I have hashi. Have been on 150mg levo & a few months ago the GP said I was over medicated & reduced it to 125. TSH=0.03, T4=17 & T3 =5.4. I had another blood test on 21st Dec. I've not been able to call for the results yet, but my request for it to go back to 150 based on symptoms was rejected and I've now only been given 100 with no call or explanation. Last time they only tested T3 and TSH so not sure what those on their own would actually tell them. Surely there is no way they can work out the relation between T3 and 4. My antibodies could also be through the roof for all they know*. My consultant said he thought I'd end up at 150 & that was over 1 stone ago (GP also wont listen to the fact that dose is related to weight).
* I'm not certain how the antibodies actually affect the other figures?? If someone could explain that to me please? I was only diagnosed with a problem initially because of antibodies. In May 2018 they were 46.2 - not too high. They didn't test T4 or TSH else at the time but in April 2018 TSH=2.25, T4=8.6 and then in July 18 TSH=2.19, T4=11.3.
So without the antibody figure I guess they wouldn't be treating me at all based on those readings? So how come they only test T3 & TSH now as to my mind they are useless on their own???
Thoughts please, thank you?
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Rufty10
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I'm not certain how the antibodies actually affect the other figures??
They don't affect them at all. Over-range antibodies are just an indication that you have Hashi's. Once you've had an over-range result, there's no point in retesting them, because antibodies fluctuate, but their level has no real bearing on anything. They tend to be highest just after an immune system attack on the thyroid, when they come along to clean up the resulting 'mess'. But, they can be high at other times, too.
The reason you got treated due to your high antibodies was that your doctor, realising you had Hashi's, knew that things would only get worse, not better. So, better to start treatment sooner rather than later.
As to your other results, I'm afraid they don't mean much without the ranges. Ranges tend to vary from lab to lab, so we need those that went with your results.
Thanks Greygoose. For all tests the ranges are:TSH
(0.35 - 5.50) mU/L
Free T4
(7.0 - 17.0) pmol/L
Anti-TPO Antibodies
(<9.0)
I' not sure about T3 because they aren't sending the results out or allowing to collect at the moment & they tested that the last 2 times. I think it's 3.1 to 6.8
Then they are breaking the law! You are leagally entitled to a print-out of your results, with all the details. But, your doctor does sound rather high-handed! He shouldn't be reducing your dose like that without any consultation. And, probably without any reason, either. He seriously needs taking to task!
My antibodies could also be through the roof for all they know*.
Doesn't matter if they are. It doesn't change anything - and certainly won't change your treatment. Once you have an over-range reading, you know you have Hashi's and that's not going to change, whatever the level of the antibodies. So, no point in retesting them.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
What vitamin supplements are you currently taking, if any
Ask GP to test vitamin levels BEFORE you will agree to any dose reduction in levothyroxine
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Appreciate the list. I am treating Vit D and B12 already. Ferritin was worryingly 'out' last time too and is being retested. I've not called them for the results yet because my Dad died suddenly at Christmas and that's just not made it onto the list of things to worry about yet.
What I really wanted to know, is how they can determine what dose I should be on from only T3 and TSH????? Thank you for commenting on that please?
Thank you, it's an awful shock.So you think I am right that by measuring only T3 and TSH they can't draw any conclusion? They also seem worried about ferritin as I noticed they were testing that again - but again haven't said anything to me.
I've not asked what the figures are for ferritin yet - wanted to check my logic on just testing T3 and TSH with you before phoning them. I am on weekly B12 injections and 5,000IU vit D a day so those levels are ok (last result on D = 115). GP wont test folate independently of B12 and B12 shouldn't be retested after treatment starts so I don't know about that.
Is this the TSH result that led to them just giving you 100mcg this time ?Did they do an fT4 or fT3 with it ?
it's very odd to reduce dose when TSH is over range, dose should be increased not reduced if TSH was 6.
(In reply to your previous question about what can they tell from just TSH and fT3 without fT4 ... they could tell if you were overmedicated, fT3 would be over range, and they could tell if you were undermedicated , TSH would be over range.
What they can't tell without doing fT4 and fT3 together is how much T3 you have in relation to T4, but a lot of doctors wouldn't be interested in that , and a lot of them would just do TSH without anything else, and adjust dose based on TSH Level, but this can sometimes lead to problems if they do not take the fT4/3 into account )
That's what I thought. I had gone up to 150 myself. But they only did TSH and T3 this time. I don't know what the T3 was as I just got a text about TSH. I have been trying to get them to dose me based on weight, but they are not interested, just numbers. ncbi.nlm.nih.gov/pmc/articl...
Well if TSH was 6.14 then increasing back to 150 from 125 is the right move. (or increasing to 137.5 if you ended up overmedicated on 150 last time, might be an idea ~ take 125 + half a 25 each day , or take 125 one day and 150 the next if you find alternate dosing doesn't bother you and you can do it without getting in a muddle with which day it is)
Even though they haven't told you what the fT3 result was , it's not going to be over range based on TSH of 6.14.
I can't see any good reason why they can't tell you the fT3 result over the phone , even in the current circumstances. However , beware of receptionists who don't understand the use of decimal points, or which bit is the result and which bit is the lab range!
But anyway ,you have very good evidence for increasing dose with that over range TSH result, and they have absolutely no case to reduce it to 100.
It's curious that they did an fT3 at all , some labs have a 'reflex ' protocol where if TSH is above range, it automatically leads to fT4 testing. And if TSH is under range it automatically leads to ft4 testing ,and if that is over range it then leads to fT3 test, to see if you're thyrotoxic, ie. to look for hyperthyroidism.
But other than that, fT3 usually has to ordered specifically , and even then a lot of labs will overrule the request if TSH comes back normal.
Perhaps GP asked for fT3 because your previous TSH was 0.03 ?, but even then you'd think they'd have asked for fT4 too.
I have sometimes had fT3 done by NHS but only because my TSH was 0.05 or less, and my fT4 was over range and they were obviously looking to see if i was overmedicated.
So it's odd that the lab still did an ft3 when the TSH result was 6.14 , which is clearly undermedicated rather than overmedicated.
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