[joy123]

#1060502

Hi, My name`s Joy and I`m in the UK, and would really like some advice! I was diagnosed with Graves 3 months ago at the end of May and I`ve been struggling ever since.
A few days after my diagnosis, I was taken into hospital with A-fib, kept overnight and given beta-blockers, also put on Warfarin and told to increase my carbimazole to 40 mg x 2 per day. I saw an endo and told her I`d not been feeling too good for about 2 yrs, she believes that`s all probably due to the Graves. She diagnosed Graves as I was having some mild symptoms ( gritty, bloodshot) to my eyes.
Anyway she said that by the time I get to see her again I`ll feel much better, but I`m afraid this hasn`t happened. I did feel a bit improved at the 4 week mark and was told to lower the carb to 20mg but since then I just seem to have got lower and lower with zero energy and just generally feeling so ill.
I have had a 24 hour monitor to check my heart and that`s come back as – good.
I`ve seen an eye specialist and she said my eyes are good with no sign of any problem there. So the Carbimazole must be doing something?
Now this past weekend I`ve been dry retching and feeling very nauseas and have managed to see my GP who`s arranged a full blood count, and has given me some anti sickness tablets – and I`ve also managed to get an appointment with my endo for the 10th Sept, so I`m basically doing all I can. But because I`ve not thrived on the Carbimazole I`m wondering if that maybe my problem and would really appreciate other views.
My last lot of bloods were within `normal` TSH 1.72 (0.35-3.5) Thyroxin 13 ( 8-21) on the 11th August.
Thanks
Joy

[Kimberly]

#1182976

Hello and welcome! Hopefully, your doctor will be drawing new labs on the 10th – and that will shed some light on what is going on. Some patients react very quickly to changes in dosing, so that could be a part of what is going on.

If you can ask for a T3 test in addition to TSH and Free T4, that might be helpful as well. T3 is the more active and powerful form of thyroid hormone, so if that is out of balance, it can definitely cause symptoms.

I’m not familiar with the dry retching as a classic symptom or side effect, so definitely mention this to the doctor as well. I have heard of patients feeling nauseous from anti-thyroid medications; taking the meds with food might help. (Although you want to be consistent in terms of whether you are taking the meds with or without food).

Hope that you can get some answers next week – please keep us posted!

Kimberly

[staceyallenhoy]

#1182977

I am a newbie too. I was diagnose with Graves disease 2 years ago and been trying to get everything under control since. I had my thyroid removed after many migraine headaches that lead to hospital stays and then a mini stroke.

I have 3 small children and had no time for this. In May of this year I was diagnose with TED. I am on synthroid 100mcg and for the most part feel 100 times better then I did. What I want are my eyes to get back to normal.

I have been reading a lot on Graves and Gluten free diets. My endo and I did a test 6 weeks gluten free and we took TSH blood test however the antibodies went up. My eyes decreased by one millimeter which is great but the antibodies are thru the roof.

Few questions: is there any evidence that GF diets really work and if does, do the antibodies need more time. This is a huge life style change and I want it to work. I feel so much better but I just am getting really frustrated.

Stacey

[joy123]

#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

[Kimberly]

#1182979

staceyallenhoy wrote:

is there any evidence that GF diets really work and if does, do the antibodies need more time. This is a huge life style change and I want it to work. I feel so much better but I just am getting really frustrated.

Hello – I saw one *very* small study that indicated that going GF brought about an improvement in TPO antibodies, although the study did not look at antibodies specifically associated with Graves’ (TSI, TRAb). There was another anectodal report out of Loyola University that a patient with thyroid eye disease saw improvement from a number of dietary changes, including going gluten free. However, this was just one person – and I’m actually surprised that Loyola released this info. I haven’t seen any studies where a GF diet made antibodies worse.

The antibodies can fluctuate for reasons that aren’t well understood, so it’s possible that it was just a coincidence that they went up after you went GF.

I went on a fairly restrictive diet for several months right after my Graves’ diagnosis (no gluten, dairy, soy, eggs), but I personally didn’t see much improvement. I went off of it after deciding that the high-maintenance lifestyle wasn’t worth it. *But*, since you mention that you are feeling much better, giving up gluten might end up being a good trade-off for you in terms of the extra prep work, cost, and challenges navigating mealtimes during social occasions.

Take care!

[joy123]

#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

[snelsen]

#1182981

To Stacy, just a note about diet. I find it totally unrelated to Grave’s. In the U.S, it seems everybody and their brother is deciding they are gluten intolerant. It is a big boon for the grocery stores, that is for sure! this is my totally biased opinion on this subject.
But if you feel better on it, do it, and take some time to figure out what “feel better” means. Cause you have a LOT going on right now!!!!
Best of the best, looking forward to hearing from you again

To Joy
I also have a fib. Also on warfarin. Better to have it treated, than not. But I don’t like it
I think the U.S guidelines for post RAI are a bit less strict, about being around growing kids. But if you can manage the rules they have, then do it. Easy to stay away from pregnant women for 10 days.

Do keep writing! I was a Matron (Bromsgrove, England) for a couple years the year they began admitting girls! THAT was quite an experience!
Shirley

[Kimberly]

#1182982

Thanks for the update! One issue to keep tabs on post-RAI is to make sure that your doctor is looking at Free T4 and *not* TSH in deciding when to start you on replacement hormone.

People who go too hypo after RAI are at higher risk for eye complications, so you definitely want to stay on top of that. TSH can remain suppressed for quite some time after treatment, so it is *not* a good benchmark in determining when to start replacement hormone.

Take care!

[joy123]

#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]

#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

[Kimberly]

#1182985

Hello – In the U.S., T4 testing is not that expensive (and *everything* here is expensive!) so hopefully, it’s something you could pay for out of pocket if needed.

The issue with TSH is that they can keep testing and find that it’s suppressed…still suppressed…still suppressed…still suppressed. And by the time the TSH finally reacts, T4 levels are scraping the bottom of the barrel. Definitely not a good spot to be in.

Also pay super close attention to symptoms and demand an updated set of labs if you start feeling hypo symptoms coming on post-RAI. Every patient is different, but symptoms of hypOthyroidism can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse.

[joy123]

#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

[JEH]

#1182987

I was diagnosed with graves in 1998 and chose the thyroid meds route for a variety of reasons. I’m in the US and on Medicare which allows for pretty much whatever testing the doc decides I need. Although I was able to go off all my meds in 2006, I still have nagging symptoms although my bp and heart rate have remained normal. Most notably I have gained weight slowly since I began treatment in ’98 and still suffer from heat sensitivity. I recently went back on T4, although my TSH was within normal range, and I believe things are actually improving for me just since going back on a small dose of T4 (37.5 mcg).

That having been said, I think treating Graves is much more an art than a science. Our glands cannot function normally when under assault from our immune system, and even when they are removed, supplying hormone artificially does not match what our bodies were created to do. I have learned to be grateful for normal vital signs and minimal other symptoms, and the fact that I was able to keep my gland. Ours is an inflammatory condition and the inflammation is the culprit, not the gland. It is our immune system “attacking” our gland that is causing the problem, but if the meds don’t work for you, then there isn’t much of an alternative other than destroying the gland. Best of luck to you.

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