Well, I saw one of the GP Registrars at the surgery this afternoon, to ask for retesting of TSH, T4 and T3. I came out with request for TSH and T4, following ain interesting, and frustrating, discussion (if you can call it that)
It seems the lab will only test for T3 if the T4 is found to be particularly high and my level of T4, at 31 pmol/L (12-22), is not high enough to qualify so the lab won't do it, even if Dr requests it.
It was explained that docs don't need to know the T3 level - the body looks after that. Umm, I thought our bodies, if Hypo, may not actually be able to deal with this, hence needing testing
Then, when I asked about potential problems re converting T4 into T3, the doc told me that all we need is T4, which is given in tablet form, that the thyroid will make all the T3 it needs, and that T4 in blood stream is all one needs.
Oh, how I hate being lied to, feeling fobbed off etc etc. How can doctors expect to gain trust and respect when they are clearly just not educated in these issues. I'd so much rather they admit they don't know and that they will do some reading/research etc.
Also, she said that, as my B12 was 215 ng/L (197-771), I definitely was NOT deficient. I don't think she had any idea of any relationship between B12 and thyroxine.
Argh!!!
Well, at least I can have TSH and T4 checked again. I'll make sure I go early morning, before any breakfast/coffee and before taking the morning's Levothyroxine.
Many thanks for reading, and your thoughts
J
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Then, when I asked about potential problems re converting T4 into T3, the doc told me that all we need is T4, which is given in tablet form, that the thyroid will make all the T3 it needs, and that T4 in blood stream is all one needs.
So, a thyroid which isn't producing the correct level of Free T4 for good health, is nevertheless capable of producing just the right amount of T3?
Yes, I'm sure in doctor-land that makes perfect sense.
So as previously discussed in earlier threads - best to click onto the link for Private Testing. Stick with the good folk here and they will have you well in no time. You have now experienced what so many people here have already - it is just so shocking when it happens for the first time.
I totally gave up trying to get my T3 tested on the NHS. I'm sure it was on the list for the labs at let once but it was never done. I gave up in the end and paid for Blue Horizon to do that and evetything else I wasn't able to have tested - B12 and vitaminD to name but two. Somewhere along the line it would appear the labs run the show or if they don't they are prepared to take the blame. Absolutely really diculous though, surely there is a reason that your body produces the stuff - why do doctors ignore it? You do have to wonder don't you.
Thank you @shaws, @greygoose, @reallyfedup, @Marz, for your responses.
I don't think there is much I can add, is there? All was as expected but I had hoped for better, as usual Yes, it's disgusting that these GPs get paid such a good salary nowadays, are supposed to practice research based stuff, while the NHS guidelines seem to be based on flawed research/interpretation and certainly not up to date.
However, I have, at least, got a blood form for TSH and T4 so my GP will see what the reduction has done to the results and also I'll be explaining to him how I've been feeling, ie so exhausted and fed up. I don't expect him to be happy to increase the thyroxine back to what it was so I'll be left with trying to persuade him to allow me a trial on B12 injections.
I'll see what the TSH and T4 result show before deciding re private blood test.
I feel another letter to GP coming on .... I explain myself so much better in a letter!
Failing that, as suggested, self-management and treatment re B12, with the GPs knowledge, of course. It will be interesting to see what happens when I see him again.
Marz I have, in fact, experienced this before but felt another 'go' was worth a try. I used to be a member of ThyroidUK years ago when the forum was in a different format (or have I got that wrong?) I got so fed up with doctors going largly by path lab reports/numbers and not taking account of how the patient feels.
Why on earth do doctors think lab reports are 'absolute'. Are we really expected to accept that everyone is normally within the range. I really do wonder how doctors think a 'range' is calculated... but, oh dear, I'd forgotten - we're just patients who haven't a clue, aren't we? Umm ...
Labs and ranges do vary so having the FT4 done with your GP and the FT3 elsewhere is not a good idea. If your FT3 is low then it could explain so much about your symptoms and treatment. There are more receptors for T3 in the brain than anywhere else in the body ..... so when it is low there is not enough to go around.
If we believed in conspiracy theories - we would have to think there is one regarding thyroid treatment Left untreated people need so many other drugs and so lining the pockets of Big Pharma. Getting to the root cause of any condition is key - and that is something we have to do for ourselves.
Regarding letters to your GP - in the above link about B12 - you will find a sample draft letter you can adapt and give to your GP concerning B12. Lots of other good information too. Have you seen the videos under the heading Films on the Menu ? Low B12 is a neurological condition if left under or un-treated. I attended the B12 Conference at Loughborough University a couple of years back where Sally Pacholok was one of the speakers. She wrote the book - Could it Be B12 ? Have you read it ?
I self treat with B12 injections weekly - take a good B complex to keep all the B's in balance. It helps with the nerve pain after spinal surgery - which was possibly caused by low B12 in the beginning I only learned about B12 in my 60's - a little too late as I do not have the Terminal Ileum where B12 is metabolised. This was removed 43 years ago - sadly they forgot to tell me I would need B12 treatment for life. I live with the consequences.
Do not wait for your GP to act .....
Edit - PS - My B12 was always around 300 and was told all was well - sadly NOT.
Ha Ha Ha!!! I think you may have a point there Can't think of any better rationale for the attitude
Yes, re getting all tests done at the one place is definitely sensible. Wouldn't be comparable otherwise, of course. Thanks for the links. They're now in favourites, for easy access.
No, I haven't seen the videos. I'll have to check them out. Thanks for that. However, I have read 'Could It Be B12', plus 'What You Need to Know About Pernicious Anaemia and Vit B12 Deficiency' by Martyn Hooper. Both great books. I'm going to get Martyn Hooper's book (above) for my GP Don't know if it'll do any good but, if he would read it, I can't think of a better book for a GP. I feel it's worth the price, eh?
Regarding self treating, depending on the outcome of the next appt with him, I may be telling I am considering self treating. It will be interesting to see his response.
Thanks for sharing that your B12 level was always around 300, which was considered fine. Nothing has changed, has it. It does make me wonder what it's going take before the GPs see 'the light' Grrrr!!!
Umm, depended on how it was worded, neither maybe felt it needed a reply.
Hopefully, your care improved a bit, for a short while (ooh, there went a pig flying past )
I feel there are some 'rules' to writing letters to professionals, ie GP, Consultants etc. Firstly, be aware there is no way they will read past the first page so important to be clear and succint etc.
Yes, my GP did read my letter, written a couple of weeks ago and it did encourage a two-way discussion. Granted, I didn't get all I wanted but I was able to get the most important, which was further investigations. I hadn't expected to achieve all
the science of the causes and effects of diseases, especially the branch of medicine that deals with the laboratory examination of samples of body tissue for diagnostic or forensic purposes.
"research people skilled in experimental pathology"
Medicine
pathological features considered collectively; the typical behaviour of a disease.
What I have found particularly frustrating is that, although the NHS lab refuses to test my T3, my daughter who has overactive thyroid and is treated with carbimazole gets her T3 tested every time. She didn't believe me at first when I told her the NHS wouldn't test mine!!
I must be very lucky where I am, (Perth) as my tsh t4 and t3 have been tested every time since diagnosis in 2016. I have probably jinxed that now by mentioning it. Ha ha.
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Left untreated people need so many other drugs and so lining the pockets of Big Pharma. Getting to the root cause of any condition is key - and that is something we have to do for ourselves.
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