Couple of questions about FT3 and antibodies - Thyroid UK

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Couple of questions about FT3 and antibodies

chihiro profile image
10 Replies

1)FT3: I have never had it tested and I am wondering if I should get it tested before I start treatment.

Quick background info:

TSH alwasy in normal ranges over the last 6 months 1.4(Aug), 3.4(Jan) and 2.4(March) Ranges 0.35-5.5

FT4 normally mid range except for January when it went down 13.4(10-19.8)

TPO ab now over 1000 (0-100) started at 92 in the autumn.

Symptoms mixed hyper and hypo, sometimes have only hypo ones, sometimes only hyper ones other times bit of both.

Got doctor to agree to trial T4 starting at a dose of 25.

I was going to start tomorrow but then wondered if it would be a good idea to have private blood tests before I start. Is it worth it or would I just be wasting my money? Any opinons welcome.

2) my other question is about antibodies. I have only had tpo tested as I was told I don't qualify for having the other antibodies tested (read too expensive) would it be worth to have the thyroglobulin one tested too? I got really confused when I was at the doctors yesterday. First he told me that 10-15% of the population will have high tpo ab and won't have an autoimmune disease which is fair enough I have seen it mentioned in several places but I suspect these individuals are the ones that don't have symptoms YET.

But then he said " you have high antibodies which means you will then either go hypo or hyper and develop what is called Graves disease" I thought that when you have antibodies you already have Hashi or Graves and the end result is going hypo for Hashi or going hyper for Graves. Is that wrong? Could I have Graves instead of Hashi? My symptoms do swing from hyper to hypo which I thought was a very typical thing of Hashi... I haven't really looked into Graves at all because when I came across Hashi I felt I probably had found what was wrong with me. Can you have high TPO ab with Graves as well as with Hashi?

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chihiro
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10 Replies
crimple profile image
crimple

I understood that high tpo= hashi's and your TSH has been up and down, a further sign of hashi's (even if it is in range) This happened to me and my antibodies were high in December. I have since started on a gluten free diet and my antibodies have reduced! I would feel very ill with TSH levels like yours. Mine has to be below 1.

I also paid for a private ultra sound scan which showed that my thyroid was severely atrophied. In my opinion if you want to feel better learn as much as you can from this website and the links they give you. Have a read about gluten and dairy free (paleo) diet. There is always someone on here can help you.

chihiro profile image
chihiro in reply to crimple

Thank you for replying crimple :) Does a severely atrophied thyroid mean you have had Hashi for a long time? You said you had a private scan. How do you go about having that? In the area I live in when I search for u/s I can only find heart ones or pregnancy ones....

infomaniac profile image
infomaniac in reply to crimple

I have very high antobodies too (my GP says she "doesn't think" I have Hashis!). People on here have always said I am probably Hashis but recently someone said that I have to have a goitre to have Hashis so now I'm a bit confused!

susymac profile image
susymac in reply to infomaniac

you dont have to have a goitre to have hashis!

You may have had one in the past or you may still get one but you dont have to. It depends on how well medicated you are and how soon medication was started. But hashimotos thyroiditis is an auto immune condition with or without a goitre.

infomaniac profile image
infomaniac in reply to susymac

Maybe I misunderstood (I can't find the post now) but someone on this forum seemed to imply that to have Hashis you had to have a goitre, and I was quite pleased to finally have a definite answer...shame it's wrong!!

HarryE profile image
HarryE in reply to infomaniac

I think that was me, and i think hashi's is exactly the same thing as autoimmune thyroiditis, just with a goitre. But I guess the goitre could be any size, it might not even be visible from the outside, just a swelling that can be felt inside. Of course. I might be wrong, but that's what I think ;-)

infomaniac profile image
infomaniac in reply to HarryE

I don't think it was you Harry because I remember that the person had a very different style of writing to yours. It seems the jury is still out so I'm just going to assume the worst case scenario-that I have got it!

HarryE profile image
HarryE in reply to infomaniac

Well it's the same thing, whatever it's called, so I think we both do ;-)

helvella profile image
helvellaAdministratorThyroid UK

I think that susymac is right - but medics might not agree!

In the original research by Hashimoto in Berlin which identified an attack on the thyroid as a disease they all had goitres. When the term started to be used, it was restricted to those with a goitre. Occasionally you see references to Ord's thyroiditis as the non-goitrous form.

In time it became clear that at the level of the cellular attack by lymphocytes within the thyroid, it did not matter whether or not the person has a goitre. Further, that the non-goitrous form seems more common in those with a northern European genetic background.

Many medics are perfectly happy to call it Hashimoto's with or without a goitre. Some seem to cling on to a distinction and call the goitrous form Hashimoto's and call the non-goitrous form "autoimmune thyroid disease" (AITD). Others call it all AITD. Non-use of "Hashimoto's" seems very common in the UK.

So that is the world as I see it. The name depends on the doctor you see and, maybe, your genes; it does not really depend on whether or not you have a goitre!

Rod

HarryE profile image
HarryE

I think it is different antibodies in grave's. But neither are great :-(

But yes, I think you are right, in that the hypo or hyper is as a result of the disease, either grave's or hashi's.

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