I was slightly out of range last test but have been feeling quite well. GP insists on a blood test and I'm worried they'll reduce me down if still out of range.
I know it takes about 6 weeks for dose changes to take effect so am holding off as long as I can before next test. Thinking of cutting down before next test and hopefully numbers will be right but not entirely happy at having to do this. Wish they would just leave us alone when we are feeling well in ourselves.
I know not to take my levothyroxine on the morning of blood test and always try to book an early appointment before I've eaten. Anything else I can do?
Would it make much difference if I reduce by 25mcg per day say over the next 3 weeks? Although I suspect I will make myself feel hideous in the process but hoping they will leave my dose alone and won't need another test till next year.
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Syd35
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What was out of range? TSH or FT4? And was it over-range or under-range?
The earlier you have the blood draw, the higher the TSH. If you want to stop your levo to affect the TSH, you'd probably have to do it for a couple of weeks, because the TSH doesn't move very fast. And, I don't think that's a good idea.
If you're talking about an over-range FT4, you'd just have to leave it off for 48 hours to bring the level down.
I was in a similar situation. My TSH was below range and my GP felt he had been “too aggressive” with my treatment and wanted to lower my dose to 50 mcg😟. I was on 62.5 mcg levo daily! I told him I felt better and didn’t want to reduce. He agreed I could stay on that dose but needed to repeat the blood test. I decided to delay the NHS as far as possible and in the meantime do a Medichecks test so that I would be forewarned and even possibly have some ammunition if the test came back with a favourable result.
I was fortunate in that both the Medichecks test and subsequent NHS test came back just in range and my GP decreed “normal, no action”. The blood tests do vary over time so maybe you will be lucky too, especially as you say you were only slightly out of range.
I will be due an annual test soon and hoping they will forget me, otherwise I could be in the same boat as you, wondering again if there is any way to affect the results of my blood test.
I do regular Medichecks blood tests following any increase in dose and would prefer to carry on doing so. How we feel is obviously very important but GPs don’t seem to accept that.
Hopefully someone with more knowledge than I will be able to tell you whether reducing your dose temporarily will give the desired result. As you say though, you risk feeling quite ill; we really shouldn’t have to resort to such a step but I too have considered it. I hope someone comes up with an answer to this predicament.
If you're GP starts getting jittery about out of range results, ask if he has tested your T3. It may be, like me, your T3 is perfectly normal while T4 and TSH are out of range. My question to any GP who refuses to test my T3 is simply: how can you make important decisions about my health without having full information, and T3 level is, possibly, more important than the other two measures. At last test my TSH was 0.005 and my T4 about 8 points about the range, but my T3, 5.8, entirely normal and within range, and I feel well.
It is not appropriate to be monitoring and dosing people on only a TSH blood test.
You need to see where your T3 and T4 sit in relation to the TSH and if autoimmune the chances are your TSH needs to be low / suppressed to give you a good quality of life.
Sadly, this doesn't happen and sadly you feel anxious, you just want to be well, and feel you need to be underhand and try and " fiddle " your blood tests results.
It doesn't make for a good, open, honest, transparent, relationship, does it ?
I fell into the same situation, and being told I was over medicated and to drop down my dose of T4 when my T3 showed 5.8 - and this was in a letter from the hospital.
I was also refused a trial of T3 in the next letter - I'm with Graves Disease post RAI 2005.
I have now taken myself out of this circus and am self medicating. I know, it's not for everyone but it's the only way I can go forward and am getting my life back, by myself.
Hi pennyannie, you have really summed it up to a tee!
I did have my T3 tested last year and it was sitting in the normal range at 4.7 (4-7). T4 seems to stay stable at 18 (10-25). TSH was 0.19 (0.55 – 4.78) in February and they weren't happy about that despite me telling them I was feeling the best I have in a while. Shame my lovely old GP retired as he went by how I was feeling more than the results. It's like banging your head against a brick wall isn't it.
By the way I don't even think my dose is even that high for Hashimoto's I am prescribed 125mcg per day but admit I have been alternating 125/150 for a while but will drop down to 125 over the next few weeks before next blood draw hopefully get the numbers where they want it to be then titrate back up again if I start to go downhill.
Well, having my thyroid ablated in 2005 I was only ever dosed on 100-125 T4 because of my TSH - which resulted in my becoming very unwell some 5 years ago and being called a conundrum.
It's a known fact that Graves patients will have a low, suppressed TSH and with my feedback loop broken and being without a working thyroid - the TSH blood test means diddy squat.
I've only learnt all this through this amazing website when I joined a couple of years ago.
I'm now taking NDT and getting on ok, no blood tests, no need to go see a doctor, thank goodness I have no other health issues to contend with.
I agree. I have no thyroid and my endos only care about the tsh and because Im on AT and combo t4/t3 prior my tsh level drops very low and the endos panic and take no consideration for other health issues /medication use.
I just did a spread sheet with all my thyroid doses and test (tsh,t3,ft3,ft4 and one time reverse t3) and I suspected for a while that my immunosuppressive drug might be messing with my thyroid levels but I could not get these endos to even consider this could be possible...anyway I had TSH levels that fell within the endos magical range between 2 and 4 (0.27-4.67) and shortly after starting back up on immunosuppressive drug my TSH fell out of range along with my ft3,ft4 which prompted the endos to keep reducing my meds that has resulted in massive joint and tendon issues. I tried the delay med tactic, don't eat prior, test early and still my number drop even though thyroid dose is the same...I think I've been under medicated for a very long time because they can't see that something is off....what to do.
Yes, it's truly disconcerting as there is no joined up thinking anymore.
I don't know your answer, but mine has been to stay away and self medicate, as I'm fortunate not to have any other medical issues needing me to need a doctor.
It's ironic really when you think of it - I'm not going to the doctor because I'm not well enough yet to put up with the dogma and walk away unscarred.
I am not qualified but from what I have read on this forum and online over the years, we tend to feel better when the T3 is at the higher end of the range. As I do not get treated for my hypothyroidism on the nhs I am not bothered by a GP’s ignorance, and fear of the GMC, of the condition and therefore have no use for ‘ranges’. To qualify that, I take T3 only and therefore any blood tests for tsh would be meaningless. I do have private tests done from time-to-time; my tsh is unmeasurable low, as I’d expect. My T3 is at the top of the range but I medicate on how I feel and I have Thytoid Hormone Resistance so need a high dose of T3. I also do not convert T4 to T3 so levothyroxine treatment makes me very sick (nhs treatment of choice). The slavish adherence to ‘being in range’ is keeping thousands sick; any background reading will tell you this. From personal experience ‘being in range’ for tsh tests meant that it took 30 years to diagnose my hypothyroidism and lost me a good part of my life as a result. Had I been a member of this forum I could have saved myself a lot of grief. At least I turned down the antidepressants, not being depressed.
Thanks. Yes I've had the comment about the possibility of depression. I too declined ads as I know full well when the thyroid is out of whack it makes you feel low it's not the same as being depressed. Sounds like you've had quite the journey yourself, glad you are feeling better. I trialled T3 but it made me feel worse.
I reduce mine by 25mg two days before and then fast on the morning and do not take any tablets until after the blood is taken usually before 10am and immediately go back to normal tablet level after the blood is taken. I find that fasting and abstaining from tablets on the day helps to get a better reading.
Had a second blood test this time due to forgetting to do what I told you so should have the results tomorrow or Tuesday. My method has always been successful so far. The doctors always like to keep us under prescribed but if I go to the hospital as I have a few times over 30yrs of Hypo. The first question I am asked is are you ok on that level of thyroxin and they want to put it up, then the doctors take it down with arguments from me I have never won.
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