Hi I had a thyroidectomy and was on radio iodine treatment many moons ago and is on 175mg on thyroxine. As far as I can remember my levels have never been ok.
As u can see in 3 months there is a difference I've gone hyper to hypo. Before that last reading before that was in the middle of the pandemic and the tsh reading was sky high. 83.58 and nothing was done!!
I'm having a phone consultation on 5th July a whole month after my last blood test.
I have mix symptoms and not all the symptoms.
Should I be worried 😟
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Jacks4
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Been on 175mg as long as I can remember. The blood test was done at 7.10am. I'm not very good at taking my pills the same time every morning sometimes might forget. Also only been told recently I should not have them with my cup of tea in the mornings!!
Oops I thought i replied back last night.(brain fog)
It was a full removal twice can't remember why thou as 26 years . Then diagnosed with thyroid cancer and was in royal Marsden. All miraculously vanished
H.A.M.A (Human-Anti-Mouse-Antibodies) ... yes really .i don't really understand it properly but sort of like this: There are mice in the environment all over the place ,and some people just happen to have made these antibodies to them ,and some don't . ( don't ask me why/ how ..i have absolutely no idea lol , maybe it's like some people are allergic to pollen and get hay fever and some don't ?)
anyway some methods for TSH testing use 'something to do with mice ' in the process somewhere... and if people have HAMA ,and are tested using that method , the HAMA can interact with the test process and cause those tests to give false results ...usually at very whacky levels , like 'way off the scale' ...it's called 'lab interference '.
But if they redo the test using a different test process that doesn't use the ' something to do with mice' ... the they get a true result .
On the face of it , your latest Result of TSH 0.01 and fT4 31 [11-22] suggest you are taking too much Levo ..... BUT that explanation doesn't really make sense .. and you have this history of weirdly high TSH results in the past .. and your dose hasn't increased since your last TSH of 6.65 in Feb (which suggested you weren't taking enough Levo ).
Since you apparently have no thyroid of your own left to be making any make more T4 naturally ... so all your T4 is coming from levo... therefore i do wonder if something else is going on that is messing with your results .. ie possible 'lab interference' such as HAMA . or there are lots of other possible sorts of lab interference too , not just mice .
oh .. yes the 'tea with Levo' thing .... changing this to 'no tea with Levo 'may have a small effect of increasing the amount of levo you absorb , ie. giving the same effect as if you'd had a slight dose increase , but i wouldn't expect it to be possible that it made such a dramatic change to take TSH down to 0.01 from previous 6.
Shame we don't know what the fT4 was previously when TSH was 6 .
I wonder why they didn't increase your levo dose in Feb when TSH was 6 ? .. normally you would increase dose when TSH was over range ... perhaps they are looking at your previous history of oddly fluctuating TSH levels and scratching their heads too, just like we are .
p.s Your post said 'in 3 months there's a difference , i 've gone hyper to hypo' i presume that's just a typo and you meant to write 'hypo to hyper' as your high TSH in Feb was hypo .. and your latest TSH is low ~ 'hyper ' ( but 'hyper' is the wrong term really .. hyperthyroid means 'your own thyroid is continuously making too much thyroid hormone' , if the low TSH and High T4 is just coming from the dose of levo not the thyroid being overactive then you would really call it 'overmedicated' not 'hyperthyroid' ... obviously since you haven't got a thyroid anymore ... so you can't actually become 'hyperthyroid'
Apologies for such a scatty disorganised train of thought .. i woke up late, and just realised it's Saturday.. not Friday as i thought it was ... off to get some coffee and rush off to the post office before it shuts
wow thank u. I've learnt so much in the last 2 days then than I have in the last 26 years. The gps don't tell me nothing.
They did tell me in February they will see what my results next time and then might change my dosage. I think they have now realised they need to keep an eye on me.
I'm going to text them and ask for an appointment and not a phone consultation. So I can get proper answers and I prefer face to face!
I will definitely email but I think I will wait to see what my gp says on the 5th July.
All my previous appointments have been later on in the morning apart from this one I had only been up for 15 mins and the nurse had to wake my viens up and left a nasty bruise. I never bruise !!
I take multi vitamins but not regular and I think I was taking them the same time as my thyroxine with my tea . As at the time I thought this was OK!!
When it was 83.58 no test was done for 18 months and didn't get an apology they thought it was done in August 2021!!
These results show that your TSH is over range and shouting out that you are under medicated and not making enough T3 -
Your T4 is over range which says it's not converting well into T3 and the active hormone that runs the body because if it was converting well your TSH would be low in the range, and your T4 lower and likely i the range.
I wrote the above paragraphs misreading your TSH as 6.85 - but now understand it has swung again and at 0.01 - when you haven't a thyroid the TSH reading is pretty meaningless as there is no gland there to regulate and control anything.
You must be dosed and monitored on your T3 and T4 blood test results and we generally feel at our best when the T3 and T4 are balanced in the ranges at around a 1/4 ratio T3/ T4.
I have added a second reply below however the body of what I have written still stands - ignore the TSH and track on your T3 results - which I don't think we have.
No thyroid hormone replacement woks well until your core strength vitamins and minerals, those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.
Is there a T3 - reading and range further down on this report you have posted ?
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
T3 is said to be around 4 times more powerful than T4 with the average person needing to find / convert around 50 T3 daily, just to function.
The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, mental and spiritual well being, your inner central heating system and your metabolism.
Some people can get by on T4 only :
Some people find that T4 seems to stop working as well as it once did nd need the addition of a little T3 - Liothyronine with their T4 medication, making a T3/ T4 combo.
Some people can't tolerate T4 and need to take T3 - Liothyronine only :
Whilst others find they feel their health improve taking Natural Desiccated Thyroid which is derived from pig thyroids which are dried and ground down into tablets referred to as grains which contain all the same known hormones as that of the human gland.
Thank you - so just add, you TSH is now at 0.01 and your T4 at 31 - ok -
I think my initial summing up stands as the TSH is pretty useless once you haven't a thyroid - and you must be dosed and monitored on your T3 and T4 levels and we generally feel at our best when these come in at around a 1/4 ratio - T3/T4.
My TSH has been at 0.01 for years and with a T4 up and over 30 and I was very much hypothyroid.
I'm now taking NDT and am much improved though my TSH is still at 0.01 :
but my T4 is down at around 14 at around 20-25% and my T3 is up at around 6.80 100% -
Liothyroinine is T3 - and depending on where you live in the country you may, or may not be able to have this prescribed on the NHS.
Your own thyroid would have been supporting you on a daily basis with trace elements of T1, T2 and calcitonin, plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
The body runs on T3 - not T4 which is inert and needs to be converted into T3 by your body.
Your ability to convert the T4 - Levothyroxine into T3 within your body can be compromised by low levels of ferritin, folate, B12 and or vitamin D so I would suggest you get these blood test run and if your doctor can't run this full thyroid panel for you - there are private companies who can, as listed on on the Thyroid UK website thyroiduk.org who are the charity who support this forum.
It's called a full thyroid panel and includes, TSH, T3, T4 antibodies, inflammation and ferritin, folate, B12 and vitamin D as we need optimal levels to be maintained and then you simply start a new post with the results and ranges and you will be advised of your next best steps bck to better health.
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