under/Over/Graves? You decide šŸ˜‰: Hi all I was... - Thyroid UK

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under/Over/Graves? You decide šŸ˜‰

Forumjunkie profile image
ā€¢6 Replies

Hi all

I was diagnosed with over active Thyroid last January, originally started on 20mg of Carbimazole,then diagnosed with Gravesā€™ disease in May.My carbizamole was reduced to 10mg and then to 5mg, I have my bloods taken every four weeks, two weeks ago I went to see the consultant, she said I was difficult to treat because although my ranges were in the now normal range my symptoms maybe showing signs that Iā€™m going into underactive thyroid . I may have thyroiditis! Was told to stop medication and see which way my body goes and then they will know if I need to stay on carbizamole or Thyroxin, she said she would arrange for me to have a Cortisol test.

The letter that she sent to my GP differs to what she told me to do( copied from her letter )

ā€œĀ Please can you monitor her TFT is on a monthly basis and stop the carbimazole completely if you find that the TSH continues to rise above 3.Ā I am going to get a synacthen test done on her and will review her progress in three months.ā€

I had my bloods done yesterday and am now concerned the results will be significantly different to what they would be if I had stayed on medication

I did inform my GP and he just said let me know what the outcome is when I hear from the consultant. I also thought you had a chance of getting Grqves because of the ā€œoverā€ active thyroid, If I go under active do I still have Grqves ?

I am sure you will see that I am not very good at explaining myself very well lol lol I was just hoping someone could explain to me in simple terms whatā€™s what.

Thanks for reading a very confusing post šŸ˜‰

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SlowDragon profile image
SlowDragonAdministrator

previous post here

healthunlocked.com/thyroidu...

So Trab antibodies confirms Gravesā€™ disease

Vitamin B12 270 (197-771 ng/L)

Vitamin D 52nmol

Both these are far too low

No folate

No ferritin

How long ago were these tests

What vitamin supplements are you currently taking

You need Vitamin D, folate, B12 and ferritin levels retested

With Gravesā€™ disease or Hashimotoā€™s we need good core vitamin levels

Vitamin D at least over 80nmol

Serum B12 over 500

Active B12 over 70

Folate near top of range

Ferritin at least over 70

Forumjunkie profile image
Forumjunkieā€¢ in reply toSlowDragon

I donā€™t take any supplements, the tests were done back in April/ May, then diagnosed with Grqves. Thankyou for your reply, I will look into the supplements today

SlowDragon profile image
SlowDragonAdministratorā€¢ in reply toForumjunkie

request GP test folate and ferritin if not been tested

Ideally retest vitamin D and B12

Or test privately

only start one supplement at a time then wait at least 10 days before adding another

Start with vitamin D

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

Thereā€™s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Itā€™s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Forumjunkie profile image
Forumjunkieā€¢ in reply toSlowDragon

Thankyou very much

SlowDragon profile image
SlowDragonAdministrator

Donā€™t start any B vitamins if getting retested first

Wait until had test done

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week or so later add a separate vitamin B ComplexĀ 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if canā€™t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around Ā£20-Ā£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find itā€™s not high enough dose

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500 ( or Active B12 over 70)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

pennyannie profile image
pennyannie

Hey there again :

Yes - Graves is an auto immune disease and as such - for life.

Generally diagnosed when your immune system attacks your thyroid because the thyroid is a major gland and responsible for one's body full synchronisation and metabolism and the and you can't live without a thyroid - or replacement thyroid hormone medication.

Do you know how to find your previous post/question as I think I thought I'd explained this before - just press the Profile icon top right and that should take you to all you have ever written and all your replies.

It can be bit like being on a seesaw - stuck up too high and unable to touch the ground - or stuck down in the ground and unable to maintain momentum.

The Anti Thyroid drug simply blocks too high a level of T3 and/or T4 and once your T3 and T4 levels fall back down into range the AT drug should be titrated down so your T3 and T4 stay in the ranges at around mid way.

The most recent research is suggesting that the longer the patient stays on the AT drug and better the longer term outlook for the patient :-

pubmed.ncbi.nlm.nih.gov/338...

Do you have any current readings and ranges of your T3 and T4 blood test results ?

If you have online access to your medical records - can you share what you can see there ?

A TSH over 3 generally suggests the patient has become hypothyroid and the T3 and T4 now too low in the ranges - and the AT drug needs to be titrated down again :

There is another treatment option referred to as Block and Replace which may solve this problem - as you stay on the AT medication at a higher dose to relieve symptoms

BUT ADD IN a measured dose of T4 - Levothyroxine so your T3 and T4 do not fall too far through the ranges causing the equally disabling symptoms of hypothyroidism.

In this way you stay on the AT drug as the research above suggests - but that you keep your T3 and T4 midway by taking a measured dose of T4.

Did you get in touch with the The Eye Disease Charitable Trust and get sign posted to a specialist eye/endo team who jointly manage your symptoms ?

Trust you are now taking Preservative Free eye drops and ointments - how are your eyes ?

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