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Thyroid UK
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Blood results advice re just discharged from hospital monitoring? Graves disease diagnosed Oct'13.

Hi all you knowledgeable people. Can you advise me on my blood results. My blood results have gone from tsh 0.05, t4 32.2, t3 12.3 in Oct 2013, now down at tsh 1.17 , t4 16.8, t3 4.0 March 2015

and I was yesterday discharged from hospital monitoring with the following advice from the endo nurse. You have been off 50mg Propylthiouracil for 6 months.

Your blood test shows you at a good level now and normal so we will discharge you.

Go for routine blood test every 3 months for 1 yr, then 6 monthly in year 2. Annual thereafter. However, as you have Graves Disease when your GP refers you back to us, you will have to see the Consultant to discuss the radio active iodine treatment. You can't go on tablets as before.

I asked if it was normal for me to still feel irritated and could argue with my own shadow on occasions, that my arms and legs were permanently cold and I never seem to be able to control my body temperature. Still no libido, hair still falling out big time. My TSH is now at it's lowest level since first diagnosed, my t4 is now at its highest since I was first diagnosed, and my t3 has fluctuated between 3.4 and 4.0 since first diagnosed. So am I in danger of going overactive again?

I was told everything is normal with your blood so I suggest you go and ask your doctor to look for some other reasons your hair is falling out etc and maybe you need an anti-depressant.

I also asked if I would get a full blood result from my GP with counts on tsh, t4 and t3, the reply was a sharp No, it's too costly and you only need your general tsh, if anything is wrong that will tell your GP.

I keep reading up on all the tsh, t4 and t3 and rt3 and end up confusing myself.

SO to all you I ask am I normal? Well obviously not, but that aside, do I have a an acceptable blood result and do I just have to hope that in time I will be well? Is this as good as it gets with Graves disease?.

I am so much better than I was in that the debilitating and really scarey. 'brain fog' has finally lifted and so no longer crashing my car, losing mobile phone, keys, leaving bank cards in machines, forgetting to pay bills etc. What a nightmare that was. Then the inability to get up/down stairs, open jars, milk and packets. I slept forever and my anxiety over everything was ridiculous. My skin felt as though it came from an alien and I felt like I wanted to scratch it from my bones. My total empathy and sympathy to all those who may read this and are going through it just now. Just believe you are not 'crazy'.

I am seeing a homeopathist who has helped speed my recovery enormously over the last 6 months and I take lots of vit and min supplements

4 Replies
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Hi tired lady

I was diagnosed with graves 2011 my levels have been up and down since then.

They put you on meds for eighteen months then take you off to see if you go into remission they cannot cure graves. I think this is what they are doing with you.

My levels now are similar to yours, but my consultant is willing to leave me on 5mg of Carbimazole as every time I stop meds my levels just rocket. I have refused RAI.

I have never felt completely normal since and having read lots of literature Graves can leave you feeling rubbish for years after your blood levels stabilise.

Can you not take carbimazole because I don't think you can stay on your meds indefinitely. That is why they say you will have to have RAI if your levels rise again. It is a terrible disease and you have my utmost sympathy. I find I have good days and bad days my advice, be kind to yourself, you know how you feel

Don't push yourself too hard and please message me if you want to rant as one graves person to another.

Ali xx

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Hi Ali

Thanks for your reply. It was a mixture of pleasure and pain to know that you too have really 'crappy' days, yet understand where I am coming from. Sometimes it feels like 'Graves disease' as in for that's where I am heading next.

Same goes from me to you, when the going gets tough, please get in touch.

Best wishes - not too tired a lady these days. - x

Reply

So annoying, I typed out a long reply to you and it just disappears into nothing! Bottom line is, yes, you should have T4 at least alongside your TSH - I know because I visited my practise nurse a week after I had blood drawn and I asked my results, when she looked them up and found that only TSH had bern done she was very criss about it. I'm hoping she contacted the labs and had it added while they still had my sample.

Yes, you can have another try on PTU or Carbimazole. Even Dr Toft says that in his little book Understanding Your Thyroid and he is very 'establishment'

While I was on B&R treatment I was told twice that if I relapsed I could have RAI - I told them twice that I didn't want it. A week or so after my B&R was was stopped I went to my GP and said I did not want RAI and could I be forced to have it? No. Could the hospital refuse to treat me if I refused it? No. So Stick to your guns and say you want to stick with PTU or Carbimazole. Unless there is some reason that it wouldn't be wise to do that - you develop an allergy or something like that.

My hair only fell out when I became underactive during my treatment, that stopped when I got to the right level for me and I only feel cold when I feel a bit 'under' I stopped being aggressive though. My TSH is climbing compared to what it was when I stopped my B&R so I have a feeling I might be becoming hypo rather than hyper.

I think when your TSH has been really low with Graves ( my numbers were very similar to yours when I was first diagnosed) I think it takes a while for your body to realise what 'normal' feels like.

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Thank you fruitandnutcase, your advice invaluable and boosts my confidence in what i believe im saying is correct. So do you go under and/over active with Graves? There are so many similatities with thyroid, i find it hard to know one thyroid diagnois name from another. i.e overactive,thyroiditis,graves,overactive thyroid and hashimotos. How do they diagnose or even know the difference?

Best wishes and thankyou again

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