I am a 32 year old female Graves’ disease sufferer and looking for a bit of advice on supplements and diet.
I was diagnosed in July last year and put on Carbimazole and Propranolol for a very speedy heart rate. My levels steadily dropped and I went from 30mg down to 20 to 15 to 5mg between July and November. But since then my levels have yo-yo’ed and I am currently on 20mg of Carbimazole and taking 120mg of propranolol (3 times a day). I think with retrospect going from 15mg to 5mg was too much of a jump and that's when levels went up again. I haven't been able to get control since - going from 20 to 15 to 30 to 20...!
Results end of Jan:
T3 13.4 (range 3.1-6.8 pmol/L)
T4 36.2 (range 10-23 pmol/L)
TSH -
Vit B12 128 pmol (range unknown) is this low??
Vit D 90 ( range 50-175 nmol/L)
Folate 20 (range 3.1-20.5 ug/l)
Ferritin 81 (range 22-275 ug/L)
(My Trab level was last measured at 15.45 at the end of Sept)
I have mild signs of TED and have drops to take day and night to help.
I am experiencing hair thinning, fast HR, moderate goitre, dry and spotty skin, very frequent bowel movements, slight weight loss, low mood/emotional, sore muscles -current mystery ongoing hamstring strain (is this kind of thing normal??)
I am taking the following daily supplements. Would really appreciate thoughts and advice on these-
Selenium 200ug (have heard conflicting info though as it supports thyroid production which I want to reduce?)
Multivitamin and mineral support (cytoplan)
Magnesium (100mg) cytoplan
Adrenal support (multi phytonutrient complex with vit B5) cytoplan
Vit D drops 75ug
I have no food intolerances but have pretty much cut out gluten, cow dairy, refined sugars, fish, caffeine and alcohol.
I would very much like to reintroduce all of this to my diet in the future (in moderation) if I can..
I am keen to start a family as soon as possible but was advised I need to have the thyroid more under control and really be on a lower dosage of Carbimazole (ie 10mg or less) before switching to PTU.
Any thoughts, advice, pointers would be so appreciated.
Many thanks
Hannah
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HannahStevenson
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Hi. Geesh. That’s a lot. I have Graves. Diagnosed around the same time as you. What I am going to say is my experience and I’m a newbie like you. There are a lot of knowledgeable people on this site but most people post on the regular thyroid uk website and I suspect that’s why no one has replied yet. You could always repost on the other site as it’s more popular. Just a thought. So the muscles. Yep mine ached so sore muscles is a thing. I felt like I had run a marathon, if only. My muscles and in particular my hamstring ached. I use liquid l-carnitine. It’s an amino acid. Comes in powder form too. Get it from a supplement website think bodybuilding websites. I take 3grams a day. I swear by It. It has brought my T4 down from over 100 to 84. I was taking no anti thyroid drugs when these blood tests were done. Just vitamins and this. Research it. Anywayl-carnitine 3grams a day is a natural way to bring down T4. T4 range is 10-22. So mine is pretty high. I started on 30mg of carbimazole then 20mg. By 8 weeks on this I was a complete emotional wreck and had suicidal thoughts. My blood work was poor. Neutrophils low, white blood cells low and ended up sick. I am now on PTU. No side effects. I am 3 weeks on this. What my Endo said was Graves can bounce around month to month with regards T4 and T3 levels due to antibody fluctuations. I asked Elaine Moore why I felt so emotionally sad and she said that my blood had come down too fast so the carbimazole dose was too high and my body although had got close to normal in the ranges it was too much too fast with regards drug doses. You might need to supplement with zinc for the hair thinning. Someone more experienced will hopefully come along. Again vitamin D is on the lower side so you might need to up your dose there as well. I’ve just been reading about selenium and Graves patients. I think I read it helps to stabilise levels and help with antibodies and remission. I take 200mg a day. I take 3 grams day of vitamin d but it is summer in New Zealand and this year I have deliberately got out into the sun. My vitamin d was 52 range 50-150 so pretty poor ok pretty bad. I know it will have definitely come up but I know in winter I will need to add more vitamin d to my vitamin regime. I think your magnesium is a low dose. My levels are at the bottom so I take 2,000mg a day because of the tremor but also it helps with the muscle aches so maybe more magnesium. Again someone else will come along with maybe the dosages. I’m just telling you what I take and in no way does that mean follow my advice. A lot of people swear by a vitamin b complex but because it contains biotin you need to stop taking it 7 days before a blood test because it affects the results. It will be hard to comment on the B12 because there is no range. I know mine is in the 800’s at the last check so close to the high end of the range used in New Zealand. I hope that helps in some way. Why can’t u change to PTU now. I emailed Elaine Moore and what she said was if you don’t tolerate the carbimazole then you stand a high chance of tolerating the PTU. My blood has been good on the PTU so far. It’s only been 3 weeks but on the PTU my neutrophils have got stronger and my white blood cells are 75% in the range so looking good and also some elevated liver enzymes have actually normalised on the PTU. On the carbimazole I was lethargic, nausea, headaches and loss of taste. Sick with low neutrophils and low white blood counts and elevated liver enzymes. I would ask your dr or Endo to change drugs but only if you think it is something you would consider. This is my experience and I wish u the best.
This is my blood 3 weeks ago. I convert very well and attribute the vitamins to this.
TSH no suprises <0.001
T4 84 range 10-22 has been over 100
T3 45.8 range 2.0-6.0 has been 49.8 once
It gives you an idea of how bad my Graves is. It’s been like for 8 months while I flip flopped on the carbimazole because I was on it and then off it because of side effects. I hope this helps in some way. I hope I didn’t waste your time kindest regards NIKEGIRL
Thank you so much for such a comprehensive response! It's so useful to read and lots of food for thought. It's so great to hear that you feel more on track with the PTU. Fingers crossed you keep going in the right direction. What a rollercoaster eh?!
It’s an exhausting journey. I changed drs in July last year because of my son. The new dr is very good with me. I am so much happier and brighter on the PTU. The carbimazole did not agree with me at all mood wise and organ function wise. You will work it out. A baby is exciting that’s why I think why can’t u change to PTU now and see if your body likes it better than the carbimazole.
I think the PTU is a fair point. I do liver testing every week. I take liver detox tea and milk thistle everyday for the liver cleansing to help my body. I have to go to sleep now. It’s 1am. Kindest regards always and chat again if you’d like
I am living on cottage cheese just now. I crave the protein and probably calcium plus I love drinking my amino energy caffeine drink every day. I call it happy juice. If u want me happy then give me the amino energy drink.
That’s rough. I was diagnosed February 2020. I was on the maximum dose of the thyroid blockers for a few months with very little success. I felt miserable. I also had hair loss.
I decided to go down the extreme route mostly because I want to have a child fairly soon (I want to lose a few kilos first). I tried to gain my energy back by eating nonstop. To my dismay eating didn’t really help. My extreme route was to have my thyroid removed October 2020. The surgeon had some obstacles. I was lucky as my surgeon was the best in the Netherlands. She said my thyroid looked very sick indeed.
I felt miserable for about 2 months afterwards until the right dose of levothyroxine was found. I jumped the gun pretty early on by asking for tirosint which I have to pay partially. I am on quite a high dose 150 micrograms. I feel absolutely fabulous. Better then I have in YEARS. My Graves made me a stressed out, angry, always tired mess. Hopefully I will continue to feel like I do atm. I can now do exercise without my heart reaching 220 and not being able to catch my breath! I am aso eating normally and losing weight at a good healthy pace.
I am not advocating my choice. But it is an option. Radioactive iodine is also a slightly less invasive option.
I hope you get some good advice and start feeling better! I don’t with Graves on anyone. Good luck and take care,
Hi I've had Graves since 2012 and it took me years to figure out all of the things you said above! What you have already is pretty much all the things I have also done and found useful. I had previously not had intolerances but found that removing gluten was really helpful for me, later on I realised dairy, alcohol and refined sugars were a problem too so I dont have dairy now and only occasionally have alcohol & sugars.
I didnt tolerate Carbimazole well and so switched to ptu and had no noticeable side effects.
My graves goes up and down and I've been on and off medication for the past few years, but in my opinion this is preferable to removing or destroying my thyroid and being hypo for the rest of my life. I feel like I at least know what I'm dealing with with hyper.
I got pregnant whilst my TSH was suppressed and my T3/T4 were in range. I immediately became hyper and went on PTU for a few weeks until levels were in range again (apart from tsh).
My levels were mildly elevated towards the end of my pregnancy again and so I resumed the PTU. This affected some of my birth choices- I had to be in a consultant led ward rather than a midwife led unit - and baby had to have a blood draw when he was born to check for hyperthyroidism. I was under a consultant the whole of the pregnancy and she said that the risks from PTU in pregnancy are way lower than being hypo or being untreated hyper.
I was expecting to become hyper after giving birth but so far (7 months in) my levels are the best that theyve been since I was diagnosed with Graves!
In my experience it's worth exploring if trauma or stress are factors that could have triggered your illness. If they could be, dealing with the root causes is essential for longer term recovery. I've found yoga, meditation, massage, sound baths, therapy and running have all helped me with addressing some of the trauma issues that triggered my illness.
I sincerely hope you start to feel better soon. Definitely worth a chat with your doc about switching to PTU, it was a complete gamechanger for me.
Thank you so much for your reply. This is so useful to read, especially your experience with pregnancy. I'm so glad your levels are good at the mo - long may they continue! All the best
Just a warning being hyper according to your labs at the start and certain stages of pregnancy is actually a normal progression. Also you have to be under the care of a gynaecologist and endocrinologist and at the birth for the baby a paediatrician if you have Graves regardless of whether you have a thyroid or not. It’s your antibodies that can harm the baby (of course also dangerous levels of T3 and T4 as well) but for the baby being slightly hyper is healthier then being hypo as the foetus doesn’t develop its own thyroid until later on in pregnancy (which is why being on certain meds is better during pregnancy then others).
Good point, there are fluctuations expected during pregnancy, they expected my levels to stabilise in the second trimester (which they did) then they expected me to become hyper postpartum (which I didnt, thankfully. I was only slightly hyper the last few weeks of the pregnancy and the ranges for normal are much narrower during pregnancy).
My NHS trust here in the UK requires care under an endo during pregnancy when Graves is present but I only had the consultant because of fibroids close to my cervix at the start of pregnancy. Once they had moved out of the way I was discharged from consultant led care. I'm sure the rules vary from trust to trust, this was just my experience.
Yeah I’m sure it varies. I moved to the Netherlands and here they do regular blood tests throughout pregnancy. I still have Graves even though I no longer have my thyroid. The antibodies will still be present and one of the major relapse triggers (increase in antibodies) is pregnancy.
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