Help please

[Hellbell824]

Hi all, i have graves but I have tpo antibodies.. I thought that TPO antibodies were hashimoto related.

Have managed to get my head round all the t3/t4 & TSH meanings but I haven't got a clue about antibodies and the level I have.

I don't know the ranges for antibodies either and my next telephone appointment is at the end of November.

Does anyone know what my tpo levels mean? Are they ridiculously high? Do they have an awful effect on TED? (My opthalmic appointment isn't till the 30th)

Any advice will be much appreciated.. I don't like not knowing what's going on with my body

[437jd]

Wow you get a letter! I don't. I'm Graves too. I don't understand the results enough to comment but someone will soon. I had to laugh that they said you felt quite tired and not motivated- I think this describes Graves' disease to a tee .

[Hellbell824 in reply to 437jd]

I get a copy of the letter they send to my docs

The nurse was being extremely polite.. they weren't my words lol

[437jd in reply to Hellbell824]

Bet I do too then. I just ask them for my blood results. I noticed there aren't any ranges. I'm on block and replace but I'm having slight hyper symptoms with it even though they've reduced my levothyroxine to 50mcg, my carbimazole 40mg. Don't my endo doesn't really give me any comfort, he just changes my meds and takes notes😣😤

[Hellbell824 in reply to 437jd]

Ask for the letter, they must send one to your docs. I'm in Nottingham, an they do seem quite efficient (so far, touch wood)

Levels are

tsh 0.3-5.5

T4 10-19.8

T3 3.5-6.7

Not sure about the anti bodies

[SeasideSusie Remembering]

Hellbell824

From thyroiduk.org.uk/tuk/about_...

The first group, the TPO Ab, are found raised in Hashimoto's disease - otherwise known as autoimmune thyroiditis. Here the cells of the thyroid gland are attacked and slowly destroyed. Patients with these antibodies present either have Hashimoto's, or are going to have it with subsequent reduction of thyroid function. (Elevated levels are found in virtually all cases of Hashimoto's disease and they will also be raised in 65% of patients with Graves' disease).

When I've had a Blue Horizon test, the level for negative antibodies is <34 so yours are very high.

Can't help other than that I'm afraid.

[Hellbell824 in reply to SeasideSusie]

Thank you, SeasideSusie

Well my levels are just stupid then 😒

[SeasideSusie Remembering in reply to Hellbell824]

Which levels?

[Hellbell824 in reply to SeasideSusie]

My antibodies, my thyroid levels have crashed from what they were, witg TSH yet to kick in..

[humanbean]

You may find this of interest :

labtestsonline.org.uk/under...

elaine-moore.com/Articles/G...

Have you had Graves' confirmed by testing? People can be hyperthyroid without having Graves' Disease I think. The second link above has further articles about Graves' down the left hand side of the page.

And info about TED can be found on this link :

elaine-moore.com/Articles/G...

Again there are further links that may be of interest down the left hand side of the page.

[Hellbell824 in reply to humanbean]

The endo diagnosed graves from my bloods and the appearance of my eyes.

I'm concerned that taking carbimazole will knock out my thyroid (which it is doing) when the antibodies are going to do it anyway, will I go hypo? I'm so confused..

[greygoose in reply to Hellbell824]

Yes. Pretty quickly, I believe. I don't think you do have Grave's. Your Grave's antibodies haven't been tested. I think those are the results of a Hashi's 'hyper' swing, not thyroid hormone over-produced by your thyroid. Amazingly, doctors don't seem to know the difference!

Certainly your high Hashi's antibodies speak of a recent attack - the antibodies are sent in to clean up the mess - and the dying cells will have deposited all their store of hormone into the blood, causing the high levels of FT4 and FT3, which cause the TSH to drop. These levels will go down by themselves, leaving you hypo, but if your also taking carbi you are going to drop very suddenly to very hypo. Your endo is crazy!

If I were you, I would insist on getting tested for Grave's antibodies - which is what they should have done in the first place, before putting you on carbi. It is possible to have both, but the Hashi's usually dominates.

As for your eyes, are you sure it's TED? Have you already seen an ophthalmologist? Or are you just guessing it's TED because you think you have Grave's?

[Hellbell824 in reply to greygoose]

That makes so much sense, my t3 & t4 levels were high about 7 years but by the time I saw the endo they had gone back to normal and no treatment was needed.

I don't know if thyroid levels normally drop this quickly but mine have halved in 8 weeks of treatment and I feel shockingly bad.

I will ring my endo tomorrow and try get some more tests

[greygoose in reply to Hellbell824]

I think you should, yes.

[Hellbell824]

I'm seeing the optomologist at the end of the month, I did go to the optician before I saw the endo and he said the muscles behind my eyes were swollen slightly and gave me a copy of his tests (wrong word but can't think of the right one) to give the endo

[Rmichelle in reply to Hellbell824]

Hi i have a very similar situation which i also have a very stupid endo. I am originally hyper but have hashis confirmed in tpo high antibodies but 1 week ago endo wanted to up my carbi to 40 mgs, while at the app i insisted having my bloods done for tsi graves so im just waiting for results for that now, but endo wanted me to start on block and replace for hyper symptons which is the treatment for graves but not fir hashis, i am holding back until endo rings with results, like you very confused but do remember him saying in the midlands area they do not do titration it is block and replace no matter what. And like the lovely greygoose said he is going to make us very hypo as we are more likely to ve on a hashi swing. I went with the same problem to greygoose last week and advised me very similar, my endo has one more shot at this to get his act together then he wont see my ass for dust. Useless.thankgod fir this site!!x

[Hellbell824 in reply to Rmichelle]

I had never heard of a hashis swing until grey goose mentioned it but it does make sense. I don't know if I have graves antibodies too but am going to see if I can get a blood test to check.

Block and replace wasn't mentioned at my appointment and the only way I can imagine being able to cope with that is if they sign me off from work - which I can't do financially. It's hard enough, now getting out of bed and my results are still top end/over so I'd be a complete mess if they blocked and replaced to a level they thought was good!

One thing tho, they have diagnosed me with TED, though I haven't seen a specialist yet, that doesn't usually occur in hashi's does it?

[Rmichelle in reply to Hellbell824]

I myself are only a beginner 3months since being diagnosed but still learning, i think ted is related to graves but someone else could advise better. This is will be my 3rd month off work as i have been very ill with mine and i work in a very busy court office which is very physical and mentally demanding so for me i cant do it at the moment and are very fortunate to get sick pay for a while yet. Its a real pain in the ass with these endos not doing their jobs properly. Im going to chase my results today as its been 10 days now and want to crack on with some decent meds. Get your results done for graves, it ridiculous that these tests arent done in the first place it would save alot of time..good luck.x

[bantam12 in reply to Hellbell824]

Hellbell TED can occur in both hyper and hypo people.