GRAVES what next??: Hi. Diagnosed with hyper... - Thyroid UK

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GRAVES what next??

FiFiFillary
FiFiFillary

Hi.

Diagnosed with hyper April this year and tested positive for Graves in August.

Carbimazole reduced from 40 to 5mg since April. I saw endo in July who wanted to test for Graves and got a copy of my “cc” letter from endo to GP early sept confirming Graves. Not heard anything since other than normal 6 weekly bloods. My next endo appt is in Dec which was booked from my last endo appt in July. Feeling a little abandoned and don’t know what is going to happen next. Thankfully I feel Pretty well apart from losing more hair than normal and getting easily irritated, some days I’m exhausted and others I struggle to sleep a whole night. I know your help and advice was wonderful when I first found this sight and just a guide from your expertise of where this may go next would be very much appreciated. Thank you

23 Replies

Sounds like you have done well to get down to 5 mgs carbimazole so quickly tbh , hopefully the next visit will be you going into remission.

The reason they do 6 weeks bloods as that’s how long it takes for the pro drug to work ,

Some with graves have found having their vitamins all in top of Range helps anti bodies go into remission , check bloods Vit D3, B12, folate Ferritin, ,

Are your anti bodies high for graves as they can be kept down with Yoga to keep stress levels down as the thyroid doesn’t cope well with stress VitD3, selenium

At the moment doesn’t look like you will be asked to have radio active iodine, or surgery, , try to avoid these options as you will end up hypothyroid and if you are ok on carbimazole stay on it if you have to, it’s quite safe to stay on low dose carb

Always keep copies of blood results and write next to them how you felt, is good to have a level you know you feel good at .

Good luck at next appointment

If you feel worse at any stage contact your Endos Secretary but if well just wait for appointment x

FiFiFillary
FiFiFillary in reply to Pascha1

Thank you for your reply.

My antibody result was 2.39 (0-1.74 reference limit).

So can this level also come down? What happens long term with Graves if I go into remission?

Marz
Marz in reply to FiFiFillary

Which anti-body was the result for ?

FiFiFillary
FiFiFillary in reply to Marz

Thyroid receptor antibodies XaEO4

Marz
Marz in reply to FiFiFillary

I think that is only the code of the test and not the name - sorry !

Valarian
Valarian in reply to Marz

Thyroid Receptor Antibodies = TRAb, which is one of the antibody tests for Graves’

Marz
Marz in reply to Valarian

Sorry - my error ! Was not concentrating !

Valarian
Valarian in reply to Marz

:)

FiFiFillary
FiFiFillary in reply to Marz

The report says thyroid receptor antibodies, TSH receptor antibody level (XaEO4) then above range then the result.....

Valarian
Valarian in reply to FiFiFillary

Usual guidance is to remain on carbimazole for 12-18 months altogether, as this gives the best chance of achieving remission.

Around 85% of people with active Graves' have positive TRAb. There is some suggestion that high levels of antibodies (at diagnosis, and/or on ceasing treatment with antithyroid medication) may be associated with increased likelihood of relapse, but other studies have not proved this connection.

My endo recently said that the most likely time for relapse was within the first four months after coming off treatment. There also appears to be an increased risk within the first eighteen months. After that, you may be lucky, but some people here have eventually relapsed after decades.

The gaps between your endo appointments seem quite long.

FiFiFillary
FiFiFillary in reply to Valarian

Are you still receiving treatment or are you in remission?

It is a long time yes and not been told and explained about Graves by endo or gp. Do you think my antibody result is high or low?

Valarian
Valarian in reply to FiFiFillary

I'm still receiving treatment. I'm into my 15th month, but due to a relapse last year, am still on 15mg carbimazole/day. Length of time to get thyroid levels back in range, and the dose of carbimazole required are also apparently indicative of likelihood of remission, which looks pretty good for you, less so for me :(

I'm not sure about antibody levels once they are above range. I'm due to have mine re-tested prior to my next endo appointment in December, so was planning to ask my endo for his views then. There is stuff around online if you look for it, but some of the articles contradict each other. I had TRAb tested when first diagnosed, so there will be a point of comparison.

These links may help you more generally:

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

btf-thyroid.org/information...

cks.nice.org.uk/hyperthyroi...

Your disease course is similar to mine 3 yrs ago. Like you I responded well to Carbimazole, was titrated down by my GP and eventually stopped. GP was not an expert in Graves'. My antibodies were still high and I should not have stopped. Like many Graves' patients I was entering into a hypo phase which worsened my eye problems and an MRI confirmed TED. Endo then changed me to Block and Replace saying I would be on it for 18 months and then stopped. He thought I would probably relapse and need a thyroidectomy. GP was instructed to start me on 20 mg Carbimazole and 6 weeks later add in 100 mcg. levothyroxine. 3 months before, on a dose of 5mg Carb. I had a TSH of 38 so it was inevitable I would go Hypo again ( was told I couldn't be hypo as I had Graves' ! ) When the Levo was added in it was too high and I went Hyper. All these fluctuations caused my eyes to deteriorate. I asked for a second opinion and was referred to a brilliant new Endo - no mention of thyroidectomy. I now have all the correct tests done and E mail results to him bypassing the GP. I am on a modified block and replace and feeling great. Don't want to alarm you and really hope you have achieved remission. Just check that your Endo is experienced in Thyroid Autoimmune Disease and not just Diabetes like mine.

FiFiFillary
FiFiFillary in reply to asiatic

Oh my goodness me. How up and down. I hope your eyes have improved.

I have no idea re my endo.... its NHS so I guess I have no choice in who I see??!!

asiatic
asiatic in reply to FiFiFillary

I agree with all the advice you are getting here. Keep a diary of your results and how you feel. Educate yourself about Graves'.

"One size does not fit all " you are biochemically unique. Your trab is quite low so hopefully you are going into remission but you say you are fatigued which may mean like me you are becoming hypothyroid and need a little levothyroxine added in.. Have you had recent bloods done on 5 mg of carb ? After a diagnosis of Graves' you should have been warned to look out for dry gritty eyes which could be the start of TED.

FiFiFillary
FiFiFillary in reply to asiatic

Yes I’ve been on 5mg of carbimazole since early September and had bloods just over a week ago. My TSH has been suppressed at 0.03 since April when diagnosed hyper but it’s now 0.62, FT4 normal at 11.4 and FT3 at 3.7. TSH did creep back up to 0.67 in June but then back down to 0.03 again

asiatic
asiatic in reply to FiFiFillary

As long as you have antibodies your TSH will be suppressed. You say FT4 and 3 are normal when really all you can say is they are within range. They are both bottom of range which might not be normal for you. Most Graves patients on carb feel better when they are near top of range. You are fatigued. If your carb is reduced further which is what needs to happen to check for remission you may feel much worse and the alternative is to go onto a block and replace regime. You can discuss this with your endo. Let us know what the outcome is. Good luck !

FiFiFillary
FiFiFillary in reply to asiatic

Thank you......... I have no idea what normal for me is as this is all so new to me. I also have no idea what a block is but thank you 😊

helvella
helvellaAdministrator in reply to FiFiFillary

Block and Replace regime is where you take enough of an anti-thyroid medicine (usually carbimazole in the UK) to fully suppress your own thyroid making any thyroid hormone at all. That is the block.

You also take sufficient levothyroxine to fully supply your need. That is the replace.

In some people, it is very difficult or impossible to adjust the dose of anti-thyroid medicine to do just the right amount of suppression. It is thought to be easier to finely adjust the levothyroxine dose. There is some logic to this but it remains an approach that some endocrinologists use quite a lot, others hardly or not at all.

FiFiFillary
FiFiFillary in reply to helvella

Ok, mine field! Thank you. Just wish I could afford private appointments and feel like I know exactly what is going on and I’m not just being seen because I pay my taxes

helvella
helvellaAdministrator in reply to FiFiFillary

It probably doesn't reassure much but private appointments don't always work out as we fondly imagine.

I suggest a good deal of reading.

Often fellow Graves patients are the best help. (Not me - I am hypothyroid.)

FiFiFillary
FiFiFillary in reply to helvella

Thank you. I’ll be an expert before long 😉

asiatic
asiatic in reply to FiFiFillary

Helvella has explained block and replace. Can I just add that I found some doctors reluctant to give a Graves patient more thyroid hormone in case the levothyroxine makes them hyper again. Your carbimazole should be reduced to a very small amount ( 1 mg or under ) to check for remission but some people like myself go hypothyroid with symptoms just as debilitating as the hyperthyroid symptoms they had previously. My personal opinion was - where was the harm experimenting a bit as long as I was closely monitored. For me this regime worked and I feel great and my endo is happy to keep me on it long term. As I said my antibodies are still high and yours are much lower so you have a better outlook and with all this information you are getting you will soon be an expert in graves treatment !

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