[joy123]

in reply to: Hi – RAI update in UK. #1183155

Nobody said this was going to be easy, right?
I`m now 5 weeks and a bit post RAI, found I`d gone under active and eventually got my GP to prescribe 25mcg levothyroxine on a trial, twelve days ago.
My latest TSH 4.48 (0.35-3.50) T4 12 (8-21) was thirteen days ago. The day before I started the levo.
Which is under a bit but enough for me to suffer.
I`m so tired with nausea, headaches and occasional sweating…oh and cold!!
My next bloods are this next week, with the nurse calling me on the 24th to say whats next.
I think the levo is helping a bit – but what I`m wondering is how long before I notice a bigger difference?
Ok, I`m not a patient, patient and 5 weeks in from RAI is early, but I feel pretty crappy still.
Any opinions please- am I expecting too much too soon?
Many thanks

[joy123]

in reply to: Hi – RAI update in UK. #1183153

Thank you Kimberly
That`s so reassuring that the numbers seem ok.
I`m beginning to feel anxious and I`m usually an upbeat lady so I`ve especially noticed my lower mood, which I don`t like!!:o

As expected the nurse told me to stop the carbimazole and go for bloods in 3 weeks time as planned. Those bloods will show the T4 as well.
She also told me that a TSH 3.69 they wouldn`t treat! I was like yikes when I came off the phone – and why she volunteered that information, I`ve no idea. So I`m left hoping the drop in Carbimazole will put me in a treatable place?
Thanks again
Joyx

[joy123]

in reply to: Hi – RAI update in UK. #1183151

I had the impression the nurse was meaning they wouldn`t let me become too hyper- but you may be right Kimberley!

More has happened, I started feeling cold the past few days, tired and headaches but worse was a low mood.

As I`m only 3 weeks post RAI, I didn`t expect much information from a blood test – so I saved the official thyroid nurse`s blood form for when its supposed to be used in 3 weeks – and used the blood form the doctor gave me last week when he checked my sore eyes. On the form he`d asked for WBC and TSH only but I thought hey ho I`ve got this so why not use it?

I`ve gone hypo at 3.69 ( 0.35- 3.50) at exactly 3 weeks post RAI.
I`ve been on 5mg carbimazole since 5 days post RAI- so I expect they`ll suggest I stop that – I`ll know later as the thyroid nurse is calling me back.

I didn`t expect this to happen so quickly and I`m dearly hoping that this is the end in sight. Or can it mean my levels may still be fluctuating?
Thanks in advance for all your advice, past and present.
Joy x

[joy123]

in reply to: Hi – RAI update in UK. #1183149

Over here on the other side of the pond things went downhill right on the 14th day post RAI. I had sweats, sore eyes, headache, palps like in the past.
So I phoned my thyroid nurse, who verified what I was thinking myself, that I`m `dumping.` bigtime!
However the nurse did arrange for a GP to examine my eyes just to be sure I didn`t need referring to the eye specialist again. I`d seen the specialist before, she said I have minor Graves eye problems , gave me eye drops and cream, discharged me- but said she`d be happy to treat me if needed.
Anyhow the GP was happy that my eyes were ok, they look ok but they feel sore, so I`ll just keep using the eyes drops and hope they improve.

A welcome piece of info from the thyroid nurse was that, although it`s not comfortable for me- the symptoms I`m having from a doctoring point of view are very good. It`s indicating that the RAI is working and working well!
She said that if I`m no better in a week`s time, they will intervene.

She said that some people can suffer badly post RAI and they won`t let me, but to give it a week and then get bloods early.
I didn`t think to ask but wondered if anyone here knows what they can do in that circumstance?
I already feel better than day 14 so I`m hoping I won`t need them to intervene- I just wondered what they can do?
For anyone about to go through RAI – I`m day 16 post RAI and getting glimpses of normal. I made the right decision to have it done.
Joy

[joy123]

in reply to: Hi – RAI update in UK. #1183147

Thank you again Kimberly, in fact I can`t thank this forum enough as I`ve found so much information on here to help me through this.

Day 6 post RAI and my sore throat has gone.
I think I`m `dumping` thyroid as I`m getting hot now and then.

I`m still having problems with my balance – which is worse since the RAI. I have balance issues from a previous surgery to my ear where the docs had to destroy my left sided balance, and even if I have a cold this causes me problems.
I spoke to my GP when I was 1st diagnosed and he wasn`t concerned but said this is bound to cause me imbalance too- although if it carries on I`ll speak to him again.

I`m happy so far with the outcome of RAI and I`m having moments of normal, where at one point I never thought I`d feel normal again!
I actually cleaned the house…..well some of it…..I even wanted to do it!
I hope this update helps someone else make the hard decision of whether to have RAI.
Joy xx

[joy123]

in reply to: Hi – RAI update in UK. #1183144

Thanks Kimberly
you have all helped me a great deal understanding this.

My hospital provides me with a thyroid specialist nurse, who I can phone. She sends me blood forms to have my blood drawn at our local cottage hospital, then the nurse calls me to tell me what amount of carbimazole to take.

Now I`ve had RAI the nurse has sent me another blood form and a list of hypo symptoms to watch out for- and to get the blood drawn if I get them. Or if not in 4 weeks time.
The NHS can be hell sometimes but once you`re in the system – it can be wonderful, the biggest problem is getting our doctors to treat our symptoms and not our levels but that seems to be happening world wide!

Day 3 after RAI and I feel different in that I WANT to do things -against haven`t wanted to do anything for over a year.
Trouble is some old health problems are kicking off big- time. I had previous surgery that gave me balance problems which I usually deal with ok. Right now my balance is terrible- I feel drunk! I`m thinking that RAI has affected my `weak spot` – my balance.
Also yesterday and today, I`ve had a mild sore throat and mild headaches. Plus feeling warm that comes and goes.
Your opinions are really appreciated
Thanks again
Joy x

[joy123]

in reply to: Hi I`m a newbie and would really appreciate some advice. #1182986

Thanks I`ll keep a close watch on my symptoms.
The postie turned up with my letter today, I`m booked into have the RAI 9th Oct. They`re doing a scan first then giving me the RAI in the form of a drink after they`ve looked at the scan.
Yay!! Not too long to wait.
warm regards
Joy

[joy123]

in reply to: Hi I`m a newbie and would really appreciate some advice. #1182984

Hi Kimberly
thanks for your reply. What`s annoying is that here in the UK the doctors only go by the TSH. I`m not sure if that will be the same post RAI but if so I`ll have to find a way around it and if needed get my bloods taken at one of the private hospitals. Once I`ve had a private doctor prescribe what I need, hopefully the NHS doctor will prescribe the same.
I was sent to an eye specialist who checked my eyes and she said there was no sign of any problems there at the moment, but if I have anything go wrong post RAI she will gladly treat me.
I was advised to take selinium when I was 1st diagnosed with Graves and after a month of taking it, I felt my gritty eyes improving.
I`m still waiting to hear when my appointment for RAI will be, I`ve begun watching for the postman every morning now. Though sometimes the NHS secretaries phone with an appointment, before sending a letter out.
I want it done and dusted now
kind regards
Joy x

[joy123]

in reply to: Hi I`m a newbie and would really appreciate some advice. #1182983

Hi Shirley
wow do you mean you were a hospital matron? If so many Brits would welcome you back as our hospitals haven`t been the same since they stopped having a matron in charge. Also you`d know all about the NHS after working there – if anyone is very ill, it`s the best system going but for other things such as Graves, it`s not!
I like the idea of your USA system where you pick a doctor yourself, oh my word, we can`t do that here- unless we `go` private and this can run into hundreds of pounds.
I had afib just once, which put me into hospital overnight. I`ve had ecg`s and a 24 hr monitor since and my heart seems fine now. I asked my endo last week whether to quit the warfarin, she said have a final ecg done and if its ok, to stop the warfarin. This is what I did last Friday- a lovely nurse at our health centre did the ecg and got a doctor to call me with the result- and all was fine, I double checked as I was a bit nervous in case I end up afib again, but the doc said now that my thyroid`s behaving better it shouldn`t happen.
Did you have afib because of your overactive thyroid Shirley? Maybe you`ll be able to stop it too at a later date?
Sorry that was a bit of a long post but I was thrilled to hear you`d worked as a matron over here.
Please write again, I can send my email if you`d like?
kind regards
Joyx

[joy123]

in reply to: Hi I`m a newbie and would really appreciate some advice. #1182980

Hi all
I saw my endo as planned on the 10th and have been booked for RAI within the next 6 weeks!
I didn`t get the chance to say much at the appointment as the endo just asked if I knew much about radioactive iodine treatment and when I said that yes, I`d researched it- she said they`re booking me in to have it done.
I was relieved as the carbimazole doesn`t seem to be doing much for me and in my circumstances I`d rather get the RAI. The endo did say that staying on the drugs long term isn`t good – and when I said my main concern was going hypO, she told me not to worry as they`ll give me the right amount of thyroxine if I need it.
I`ve read a lot of bad reports on the internet about RAI but got to thinking that millions of people have had it done all around the world, and we only get a handful posting – plus the people who had success are probably off enjoying their lives. I`m almost excited to `see` an end in sight to this horrible disease.
I`m with the NHS so there`s no telling when the RAI will happen, although if they say 6 weeks it usually means within that time period- but it could be sooner? I`m to stop the carbimazole 5 days before the treatment and restart it 5 days later until a blood test 6 weeks after. Then they`ll inform me whether I any meds. The endo said I`m to stay away from pregnant women and growing children for 10 days.
I`ll let you know how it goes.
with regards
Joy

[joy123]

in reply to: Hi I`m a newbie and would really appreciate some advice. #1182978

Thanks Kimberly and Stacey
Kimberly, they only test thyoxine and TSH here in the UK (for some reason?) and I`ve already had the blood drawn for the appointment on 10th but I`ll ask if I can have the T3 next time. As you`ll know it`s NHS but I can always pay privately if needed. I`m wondering if the endo may suggest RAI? I`ll let you all know. I `ve got to the point of welcoming it!!
Warm thanks
Joy

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