Carbimizole not working what's next

[Kirstylstocks]

Hi I've got hyperthyroidism I was re-diagnosed beginning of December 2018. My levels t3 12.9 my tsh 0.1 free thyroxine is 29. I was really debating asking this question but I can not find an answer anywhere so if anyone as gone threw the same ir very similar please can you shed some light on things. I'm about to explain best I can and I hope I'm putting enough information or explaining things so you can understand. I really appreciate all the help I get on here so thankyou in advance.

I began taking 20mg of carbimizole end of January I was on them about 8 week. In between that I had a radioactive scan which showed swelling spreading across my goitre but no noduals I had no swollen lympth nodes back then either. Upon that check up where I was given my results, my endo said that my levels have not changed. So he put me on 40mg carbimizole which is 2 tablets a day. He requested more bloods 4 week after and said that these tablets should bring my levels back down. So 4 week later I had my bloods done. I went to the doctors because I have a chest infection, while there he looked at my blood results and told me my levels are still the same. If my levels are not improving what could be the problem? Or what could it be leading to? I see my endo on Thursday. Have you any ideas what he may do next?

Graves disease- I asked my endo if I had it and he said no. I dont know the exact levels of my anti bodies but they were high so my doctor said I probably do have graves disease. I have a visible goitre now and swollen lympth nodes. My symptoms are getting worse too. I am going to ask my endo if he checked my bloods for graves disease and checked for plummers disease,also going to request a repeat scan and a full vitamin count. I'm also going to ask for copies of all my blood results. My main question is why are my levels not improving what can stop them to improve could it be a tell tail sign for something else, as in something else is wrong, Or if it's my body rejecting my medication why is it rejecting it what is the problem? Please help its driving me Indian.

[Kirstylstocks]

Sorry last word is meant to say insain

[Greekchick in reply to Kirstylstocks]

I figured ! 🙂

[helvella in reply to Kirstylstocks]

You may not realise that you can edit any posts or responses you have made here.

HealthUnlocked have produced a simple demonstration of how to do this. You can find this here:

support.healthunlocked.com/...

When you edit the original post in a thread, you will also have the option to add (or remove) a single image. (To replace an image, remove the existing image, then add the new one.)

support.healthunlocked.com/...

I am pointing this out purely to ensure that you know your options.

(If you make extensive changes, it is sometimes helpful to add a comment so that people can see that you have made changes.)

[Greekchick]

Hello,

You need to see your blood work with the antibody tests to know for sure if you have Graves. This should be definitively confirmed before any next steps.

Your symptoms suggest to me that you have become resistant to the carbimazole - in other words, it is no longer controlling your symptoms - the swollen lymph nodes, enlarged goiter, etc.

The next steps usually (and I am not a doctor so this is based on my own experience) will be either radio active ablation (RAI) or a thyroidectomy. In my case, I have Graves and became resistant to methimazole, and my goiter was crushing my vocal cords. I needed a total thyroidectomy, and I am 10 weeks post op. While I am not yet stabilized on my meds, I am much better and improving. There is hope!

Every case is different - and so I don’t want to scare you. I would suggest you post your blood results with ranges as there are people here who are very good at explaining them to you and what they mean.

I wish you all the best and am so sorry to hear what you are going through. I know how you feel. Sending you positive thoughts and good luck with next steps. 🤗

[Kirstylstocks in reply to Greekchick]

Thankyou. Once I see my endo on Thursday I will get these results and then post on here

[Greekchick in reply to Kirstylstocks]

Good luck! The blood tests will provide a more definitive answer.

[Kirstylstocks in reply to Greekchick]

Thankyou do you know what bloods it is to check plummers

[greygoose]

Those blood test results do not suggest Grave's to me. They suggest Hashimoto's Thyroiditis - known to UK doctors as Autoimmune Thyroiditis. The problem is, a lot of doctors don't understand the difference. They should test antibodies as a matter of course, but often don't, just guess. You've had antibodies tested, by the sound of it, but you need to know which ones:

TRAB or TSI for Grave's

TPOab and TgAB for for Hashi's

Once you know which it is, you can insist on the correct treatment.

[Kirstylstocks]

Hashimoto's isn't that where it would suggest underactive tho? Also what bloods would it be to check plummers disease please?

[Greekchick in reply to Kirstylstocks]

Plummer’s disease is another term sometimes used interchangeably by some doctors in Europe for Graves. They both describe hyperthyroid conditions. Hope this helps.

[Kirstylstocks in reply to Greekchick]

Thankyou

[greygoose in reply to Kirstylstocks]

Sorry, only just saw this, because you didn't click on the blue 'Reply' button under my response. I wasn't notified.

Hashi's is an autoimmune disease where the immune system slowly destroys the thyroid by sporadically attacking it. During the attack, the dying cells dump their stock of thyroid hormone into the blood causing FT4/3 levels to rise to… the levels you've mentioned above (which are really too low for Grave's) and the TSH to subsequently drop. It's what we call a Hashi's 'hyper' swing, but it isn't true hyperthyroidism. And, at some point, the extra hormone will get used up/excreted and levels will go down to normal or hypo, depending on how much hormone your thyroid is still capable of producing.

Unfortunately - and somewhat unbelievably - doctors know nothing about how Hashi's work. So, when they see a low TSH, they panic, diagnose 'hyperthyroidism' and prescribe carbi. But, that is not the right treatment for Hashi's.

What you need is your antibodies tested to make sure of the diagnosis. If a doctor won't do that then he is negligent. And, the best time to test for antibodies is when your FT4/3 are high, because that's when the TPO/Tg antibodies are likely to be at their highest.

So, no, in answer to your question, Hashi's doesn't just suggest hypo, it suggests levels that swing from low to high and back again.

[Kirstylstocks in reply to greygoose]

Thankyou for this information I will mention this to my endo today

[greygoose in reply to Kirstylstocks]

I think that what you should actually do is insist on antibody testing. If you just mention it, he will probably just brush it aside.

[Kirstylstocks in reply to greygoose]

Yes I will do today. Also after writing this post I saw a gp again as I ended up with a chest infection and 8t turned out that the first gp was wrong my levels are improving just slowly so all that worry for nothing it really annoyed me I did write another post about it. I dont know what my results were but I will find out today

[greygoose in reply to Kirstylstocks]

Yes, but surely you don't need a doctor to tell you if your levels are improving? You just look at the results and you can see for yourself. If you post all the results then we'll be able to see, too.

[Zelda123]

I had the same thing happen and I have both graves and hashi antibodies.. it was until

One out of three thyroid doctors saw that my thyroiditis antibodies were very high where the graves ones were 10. He explained that my thyroid has been destroyed and has dumped the thyroxine in my

Blood. The carbon drug was awful for me because I also had autoimmune hives the same time it all happened. So when I took it I had a bad reaction to it and had to stop there is another thyroid blocking drug that’s got a long name Propylthiouracil. PTU for short. I was told it was better than the carb one.. so I had that the same thing happen.. they wouldn’t take my thyroid out or give me radioactive treatment. They wanted to check my levels until they dropped by leaving it alone..

and finally after a year they did..

they said they didn’t want to give me radioactive treatment because it would make it further overactive in the initial stages before it went under, that them destroying my thyroid or taking it out was against the NHS nice guidelines as it still works. 😩 sooo now I’m back on thyroxine

[Kirstylstocks in reply to Zelda123]

Oh gosh you have had a bad experience. And can imagine you have had enough now. I see my endo today so I have a list of questions for him. I'm going to ask if i have hashimoto's or graves disease then talk again about the operation

[Zelda123 in reply to Kirstylstocks]

My Aunty D had radioactive iodine and despite that she yo’yo’s still !? It doesn’t always work and she has Graves’ disease. My Aunty C had half of her thyroid removed due to a cancer.

Having it out is probably the best bet. There’s a group on Facebook where people share there post op pics and stories and the majority nearly all are all positive and they would never look back after having it out. Only one or two who had some other issues after and that’s due to other factors.

It’s a highly successful operation and your not in hospital long.. just recovery and getting your medication right is a different process altogether but it’s miles better than what your going through now x

[Kirstylstocks in reply to Zelda123]

Thankyou so so much