Any diet & supplement advice for Graves disease?

[HannahStevenson]

Hi all,

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

[Razzydaz]

It looks as if you are doing everything you can. I was going to suggest no sugar (sugar puts too much strain on the body) , no grains, no diary - The AIP elimination diet without using the grains they recommend Cassava etc, something I wish I had tried when I had Graves before I agreed to RAI 😞. Are you making time to destress and relax, do not carry on as normal for a few months at least. Don't do anything that pushes your body too much, ie gym, running etc. Walk slowly, don't rush anywhere for any one. Look after yourself first.

I've just noticed you've cut out fish, why is that? Salmon, Kippers, Sardines, Basa Fish, these are so good for you. ☺️

[Buddy195 Administrator in reply to Razzydaz]

I have mild TED & would definitely recommend 200 selenium supplement, plus use eye drops (preservative free) as often as needed. Wear sunglasses (even indoors) if you need to. TEDct are a useful organisation to contact (eg for a specialist TED ophthalmologist in your area/ treatment advice).

I found my overall inflammation reduced by being gluten free, so do try this for a couple of months to see if it helps. However, I made a mistake in my early thyroid journey by trying to change too many things at once (eg eliminating gluten/ dairy/ sugar) as then it was hard to see which things were beneficial. Definitely make one change at once, then you can monitor the affect on your health.

I used to do x country running & had to stop when my symptoms were acute. Try something less strenuous until your body recovers (I took up Pilates!) This is such a lovely forum & you will get lots of advice & support from members. I’ve learned more here than from a room of medics!

[HannahStevenson in reply to Buddy195]

Hi Buddy195! Thanks v much for this. I think I have made the same mistake that you did..cutting it all out straight away! Which frankly isn't fun!Funnily enough I am a Pilates teacher Bit different teaching to doing though. I have definitely been given the signs in my body to slow down and pace myself

[HannahStevenson in reply to Razzydaz]

Hi Razzydaz thanks so much for your reply. I hadn't really considered the AIP diet... will look into it.I have mostly cut out fish as they contain iodine...do you think that this isn't necessary then?

[asiatic]

Hi Hannah, can't really comment on diets or supplements although I read of many on the forum advising against multivitamins. I can empathise however with your fluctuating levels as I was in the same position 5 years ago. Carbimazole brought my levels down quickly but antibodies were still high. Block and Replace is a good treatment for people like us to keep levels stable. Carbimazole stops production of thyroid hormones and you take Levothyroxine as replacement. It may take a little adjustment to reach the lowest effective dose. At the moment I take 5mg C and 75mcg of L. This gives your thyroid a bit of a rest. I take 200 mg Selenium which is reported to reduce Antibody production. I also tested my Vit D which was on the low side so now take a supplement. The fluctuations I experienced early on causing me to go hypothyroid worsened my TED. You are likely to need treatment for a while so you may want to discuss B and R with your Endo.

[HannahStevenson in reply to asiatic]

Hi asiatic. Thanks for your reply! That's interesting what you say about multivits - I shall read up a bit more here.This all makes so much sense with what you are saying with the antibodies remaining high. Also the fact that my eyes got worse when my levels went towards hypothyroid.

Will definitely discuss B&R with my endo. Many thanks!

[asiatic in reply to HannahStevenson]

It is useful to keep a diary noting blood results against the dose you are on and any symptoms you are experiencing. We are all different and docs might tell you you are fine because your results are within range but it doesn't mean they are optimal for you. From experience I can tell the doc I need fT4 three quarters through range. At half way I will experience hypo symptoms and my eyes swell. I have seen greygoose comment on multivitamins. You could contact her.