Set back in recovery looking for reassurance!!

[Gracieebee]

Good morning everyone,

I'm a 25 year old female who was diagnosed with graves back in April. Since then I have been on 30mg of carbimazole daily. I also was on propanalol but stopped that on endos tee recommendations as my levels are nearly in normal range. (this does not include my TSH which is yet to catch up).

I had been feeling really great again, happy and physically fit. But for the last two weeks I feel rubbish . I feel like crying all the time and I feel tired, lacking in motivation and with muscle aches!!!!!

It is normal for the road to full health to have the ups and downs. I am just looking for some reassurance it will pass.

I was told by my GP that I have graves. Then the endo told me I have a nodule. Then after further tests I was told no I do have graves. This has messed with my head a bit as I was glad I had a nodule when told that and now feel dissapointed I have graves in a way!!!

Thank you in advance for anyone's advice and support

[helvella]

Many Graves patients on Carbimazole find initial improvement - often after a few weeks they are surprisingly well. Then their store of thyroid hormones gets depleted and they suffer from not having enough thyroid hormone.

Carbimazole could well need to be reduced in order for you produce enough thyroid hormone. To make that decision you need at least TSH, FT4 and FT3 tests to be done again. It is very common for adjustments to be required.

I assume that you were tested for Thyroid Stimulating Hormone receptor antibodies (TRAB or TSI) in order for them to give a diagnosis of Graves?

[Gracieebee in reply to helvella]

Hi Helvella,

Thanks very much for your reply! Yes, I am wondering if that is what is happening... I have another blood test booked in for next Thursday which is 7 weeks from my last one. In my previous blood tests, my T3 was in range and my T4 was only slightly above the ideal range. So I guess it is possible that another 6 weeks later I am now too medicated but will have to have bloods done to confirm this I guess!! I just hope that is is because the levels are getting too low now and that can be fixed. It's soooo annoying... just want to not have to think about it!

Yes, my GP initially mentioned something about the antibodies being present but I didn't really understand this at the time. The endo seemed so confident it wasn't graves... he even said he could feel the 4cm nodule and that because I have no family history of graves etc it is not likely to be this. But now I'm thinking did he not look at the antibodies... I don't really understand how that works. I had the radioactive tracer scan last week so when I get the results of that it will confirm if it's a nodule or graves but the ultrasound guy said its 85% chance of being graves as the whole lot is enlarged.

[helvella in reply to Gracieebee]

Make sure you find clearly which antibodies have been tested!

Makes a nonsense of time-based intervals for testing. Would very likely have been right to have had another test last Thursday and now have the results.

Feeling a nodule has absolutely no relevance as to whether you have Graves or not. Sure, some nodules can produce excess thyroid hormone. But nothing about having a nodule proves you do NOT have Graves. You could so easily have a nodule, functioning or not, AND Graves.

[Gracieebee in reply to helvella]

Hi Helvella,

I will check that at my next appointment. What do you mean by makes a nonsense of time-based intervals for testing? Yes, I should have booked one for last week but I just assumed I would feel crappy for a couple of days and pass as it sometimes does and now there isn't an appointment for 10 days as the nurse is on holiday... but that's ok I will get the answers soon enough

Thank you for the information about the nodule and graves. I asked the endo if the nodule meant I didn't have graves and he said yes. I don't think it has helped over the last couple of weeks to realise that the likelihood is I do actually have graves (after seeing the ultrasound doctor) as I feel like I don't have control of that... whereas when I believed it was a nodule causing it I could simply have that removed.... that was what the endo recommended! I find it hard on the internet to find people talking positively about graves and how they have gone forward to live 'normal' lives - that would help!!!

Thank you!

[helvella in reply to Gracieebee]

What I mean is that we so often see people told to have another test in so many weeks or months. What is needed is to have the ability to go for a test as soon as the person feels things have changed.

Ten days of being significantly hypothyroid, if that is what turns out to be the case, might seem a lot worse at the end of that time than it does now.

I'd much rather the situation at my last location where I could turn up without appointment at the hospital pathology lab and have my blood done - so long as I had a filled-in form. Being messed about by nurse holiday rotas is nonsensical.

Do't make any assumptions about having, or not having Graves, until TRAB/TSI have been tested and you have the results.

[Gracieebee in reply to helvella]

Ahh yes ok! I was under the impression that is what I could do but you always get one receptionist who makes it a meal!!! I had just been ringing up and saying I needed a test every four weeks... just to check the levels were coming down! Then the one time I really need it because I feel unwell they say well on line 1678000 of your notes it says to come back and re-test after 8 weeks and it's only been 6.... and I'm just like no I need a test! Well, you can't have one for 10 days because the nurse is too busy anyway as the other one is on holiday!! Like great thanks... it's not like this is my life or anything haha!!

But thanks for your advice and talking to me it has been really helpful and helped me to talk about it!! I have taken note of the antibodies and will get that checked. Thank you x

[Marz in reply to Gracieebee]

We are seeing more and more members here who are being diagnosed and treated with medication for an over-active thyroid. When we ask more and more questions we eventually discover they have Hashimotos - diagnosed by the Anti-bodies TPO and Tg - and which can eventually lead to an Under-active thyroid. I do not wish to alarm you - but PLEASE do ensure the correct anti-bodies have been tested. Docs rarely direct enough attention to anti-bodies - and just look at the TSH and FT4.

If you are HYPER - then my understanding is you should be under the care of an Endocrinologist - if you can find one that understands

[Gracieebee in reply to Marz]

Hi Marz, thank you for your input also. I will definitely get this checked with my GP after my next blood test next week. I know they do test for the antibodies so I will ask to make sure it's not Hashimoto's now I understand the two antibodies.

I do have an endo, just early days with that in terms of having the test results back from the radioactive scan, so they haven't been able to give me conclusive answers now!

[Hidden in reply to Gracieebee]

Hi I have been diagnosed with hyperthyroidism and I'm waiting to see the endcronogist in two weeks time. I've been on carbizamole for four weeks and I haven't seen any improvement I'm having a nother blood test next week so I will be able to compare with the one I had done four weeks ago. My TSH was 0.01

[Gracieebee in reply to Hidden]

Hi there,

Obviously, I am not perfect at the moment as it is likely my levels need adjusting as been on quite a high dose for over 6 months now! However, I would say from my experience 1 month was not enough time for me to see a noticeable difference either!! It wasn't until about 2-3 months in that I started to see differences in how I felt, so I wouldn't panic that it isn't working and hopefully your bloods will show that the medication is working to reduce your levels. In months 4 & 5 I felt good a lot of the time, to the point where I didn't feel like it was significantly impacting my life!

The first blood test after I started medication, my levels had dropped loads but I hadn't seen much improvement in my symptoms... it does unfortunately take time but hold in there at the moment and try to take it a day at a time !

[Marz in reply to Gracieebee]

You are legally entitled to have copies of all your test results - so do try to be firm. This will make posting here easier too ... you can also keep a record of your progress.

[Marz in reply to Gracieebee]

Just make sure you get copies of all your test results ... - they are legally YOURS x

[Hidden]

Hi guys just an update and some further advice required.

I just had my blood tests results back... I definitely have graves disease.

I have been feeling more tired and a bit depressed for no reason recently and so thought my levels may be getting too low.

The results for my T3 and T4 were:

T4: 5.5 (range 2.6 - 5.7)

T3: 10.5 (range 9-19)

So obviously my T3 is getting low and I was wondering if this is what is giving me the symptoms?

I currently take 30mg of carbimazole but my GP advised me to cut back to 20mg... is this enough? I don't want my levels to keep falling! I have an endo appointment on 23rd October, so will be decided then whether to stop or not but my GP doesn't want me to stop yet.

Thanks

xx