1. I got some great advice here about the blood levels needed for treatment of hashimoto's, ie T4 should be the higher end of the range and TSH should be <1. Now all I need to do is convince my GP as I am only 50mcg and nowhere near these (at the moment I am TSH 7.23 and T4 13.5)! Can anyone recommend any books or papers which refer to these levels, so I can arm myself with the necessary literature to try and persuade my GP?
2. It also seems like the NHS lab which does the testing is 'guiding' the GP about my dosage: I noticed that the lab had written on my blood test results 'marginal under treatment' so the GP increased it to 50mcg. Does anyone know if GPs have to follow this advice or can they treat at their discretion?
Any help would be much appreciated, thank you.
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Agapanthus1
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Kate64, You probably won't need to substantiate a request for a dose increase. TSH 7.3 is patently too high. If you do need to, show your GP Treatment Options in thyroiduk.org.uk/tuk/about_... or email louise.warvill@thyroiduk.org.uk for a copy of the Pulse article and show it to your GP.
Dose increases are usually in 25mcg increments every 6-8 weeks so you'll almost certainly need to be on 100mcg before TSH nears 1.0 and FT4 rises into the upper range.
GPs can use their discretion about following advice on lab reports but it wouldn't bode well for a GP who refused to increase dose when the lab report says the patient is undermedicated.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
A follow up to my earlier posts....ok so my worst fears have been confirmed! My GP does not know the guidance about ranges and levels for treating Hashimoto's. My antibody count was very high and after 25 mcg for 6 weeks my results were TSH 7.3 and T4 13.5. I went back to see him today after being on 50mcg for 6 weeks (and feeling no different whatsoever), thinking he would re-test and then increase the dose, only to be told that treating me for hypothyroid was 'a shot in the dark' and that 'we may never get to the bottom of what is causing my symptoms' (all of whihc are classic Hashimoto's symptoms)!!!
I was so gobsmacked I could barely speak as this goes against everything I have read and been told about hashimoto's. But how can you tell a GP that they are wrong? I think I managed to say something about Toft's advice and he prescribed 75mcg and told me to get my levels re-tested after 6 weeks. He seems to think my symptoms are just a relapse of ME which I have had for many years, although I have thyroid antibodies and severe pernicious anaemia, and I was iron deficient! It was me who suggested testing for pernicious anemia and I tested positive, withan all time record low level of b12 of 30 and neurological symptoms which he missed. (I bypassed him on this one and got brilliant advice and support from the b12 deficiency charity and self-treat according to thEir protocol for this, which I think has probably saved me from having permanent damage.)
So, am I going mad or have I misunderstood the guidelines for treating hasimotos? I am feeling absolutely distraught about today and don't know who to turn to or what to do next. I just know I can't go on feeling this bad for much longer...
Kate64, Levothyroxine treats the hypothyroidism caused by Hashimoto's. The goal of Levothyroxine is to restore the patient to euthyroid status which for most people is when TSH is just above or below 1.0 with FT4 in the upper range. Your GP has increased dose and wants to retest in 6 weeks so he is treating you correctly even if he doesn't recognise that high TSH and low FT3 is causing your hypothyroid symptoms.
There is no treatment for Hashimoto's but adopting 100% gluten-free diet may reduce Hashi flares, symptoms and antibodies.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
I know what you mean; it just feels such a struggle without a supportive GP. Thank you so much for your reply. I am pretty much gluten free now and am cutting out sugar. Its hard but worth it, I'm sure 😊
Kate64, even small amount of gluten can cause reactions. If you want to see whether there are benefits you need to be 100% gluten-free for at least 3 months.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Ah bless you, Clutter, your reply as always is extremely helpful and has eased my mind. I have the pulse article and will try and get the Toft book, which I understand the ranges are in? Fingers crossed that will be enough.
It all feels such a struggle, and such a long time to wait to start to feel better, but I do understand the dangers of taking too much thyroxine and suspect my GP is probably being cautious as I have some cardiac symptoms. Although, I must confess, I have considered putting it up myself to 75mcg but don't want to damage the relationship with my GP. It's just desparation on my part to feel a wee bit better...😊
Kate64, I doubt you'll need to twist your GP's arm, it's plain enough, and pointed out by the lab report, that you are undermedicated. Cardiac symptoms can be caused by undermedication. Hopefully they'll improve as your dose is increased and your thyroid levels improve.
Thank you so much. I have just been reading your profile and am so sorry to see what a tough time you have had, so I apologise if I it seems i am moaning.
Kate64, It was tough then, but I've been well for almost 2 years now, and although it isn't forgotten, it is pretty much back of my mind now. No need for apologies, you're suffering now, and you need support and help until you feel better, which I hope won't be too long.
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