Have Graves and Hasimotos antibodies...

[Nat1972]

I have been suffering from an overactive thyroid for 6 months and the Carbimazole isn’t working.

I have just got back my blood results and antibody results and I have very high reading antibodies for both.

Graves and Hasimotos! Great! And I am still overactive so doctor has recommended RAI which will fix Graves but not Hasimotos, that will be a wait and see approach. The doctors will only know the difference once I have the uptake test....fun stuff the Thyroid business.

If the iodine uptakes then I have Graves if it doesn’t I have Hasimotos.

Has anyone else expierenced this? My doctor also said Carbimazole doesn’t always work and that’s more often than not...

Thanks

[MaisieGray]

It is not unknown that when it comes to patients being under/overactive, or having Graves'/Hashimoto's, that some Drs don't recognise one part of their anatomy from their elbow; and if that results in them being given the wrong treatment .........There are more than two thyroid antibodies (you mentioned "both"). Which did you test positive for, and what were the results and their ranges; and likewise why were the results and ranges of your thyroid hormone tests?

See info re Abs: thyroiduk.org.uk/tuk/about_...

[Angel_of_the_North]

I think it's the other way round. After RAI, Hashis antibodies don't have anything to attack (and anyway Hashis will eventually destroy the entire thyroid, so, for just Hashis, there's no real point having RAI or surgery), but Graves go on to attack other things like the eyes. I would ask about the possibility of thyroid eye disease before making up your mind - surgery might be a better option. Hashis antibodies are TG and TPO, Graves antibodies are TRab and TSI. Is that what was tested? Carbi probably doesn't work on Hashis as it is dying thyroid tissue that gives the high hormone results, not the thyroid creating too many hormones (but I don't know that for sure).

[greygoose in reply to Angel_of_the_North]

That is for sure, yes.

[Nat1972 in reply to Angel_of_the_North]

Thanks for that, yes I have high TG off the radar ie more than 1000 and TPO of 660 and TSH receptor antibodies of 68.38. I think I can take more Carbimazole. The doctor said today that the RAI won’t work for hashis but they test me first with the uptake and then they will know for sure but you can have the above antibodies for graves as well. It’s a huge learning curve...

[Angel_of_the_North in reply to Nat1972]

It's the TSH receptor antibodies (TRab) that show Graves, but do take advice about TED before deciding on RAI, as it seems to be a side effect of RAI. ncbi.nlm.nih.gov/pmc/articl...

[Nat1972 in reply to Angel_of_the_North]

Yes, I think so. Can you treat the overactive thyroid which is hashi’s with Carbimazole?

[Angel_of_the_North in reply to Nat1972]

Usually you don't as it is temporary (and anyway, it isn't that the thyroid is producing too many hormones, it is that it is dying and dumping dead tissue full of hormones, so I doubt it would really work) and the person will soon go normal and then hypo. If heart rate is really high, you often get beta-blockers as a temporary measure. But your high TRab shows Graves.

[Valarian in reply to Nat1972]

6 months isn’t very long to be on carbimazole if you have Graves - usually in the U.K. they give us at least twelve months before trying to push us towards RAI, and quite a few of us (myself included) have been on it for longer than that.

Do you know what your thyroid levels/ranges are now, and what they were when you were first diagnosed? How much carbimazole have you been taking?

Had your thyroid levels begun to come down at all ? (Presumably this isn’t your first test in six months ?)

[Nat1972 in reply to Valarian]

Hi Valarian, in March my T4 were 48 and after 30mg of Carbimazole they dramatically fell to 11 normal so we eased off the Carbimazole. In July it went up so we increased the tablets, in August it went down so we decreased tablets 20mg then in October it rocketed to T4 to 35 now I am back on 30mg and trying that again with beta blockers as my heart rate is all over the show.

I had a scan on my thyroid yesterday and I have goitre now and a nodule.

I am going on Holiday for three weeks now and a bit worried it’s going to get worse.

[Nat1972 in reply to Nat1972]

I had Graves in my 20’s and was in Carbimazole for 2.5 years and it was all good for 20 years, now it has resurfaced

[Valarian in reply to Nat1972]

Well, you obviously need more investigation to find out what’s going on.

With regard to your holiday, I wonder whether it’s worth discussing the option of block and replace with your endo ? It should block thyroid activity completely, and then you would take levo to replace the hormone your thyroid would have produced. It’s not a long term option, because you need a lot of carbimazole, but it might keep things on an even keel for a few weeks.

Most of us with Graves’ seem to be on the titration approach at the moment, but someone - maybe Fruitandnutcase ? - was talking about B&R recently.

[Fruitandnutcase in reply to Valarian]

Hi, I was treated with block and replace. The endo I saw on my first visit outlined the various treatments and said they treated the fast way with block and replace then said it would take a year - which it did. Exactly a year.

I took 20mcg for four weeks and it didn’t make much difference. I got a letter from the endo saying to double up to 40mcg. I took that for two months and by the time I had my first endo appointment I was quite hypo. I started on levothyroxine at that point. Think I started on 25mcg because of my age and it rose steadily until I was taking 40mcg carbimazole along with 100mcg levothyroxine. Then a year almost to the day I first started the carb I saw my endo and next day I took no thyroid meds at all.

I really liked block and replace. I think the block part takes all of the guesswork out of your treatment and they just steadily raise the the levo. I used to joke that they didn’t really need to see me in person, all they needed was my blood test results.

[Valarian in reply to Fruitandnutcase]

Thanks ! Titration can certainly be hit and miss - but quite a lot less carbimazole.

What has never appealed to me is the idea of effectively going ‘cold turkey’ at the end...big step into the unknown!

[Fruitandnutcase in reply to Valarian]

I know, I was amazed - I didn’t feel anything at all. You would think you would but I felt exactly the same as I did when I was taking the drugs and as you say 40mcg is a lot of carb - well 100mcg levo is a lot of levo too.

It felt very weird that first morning when I didn’t take anything at all. I suppose by the time I stopped my levels were all where they were supposed to be and it didn’t make any difference. The human body is an amazing thing 😉

[lavendergirl]

Hello

I found myself in same situation 2.5 years ago although the endo only told me Graves and dismissed my yoyoing between hyper and hypo that was literally driving insane.

Carbimazole made me very ill then I had to stop to take Levo, and on it went.

When I finally found a proper endo, she explained that RAI doesn’t always destroy the entire gland and often must be repeated because whatever is left is “played” with by Graves.

Elected for surgery 6 weeks ago and I’m so glad because they also found a cancerous tumour on the pyramidal lobe where nobody was looking (a third thyroid lobe present in some people).

Now recovering and hoping that T4 only will be alright.

Take care of yourself.