My Endo agrees it is a good idea to get these done but what is confusing me is the Antibodies. When looking through the recommended sites (i.e Medichecks).
The antibodies listed are Thyroglobulin Antibodies and Thyroid Peroxidase Antibodies.
My Endo says for him to be able to look at the results I need Thyroid Receptor Antibodies and Thyroid Microsomal Antibodies. I have found at the below link That Antithyroid Peroxidase Antibody (TPO Ab) is also known as Antithyroid Microsomal Ab.
Is the Thyroid receptor antibodies and TSH receptor antibodies the same thing?
Sorry if the way I have written this is confusing, I am very confused!
Also with regards to his recommendation of what he wants to change with my Thyroid medication. As a reminder my latest blood tests were
FT4 [11.0 - 22.6] - 10.80
FT3 [3.50 - 6.50] - 4.40
TSH [0.2 - 4.0] - 1.30
He has told me that FT4 level being under range does not matter, it is only the FT3 that matters.
I am on 75mg levo, 10mg lio (4 times daily). He said the only adjustment of medication he is willing to do is for me to up my lio to 10mg (5 times daily), as he would rather not push my FT3 any higher, but is willing to try a little bit. I know it was mentioned on my last post that somebody thought I should ask about raising my Levo, but he was unwilling to even consider this.
So I am a bit at a loss here as he feels my levels are good. Now he has found out I have psoriatic arthritis, he is also saying my Thyroid levels are showing low because of this and not because I am undermedicated.
Thanks in advance and sorry again for the long post!
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I am on 75mg levo, 10mg lio (4 times daily). He said the only adjustment of medication he is willing to do is for me to up my lio to 10mg (5 times daily), as he would rather not push my FT3 any higher,
No sure what you're saying, here. Are you saying that you're taking a total of 40 mcg T3 daily, and he want's to increase it to 50 mcg daily? And he thinks that that won't 'push' your FT3 higher? If so, I think the man is insane. In fact, reading through your whole post makes me think he's extremely unhinged and knows nothing whatsoever about thyroid. Why in god's name would he want to test you for Grave's when you're so obviously hypo? I know doctors have difficulty understand the difference between Grave's and Hashi's, but that is just rediculous!
Or, are you saying that you are taking a total of 10 mcg divided into 4 doses? Well, that does smack slightly of the unnecessary, but still... And he now wants you to divide it into 5 doses? And he calls that an increase? I'd love to know what difference he thinks that will make. lol
So, perhaps you could clarify that point?
Another thing I don't understand is why he doesn't want your FT3 any higher. It's not even mid-range, and most hypos need it up in the top third of the range. That and the fact that your FT4 is below range, makes me think he is determined to keep you under-medicated and sick. I think the thing you most desperately need is a new endo!
Yes, I'm on 40mg daily and he is going to up it to 50mg daily.
No, he thinks it will push my T3 higher which is why he said he doesn't really want to do it as he sees my current level as optimal.
The antibody tests were recommendations from on here not from my Endo but when I asked him about them he said that yes I should get them done if I want to know where I am at. Basically, I've been told for years by my GP I have graves disease, not there seems to be no documentation of testing. I say I'm graves, because that's what I've been told, but in actually fact I have no idea.
I would love a new Endo but the NHS ones I've had always refused any T3. And just put me drastically up and down with my Levo. Up 50mg, down 50mg, up 100, down again. Up again...
Yes, I'm on 40mg daily and he is going to up it to 50mg daily.
He's insane! You don't increase T3 by 10 mcg at a time, especially not at your level. He just has no idea what he's doing. You increase T3 by 5 mcg at a time.
And how can your FT3 possibly be optimal when it isn't even mid-range. That's not even euthyroid, let alone optimal for a hypo - hypos need higher levesl of FT3 than euthyroid people.
Basically, I've been told for years by my GP I have graves disease
It gets worse. How can you have Grave's disease when you're hypo? Grave's disease is suppressed TSH and very, very high FT4/FT3. Were you really told by people on here to test your Grave's antibodies? Or was it your Hashi's antibodies?
Ok, do you think 10mg is going to push me too high? Increasing T3 by 5mg would actually be a massive struggle for me as the 5mg lactose free tablets became unavailable, so all I can actually get is 20s which I already chop in half. I don't think it would be possible to chop them into quarters.
I was Hyper originally, which is why I presume is why I'm being told graves by the NHS. I was never told graves to begining with, I was simply told I was Hyper and nothing else. I was advised what foods to avoid etc.
Once i has the Radioiodine treatment, obviously i switched to Hypo due to my thyroid being killed. But other than being put on Levo, I was just discharged and never given any more advice.
It was only when I started seeing the Endo, six years after the Radioiodine treatment that I first heard the words Graves Disease.
It was on here the antibody tests were mentioned to me, but wasn't graves or hashimoto's, I was just told Thyroid antibodies so have since been looking up the different tests on the sites recommended then spoke to my specialist about them.
Most people manage to cut their 20 mcg tablets in quarters.
No, I don't really think it will push your FT3 too high, but it might be too much of a shock to your body to increase by that much in one go. That's the reason we only increase by 5 mcg at a time.
Ah, so you had RAI! You didn't say that. So, not much point in testing antibodies if you don't have a thyroid. It really doesn't matter much if you have them or not as you don't have a thyroid for them to attack.
To he honest the Teva tablets dont always successfully cut in half, they tend to crumble and one side is bigger than the other.
Do I 100% not have a thyroid? Is there a way of knowing this? As when I had the RAI, I was told it could either kill or damage my thyroid. But then I was never told one way or another, just here take some Levo.
The Endo I had while Hypo was much more helpful and would go through the ins ans outs, foods to avoid, explain things. But after the treatment I was just sent back to my GP and not told anything except take Levo.
Sorry if these are stupid questions but I have never been told much at all.
No, they're not stupid questions. But, even if you have some thyroid left, it won't be producing any hormone now that you're on that large dose of thyroid hormone. The only way to find out for sure would be to stop all thyroid hormone, wait for six weeks and retest. But I wouldn't recommend you do that.
If by some chance, you did have some thyroid left, and it was functioning, your levels would be a lot higher in a blood test. Considering the amount you're taking, your levels are actually very low. Do you always take your T3 on an empty stomach, well away from food and other medication/supplements? I really don't see how anyone taking 40 mcg T3 can have their FT3 below mid-range.
Ok, that makes sense. The reason I was considering the antibody tests is that for the last year I've been looking up what foods to eat/avoid based on being told I have Graves and I'm really trying to sort my diet to help as much as i can. I eat very healthy anyway, but I was looking into foods that particularly work well with Graves, which now it seems is not what I needed to be doing.
Yes, both my T3 and T4 are taken well away from food and other supplements. The only time they are taken with anything else is with each other, the first dose of the day.
I honestly had no idea there were food you should and shouldn't eat with Grave's. I would be interested to know more.
But, in any case, you are now hypo. And, don't seem to be absorbing your T3 very well. It's possible you have low stomach acid - most hypos do. Have you had your vit D, vit B12, folate and ferritin tested?
I haven't had the vitamins tested, I wanted to get everything tested at one time so I have a baseline of where I am at. That is really what this post was about. Finalising exactly what I need to get tested so I'm not wasting money I don't have on too many tests.
OK, well, the cheapest way to do it is to get one of these bundles of tests:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit d
vit B12
folate
ferritin
These bundles always contain Hashi's antibody tests, though, I'm afraid. Or, maybe, do two different ones - one for thyroid and one for nutrients. But, basically, those are the tests you need.
Oh for the love of God!! (Eyes are rolling so hard right now! 😂) these ‘gods’ of the medical profession are just winging it! They haven’t a clue!!
Absolutely do not increase your T3, try increasing the Levo first and sorting out Bits and minerals and possibly low stomach acid.
I don’t see how your T3 is not higher in range with the combined dose, so somethings up but I’m not sure an increase in T3 is gonna work right now. It’s not absorbing?
I don’t know how you’ll get through to him though, the arrogance just knows no bounds !
I would say ditch him but how else are you going to get T3? I wonder if you can use him as your dealer but get your own Levo and blood results. Is there a way to play the system? Leave of Levo a week before he tests you but have your own tests so you know where you are? I dunno I’m just thinking out loud 😬
Unfortunately he outright refused any more Levo as he believes on my T3 matters. If I could get a new Endo willing to prescribe T3 I would leave him in a heartbeat, but as we all know. Finding one actually willing to give T3 is rare, although it seems this one is all about the T3.
He believes that it isn't a case of I'm not absorbing it, just that my ranges are showing lower than they are in tests due to psoriatic arthritis. I haven't managed to look into this yet, but at this point I'm taking everything he says with a pinch of salt.
I am in the process of trying to get back to see my original Endo when I was overactive. Who seemed really good, but who knows if he is for or against T3.
Why can’t we have an Endo that’s just competent all round?? I mean loads of us would love to hear the words ‘T3 matters’. But then he goes and blows it all by continuing to talk! Lol
I think the issue is that I have never come across and Endo who actually sufferes with Thyroid issues. If there were more with the condition trained I'm sure things would change, but each I've spoke to have never had to deal with how it feels to be this way.
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