Antibodies and Hashi diagnosis

[raglansleeve]

I saw this on a recent post and have a question about antibodies. I have only been tested once, but my endo says I have Hashi's, despite my antibodies being in the "negative" range. I had thought that I'd read somewhere that ANY antibodies found indicated a diagnosis, but the attachment here seems to indicate otherwise. If I do have antibodies (I had both thyroglobulin and thyroperoxidase measured), but they're in the negative range, does that mean that I have Hashi's or not?

[greygoose]

If I do have antibodies (I had both thyroglobulin and thyroperoxidase meansured), but they're in the negative range, does that mean that I have Hashi's or not?

One negative result does not completely rule out the possibility of Hashi's. Everyone has some antibodies, but it's when they're over-range - or very close to the top of the range - that you definititely do have Hashi's, but you can prove a negative, as it were.

Antibodies fluctuate all the time, so they might be negative in the first test, but postive in the second or third.

Also, some Hashi's sufferers never have over-range antibodies, and are diagnosed by an ultrasound of the thyroid. Have you had an ultrasound?

Be interesting to know on what your endo bases his diagnosis if your antibodies are in-range.

[raglansleeve in reply to greygoose]

When I had my second endo appointment in the summer of 2020, I asked him if I had Hashi's and he said that all hypo patients do (yeah, I know, crazy!). This is the ultrasound report from October of 2020, which I was told was normal. Do you agree?

Ultrasound Report

[greygoose in reply to raglansleeve]

Well, so much for the endo! lol

Yes, that does seem normal, but it depends how long you've had Hashi's - if you have it - and how much damage has been done, for it to show up on the ultrasound.

[raglansleeve in reply to greygoose]

The ultrasound was described as a "baseline", so I guess that I should get a followup soon to see if things have devolved. I was diagnosed subclinically in 2017.

[greygoose in reply to raglansleeve]

Yes, it would be good to get a followup scan.

Just ignore the label 'subclinical'. All it means is that your doctor didn't want to diagnose you!

[raglansleeve in reply to greygoose]

This may sound crazy, but I've wondered if I have hypo at all since my GP diagnosed me with "subclinical" hypothyroidism, because it wasn't very high at all at diagnosis. I had one TSH test at 5.39 (.32 - 4.0) when I went in because I had full body neuropathy and my GP tested for B12 deficiency (I was deficient big time), and he checked my TSH too. A month later it was 4.73, and that was before I started on 25mcg's Synthroid (he just wanted a follow up to see if the 5.39 had been an aberration). After that, until I started on Cytomel as well, it ranged from 2.8 - 4.2, and with the Cytomel, down to below range. After being referred to an endo, I was also diagnosed with vitamin D deficiency, and supplement that now, along with B12. My B12 improved, but I haven't had a D test again (been supplementing for about a year now), and always wonder if I have hypothyroidism at all, or if all of my issues can be attributable to vitamin issues. I am now on 88mcg's of Synthroid and 10 Cytomel, and while my TSH has dropped, my Free T3 and Free T4 have never moved at all. They have been tested about 6 times each over the course of the last 4 years, and the results are always identical (within 5%). I would have thought that each increase in hormone replacement would have lifted those two numbers up (I'm sitting at about 56% through range on T3 and 15% through range on T4).

[greygoose in reply to raglansleeve]

Oh, trust me, you are hypo.

A euthyroid (i.e. someone with no thyroid problems of any kind) is around 1; never more than 2, at 2 your thyroid is struggling; at 3 you are hypo.

The medical profession use the term 'subclinical' erroneously, where thyroid is concerned. It means: out of range but with no symptoms. But that is assuming the range is correct. With the TSH, it isn't. It's far too high at the top end. And, presumably you had symptoms, and that's why you went to the doctor in the first place, no?

In many countries, you would be treated when your TSH got to 3. It's only in the UK - and Canada, I believe - that they like you to suffer until your TSH reaches 10! By that time, you are very hypo.

Your nutrients are low because you are hypo, and being hypo means having difficulties digesting and absorbing nutrients. I very much doubt all your problems are down to your deficiencies - although they will obviously add to your symptoms.

As to your Frees not rising, well, that is surprising, I know. But, you're only on a very small dose of thyroid hormone. 88 mcg levo is not much more than a starter dose, it's not likely to do much for you. And, your FT4 is going to be lower when taking T3 than it would be on levo only, that's just the way it is. But it rather sounds like you need and increase in T3.

I think it happens to most of us, at some point or another, to doubt our diagnosis. I think that's just human nature - especially when the medical profession make light of our disease. I know I did. Due to circumstances I won't go into here, I came off all thyroid hormone and felt fine! And, miraculously, I managed to stay off it for six months! (That shouldn't have happened and I don't know why it did, but...) But, at the end of that six months, the symptoms started galloping back rapidly, and when tested, my TSH was in the mid-forties - it had only been 11 on diagnosis. So, there was no doubt about it, I was hypo!

[raglansleeve in reply to greygoose]

I really appreciate this post and now feel very confident about my diagnosis. I can't imagine how awful you felt with a TSH over 40! YIKES! Sadly though, I doubt that my endo will increase my dose because the last increase was like pulling teeth because he was so fixated on my under range TSH. I may have to see non-allopathic practitioner next. Sigh.

[greygoose in reply to raglansleeve]

Whatever it takes. They are all so ignorant, which is why I now self-treat. I just couldn't take the fighting with doctors any more. Life's too short as it is!

[raglansleeve in reply to greygoose]

Too true! On a self-treating, or changing things up with the endo front, how true is it that 5mcg's of a T3 supplement equals 15 - 20 of a T4 one? In other words, if I'm on a starter-type dose of 88mcg's of Synthroid, but am also taking 10 mcg's of Cytomel, am I not really taking about 123 mcg's of T4? I was thinking of trading off some of my T3 to appease the endo (since it is lowering both my TSH and T4 blood readings), for a higher dose of Synthroid. Do you agree with those conversion numbers, and if so, do you think that this is a possible solution? I'd really rather not try to source my own meds quite yet, if there's still a route open with the endo that will resolve my remaining symptoms.

[greygoose in reply to raglansleeve]

No, I don't agree. It all depends how well you convert T4 to T3. There is no set equivalent. And, taking T3 is absolutely going to lower your TSH and FT4, that's what it does. And, any endo that doesn't know that shouldn't be treating hypos.

Presumably, you're taking the T3 because you don't convert very well and need that T3 to be in good health. You really shouldn't be sacrificing your good health to appease the endo - and it probably wouldn't work, anyway.

If your endo doesn't understand these basic facts, he's never going to make you well.

[raglansleeve in reply to greygoose]

I am taking T3 because my endo said that it is a good drug and could help with my symptoms. I'd read here that many people tried unsuccessfully to get a prescription, so I thought that I was lucky. I then found out through the SPINA (??) app that I'm actually a very good converter, so I thought that I'd offer the T3 back so that my TSH would go lower and make the endo happy. At the same time I would request a higher dose of T4 and hopefully everyone would be happy then. If I offer back either half (5 mcg's) or all of it (10), I just don't know how much T4 to request in return. I still haven't resolved my symptoms (definitely improving though), and I don't want to go back to a worse place than I'm currently at.

[greygoose in reply to raglansleeve]

Oh dear. He really doesn't understand much at all, does he. If you convert T4 to T3 very well, then taking T3 isn't going to help. It would just be the same thing that your body is making, anyway. And, it's not a drug. It's a hormone.

OK, well, in that case, perhaps it's worth a try. But, there are rules about increasing/decreasing hormones. Levo should not be increased/decreased by more than 25 mcg every six weeks. T3 5 mcg every two weeks. And, you should only change one at a time. Difficult to say which you should start with without seeing your numbers: results and ranges.

But, if it's the low TSH that is bothering your endo, this is probably a futile exercise, because the odds are that the amount of levo you're going to need to be well is going to suppress your TSH, anyway. Although, that really isn't a problem in the real world, just in doctors' heads.

[tattybogle]

No, a small amount of TPO / TG antibodies that is well below the lab range is a 'normal' finding . Don't think i've ever seen a TPO or TG antibody result of '0'

Anything Over the range is a clear positive .

But there are records of people who clearly have autoimmune thyroid damage (seen as characteristic type of damage to thyroid tissue) on a thyroid scan , but are never found to have raised TPO or TG abs .. so not finding any antibodies does not rule it out.

To diagnose by scan ,the damage has to be severe enough to be seen, which may take years i suppose .

Unless there is another 'known' or suspected cause for someone to have developed permanent hypothyroidism, then the most likely cause would always be autoimmune thyroid disease. Even if you didn't find antibodies .

[raglansleeve in reply to tattybogle]

These are my antibody numbers. Should I perhaps ask to have them tested for again?

Antibody results

[tattybogle in reply to raglansleeve]

not much point. they are not borderline , they are clearly negative , and i think you had a previous negative result for both ?

Apart from the personal reassurance of knowing the cause of your hypothyroidism , having proof of Antibodies is only really useful for help in persuading GP's to start treatment with Levo while the TSH and fT4 results are still 'subclinical'.

If you have already been prescribed Thyroid hormone replacement , then there is no advantage to having proof of autoimmune disease.

Perhaps waiting a few more years and then getting another ultrsound scan done privately might be more informative ?

[raglansleeve in reply to tattybogle]

No, that was my only result. Makes sense that there is no need for another test though. Thanks for your input, it has been very helpful.