natural thyroid or a T3 (with very much reduced T4) solution might be better.

    Getting a new doctor is the best step.

    Best wishes,

    Paul

  • Many thanks Paul I have put out a question of the the Question side of this site.

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