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Thyroid UK
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Support after finishing my course of carbimazole

Hi,

I am now 6 weeks carbimazole free my bloods from last week are...

Tsh 2.11 (0.27-4.2)

Ft3 4.8 ( 3.1-6.8)

Ft4 18 (12-22)

I am feeling so much better in myself from not taking carbimazole I do still have a muzzy/ unbalanced/confused brain (started 2weeks after stopping carb) and suffered with abit of depression this week (mainly thinking when is this going to end and just can't believe whats happened this last year and how my life has changed and that I can't cope but I know I will get back to normal) I have now seen 3 different gps about this and they have said I need to be patient my body is trying to rebalance itself and after taking carbimazole for 14 months And being so symptomatic I'm not going to bounce back to normal straight way. Oh patience why I have I not learned this by now With a year or so of thyroid disease 🙄😂

Anyways my reason for posting I just wanted to see if anyone has got any tips on how I can support myself and hopefully keep myself in remission?

I am not on any medication at all now I have just seen a nutritionist as I have been gluten,dairy,soya,sugar free only drinking filtered water for 9 months now And this diet doesn't seem to bother me though I would like to reintroduce the odd alcoholic drink back in and some dairy !! This has massively helped my digestion even the nutritionist said how well I had reacted to this But she said to start to take probiotics for next 3 months, I have regular acupuncture, I'm back to excercise (not as much as before) I meditate. I'm just wondering about herbal teas (I hate the taste of tea but I will do anything to help 😊 ) any recommendations?

Also is it normal to take time to get back to normal after finishing the carbimazole course?

Many thanks

Lisa

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Hi Lisa254, well done you! It is exciting to read about your recovery. I’m not sure if I can advise you much but in terms of teas, my husband enjoys ginger tea, turmeric and cinnamon and some others from Pukka.

Do you eat nuts and grains eg. rice, gluten-free porridge?

My husband is feeling very sluggish at the moment, we think his levels are quite low. Would it be ok if I send you his latest results to see what you think?

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Hi ya ... ooh I'll have a look for the turmeric and cinnamon sounds nice, I just can't stand the taste of tea 😂. Yes I eat nuts and grains, I have gluten free muesli (deliciously Ella its very low in sugar too) but I'm going to try a veg based breakfast after seeing the nutritionist I think it's going to be some getting used to

Yes sure send them to me.. I'll have a look back on mine and see how I felt if they are similar 😊 X

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Thanks Lisa! My husband eats veggie breakfast and he got his ideas from blog fedandfulfilled.com He makes hashes in jars for few days so it’s easier during the week.

In June, he was on 50mg of PTU (I read that is like an equivalent of 10mg of Carbimazole) and his results were:

TSH 0.01

T4 10.2 ( 10-28.2)

T3 5.3 (4.3-8.1)

He asked endo to reduce the dose to 25mg (I guess like 2.5mg Carbimazole) and had it tested 2 weeks ago:

TSH 0.01

T4 10.6 (10-28.3)

T3 5.1 (4.3-8.1)

His endo says to stay on 25mg but he started taking it every other day since last weekend as he feels very sluggish day by day. He is thinking of coming of the drugs for a week as he is worried he had gone hypo.

If you could let me know your thoughts, that would be much appreciated. X

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Oh great thanks for the website link I'll have a look 👍

I felt really sluggish and at my worst when tsh 4.07 ft4 14 ( lowest its ever been) and ft3 4.8 Im just generally most interested in what my ft4 is as looking back at my results the lower it is for me the worse I felt. How long has he been on the treatment for now as I remember he started on carb?

Also when he says sluggish is it heavy body low energy or slow cognitive behaviour or I guess both? I have found my energy levels are so much better now I'm not on carb and my cognitive behaviour has improved though I still really struggle with concentration but suppressing the thyroid in turn then suppresses your brain function as I understand so it's not surprising!

I would probably try and stick with the 25 mg every other day for another 3 weeks. I noticed when I dropped dose I didn't feel any difference for about 5 weeks so if he has only dropped a week ago I would probably stay with it for a few more weeks and get tested.

With some of my dose changes I emailed Elaine Moore maybe see what she says.

It's so difficult to judge my endo has been great but I do feel they pluck dose figures and treatment times out of the sky. I have a work friend who was hyper 9 years ago her ft4 was 97 on diagnosis she took carb for 3 months she felt so ill and stopped and she has been fine!! ( I'm not as brave as her I'm always telling my endo what I'm doing 😂)

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Thank you so much Lisa. He has been on treatment since February. He is extremely tired and has also noticed a bit of a problem with memory and concentration.

I have emailed Elaine, need to be patient and wait for her response.

His ft4 is pretty low now and I remember that he felt great when it was 25.

We will take your advice and stick to every other day for few more weeks and get tested. Thank you so much!!! 🌹x

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That's ok 😊 Yes it is low and I'd be feeling awful Too!

What I would say I'm afraid is I suffered with fatigue sometimes severe exhaustion and cognitive issues through my treatment (apart from the first 4 months) it was normally worse on 2nd,3rd, 4th week after a dose drop sometimes I didn't think I could even walk 15 mins down the road to the shops so I drove but as I decreased the carbimazole to 5/2.5 mg it got a lot better.

Hope Elaine gets back to you soon 😊 X

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Fab advice from Lisa, hope you do not mind me jumping in, I have a similar problem with my results at present, only discussing it with Lisa the other day, my ft4 is bottom of the range at 12.5 and my ft3 is around 5.3 so I'm feeling lots of horrid symptoms and feel blah😠 I'm on 2.5 every other day for the last 7 weeks but this dose took longer kari to kick in this time. I felt better with fr4 in upper range 17.5 and ft3 above mid range- its a lot of juggling around with different doses. Its so annoying😠

Hope your hubby is feeling more like himself soon, lol I woke this morning with a nervousness in my mouth- wot is that about!! Its so weird some of these symptoms.xxx

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Rmichelle, thank you for jumping in! It is reassuring to speak to others with the same condition. It is so annoying, we are off on holiday this Tuesday and he is feeling dreadful. His pulse was 56 this morning. We have also been planning to start IVF in September but if he still isn’t ok, I don’t think that’s a good idea. This illness is dictating our lives at the moment 🙁 I hope you start feeling better soon too! xxx

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Rmichelle I was thinking of you when I was writing back !....

I'm just wondering I have read some info recently that a lot of hypos are actually hyper initially but go undiagnosed due to mild symptoms/misdiagnosed and then the thyroid naturally burns itself out to become hypo, I don't know which one is easier to manage, has your husband got both graves and hashimotos anti bodies? (This is what I have)

aww it's horrible trying to keep to plans with this illness you never know how you will feel. Hope your husband feels better over the next few days so you can go 😊

I was meant to be on a family holiday in Barcelona for this Christmas just gone but I had to cancel and loose all my money as I was too ill to travel so no one ended up going I felt awful 😬 But it was the right choice. So I can totally understand what your going through. x

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Lol yes I'm always around, not far behind😀 plus its chucking it down outside-yak so I will be dipping in and out of posts today, I keep saying I'm going to clean the bathroom sink but 2 hours later the bottle and cloth still on the side!!! 🌟 I'm disappearing now for a while, I'm going for it xxx

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He had an episode of hyper 9 years ago but his antibodies were never tested and we didn’t realise that he had Graves until February this year when it all terribly flared up again.

His antibodies were tested in Feb:

TRab 11.4 (0.81-3)

TPO 67.2 (0-34)

His mother and sister are both hypo but their antibodies were never tested. They are not interested in checking as they seem to be ok on thyroxine.

Sorry to hear about your story with Barcelona. It must have been hard and sounds like your family were understanding. And the most important is that you are back to your normal self now :) x

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Thankyou its good to know there are others out there in the same boat, its not so lonely then, I know exactly what you mean about it dictating your life, as a family we have not been on hold last year or this year, we have day trips out mostly because I never know how I'm going to be- its crazy. Ooh that pulse is slightly low but I remember mine being like that with being hypo, but his tsh does not indicate hypo but his ft4 is very low in range but has crept up more since reduction but to raise them frees he would need to reduce further I would think, like mine- mines been stagment for a few months, I'm hoping like Lisa my Endo will say come off it and see what happens.

I really hope you can start ivf in September that would be so great for you both but remember if it does not happen it will soon enough in time- I will keepy fingers crossed for you🙌 hope you both enjoy your hols too and have a relaxing time as you both deserve it.xx

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Thanks Rmichelle. I really hope that we can still go on holiday but we are visiting my sister abroad and he might feel awkward if he has to rest a lot. We will try to have a good time anyway, providing he doesn’t get worse before Tuesday and when we would have to cancel everything.

Shame about IVF as I’m getting older but then his health is the most important and I still think it should happen naturally once his hormones are balanced. As we know, this is not easy to achieve and recovery takes time. Maybe we just need to let it be for now. X

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I understand about the ivf I have a friend who went through a couple of years trying ivf which did not prove successful for them they did not want to go down the root of other treatments as they were very very expensive but the happy side is she got caught pregnant 2 years later at the age of 38. So you never know when you least expect it, it can happen, I know its not quite the same but I had my daughter at 36 so I was a late starter too.

I do wish you every success with ivf👍

.

I know what you mean by resting but it has to be done , maybe one day medical science will cure this eh, like Lisa said to me the other day they have only scratched the surface with thyroid disease!!

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I’m already 37 and we have been trying for 3,5 years but I guess everything is still possible. Thank you for your kind words.

I do feel as well that medicine isn’t giving thyroid illness or even all autoimmune illnesses enough attention. The endos seem to be trained mainly in diabetes and haven’t got a clue about thyroid. Maybe functional medicine is an answer. X

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💗🌟

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Sounds like your diet is good. When I finished my block and replace I made sure I ate healthily pretty much same as you.i eat fish at least twice a week though and I have a two egg omelette every morning for breakfast with either blueberries, mushrooms, spinach or a mashed very ripe banana whisked into it.

I very rarely drank before Graves but I do have the odd glass of red wine which is supposed the be good for you or prosecco - which probably isn’t! but it isn’t a regular thing.

I took high strength vitamin C from when I started the carbimazole (on my pharmacist’s advice) I often take CoQ10, I take a daily probiotic - have tried all sorts from ones that live in the fridge to Optibac that I use now and am happy with. I do my own blood tests and top up my B12 and vit D if they get low.

The mediation is a good thing I think and you will find you build up your exercise as you get fitter. It’s hard to believe the effect Graves has on your muscles but they will go back to pretty much how they were before.

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Hey fruitandnutcase,

Thank you for your reply, I'm the same I've never been a big drinker but would like to go back to having a wine now and then! I'm just too scared to break what I've done 😂

I know what you mean about muscle loss I used to cover 26-30 odd miles a week running plus cross train my calves And legs soon turned into skin over tiny muscle I still feel a little 'loose skinned' 😂 But I use a garmin heart monitor when I light train now and can see and feel that I am improving.

I do not take any supplements mainly because they give me indigestionand I want to try and do it through food but also my blood tests have always come back normal and I don't have enough knowledge about optimal levels but I have now ordered a probiotic off amazon that my nutritionist recommended so maybe I'll start looking into my vitamins too.

Did you get your antibodies rechecked ? I'm unsure whether to my endo won't do it so I will have to pay privately but I haven't had them tested since sept 17 and even if they do come back positive I don't know whether it will tip me over the edge and I'll be paranoid about a relapse 😬

Ooh I might try that omelette with banana sounds yum thanks 😊

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I use Blue Horizons home fingerprick Thyroid 11 bloodtest. I started originally when I was told that should I relapse my next step was radioactive iodine. Considering I hadn’t even had my T3 tested I wasn’t impressed.

So I started testing for myself when I went gluten free - I was only trialing it for three months but the results were so good I haven’t eaten gluten since.

I don’t know for sure but from what I’ve seen people writing on here I don't think GPs will test antibodies after they have done it the first time. I’m sure you will be fine with a probiotic though.

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