Well...It's been quite a journey but I've been finally diagnosed with Thyroid Antibody Resistance.
It's been a 15 year slog but at least I know now and I've been told my only option is to find a level of Levothyroxine that makes me 'feel' better or not.
I've been on a constantly changing dose for the last three years and in that time my results have swung between hypo and hyper and so have my symptoms and my blood results have had little to do with my dosage and just don't make sense.
In short, my medication doesn't work on me.
I've tried over the years to gain an understanding of Hypothyroidism but now it's taken a turn onto a genetic level which is WAY over my head.
I'm left feeling that I may as well be taking Tick-Tacks every morning.
I was hoping that a diagnosis may identify how I could make things better in a "glass half full" kind of way but I'm feeling a bit stuffed and at a dead end now.
I'm posting this not to necessarily get advice or even to moan as there are worse off than I but maybe writing a message in a bottle may help me get my head around it?
Ah well. UPWARDS AND ONWARDS!
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scotty1969
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OK, so I've just reread your other posts and it really doesn't sound like your doctors have the first idea what they're doing!
Did you ever ask for that print-out of your results, as everyone advised you to do? Did you ever work out if they were dosing by the TSH? Because it all sounds like rubbish, to me! It really is time you stopped trying to be 'bros' with your doctors, and started taking charge of your health.
As for things taking a 'genetic turn', just sounds to me like they're trying to blind you with science having latched on to the fact that you don't know any more about it than they do, and will just swallow any old guff! lol
Time to get down to hard facts: you need all your medical records from the time you were 'diagnosed' to find out exactly what's going on.
I'm not sure that you have been correctly diagnosed. If you are not getting better on T4 you should at least be offered a trial of T3 by an endo. I've never heard of thyroid antibody resistance before, only thyroid hormone resistance. If you have thyroid hormone resistance, there are treatments for this other than T4. I am wondering if you are being fobbed off.....
Agree with the other replies - the name is wrong. (Not meaning to get at you if it is your simple typing mistake. But if that is what they have said, I simply do not believe it.)
I think you might find the preferred term for Resistance to Thyroid Hormone is "Impaired Sensitivity to Thyroid Hormone". A whole chapter here:
It is a very heavy slog to read - so I am not suggesting you dive in and read start to finish. Just highlighting one of the few decent sources of information.
It might be me that got the name wrong but I'm sure there was "antibody" in there but apologies if i made a mistake.
Maybe that was his mistake?
I am feeling totally blinded by (medical) science at the moment.
I AM going to get those result records though from my GP for sure and you're right, I do need to take the upper hand.
Thing is the Endo does seem to be pretty pro-active and I'm waiting for extensive blood results to come back from both Nottingham and Birmingham and I've also had some sent to Addenbrookes Hospital for genetic screening.
I asked if either test could tell me conclusively what was going on but the answer was "no".
He explained my results of having two possible causes and in his words:
"Either you're not taking your medication and then taking a bucket load before having your bloods tested or you're thyroid resistant. Any Endocrinologist would tell you the same".
This morning when I posted I was feeling pretty fed up and disillusioned with it all after attending my quarterly appointment yesterday and expecting to come away with an answer one way or the other.
It was 15 years ago when I first went to the GP suffering from fatigue and only diagnosed 3 years ago despite many many visits.
I can't even work regular 9-5 to support my family now because of it and I was even getting palpitations from all the caffeine tablets I was taking to get me through a work day.
I do consider myself to be fairly intelligent but my poor understanding of the condition limits my argument with a "professional Endocrinologist" despite reading up on the subject.
It does seem that I need to become an amateur Endocrinologist to get anywhere though.
Anyway, enough of my feeling sorry for myself.
I think I know what I need to do now so thanks for the words people.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Honestly, I think you’re being told nonsense, but sadly your GP probably believes what he’s saying! A sorry affair...
I think it’s much more likely they’re trying to dose you according to TSH, and so when it dips below 0.5 they panic and reduce your dose, then find the next time it’s too high and raise it again. So so so many doctors have absolutely no idea that TSH is not in the least bit useful for figuring out how much levothyroxine you should be on.
Go to your GP surgery, ask for a print off of your results (they cannot refuse - you have the legal right, though they may ask you to pay for the cost of the printout). Then post the results here and let us have a look....
That's exactly what my GP was doing and hence why I got re-refered back to the Endo.
It's the Endo who reckons I have the resistance.
As an 'expert' I've put my full faith in him so had no thoughts of doubting him.
Maybe I've just been completely naive?
I'm in awe of the knowledge that is shown by you guys on this forum and I wish I had even a fraction of your understanding and coming on here I feel rather inadequate in comparison.
For me it's like going on a car mechanics forum and not knowing which end of the car goes forward.
When you all talk "TSH, FT4, FT3, TT4, TPO" it's like a foreign language to me.
"Then post the results here and let us have a look.... :)"
Are you sure that would be okay?
It's something I'd greatly appreciate and it maybe a step towards me understanding them as to me they're just two rows of numbers in red and green which is an indication of the level of my understanding.
You must all think me SO ignorant but I think it's sadly the case.
Of course. On average, we have a go at interpreting blood test results at least once an hour, and during the evenings, lots and lots of them!
And honestly, it’s not that hard, once you’ve done a few.
Basically, TSH is irrelevant - only useful at the point of diagnosis. Once you start taking levothyroxine, it’s not very much use at all. Unfortunately, doctors have been trained to believe it’s a highly sensitive marker, and it isn’t.
You mustn't feel inadequate, none of us were born knowing all this, we've had to learn, through necessity.
So, to start you off, here's a little explanation of thyroid blood test names, that I wrote for someone else, the other day :
'TSH - a pituitary hormone, that rises when thyroid hormones are low in the blood, and decreases as blood levels rise. It is essential for diagnosis primary hypo, but doesn't tell you if you have Central hypo.
FT4 - thyroid hormone. T4 is the storage hormone that has to be converted into T3, the active hormone. And the test you need to measure that is the Free T4, which is the form of T4 available for use by the body. TT4 (Total T4) is of no use whatsoever.
FT3 - thyroid hormone. T3 is needed by ever single cell in the body. Some is produced by the thyroid, but most comes from conversion from T4. As not everybody converts very well, it is essential to test it along with the FT3, in order to see how well you convert. As with T4, it is the Free hormone that needs testing, not the Total.
TPO antibodies - if these are over-range, it means you have Hashimoto's Thyroiditis - or Autoimmune Thyroiditis, and UK doctors prefer to call it. And, there's no ifs or buts or maybes, if they are elevated, you have Hashi's, so don't be put off!
Tg antibodies - these can also be over-range when you have Hashi's. Or, they can be over-range when the TPOab are within range, but it still means you have Hashi's (although they can be elevated due to other things). The NHS 'believes' that it is rare to have raised TgAB, with normal TPOab, so therefore refuses to test the TgAB when screening for Hashi's. They are wrong!'
Hope that helps a little bit.
And, remember, just because the endo is 'pro-active', doesn't mean he knows what he's doing.
"Either you're not taking your medication and then taking a bucket load before having your bloods tested or you're thyroid resistant. Any Endocrinologist would tell you the same".
He's probably right, there, because very few endos have any knowledge of thyroid, they are mainly diabetes specialists. However, there is a third explanation, and that's that your doctor has been dosing by the TSH! And that's what happens when doctors dose by the TSH. The fact that he doesn't know that, does not speak in his favour!
'I asked if either test could tell me conclusively what was going on but the answer was "no".'
Which rather suggests that he's not doing the right tests!
No-one doubts that you are intelligent, but this is all coming at you at once, and - as I said - I think your endo is trying to blind you with science. They take advantage of us in that they believe we know nothing about it, because we haven't been to med school, so they can just make it up as they go along, tell us any old rubbish, and we'll believe it all! Well, up to us to prove them wrong! You'll soon get the hang of it, don't worry. And then, you'll be able to inform them where they're going wrong!
If you have Thyroid Hormone Resistance (not thyroid antibody resistance) you can only improve by taking Liothyronine alone i.e. T3.
I am not medically qualified but if someone is Thyroid Hormone Resistant, they can recover their health by taking T3 only. Some need high doses and I will give you a link. The doctor was Thyroid Hormone Resistant and he stated that those patients who were would have, usually, to take very high doses to resolve their symptoms.
If you are in the UK, I doubt anyone recognises or is au fait with Thyroid Hormone Resistance. As the medical profession seem to have only the very barest knowledge of hypothyroidism, (it seems to me and many on the forum), then it might be a long slog.
Dr Lowe was an Adviser to Thyroiduk.org.uk before his untimely death but there are other topics at the top of the page which may interest you. Some links within may not work.
My T4 to T3 conversion rate is 0.16-0.20. Midgley defines a poor converter as <0.23 (below 0.23). I calculated my conversion rate by the calculation fT3 ÷ fT4, when on levothyroxine only. TakingT3 meds distorts the result.
Unfortunately, I realised that it was 4 years old after I'd replied! I wouldn't have known about it 4 years ago though. However it might help someone else.
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On the right track? I've been researching and it's complicated!
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