Advice from Graves sufferers please

I am after advice regarding my sister who was diagnosed with Graves at Christmas.

As someone hashi’s, I know about the symptoms I had before having optimum treatment but I don’t know about Graves disease.

Basically she is driving me nuts. She is so negative about everything, says things just to wind me up and to get a reaction and is generally being just nasty. I try to put it all down to her illness as I know she is depressed as well, but this is making me ill.

She lives with our mum (85) and has been very down about it, so my husband and I decided that I should help her more and we both sell and buy a bigger property to live together. She has no friends in this country as she used to live abroad, so I bought golf clubs (her only love) and have been going to lessons so I can get her out and about to meet people. I can’t see how I can do anymore but I am now wondering if this is not all about the disease and it is just her.

Can anyone who has had this horrible thing tell me if these are normal symptoms of Graves.

32 Replies

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  • Is she on medication for her thyroid ? I had an overactive thyroid about 20 years ago. I lost loads of weight, but I was so angry with everyone. If she is on medication, perhaps she needs to go back to her GP and get another blood test.

  • Yes she is on Carbizamole, 20mg I think, but the doctor said it could take a year and a half to get her levels back to normal.

  • I think she should go back for another blood test. She should be having them regularly, so he knows whether to up her dose or not.

  • She is having them every 6 weeks and is under an endo. Not sure about the endo as she said depression is not a symptom of Graves. My belief is, if you are not feeling well, you can feel depressed. Thanks for your reply.

  • Hopefully she will start to feel better once they've sorted out her meds.

  • On the verge of being diagnosed with Graves, told I have hyperthyroidism but still having tests to determine the cause. I can tell you that I have felt depressed for over a year, I'm very angry and get easily agitated. Things I believe are down to the hyperthyroidism. I started meds yesterday and they say it can take a while for them to relieve symptoms so I would hazard a guess that your sister is very depressed and low and that she may not be able to help being horrible. Even when the meds start to have an effect, she may still feel low due to the worry she has about Graves and the associated eye disease. It's very scary thinking that this disease could affect your eyes and completely change the way you look. I'd try talking to her and maybe getting her some professional support.

  • I wasn't right nice when I was first diagnosed with Graves........and probably for quite a while after :/

  • Thanks everyone. It helps knowing that others have been there. I will keep trying and not pull out of the house sale just yet.

  • I have graves and was really hyperthyroid at first as t4 was 86 ( 10- 26 ) . I can honestly say I felt that somebody had taken the old me away as prior to being poorly I was outgoing , bubbly , energetic and confident. I was replaced by this person I no longer knew , anxious, snappy , heat intolerant , couldn't cope with anything and had horrendous jittery feeling all the time . I was also completely exhausted but on edge at the same time and then I realised that person was me . My 17 year old daughter said I was a nightmare to be around . I am sure once your sisters levels start to improve she'll start feeling and acting a lot calmer . It truly is horrible until under control . Hope this helps .

  • Thank you, all the comments are really helping. We had a major argument started by her yesterday which is what prompted my question. I have emailed her and apologised for my behaviour in the hope that we get back on good terms.

  • Perhaps your sister has been using up her nutrients at breakneck speed and is very deficient? I got the impression from somewhere, sorry can't remember where, that low nutrients are common in both hypothyroidism and hyperthyroidism.

    Perhaps it is worth suggesting that your sister gets a Thyroid Plus 11 done from Blue Horizon or the equivalent from Medichecks - although it won't test her TRAB antibodies.

  • Yes, she has had this test which I made her take last year. It was these results that made her go to the doctor as she didn't believe there was anything wrong with her. I think she has had it for a long time and the very slow decline in her health just makes her think her current situation is normal. What relevance are TRAB antibodies as I am only familiar with the Blue Horizon antibody tests.

  • TRAB antibodies are the ones that show Graves' Disease.

    See the table on this page, and also read the text :

    labtestsonline.org.uk/under...

  • If you could let us know what her nutrient results were - ferritin, vitamin D, vitamin B12, folate, then we could tell you what supplements she would benefit from.

  • Thanks for the table, it is a shame Blue Horizon don't do that test. She had B12 from the doc as that was low but they wouldn't treat the others. She is now taking Vit D. These are her results back in December. I have bought her another test to take in the next week or so as they are 20% off at the moment.

    Biochemistry

    CRP 0.50 <5.0 mg/L

    Ferritin H 448.2 20 - 150 ug/L

    Thyroid Function

    TSH L <0.005 0.27 - 4.20 mIU/L

    T4 Total H 215.9 64.5 - 142.0 nmol/L

    Free T4 H 60.16 12 - 22 pmol/L

    Free T3 H 32.07 3.1 - 6.8 pmol/L

    Immunology

    Anti-Thyroidperoxidase abs H 244.4 <34 kIU/L

    Anti-Thyroglobulin Abs H 210.2 <115 kU/L

    Vitamins

    Vitamin D (25 OH) L 14 Deficient <25 nmol/L

    Vitamin B12 L 203 Deficient <140 pmol/L

    Serum Folate 9.19 8.83 - 60.8 nmol/L New Range

    Any idea why her Ferritin is so high?

    Thanks

    ______________________________________________________________________________________________________________________________

  • Blue Horizon do test TRAb antibodies, but it is sold as a separate test and is expensive :

    bluehorizonmedicals.co.uk/e...

    Medichecks also do a TSI test as a separate test, also related to Graves' Disease :

    medichecks.com/thyroid-func...

    I'm not sure how useful a TRAb/TSI test for your sister would be (because I don't know enough). You already know she has Graves' Disease and I'm not sure another test would add anything to what you already know. I'm afraid I don't know enough about Graves' antibodies to tell you the relevance of the TRAb (blocking) antibodies and the TSI (stimulating) antibodies. I've never studied the difference or the relevance to testing both.

    Your sister has Hashimoto's Thyroiditis as well as Graves' Disease. Having both Graves' and Hashi's is a horrible thing to have, apparently, and makes treatment particularly difficult.

    livingwithgravesdisease.com/

    elaine-moore.com/Articles/S...

    Look up Hashitoxicosis. It is relevant to your sister. I have to say I'm on very shaky ground here - I don't have personal experience of this and have only picked up tiny bits and pieces. Do a forum search for hashitoxicosis - the search finds 80 references to it.

    This old thread from a different forum has far more knowledgeable people than me by a long way :

    healthboards.com/boards/thy...

    ***

    Going back to the other results...

    Vitamin B12 L 203 Deficient <140 pmol/L

    Serum Folate 9.19 8.83 - 60.8 nmol/L New Range

    You should join the Pernicious Anaemia Society community here on HU and ask them about the above results :

    healthunlocked.com/pasoc

    ***

    Vitamin D (25 OH) L 14 Deficient <25 nmol/L

    This is way too low. An optimal level is about 100 nmol/L. Some people go up to as much as 150 nmol/L.

    I really think your sister should show this to a doctor for some heavy duty prescriptions. But if she doesn't want to, then vitamin D3 in various doses is easily sourced on Amazon and other supplement sites.

    I know Clutter has been very deficient in the past. Perhaps she could suggest a dose and when to re-test.

    To get finger-prick testing of vitamin D alone you could use this link :

    vitamindtest.org.uk/index.html

    Vitamin D3 raises absorption of calcium from the diet. It is essential that calcium goes into bones and teeth rather than getting deposited in soft tissues. To achieve that the body needs plenty of vitamin K2 MK7 (also available online) and magnesium.

    There are lots of magnesium supplements available of various different kinds, and people need to choose the type that appeals to them. The required dose is 300mg - 350mg per day.

    naturalnews.com/046401_magn...

    metabolics.com/blog/the-def...

    globalhealingcenter.com/nat...

  • TraceyLE,

    My vitD was <10 and I was prescribed ProD3 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which raised vitD to 107.

    I agree with humanbean that if your sister has already been diagnosed with Graves there is no point in ordering TRab or TSI tests.

  • Thanks I will leave that then. Best wishes T

  • CRP 0.50 <5.0 mg/L

    Ferritin H 448.2 20 - 150 ug/L

    Ferritin can be high for a few reasons :

    According to this page :

    labtestsonline.org.uk/under...

    Ferritin levels are high in states of long-term iron overload, especially in haemochromatosis. However, ferritin levels can be high for a number of other reasons including inflammatory conditions and liver disease. Further investigation is therefore required before a diagnosis of iron overload can be made.

    I would suspect an inflammatory condition in your sister's case, because of the thyroid problems. But she would need her liver function to be checked, and her doctor may want to test for heamochromatosis (although unlikely at this point I think).

    CRP is an indicator of levels of inflammation, but gives people no idea where. But in my own personal experience I have clear evidence of inflammation, and yet my CRP never rises. Your sister may be the same. The high ferritin suggests inflammation is present, but CRP is absolutely normal.

    labtestsonline.org.uk/under...

    For info on haemochromatosis :

    labtestsonline.org.uk/under...

    I read something once that suggested doctors aren't really worried until ferritin gets up to about 1000. But I wouldn't rely on that - it is only a vague memory. Do lots and lots of googling.

  • Thank you so much for all the information and advice. I will print it all off and show it to my sister. I doubt she will do much about it right at this point as she is so low, but hopefully once she starts feeling better she may take more interest.

    Thank you again x

  • I was pretty narky and aggressive when I was first diagnosed. I had not been feeling well for a long time - all sorts of niggly little things and I had been given the run around by my doctors for a long time.

    I felt like my doctors thought I was a real hypochondriac. In the end my body went into meltdown, I stumbled across a doctor who knew at once what was wrong and it turned out I had Graves. To be honest I think I probably got grouchiest when I started on Carbimazole. I don't think I remember being depressed. Completely and utterly exhausted all the time, yes, short tempered, yes, tearful, yes and volatile, not half!

    I took 20 mcg carb for four weeks, was tested and got a letter from my endo telling me to double the dose. By the time I got to see the endo I was pretty hypo - I hadn't been tested once I went on theincreased dose so make sure your sister gets checked more regularly than I was. I was treated with block and replace which suited me.

    Although I kept going to my gym and kept up my Pilates, it was only because I was determined I wasn't going to be beaten so your sister might not have the energy to play a round of golf right away - hopefully she will by the time you've had a few lessons.

    Have a look at this and it will give you an idea of how awful your sister feels. Graves is no fun.

    tpauk.com/main/article/lett...

    PS - I also lost a few people I thought were good friends by the time I was diagnosed which was a bit of a shame but that's life - my Graves helped me realise who my true friends were. It was all very hard really.

  • Thank you for the link, it was very interesting and helps me understand what she is feeling although she won't say anything. I know there is a similar letter for hypo sufferers which I gave to my husband. I don't know if it helped him understand or not lol.

  • Try not to be too hard on your sister... she'll be terrified of what's happening to her. Try talking to her. Graves is a very lonely journey until you can come to terms with it and we all deal with it in different ways

  • What an awesome sister you are and she is very blessed!! If u can ignore her behaviour and hold onto that truth! Does your mum want to adopt me? I am as kind as you and my Graves sister is brutal. But I wldnt live with her 👍❤

  • Hi Sarah, its nice to hear from someone in the same position. Trust me you don't want to be adopted by us lol. Is your sister getting any better or does this last for ages. I am getting worried about moving next door to them in case this is going to be the norm for the next few years.

  • She was very abusive to me and cut me out of her life 16 years ago. I later realised she was ill ( bulging eyes etc.) encouraged her to seek help which she did but resented me being"right" and doagnosed with graves. I tried again several times but had to let her go. Understand her problems, i am 13 years post thyroid cancer treatment and currently completely disabled due to not processing T4 and no Dr in 4 countries ever suggesting alternatives! If you have the inner resources, support of an army who love u in many healthy ways by all means sacrifice on this level. It is better to give than recieve. But if u have any doubts you can sustain this level of giving long term and with little positive response from her - seriously look before u leap! Your health, emotional and physical is your priority. This after a lifetime(52) of giving to others beyond measure and it has wrecked my health❤ But you wanting to made me smile👍

  • Wow Sarah, I am sorry you are in such an awful position. I appreciate the warning and reading your post does scare me a lot. I will have to carry on with our purchase together as we both need to pull together to look after our mum. The three of us are also the only blood family left as neither myself or my sister have children. Obviously I have my husband but we married in our mid 40's so I don't feel his family are mine.

  • I would get help with this now. I am a Social Worker and Counsellor. It feels" officious" but you need to have a written agreement before you go ahead about every area. Seek legal and relationship advice how to set up a living together agreement. Planning ahead for worst case scenarios. This is effective, assertive bargaining and more vital with family than other relationships. Listen to your still quiet voice that knows this already. I am not saying this to shock you but to be real. I wld say the same if you were the healthiest family in the world and planning to live together. To have the best chance of this working you need to be honest on a level most Brits dont know how to be. It will feel like making a fuss but will pay dividends. This is your marriage and home/ safe place and too valuable to take risks with. For example. What are the agreed "rules" about who does what? What exit plan do u have if for any reason circumstances change. What are the plan A and B. What happens if she wants out or your husband does? What exactly are the finances- is she on deeds etc. What are her rights if not? The chinese say visitors are like fish and smell after 3 days! We have lived anroad amd had beloved family staying for extended periods and know how true this is! However much you love each other! And that was without the complications you have. ❤

  • Thank you for your advice. Luckily my sister in law works in a solicitors office so is aware of the issues and the paperwork we need. We all have to protect our interests and my husband has 3 sons he needs to cover as well. We will be visiting a solicitor in the next week or so. We are hopefully buying a house which has an attached annex so my husband and I can shut ourselves away if needed. There is always wine :O)

  • Really glad to hear both and sorry if I was overly assertive! Glad u have your own safe place non negotiable- it takes too much energy on bad days. Bon courage et bon chance!

  • SarahPk, I am also a person who has thyroid cancer but has not responded to treatment. I just passed my four year anniversary, and now self medicate with NDT. Don't yet know whether this will work fully. I've just improved to the point where I can wash and dress without too many problems, but not tons more than that.

    I don't see many people on the forum in this situation!

  • I know. And thanks for replying! Pls do PM me cos just starting on T3/T4 combination and wld love to hear about ur experience with NDT as that will be the next step? Also thanks for reaching out as I have great difficulty accepting how ill I am and keep trying to do too much! Like getting dressed and go for a walk! I realise I have been deteriorating for years and overly compliant so well done you for prioritising your health a decade earlier than I have!! I was such a highly functioning, energetic and intelligent person how did I not see? But enough regrets therecis hope for a healthier future as witnessed by many here! Are you doing the paleo diet? My sense is forcuscit is not about antibodies or do I just love my foodie pleasures

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