Graves/ Under active Advice Please.

[kaylala68]

Hi All,

I have a friend who is currently being treated by NHS. She has very little knowledge and understanding of thyroid disease. I have tried to get her to come to the forum but she hasn't got the energy to be bothered she says.

She told a mutual friend that she is taking carbimazole sometimes and levo others as she swings between the Two.

I haven't come across this before so I can't comment.

But the hospital doctor has said they will take her off all medication in the near future to see what happens with a view to removing thyroid gland by RAI or surgery.

I am worried for her as she is really not very well and has no understanding and doesn't really take in the info she is given and doesn't seem like it's important to her.

But I am convinced that that is part of the symptoms the mental wellbeing is being affected.

My question is should she be taken off thyroid med's completely?

[mistydog]

If they take her off they can get an idea of what treatment is best but they will push for TT or RAI and then levo which given her knowledge and current state of mind, may or may not be a good result.

I know it's hard to watch someone we love going through this experience but sometimes all you can do is be there and pick up the pieces afterwards.

[kaylala68 in reply to mistydog]

Thank you so much for your support.xx

[SuzeW]

Hi - I've got graves too. Usually presents itself as overactive thyroid - hence taking carbinazole and often beta blockers to calm the heart. Generally treated for 18 months - in which time levels should have normalised - but shouldn't have got low enough to take thyroxine if they've been monitered / if she's been looked after! She should be having regular blood tests & speaking to consultant. After 18 months they take you off meds & hope you go into 'remission'. And that thyroid kicks in. If not - time to start discussions about rai & surgery. Maybe suggest she has her bloods checked & go with her to discuss them with her doctor to see where she's at? Hope that helps a little? X

[kaylala68 in reply to SuzeW]

This helps me thank you xx

[Karen321]

Would your friend be willing to see an endocrinologist privately? I too have no faith in the NHS to treat my Graves. It sounds to me like she is being overmedicated on Carbimazole and then they try to correct that with Levothyroxine. All the see sawing will make her feel like death and yes it does affect your mental health. She really needs to take control and see an endo who is supportive. It could be that she has both graves and hashimotos. I can recommend my endo depending on which area she lives in. She also needs to have bloods done every four weeks and they need to test TSH, FT3 and FT4 as a minimum and also VitD3 and B12 as deficiencies in these can cause awful symptoms

[debbymcc60]

This could be something called" Block and Replace" a strategy for managing Grave's. I don't know much about it as although I have Graves I wasn't treated that way.

[Mcj68]

Hi i know exactly how your friend feels. I have had periods of both hyper and hypo over the last 3 years but more noticably in the last 6 months. I was initally diagnosed as hyper and put on carbimazole then i went hypo and was given levo. With the levo I then went hyper again and was told to stop levo but no medication was given with regards the hyper to see where it went. It went hypo and I was given levo again but last week went hyper and was told to stop the levo again. At present I am hyper. My GP doesnt know what to do but has decided to stop all medication. I have been waiting 6 months to see a Endo so maybe when I see the Endo they might have a better idea what is going on. My GP thinks its the menopause which is causing my thyroid problems and it will pass. The bouncing between the two is really hard going. I have had extreme symptons with both the hyper and hypo and it has really affected my mental health as well. The doctors dont seem to know how to deal with this bouncing between the two so i can understand why your friend feels so lost she has to keep going maybe the no medication is the way forward. I have been off the meds now for 2 weeks feeling terrible but hoping it will stabilise over the next few weeks. All you can do for your friend is to support her trust me she is going through an awful time but she is not alone.

[Silver_Fairy]

As said above she may be on Block and Replace, where the patient is given enough Carbimazole to block the hormones and then given Levo to replace them. I was on it and it needs to be managed carefully (and she should be taking both at the same time!) so that the patient's levels are kept neither too high nor too low.

[Lou17]

Hi Kaylala68

I too was on block and replace being treated for graves. I was taking carbimazole and thyroxine at the same time. Eventually all meds were stopped once i was euthyroid. Unfortunately within a few months i became hyper again and was given RAI treatment. Eventually in remission and have been for couple of years now. Hope this helps.

Have annual blood tests through GP now though and am always told " no further action required" as well as " levels are a bit low but i see you do seem to flutuate" 😡

[kaylala68]

Thank you all for the wealth of knowledge and understanding all much appreciated and I will pass on everything I have learnt. Xx😁