Anti-body test after 27 years?

[Jocelin]

Hi all,

In 1991, at age 22, I was diagnosed with a very slight hyperthyroidism. Because I have type 1 diabetes too, it was taken very seriously. I was put on Strumazol immediately and a bit of Thyrax (levo). After about 1,5 years it changed into hypothyroidism and since then I'm on levo and since a few years Cytomel (T3) is added because of symptoms (which have slightly improved). In the search for a new doctor I got some information from my old patient file and noticed that it mentions that I had a radioactive treatment in 1993. This is not the case. I am sure I would not have agreed to that at that stage and I also would remember of course. When seeing a new doctor (I made an appointment today and can see him end of November) I will tell him of course. Recently upon my request my anti-TPO was tested and resulted in <33 (normal range 0-60). Because diabetes type 1 is auto-immune and often goes together with hypothyroidism I always thought both were auto-immune, but I have started wondering lately. I think it is helpful to find out to optimize my further treatment.

My question is: does any of you know if, after 27 years, such anti-TPO test can stil tell if I have Hashimoto's or not? Or does the body get used to a situation and no longer make anti-body's? Or does it mean that if there are no anti-body's now, there were no in the past? That from the beginning my underactive thyroid was not auto-immune?

I look forward to what information you may have!

Thanks!

[Valarian]

Are you sure it said radioactive iodine TREATMENT and not UPTAKE TEST ?

[Jocelin in reply to Valarian]

Hi Valarian,

Thanks for verifying. It says I-131 treatment. I looked it up when I read it, and it is described as a radio-active iodine treatment.

I do not know what uptake test is, can you explain?

[Valarian in reply to Jocelin]

The uptake test is sometimes used as a diagnostic aid for hyperthyroid cases. It involves a much smaller amount of radioactive iodine than the treatment. You would have had to give explicit consent to the latter. btf-thyroid.org/information...

[Jocelin in reply to Valarian]

Thanks for the info, Valarian. I have not had such test. It's quite strange that this info is in my file because, when I read the information in the link you've sent, I-131 seems only applied for strong and/or longlasting hyperthyroidism. Mine was only slightly overactive for 1,5 years and it felt as even a shorter period before I stopped the strumazol because of hypo symptoms.

Today I saw another error: in the letter of the GP to the new endocrinologist I saw that still hyperthyroidism was stated instead of hypothyroidism. I called and they knew it's hypothyroidism from update letters from former internists, but they never adjusted it in my file.

With these experiences I am getting even more alert to double-check the correctness of medical interventions.

Let's hope the new endocrinologist I'll see end of the month opens better perspectives!

Thanks for your help in further clearifying things, Valarian.

[greygoose]

Antibodies will probably be negative if your thyroid has been completely destroyed. To know that, you would need an ultrasound - that would probably be the best way to go, anyway.

But, absence of antibodies does not mean you don't have Hashi's. You can have Hashi's without ever having high antibodies. Besides, as antibodies fluctuate, it could just have been a day when they were at their lowest.

Or does the body get used to a situation and no longer make anti-body's?

No, I don't think it works like that. The TPO antibodies have a job to do. They come along after an immune system attack on the thyroid, to clean up the traces of TPO that have leaked into the blood stream during the attack.

[Jocelin in reply to greygoose]

Hi Greygoose,

Thanks for sharing this info and view. Seems like a coincidence: tomorrow I'll have an ultrasound because of a swelling under my right jaw. I will ask them if they also scan my thyroid, Hopefully they are willing to do that. It should take about one week before the GP gets the result/conclusion (of the swelling at least).

I have the idea that this swelling had arised after having started exercises I received from a therapist, for sliding my neck/arm/wrist nerves because of a carpal tunnel syndrom (of which I think the cause is a thoracic outlet syndrome and for which I - finally after repeating this since 2 years! - will get an appointment in another hospital shortly).

The other way around might also be possible, I think: maybe there was a small swelling all along that causes the problems in my arms and hands and is getting larger now...

Anyway.... thanks, Greygoose, happy to learn from you!

[greygoose in reply to Jocelin]

Carpel tunnel is a hypo symptom, you know.

[Jocelin in reply to greygoose]

Yes... I know. That's one of the reasons I need my thyroid treatment improved. I hope I can get of rid of this CTS in both wrists without surgery because that 'solution' again would be just masking things.

[LinV]

Hi Jocelin,

The question is, did you have hashimotos (auto imune disease) and because of that hypothyriodism or did you got hypothyriodism because the strumazol slowed your hyper thyriod (probably caused by Graves, wich is an auto imune disease) so much that it turned into hypothyriodism? Than you would never had antibodies for Hashimotos.

So you can have a slow thyriod without an autoimune disease ( so no antibodies for hashimotos)

My friend has this, she first had Graves and the Strumazol slowed her hyper thyriod so much down she now is hypothyriod. (she never got radioactive treatment)

You can also have both, so Graves and hashimotos

You also can reverse Hashimotos and there for have no antibodies (but usualy this doesn't go away on its own, but it can go away by diet, etc etc) so than you would have no anibodies no more

Can't you ask for the old lab results to see if you ever had Hashimotos?

(and for Hashimotos you have to get your TPO and AB (Anti-thyroglobulin) tested)

Maybe you need to go higher with your cytomel to feel better?

I hope you can understand my Englisch, because I am Dutch...

I have Hashimotos and have hypothyriodism and on T3 only

[Jocelin in reply to LinV]

Hi LinV,

Thanks! I PM'd you in Dutch

I think it very possible that the story of your friend resembles mine.

I decided to stop the contact with the internists I saw so far and will await the appointment with the new endocrinologist end of November.

Hopefully he is willing to dive deeper!

In the meantime the US of my neck showed that I had swollen lymf glands. Nothing to worry about. The short US report metioned that there were no pathological issues, blood vessel structures all looked good, and that my thyroid gland had normal structures, but was small of size. I assume that it's small due to using levo for 27 years and T3 for about 4 years now. I feel this is hopegiving!