Had latest blood test results on journey to finding optimal balance.
Junior Doctor (who I have never spoken to before) “Hi I am Dr ** had your blood test back, you are within range, so we will keep you on 75 micrograms and see you in a year ............oh unless you have anything to add.”
I did -believe you me. Then she said “well you are within range”.
So I explained throwing a dart and hitting the board does not mean you have scored. The range is there for a reason and ultimately the fine tuning should be based on the person’s feedback.
I explained if I could not function and work my husband and I would lose the business as we are not in a position financially to employ someone to cover my position.
I explained a ten minute conversation with her which she would quickly forget (not necessarily this one though) could have lasting ramifications for the patient.
Anyway, after my last increase to 75 micrograms of Levothyroxine, after a few days adjusting, I had the best four weeks for years then dropped off again. I was once again experiencing fatigue, constipation, aches and brain fog and low mood etc - but not as bad as when I was left on the 25 micrograms given at start, when diagnosed August last year. I was under-medicated from the outset - I’m not over sixty and no heart problems. I was left on 25 micrograms until I became unable to function and suicidal (6 months later).
Only then did my regular GP seek advice - The Endo advised different ranges to consider my results against that allowed a TSH as low as 0.3.
So I’ve learnt the hard way and thanks to the contributors on this forum and advice given, I am in a much better place. I can now fight my corner against the appalling ignorance that exists in the NHS.
So back to the ‘consultation’.
I essentially brow beat this junior doctor into upping my Levothyroxine to 100 and I will work it out for myself. If I have to break up that last 25 micrograms as I have noted others do, I at least now have the slack to do it.
BUT the thing that really bothers is, had she had this conversation with a deferential “yes Doctor” patient who believes doctors all know what they are doing, even if that patient did feel unwell, the doctor could well have completely closed that patient down 😱. What aren’t they teaching them?
Should I raise a concern- not about the individual but more about a complete system failure- or am I wasting my time and setting myself up for a black mark on my patient records? (the bits we don’t see).
No it’s ok I already know the answer........
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Charlie-Farley
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Am glad you stood your ground. Im afraid many of us if not most of is have to do the same. The problem is three fold:-
1. Lack of training
2. Simplistic reading of test results so if in range everything is hunky dory -this applies to all blood test results. Being in range is not optimal!!
3. Reliance on TSH for deciding on treatment and dose. This approach has been proven to lead to under treatment.......which isnt good for your health and well being either.
What I do is always point them to the actual thyroid blood test results...these days it seems to be mainly ft4 and doesnt include ft3. Sadly there is talk of phasing ft4 out too....🙈🙈which is all about saving money nothing else. So I think in order to get optimal treatment we will all end up doing our own thyroid tests. Generally my doctors no nothing about thyroid blood tests so have boughed to my knowledge. I had to laugh my last blood test did show I was well over treated (effects of b12 jabs?) but GP said -all is fine! It wasnt! I lowered my dose myself. So you are right you are best to self manage and involve them as little as possible except for dose increase discussions.
So its vital we the patients are well educated on our thyroid condition and can use that knowledge when talking to our GPs to educate them........otherwise we will be left under treated and ill.
So keep fighting your corner. Commonly one feels well on a dose increase initially but then as the metabolism wakes up a bit more you find you need a further increase after 6-8 weeks, subject to blood tests. This cycle carries on until you are optimally treated and no further increases are needed as your metabolism has returned to its normal leve of functioning. Its slow and laborious finding that sweet point but worth it. Most GPs and sadly many endocrinologists dont understand this.....lol.
So true! She had a bit of a go at me at one stage and said I didn’t know what I was talking about, so I invited her to tell me all about it so she did the THS tells you your in range and free T4 essentially confirms it - then asked her why did I still have symptoms ? I asked her do you think it could be a conversion issue? And had she seen the full blood test (the private one) that showed antibodies were sky high?
‘Splutter splutter! ‘ came down the phone!
(Perhaps I may not be fully versed - but I am getting there)
Been there, discovered ( after c40 years of tests, treatments etc) that I have a type of thyroid hormone resistance, self medicate with supraphysiological dose of T3, recovered as far as damage already done has allowed, argued my point, proved my point....and I doubt that after all that they truly believe me.
It makes no sense, yet the medical profession persist in "flogging a dead horse' aka TSH.
Medics were more knowledgeable and open minded about thyroid disease a century ago when they relied on clinical evaluation not a list of numbers on a computer screen.
I'm now old, cynical.... and furious!
Without TUK I would now be bedridden (like my grandmother before me) or dead....with TUK I live to fight another day!
Yes! I totally agree. And did you see the post mentioned by Helvella above? - volunteers required I’m absolutely going to get involved with this hopefully we can help to inform future generations of medics.
Should I raise a concern- not about the individual but more about a complete system failure- or am I wasting my time .."
they teach them TSH range tells them all they need to know , (the only exception is central hypo , and that's so rare that they should not go looking for zebra's just because they heard hoof's unless they have good cause and that means further obvious symptomatic evidence of pituitary /hypothalamus dysfunction affecting other areas not just TSH result)...... that 's about it .... lesson over.
oh.... and "its simply treated with Levo, therefore any remaining 'symptoms' when TSH in range ,look for another cause", the most obvious being... you're too fat / you're too old / you're too female / you're too anxious about your health /you're spending too much time talking to militant thyroid activists on line.... "prescribe exercise / antidepressants "
they will be far too busy desperately trying to fill in the notes without going over the 10 minute appointment, to be able to hear you when you say your inability to sustain the exercise is precisely why you went to see them on the first place......
Should you raise a concern?.... it depends on what your blood test results were.... there's little point raising a concern if they are following their own (crap) guidelines... if that's the case then you are already doing the most effective thing which is learn enough about it yourself that you can keep things moving as efficiently as possible ,and avoid getting abandoned in a layby before you're getting the best result possible from Levo.
If they are not even following their crap guidelines then yes, you should raise a concern in the same way as any other instance of poor treatment .. for all the good it will do you. But poor/incorrect treatment should be flagged up to show the Dr's need for more learning on the subject, and to hopefully improve the service they offer to the next poor sod they encounter.
I do thing it's useful in the big picture for all of us to leave some record of what we see as the inadequacies of the current NICE guidelines for treating thyroid disease.... i've sort of done this by accident... when i did an SAR request for my historic records in relation to hypothyroid diagnosis and treatment, i put in a covering letter to explain i didn't have a problem with the treatment from any particular GP, but was seriously considering taking responsibility for the replacement of thyroid hormones into my own hands because i felt the current guidelines were not proving effective in my case. *Edit .... it turns out that this letter has been added to my notes . so it's there to see whenever any GP has a look at recent history.. but i bet they don't get time to look very often.*
Well done for getting the 100mcg , now you can do what you want with it.. make your own mind up whether to do 87.5 or go for 100 straight away.
That decision maybe depends on exactly whet your last set of results on 75mcg looked like, ie , how close to top was fT4 / how low was TSH /what's T3 looking like ...
Fingers crossed there is an improvement again and it's a bit more sustained this time .. i think that's sort of what happened when i was on 100, but to be honest it's so long ago i can't really remember... wish i'd taken proper notes at the time , i might have learned something useful.
You're already 'doing your bit' by educating one doctor at a time....onwards !
Having said that , the lack of the necessary question " how do you feel now ?" and the feeble replacement of it with "oh ..unless you've got anything to add" is not great.. and i do believe the current NICE guidelines for treating 'sub-clinical hypo' direct them to "get TSH back into range to see if this improves symptoms" ... so that does sort of imply that they are supposed to at least enquire if the symptoms have improved.......
Indeed! And there is a huge concern regarding those who are deferential and obedient unquestioning patients who will just crawl away into a corner and be ill. My Mum was just that sort of person. She could’ve had her leg falling off and if the doctor had told her it was just a scrape she would’ve quietly limped home having been sorry to be a bother - needless to say I took after my Dad! Lol!
And did you see the post mentioned by Helvella above? - volunteers required I’m absolutely going to get involved with this hopefully we can help to inform future generations of medics.
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