Hello, I have finally got a diagnoses which has taken nearly a year. I have been going to my gp in between endo appointments as I have been so ill. I have had Graves on and off since 2006. My GP seemed to think I had depression and it was all in my head as TSH, T3 and 4 were only just out of range. They did agree to the test me for B12, folate and Vit D eventually after 3 times of me asking which came back low so I have been receiving injections for B12. I thought I would feel better but I didn't and was really disappointed. I was given Propylthiouracil by an endo last September, he offered me RAI but I said at the time I would rather have the opp so he referred me to an endo surgeon at Oxford, I told him my symptoms, he wondered if I had Hashimoto's so done antibodies tests, this was last January, I have been back this week for results, I was told I have Graves. My point is I was told by my GP just before I went to hospital that my blood tests look OK now, she gave me a depression form and said to me "you are 59 now, maybe you are not aging as well as you hoped" At that time my TSH 0.30 (0,35 - 4.94) T4 12.90 (9.01 - 19.05) T3 5.00 (2.63 - 5.70) I did go away thinking maybe I am depressed and it is all in my mind.
Now I have my results for the antibodies test from hospital which states the following -THY PEROX AB 72 (Range 0-60 and TSH RECEPTOR AB 1.9 (0-0.4) I was on medication when these tests were done. They tell me I have Graves. They talked me into having RAI.
I just want to make anyone aware that has been told their thyroid levels are ok and not had the antibodies tests. I have been worried and have been to ill to work and honestly thought I had cancer.
Kindest regards
Rosie x
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Rosie2-2
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Rosie, I can't really comment on your Thyroid problem as I have no experience of Graves but
*My point is I was told by my GP just before I went to hospital that my blood tests look OK now, she gave me a depression form and said to me <B>"you are 59 now, maybe you are not aging as well as you hoped" </B> *
What a freaking cheek! I think that is a dreadful thing to say to someone who is obviously unwell and hence possibly feeling vulnerable. I am so incensed on your behalf!
Why is it so hard to get tests done. I hope your GP was suitably apologetic over your B12. What were the levels for folate and Vit D, if they're not optimal maybe that's why you're feeling no better.
At least you have your diagnosis now but they've talked you into having RAI? Like I say, I'm no expert but I think there are a few people on here that might suggest that's not necessarily the best way to go.
Go by your instinct - I think a decision such as RAI etc needs consideration before such a step. I don't have Graves either but have read quite a few comments from those who've had it.
If you email louise.warville@thyroiduk.org.uk and ask for a copy of the Pulse Online article by Dr Toft (he was President of the BTA) she will send it after the weekend. You can then take your time and read what he suggests. Once your thyroid gland is removed (unless of course you have thyroid cancer) there's no turning back but you have to weigh up the consequences first. It would be easier if they were more amenable to prescribing other than levo if you weren't feeling quite well on it.
Thank you very much for your help. I did refuse it last year, hence why I was sent to Oxford for surgery but was talked out of it. They don't seem to remove part of the thyroid any more they all say they remove it all. My aunt had Graves and had the opp but they didn't remove it all and she was fine and is still fine today and never had to take any medication, that would have been in the 1960s, she told me she had the blood test one week and the opp the following. My mum had Graves also in the 1970s, I remember she was put on meds which made her ill and she ended up in hospital, all I can remember her saying was they were going to treat her with iodine and it was an old method, I don't remember anything about radio active and I do know she didn't have to take any meds after that. She died back in the 1985. I have always wondered what they gave her. I will email Louise. Thanks x
I'd put up a fresh post headed - 'Graves - is RAI the best way forward'. and in the body of the post 'Can anyone through light on the Endo's suggestion .......etc. Explain about your aunt and Mum experiences.
Those who have it/had it should respond and you will have more advice.
Hi, I had RAI twice within 14 months of each other way back in 1994-95. I have never enjoyed really good health before or after. I had a yearly blood test which they always said was 'fine'! Never had any thyroxine until 5 years ago and was on low dose 25 mcg until last September when increased to 50mcg. Still not brilliant more bad than good days. Recently referred back to an Endo after much pleading.
Recent scan showed gland had shrunk but thankfully no other issues. So the treatments didn't destroy my gland . I am antibody positive have had several health issues . I was extremely unwell when hyperthyroid.. I was led to believe my condition would be more manageable after the RAI, 21 years on and I'm still waiting for that to happen. I wish I'd waited longer and taken the carbimazole longer to see what happened.. but hindsight is a marvellous thing so they say. I was on carbimazole for around 18 months. x
Thank you for your response, I could not take Carbimazole I had a bad reaction so was put on propylthiouracil, over the time I have taken that for 7 years.
Bless you Rosie2-2, it's difficult making such massive decisions about your health.. especially when the professionals don't seem to offer sound advice. I wasn't given any advice apart from 'we have had no reports of ill effects from the RAI in over 50 years'. I often wander if they take any notice of feedback because I've never been ask to give any. I would certainly think long and hard about it if I were you, but your case is different from mine. The Carbimazole did help along with Propranolol for the crazy heartbeats. The first lot of RAI obviously wasn't effective and 14 months later my levels were through the roof and I was given a second dose..but strangely the only symptoms I experienced at that time was weight loss. I truly hope you can get through this with good results. It was over 20 years ago and hopefully things have improved now. Whatever you decide make sure you insist on proper test frequently after. This was a mistake I made but it was out of ignorance. This forum has given me plenty of sound advice now. xxx
Thank you for your response, it is just a nightmare isn't it as I have really lost faith in the doctors, they really haven't got a clue. How things have changed for the worst for us. When I told my work colleagues who are younger than me that my aunt had a blood test one week which was positive for graves and then they operated the following week they don't believe me. (that was in the 60s) It just makes you think now how long you have to wait, it has kind of become the norm. Everything is one big battle.
Worse thing I did !!! ... Wish I hadn't , can't get my levels correct now ... I suffer from breathlessness , palpitations , feel like choking , bouts of vertigo ... List goes on !!! ... Never had this before treatment
Does anyone else suffer these symptoms ?? Also , I have to take my dose thyroxine bit at a time in the day now otherwise I get a headache and tight throat .. Feels like they are in a vice !! .. Don't know wether it is too high dosage , am in 100mg .. My t3, 4 and fsh normal range !!! Help !!
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