Help needed for my daughter

My 19 year old daughter has Graves. She was started and still taking thyroxine and beta blockers and they are not helping. Her T3 and T4 have actually raised by 4xs. Have been researching RAI vs surgery and am so confused as to the correct decision. Any advise. This vivarant teen has had to quit her job, struggles with enough energy for school and is plain miserable all the time. This is what she goes through. Her dad and I and sister are the recipients of her irritable mood swings now and I just feel so hurt for her every day. Please, please please!!! Need advice about RAI vs surgery.

Thanks

A loving mother

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21 Replies

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  • Beta blockers make one lethargic, are her iron and b12 levels good. I don't know enough about Graves so can't offer any help there. Good luck, we are having moody problems with my grand daughter, Feretin level 9.1 (10)is the baseline.

  • If she has Graves she hopefully hasn't been put on just thyroxine as that is the treatment for underactive thyroid. She should be on either Carbimazole, Block and Replace which is Carbimazole + Thyroxine or PTU.

  • She is on Carbinaxole, not thyroxine. Sorry.

  • Could you be very helpful to anyone reading?

    Please post exactly what she is taking - doses and time of day.

    And you seem to suggest her T3 and T4 have risen - let us see the actual results. If you can, post the results including dates and reference ranges.

    It would be very easy for someone reading to jump to conclusions - and it is absolutely vital to avoid that. This extra information will be invaluable in getting good advice and suggestions.

    It is good to see you asking here and supporting her.

  • Do you know what the results of her last blood tests were? Also is she taking carbimazole along with the levothyroxine and beta blockers? I've got Graves - well I've been in remission for a few years now but I was treated first with carbimazole to kill off my own thyroid chemically then I was given levothyroxine as a substitute and the thyroxine was increased until my thyroid levels were where the doctors wanted them to be and once they were at a good place everything was stopped and I just had to wait and see what happened. So far nothing.

    I wasn't able to take beta blockers because I have asthma.

    People with Graves - which is an overactive thyroid caused by antibodies are normally seen by an endocrinologist at a hospital and first treatment is (to my knowledge) with an antithyroid drug. That drug is either titrated down or in my case I had a large dose of carbimazole the anti thyroid drug and was kept on that large rise and given levothyroxine to replace my thyroid production. That is called 'block and replace' treatment. It is a complicated condition.

    I would definitely go onto the Thyroid UK website, you can join the group and get extra information. thyroiduk.org.uk/tuk/index.... read as much as you can about your daughter's condition. Research as much as you can and ask questions of your doctors do that they know you are taking an active part in your treatment.

    I used to write my blood test results in a notebook, along with any queries about my condition. I kept a daily diary of how I was doing on the treatment I was getting. I just jotted down a few lines but enough that I was able to look back and see how I was doing on particular doses and how I felt when my blood levels were in a certain place.

    Always get a print out of your test results, you u are legally entitled to have them. Ask to have your daughters vitamins B12, D, ferritin and gloated checked out. For good thyroid health you want them t be high within their ranges.

    Try to get your daughter to rest as much as she can, I was always totally exhausted - ok it's many years since I was 19 but even so I was totally exhausted and incredibly grumpy for a long time. Have a look at this - it pretty much explains how Graves sufferers feel and why they act as they do, it's a very tough condition, I think because you don't always look as I'll as you feel. In my case I looked very good because I lost loads of weight, I only looked good on the outside, inside I felt horrendous tpauk.com/main/article/lett...

    I was always being told I would have rai should I relapse but I did well on my block and replace treatment and didn't want rai - I got underactive during my treatment and that was very unpleasant - in a different way to being hyper, but not any fun ether. So I saw my GP to find out if I could be forced to have rai - no! Or if the hospital could refuse to treat me if I refused rai and again the answer was no. So after that I relaxed and got on with getting better.

    So post your daughters blood test results as well as what she is taking, I'm surprised if she is hyper that she isn't having some sort of anti thyroid medicine like carbimazole or PTU. If you do that people who are or have had a Graves will be able to give you more advice.

  • She is taking 4 tabs of Carbinaxole am and 3 tabs on. Also atenolol 2 times a day and her levels just keep increasing. I take her tomorrow for labs again and we finally see her endo again on Tuesday. Her fatigue is constant but with insomnia and she is vomiting. This is not a symptom I have found anywhere.

  • That sounds more like it. Have I got it right that she is taking both carbimazole and levothyroxine as well as atenolol?

    When I was first diagnosed my results were

    TSH - < 0.03 (0.35 - 5.5 ) Below low reference limit.

    Free T4. - 28. 6. (10.0 - 19.8)

    And after 11 months on block and replace treatment I was considered to be ok and was discharged

    My levels then were

    TSH - 0.56 (0.35-5.5)

    FT4 - 17.4 (10 -19.8)

    So although my numbers went up, my level of over activity had gone down enough to be considered within the normal range.

    By the time I stopped all of my drugs I was taking 40mcg of carbimazole and 100mcg levothyroxine at the same time. I did that every day for eleven months then I went to see my endo on a Thursday and stopped all the drugs I was taking next day.

    I was never sick, check out the patient information leaflet that comes with all of her prescription medicines and see if you can find vomiting somewhere in the small print. Failing that hopefully your endo or doctor might have an idea of what could be causing it.

    When I started taking carbimazole my pharmacist told me to take 1000mcg of vitamin C at the same time so I always did that. I also did my own testing ( doctors wouldn't pay for it!) and made sure my vitamin D, B12, ferritin and folates were high within their range., all that plus a really healthy diet with lots of fish and green vegetables. I kept going to my gym and Pilates I just tuned everything down and my Pilates teacher is a physiotherapist so I was very well looked after - but I'd say it took me a couple of years before I felt energetic enough to get back to long distance walking.

    You are seriously tired with Graves and it is not a normal tiredness, it feels like you are tired right through to your bones, your daughter will be completely and utterly exhausted. My first email in here was to say 'Will I ever feel normal again?' The answer was 'Yes' and I do feel good now but it took a very long time.

    Tell her to keep a daily diary of how she feels, doesn't need to be in depth, a line or two would do and she'll find that as she looks back she had in fact made huge progress. I was always pleasantly surprised when I read my notes back. Even though I didn't always feel I was progressing, there it was written down that I was improving.

  • How long has she been on carbimazole? It can take 6 weeks to show results. The symptoms sound very difficult and I'm sorry to hear that she and you are struggling but Rai and surgery will both make a life long decision for her that it may, may be possible to avoid.

    Have you looked at her diet? You need to avoid excessive iodine in the diet and environment so no seaweed, no sea salt, milk can contain significant iodine, google low iodine diet. Now that's an extreme diet but may show up something that's pushing her up. Also jojoba oil is very high in iodine and some body, hair and face lotions contain that or seaweed either.

    Check out Elaine Moore's website. It has fantastic information and advise from her (graves and immunology expert). She also speaks frequently about combining carbimazole with holistics methods such as herbs that work as anti thyroids. She also writes about other things that can help such as acetyl l carnitine which is better than antithyroid in a thyroid storm situation and others

    Please do your research and try to avoid RAI or surgery as there are real treatments coming in research right now and then she may get properly cured!!

  • RAI and Surgery are both IRREVERSIBLE ..

    please slow down and read read read ... about The Thyroid gland .. and how Vital it is within the body.

    Thyroid hormone is crucial for all parts of the body

    Therefore it is urgent in Graves' disease to slow things down

    I have Graves about 18 months ago I took Carbimazole at 20 mg

    Per day after a few weeks went down to 10mg and then a couple of months later to 5mg per day

    I am now Euthyroid that means

    More or less .. normal

    Because as I was coming off Carbimazole I weaned off it with Regular L Carnitine .. you must Google this to see how L Carnitine deficiency can affect your girls body

    When your body is suffering with Graves you are kind of ' going at a hundred miles an hour '

    ....And fast running out of nutrients , vitamins and minerals ... if these things are not replaced then you will never feel right ... i.e. They Must be replaced ...

    Many of the things can be replaced with good food .. but we can fast track that procedure by taking vital supplements that we have run out of ..

    I was very ill when I was diagnosed .. my GP knew nothing about my Graves and offered me RAI ... not another thing !

    That is why I started to self medicate as I DID NIT want to lose my very vital Thyroid Gland

    I was so ill my head and body hair was falling out my toenails fell out I had hot sweats every single hour of the day AND night

    I had pain in my muscles mostly large muscles in arms and calfs and shoulders

    But worst of all was the anxiety and brain fog which rendered me almost unable to complete a sentence or say some words when talking . And My head shook and my voice sounded like someone else's ... shakey

    I put together a list of supplements that I had learned were VITAL TO TAKE

    My goal was to treat my immune system .... as the antibodies were certainly the cause of my Thyroid being overstimulated

    And my immune system was responsible for the antibodies

    When I asked GP about this he said Oh ! That's much to complicated !! ... N O T !!

    I did it .. and so have many others on here and it has worked for many

    I can hardly believe that if I had not been so determined ! I would STILL be very ill today.

    Other ( many ) members in my family have not been so lucky my sister and cousin are both very very ill indeed and suffer daily because they had no help from ignorant doctors who did not know HOW to treat the Thyroid

    It would be easy to lose patience with someone suffering from Graves before diagnosis as yiu cannot see their illness .....but your poor girl is suffering and probably cannot begin to understand WHY she feels this way

    I was so bad I just wanted to go to bed and ... quite simply die.

    So.... the first thing to do is have her bloods tested .. and include tests for antibodies Tell them you would like a printed copy of them ( her right ) And printbthem on here for members to see .. and you will get an understandable breakdown and explanation .

    Tell her doctor that she needs to see an Endocrinologist tell him you are on this site and it's not Mumbo Jumbo ... you are having trusted direction .

    Attend your girls appointments with her so that she is not fobbed off by anyone without support from loved ones ..

    That should make her GP and Endocrinologist sit up ! My husband came with me to every Endo appt . And I know it makes them accountable !

    After this start , things will begin to happen and she can get on with getting better ..

    Namely beginning to take various supplements ...

    She must rest , as her body is in Top Gear and she is running out of 'fuel '

    Tell her you're with her in this and she's about to start feeling well again ... come back on here

    Fur more info in the supplements

    She must likely is very low in many minerals , vitamins and nutrients .. magnesium , B12

    And D3 Are only three of those.. there are a number more

    But while you wait fir spots Google those three to start with

    Like this ..,

    B12 deficiency in Graves' disease

    Magnesium deficiency in Graves disease

    D3 deficiency in Graves' disease

    Best of luck to your daughter

    Luv mx🌹

  • I went totally gluten free over a year ago - I developed inflammatory arthritis which is also autoimmune and I decided I had to do something to try and help - anyway I have now reduced my thyroid antibodies to practically zero. I've still got some but tens rather than in the hundreds of the little blighters that I had in the past.

    You've had loads of really good advice for your daughter, there are a lot of common points from people who have replied. Research, don't just accept rai or a thyroidectomy until you've tried everything else, get lots of rest, I slept all the time at one point and eat well. I also took CoQ10 or Ubiquinol whichever was best value and I totally cut out junk food and fizzy drinks.

  • Thank you for your response. She has been on the meds, thru an endocrinologist, since January. Her TSH is 0 and I believe her last T4 was 48. This is why the concern that meds are not helping. I go to all her appointments and daily tell her that there is an end to this complete misery. She will have to cope for life but her life will not be this bad. I know she is at her wits end. The frustration I have is as a mother. I do have the benefit of an endocrinologist that isn't just jumping to RAI or surgery. I am just wanting to make an informed decision if it comes to that. I am afraid since her levels are still so high after months of high dose conservative meds it may come down to more aggressive approaches.

  • Wait for spots .. I meant

  • Lol - there was I thinking 'well at least I didn't have spots' 😉

  • Hahaha... sorry about the spots .. I definately meant ... appts

    Mx🌹

  • madge1979,

    You can edit your own posts and responses:

    support.healthunlocked.com/...

    :-)

  • Wow ! Wait for appts

  • Well worth watching this series, mostly covers hashimotos but also discusses graves:

    Going wheat/gluten free can make a huge difference for some. Well worth a try. May be worth asking GP for celiac test first while consuming gluten, then try cutting it out anyway, regardless of the result.

  • Here is the episode of Thyroid Secret where they talk about gluten and other food sensitivities:

  • she cant possibly have Graves if they have given her thyroxine

    get hold of all her thyroid test results ( she is legally entitled to them )

    on no account even think if RAI she would simply be even worse

    seems to me ftom symptoms she has Hashimotos Hypothyroid and very low levels of

    ferritin

    folate

    b12

    vitd3

    which makes utilusation if thyroxine a cjhallenge

    without all her test resukts its hard to tell

  • It was not thyroxine she was on. That was a mistake on my part. She is on methamizole 50mg am and 30mg pm

  • So went to endocrinologist today. Daughters T3 is still at 30 and TSH is still undetectable <.010. (So basically 0). She is to start 5mg iodine (not RAI) every 6 hrs for 24hrs. He has not done this outpatient before and only one inpatient before. The inpatient had a complete remission and no reoccurrence of symptoms since. This seems a viable option to RAI or surgery as it is not a permanent removal of the thyroid. If anyone has any thoughts or has done this before, please let me know. She also has high calcium levels now as well. He is going to just have her drink additional water to try and clear that up and then continue her 50mg methamizole am and 30mg pm along with 50mg atenolol. Thanks

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