Update and advice please: Hi everyone So past... - Thyroid UK

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Update and advice please

Jules99929 profile image
13 Replies

Hi everyone

So past few months have been a rollercoaster. After my last GP blood tests which indicated overactive thyroid (I did point out could it be a Hashis flare as per my previous results but they confirmed Graves) and I was referred to the endocrinologists at the hospital and managed to get an appointment 3 days later. I was seen end of Jan and they tested me for Graves’ disease and the Trab came back positive. So they put me on 20mg Carbimazole. I also have TED which is being treated with eye drops and ointment as this also flared up recently.

I started taking magnesium but I seem to be allergic to the coating of the vitamins as they give me a tickly throat. Has anyone else had this? Also eating Brazil nuts daily for the selenium.

I decided to do a vitamin check as recommended on here. I seem to have high iron levels and don’t know why? Anyone else have this? . I have low serum folate. What’s the best vitamin for this along with vitamin D which seems to be at the low end? How much should I take? Vitamin B looks fine so I guess I don’t need anything for this? Sorry but I find all this a minefield.

Thanks in advance for your advice.

Julia

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SeasideSusie profile image
SeasideSusieRemembering

Jules99929

Ferritin can be raised due to inflammation or infection and it's possible that yours is raised due to Hashi's (of course, there may be some other reason). If CRP was tested, was that also raised, that's another inflammation marker.

Vit D: 56nmol/L

The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L. To reach that level from your current level the Vit D Council would suggest taking 4,000iu D3 daily along with it's important cofactors - magnesium and Vit K2-MK7.

Retest after 3 months.

As you have Hashi's, you might want to consider using an oral spray (eg BetterYou) which is absorbed through the mucous membranes in the oral cavity and so bypasses the stomach. Some Hashi's patients have done well on an oil based softgel (eg Doctor's Best).

When you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Active B12: 115

This is a good level.

Folate: 2.98 (>3.89)

This is below range and you should see your GP.

See cks.nice.org.uk/anaemia-b12...

Folate level

◦Serum folate of less than 7 nanomol/L (3 micrograms/L) is used as a guide to indicate folate deficiency.

◦However, there is an indeterminate zone with folate levels of 7–10 nanomol/L (3–4.5 micrograms/L), so low folate should be interpreted as suggestive of deficiency and not diagnostic.

You are close to the "indeterminate" zone, but are in the zone which suggests folate deficiency, so don't let your GP say you are "borderline" or "indeterminate". He should follow the NICE Clinical Knowledge Summary unless he has guidelines which show different levels - if he says he does then ask him show you.

Magnesium

Are you taking a tablet? Maybe switch to a capsule?

Selenium

Does the packing on your Brazil nuts state "grown in selenium rich soil" and give the area where they were grown? If not then there is possibly no selenium, or too little to be of any use. Eastern Amazon and Central Brazil are the areas which appear to be the richest in selenium. See honey-guide.com/2012/11/19/...

One member has said that M&S Natural Brazil Nuts give the area grown and they seem to be OK. Otherwise you can only be sure of how much selenium you are getting if you take a supplement.

Jules99929 profile image
Jules99929 in reply toSeasideSusie

Thanks seasidesusie, i will go to the health shop tomorrow and pick up some vitamin D.

The magnesium I’m taking is a tablet so great idea to change to capsule.

The Brazil nuts are from Sainsbury’s and it says on the back of the packet high selenium but will see if I can pick something up from the health shop.

Interesting about the folate and will go follow this up.

I’ve been signed off work for a couple of weeks as I’m just not right at the moment with lots of symptoms and my eyes are so sore. So sore! Feel down and fed up with moaning about how I feel and just want to get back on track and feel ‘well’.

SeasideSusie profile image
SeasideSusieRemembering in reply toJules99929

Jules99929

i will go to the health shop tomorrow and pick up some vitamin D

Generally it's much better to buy supplements online. High street health stores, supermarkets, etc, don't sell the good stuff, especially "own brand" supplements. You can ask for recommendations here. Obviously BetterYou brand is the same wherever you buy it.

The Brazil nuts are from Sainsbury’s and it says on the back of the packet high selenium but will see if I can pick something up from the health shop.

Are they the SO Organic Brazil nuts? If so the pack gives selenium content:

sainsburys.co.uk/gol-ui/pro...

So a 30g serving gives 50mcg selenium.

Their non-organic and their Fairtrade ones also gives the amount of selenium per serving which both show more than the organic ones.

I am not sure how accurate this is but depending on the dose of selenium you want you may have to eat quite a few nuts.

If you are going to buy a supplement then look for selenium l-selenomethionine, avoid selenite and selenate as these two forms are poorly absorbed.

Jules99929 profile image
Jules99929 in reply toSeasideSusie

Ah ok I will take a look online for vitamin D and if anyone has good recommendations then please could you share with me?

Selenium:

Yes they are the SO organic nuts but think I will look for a supplement just hope they don’t give me the tickly throat.

As for my sore eyes. Doc recommended to use an eye mask at night with the ointment to try and keep the eyes moist. They are so bad today and even though it is dark, dreary and raining here I have to wear sun glasses due to the light sensitivity. Ughhhh!!!!

Lora7again profile image
Lora7again in reply toJules99929

I use the vitamin D spray because it easily absorbed on your tongue.

Here is a link

images-na.ssl-images-amazon...

SeasideSusie profile image
SeasideSusieRemembering in reply toJules99929

Lots of places sell the BetterYou spray, you should be able to compare prices. This might be your first choice as you have Hashi's as it is supposed to give the best absorption as it bypasses the stomach. However, it does contain a lot of excipients if you check the ingredients list so if you want to avoid them it might be worth considering Doctor's Best D3 softgels. These contain only 2 ingredients, D3 and extra virgin live oil. Some Hashi's patients do well on them. Not all supplements come as oral sprays so Hashi's patients do have to take some supplements in softgel/tablet/capsule form.

I buy my Doctor's Best D3 online from Dolphin Fitness, usually cheapest and always reliable.

Jules99929 profile image
Jules99929 in reply toSeasideSusie

So along with the vitamin D softgel (think I’ll try this as it has only 2 ingredients) I can purchase vitamin k2-mk7 separately or with the D3 as I see some products have both? It’s a minefield and so many options.

In addition to this I will buy magnesium capsules and some selenium capsules.

SeasideSusie profile image
SeasideSusieRemembering in reply toJules99929

Yes, you can purchase K2-MK7 separately.

Some products do have both D3 and K2, you'd have to read the ingredient list to see what's included and decide if it's for you.

There are some oil based liquids that are free of excipients, they are used as sublingual drops. One brand is Vitabay Organic and they do both D3 and K2 separately. There may be other brands that do a combination one.

I take Doctor's Best D3 softgels because I know it works for me and it has no unnecessary excipients, it's also very reasonably priced for such a good quality supplement.

I have just changed my K2-MK7 to the brand Vegavero because it only has K2-MK7 and linseed flour as a bulking agent, then the capsule shell, nothing else. K2 is fat soluble, like D3, so needs to be taken with fat to be absorbed. As there is no oil in this capsule I have to make sure that I take it with dietary fat.

I take quite a few supplements so I try and find ones with as few excipients as possible.

Jules99929 profile image
Jules99929 in reply toSeasideSusie

Thanks for this. So when you say it needs to be taken with dietary fat, can you give me some examples of what you would eat please? I’m so rubbish at all of this. Sorry for so many questions.

SeasideSusie profile image
SeasideSusieRemembering in reply toJules99929

You have to think which foods contain fat, which is the fattiest meal of the day.

Egg and chips is a fatty meal, but possibly not the healthiest type of fat. Fried eggs and bacon possibly.

What are good fats (no low fat versions) - butter, full fat yogurt, cheese, olive oil, coconut oil.

I'm not too worried about the oil based softgels, they have oil so anything with a bit extra fat - toast and butter for breakfast maybe.

For the K2 capsule it doesn't contain fat so tonight I've had liver, onions, mushrooms, peppers all cooked in butter. Followed by full fat yogurt. I took my K2 after tea.

You could take it with a teaspoonful of coconut oil, but I can't do that.

Jules99929 profile image
Jules99929 in reply toSeasideSusie

Great, thanks so much. You’re so knowledgeable and have helped me immensely.

SlowDragon profile image
SlowDragonAdministrator

High ferritin linked to having Graves’ disease

onlinelibrary.wiley.com/doi...

Jules99929 profile image
Jules99929 in reply toSlowDragon

This is so interesting. Thanks for this information. I will follow up with the doc.

Thanks everyone

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