Hi. My latest bloods done 22 June 2021 looked really good.
TSH <0.001
T4 8 range 10-24
T3 7.1 range 2.0-6.0
Now a week later my thyroid is still swollen. Any ideas as to when it will go down or is it the antibodies keeping it swollen? Have to say also I have lost my appetite on the PTU.
Thanks NIKEGIRL
Hello there.I have graves and am on carbimazole and levothyroxine .Some days my voice is croaky and my throat feels full when I swallow.I occasionally have ulcers at the back of my mouth and my throat is sore.I am having another white blood count today as they are concerned about that with being on carbimazole.I just assumed that some days the thyroid is more swollen than others and that it was just part of graves but I don't know for definite.I have been following your story and I am pleased that your bloods are better.Graves does seem to be an up and down disease.Best wishes to you.
Hi. You don’t sound well at all. Once on the carbimazole I got really sick. Flu like symptoms and some mouth ulcers. 4 months later I changed to PTU and thankfully have not had those symptoms back. How did u get on to block and replace? As u can see from my bloods in order to get T3 into range my T4 is going under range. Appetite is 1,000 calories a day. A few mouthfuls of food and I am full.
Hello again.I was put on block and replace mainly because I have TED and my opthamologist suggested it.I tried titration but my appointments were too far apart and my levels kept yo-yoing up and down.This made my eyes worse.At the moment they are concerned my white blood count may be dropping so I've had a blood test today.If it goes too low they'll take me off carbimazole.My last appointment I actually asked my endo if he would refer me to find out about a thyroidec tomy. It's for advice and information really. I have looked on here but there are so many horror stories it's scary.Its the after care and treatment that doesn't seem to be there.My appetite is also up and down I think if you don't feel great you aren't interested in eating.Also my throat feels a bit full and that can put you off.I did see a question from a 19 year old girl in New Zealand who'd had a thyroidectomy and was struggling. I looked up thyroidectomy on here and there were quite a few pages and she was amongst them.I think someone suggested t3 to her and I'm sure she got it and felt better.I think you are in New Zealand aren't you and were concerned they didn't prescribe it. I'll try and find it again and let you know. I think you just get fed up of it all every so often and so I thought I'd at least look at the possibility of having thyroid out.Anyway I'll stop my rambling now and wish you luck. I'll try and find the name of the young girl for you .
Hi. I was thinking about you and your predicament today. Would you consider going across to PTU if you were advised to stop your block and replace. I asked Elaine Moore on her website about the chemical make up of PTU and carbimazole. Elaine said chemically the two drugs are not even close in the chemical makeup and generally if u don’t tolerate carbimazole then u would be ok on PTU. I have found this to be my experience apart from my little blip a few weeks ago. It’s worth looking into as much as a thyroidectomy. To Each his own i always think and I say that without prejudice or malice. If u r considering thyroidectomy then maybe look at PTU as well. I’ve never had white blood cells issues on PTU.
Found the name of the young girl gocatboygo.Must have got muddled with another young girl as there is nothing about T3.She is in New Zealand though.Sorry.
Ok thanks. New Zealand don’t prescribe T3. I said to my dr why would I even consider a thyroidectomy if we don’t prescribe T3. Crazy. We r so bloody backwards here
Thanks for looking into ptu for me.I had not really thought about it.I just presumed that you only went on it if you were allergic to carbimazole in the first instance. I've been on it now since September 2018 with no problems up to now.My endo is very nice but I feel that he doesn't really know what he's doing.When he called me the other day he said " I've been treating you since 2018 , we really need to think about trying you off the tablets" I reminded him I came off them for 2 weeks last October and my T4 went up to 69.He said "Oh in that case you could stay on them for another couple of years" It doesn't really inspire confidence.I'd probably have a thyroidectomy tomorrow if I knew I was going to be optimally medicated afterwards. Even here in the UK it seems you have to fight to get it or pay privately which I couldn't afford long term. It's all so demoralizing when you don't feel well anyway . I'm trying to keep all my options open at the moment so Thank you again .
Hi. Just thinking about this post. Before coming off any ATD it is advisable to test the antibodies. This is my understanding. If the antibodies are still elevated and u cease the ATD then the thyroid levels will just off again and by that I mean increase. I am like you. Stop the ATD and within 4 weeks my T4 is at least 50 and T3 at over 30.
Hi. PTU can cause joint pain just to say that now but I haven’t had that. I’ve been having nausea and loss of appetite but my levels are the best they’ve been and my dr says the eating being reduced is my body coming down. I have lost all my muscles. I was bodybuilding before this. I have not had a scan of my thyroid. All I can feel is one side is slightly larger than the other by maybe 20%. I would like a scan. I think if u are worrying about cancer then u need to be assertive about your family history and get a scan done. I have thought of paying for a scan. I’ll put that thought with u now. U shouldn’t have to pay for a scan but I would pay for one if cancer was in the back of my mind. I would actually lose sleep over those thoughts not that I get a lot of sleep now. Another alternative option. Go along with thyroidectomy talks and surgery preparations if that means getting a scan. Just don’t commit to anything. U can always change your mind. Whatever it takes to get that scan would be high on my list ofTO DO’S. Please remember I am not a dr and my advice is only my experience.
How I got onto the PTU was because of carbimazole side effects, for 6 months I flip flopped on and off the carbimazole and then in October 2020 I was very sick. It wasn’t flu season in fact it was spring here. I had all the signs of argunulotis and ended up in ED. By this point I was sick and pissed off. I’m January my levels were through the roof T4 100 and T3 46.8 and I said I’m not taking the carbimazole anymore. My young dr didn’t know about PTU so I discussed with them the alternative being PTU. PennyAnnie told me about Elaine Moore and I emailed her about the drug composition and it was Elaine Moore who said if u don’t tolerate one u have a good chance of tolerating the other and so that is what I did. I’ve not looked back since, I’m being polite here. A few hiccups but nothing like the carbimazole. I was just thinking of u today whilst driving and thought If u r considering thyroidectomy then would u be open to trying the alternative ATD PTU? Like I said before no right or wrong. U have to do what is right for you but for me I would have to lose my liver function in order to have a thyroidectomy. U can’t compromise one organ for another. Touch wood my liver has settled down now and it’s happy days ahead for me. Well that’s the plan. Only God knows what my plan is and sometimes I wish God would send me an email and let me know his plan. PS I am not a Bible basher in anyway but I am deeply spiritual.
Thank you again for your advice.You have had a hell of a time , but have persevered.Waiting for endo to ring me about blood test yesterday.Goodness knows when that will be.Will certainly ask about PTU if there's a problem with carbimazole.Actually all the aches and pains I have I think they can be caused by carbimazole.I thought it was the graves as I had terrible aches and muscle weakness before I went on it .But in theory that should have improved shouldn't it if my thyroid is under control? HAVE you ever had a scan of your thyroid? One thing at the very back of my mind is that I don't know how bad it is inside.Sometimes my throat feels really full and "thick" and swallowing while not a problem , I can feel it if you know what I mean.Also I don't have a goitre or visible lump but cancer is always a worry.It's never been even mentioned as a possibility but my son has had cancer so the thought is always there. I thought the thyroid surgeon may do some checks such as a scan and that would put my mind at restI'm keeping all my options open so your information is valuable.Thankyou.
I have to say that I have preserved but I have had the most amazing support from one thyroid member on this forum. This person is just amazing. I would never have done it if it hadn’t of been for them being there daily to talk to. I will never be able To repay them for their dedication and selflessness.
Hi. PTU can cause joint pain just to say that now but I haven’t had that. I’ve been having nausea and loss of appetite but my levels are the best they’ve been and my dr says the eating being reduced is my body coming down. I have lost all my muscles. I was bodybuilding before this. I have not had a scan of my thyroid. All I can feel is one side is slightly larger than the other by maybe 20%. I would like a scan. I think if u are worrying about cancer then u need to be assertive about your family history and get a scan done. I have thought of paying for a scan. I’ll put that thought with u now. U shouldn’t have to pay for a scan but I would pay for one if cancer was in the back of my mind. I would actually lose sleep over those thoughts not that I get a lot of sleep now. Another alternative option. Go along with thyroidectomy talks and surgery preparations if that means getting a scan. Just don’t commit to anything. U can always change your mind. Whatever it takes to get that scan would be high on my list ofTO DO’S. Please remember I am not a dr and my advice is only my experience.
Thank you again for your kind information.My son had hodgkins lymphoma and there's no-one with thyroid problems in our family but we are all more aware now of looking for signs.I just wonder what's going on inside.My endo told me I could just have a referral for a thyroidectomy for another point of view and I didn't have to go ahead with anything if I didn't want.He would probably do a scan to look.I'll look at PTU for another alternative.Regarding the antibody levels I did ask him before stopping my tablets if we should check them but he just dismissed it saying it wasn't necessary.I know it can indicate whether it's worth stopping or not.Perhaps it is something I will have to pay for myself.The NHS if fantastic but they have to balance their books unfortunately .I'm so glad you have found support on here. It's brilliant to share experiences with someone in the same boat and the knowledge on here is fabulous, I agree with you there.Thankyou again and best wishes.
Oh I’m very saddened to hear about your son. My sons best friend died of lymphoma at age 11. Devastating is the word. Go for the surgery advice if only to get the scan for the peace of mind. That’s what I would do. Use the NHS service to get what u want. Dr is right about that bit. Endo should do antibody testing. It’s not easy. Best wishes to u. Keep in touch if I want.
Good day Friends,Just a small insight to share with you if you dont mind.
In Traditional endocrinology they check antibodies only once for diagnosis, if they go by American school theory that our immune system attacks our body for unknown reasons. Traditional endocrinology haven't found , a tablet, to control antibodies, so the doctors dont bother checking ATs with time. Endos with functional approach advise to check the antibodies regularly to see the dynamics as high levels of ATs are one of the signs another Graves flair can come back. With every flair chances for remission get smaller.
I took a course on managing Graves recently. The main areas they taught us to work on were:
- healthy sleep ( in bed by 10 pm),
- stress management and various relaxation techniques
- Working on life traumas (with a specialist preferably)
- healthy eating
- active living ( 10 000 steps a day)
- sort out main digestive tract problems , leaky gut, etc. ... Paleo/ keto/ foodmap diet if needed for 2-3 months
- check adrenals and support them if needed
- check vit D, Bs, Mg and top them up.
They reckon this complex will lead to ATs reduction and long-life remission.
Hope this helps. 
Best of health to all of us! x
Thank you for your reply.Actually I have just sent off a private blood test and am awaiting my results.I don't feel too good and wanted to see if they provide an insight.It will test TSH , t3, t4, antibodies, vit D , ferrite, folate, and vit B12.I do try and do all the things suggested but feel shaky at the moment and my resting heart rate is in the high 80's low 90's so I am avoiding anything energetic. I will post on here for help when they arrive in a day or two.Best wishes.
Sounds good. When I was mildly thyrotoxic my heart rate was 80-90. My thyroid is still swollen so I suspect my antibodies are still elevated. I stabilised my blood over the last two weeks and have been eating super lean. Not a lot of carbs. Lots of protein and fats. That how I like to eat all the time. I hope u find out why you feel unwell
Thankyou
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