Charlatan or science?

[Hungryallthetimes]

hi folks,

I am awaiting diagnosis of Grave’s disease and during the last 3 months since my blood tests via the NHS and the waiting game to see an endocrinologist, I have been researching hyperthyroidism.

The internet is FULL of people claiming there is a link between micro biome and leaky gut and Graves, however I can’t seem to find any science based support for this.

It’s on the list to discuss with the endocrinologist but wanted to get your thoughts on this.

Examples include:

thegravesdiseasechef.com

Thanks!

Blood test results 16th Feb

B12 327 (range 197-771)

Ferritin 48 (range 30-150)

Folate 10.9 (range 1.9-25)

TRAb 3 (range 0-3.3)

TPOAb 178 (range 0-34)

FT4 38 (range 11.4 - 22.8)

TSH 0.01

[jimh111]

It's not something I've studied but I'd always be suspicious of anyone selling something especially books that are so expensive. In any event if you have Grave's it needs to be treated.

[Hungryallthetimes in reply to jimh111]

Yup!

If only there was a cure to reduce TPOAb.

For me, my TRAb is / was at 3 (range 0-3.3) so could do with reduction as well…

[SlowDragon Administrator in reply to Hungryallthetimes]

So your Trab is not positive for Graves if not over 3.3

What are your TPO and TG thyroid antibodies results

[Hungryallthetimes in reply to SlowDragon]

TPO is 178 (ref 0-34)

Not tested for TG antibodies… would this be advisable?

[greygoose in reply to Hungryallthetimes]

Probably not necessary as your TPOab is saying you have Hashi's. Hashi's often starts out with a false 'hyper' swing, but the end result is hypothyroidism, and doctors seem incapable of distinguishing between that and Graves'. But your FT4 and FT3 levels can be a dead give-away. What were those levels when you were 'diagnosed' with Graves'?

I expect the carbi has helped enormously for two reasons: a) your thyroid hormone levels probably weren't that high to begin with and b) the thyroid itself is not over-producing hormone, so stopping what it is producing will have a rapid effect. But, take care, you can drop into hypothyrodism pretty rapidly.

[Hungryallthetimes in reply to SlowDragon]

Thank you for your reply, I updated my original post to include all blood work results and the ranges.

[GlowCoach Administrator in reply to Hungryallthetimes]

So B12 is far too low. The range is too wide and the cut of point too low.

Suggest to start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.

cytoplan.co.uk/vitamin-b12-...

amazon.co.uk/Better-You-Boo...

The B complex also contains folate and your is on the low side being under 50% of range. Some suggestions: Slightly cheaper options with inactive B6:

amazon.co.uk/Liposomal-Soft...

Contains B6 as P5P an active form:

bigvits.co.uk/thorne-resear...

healf.com/products/basic-b-...

Explanation about the different forms of B6:

helvella.blogspot.com/p/hel...

B complex comparison spreadsheet:

healthunlocked.com/thyroidu...

Do you have a vit D result? NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

It may be that you're in the early stages of Hashimoto's as your Trab test is negative.

Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc

Link with ideas for dietary iron:

dailyiron.net/https://three...

[Hungryallthetimes in reply to GlowCoach]

Thank you! This is super helpful. I’ve bought the B12 spray for a boost.

From what I’ve read, Hashi transient stage usually lasts for only 6 months or so… so would it have cleared up on its own without carbimazole? I’ll never know. I do hope to go in remission, whatever the cause as hyperthyroidism is miserable.

[GlowCoach Administrator in reply to Hungryallthetimes]

You will likely always need the B12 supplement + B complex now that you have thyroid disease, also low meat diet.

Your FT4 was pretty high and the course of each phase is likely different for everyone, very hard to predict.

[SlowDragon Administrator in reply to Hungryallthetimes]

B12 327 (range 197-771)

Ferritin 48 (range 30-150)

Folate 10.9 (range 1.9-25)

These are all on low side

So a daily B12 and daily vitamin B complex and look at increasing more iron rich foods in your diet

Ferritin usually high with Graves’ disease

No vitamin D?

[Hungryallthetimes in reply to SlowDragon]

That’s so strange that Ferritin is usually high with Graves and mine isn’t!

I’ve increased leafy greens and Vit C - hoping this will do it.

Will also add a B12 supplement.

Docs didn’t test for it but I’ve gone on the assumption it’s low as haven’t been out the country since October and probably deficient, so have been taking a supplement for the last 6 weeks.

I eat pretty healthy anyway but have focussed more on it since Jan… am hoping these were low as my BMI was 16 and was definitely malnourished as my metabolism went on breast mode. Weight is piling on now, im a healthy BMI 19 (and I’ve never ever been above this outside of pregnancy and I’m pushing 40!).

Thank you for your tips this is helpful.

[asiatic]

To be blunt - there is no consensus and I would be amazed if an Endo engaged in a discussion on your microbiome. I empathise with your need for answers and applaud your search to learn about Graves, however AITD is so badly treated and misunderstood your brain will quickly be in overdrive at the disconnect between what you read, your expectations and your actual treatment. I would suggest preparing by reading “ good science “ from eg. Tania Smith in Thyroid Patients Canada. Familiarise yourself with what tests the endo should be doing eg. TSI/TRAb. Make sure you understand your treatment options and why regular full thyroid panel must be carried out to keep track of and adjust your meds until you feel well. After that you can expand your reading into other areas.

[Hungryallthetimes in reply to asiatic]

thanks for your inputs!

The thing is, the 20mg carbimazole has worked a treat so far. After a minor bout of hives, I am now feeling great and my resting heart rate is back in the 60s.

I understand that carbimazole doesn’t cure Graves. Instead it buys us time for our autoimmune system to regulate.

I’ll take a look at Tania Smith…

Yeah maybe I have too high expectations of my endocrinologist but I’ll try. Worth a shot IMO.

[asiatic in reply to Hungryallthetimes]

Should have checked your other posts before replying as I mistakenly thought you were at the start of your Graves journey. Rereading them it appears you don’t have Graves and I don’t see any fT3 being measured. I would be concerned Carbimazole will quickly make you hypo which can worsen TED. You need a full thyroid panel TSH / fT4/ fT3 asap

[Hungryallthetimes in reply to asiatic]

I will ask Endo for this when I finally see them in a fortnight! Hoping for not another cancellation…

I understand T3 isn’t routine on NHS. Can I ask what the benefit is? This will help me with my conversation with them.

[asiatic in reply to Hungryallthetimes]

You need a full thyroid panel to have as many pieces of the jigsaw when trying to work out what is going on. TSH alone is useless and the HPT axis is only one of many regulatory pathways involved in Thyroid production. A more important one is the Deiodinase Enzymes acting at cellular level. We cannot measure them but looking at the ratio of FT3:FT4 in blood gives an indication of how efficiently they are converting T4 to T3 . FT3 also mirrors symptoms. TSH and FT4 might be in range, but FT3 might be low indicating a conversion problem. We all have our own narrow band within the range where we feel well and it is FT3 that will mirror our symptoms. You might like to read Tania Smith :- thyroidpatients.ca/2021/07/...

[Hungryallthetimes in reply to asiatic]

There’s a lot to digest there, thank you so much for putting me onto this - exactly what I’m looking for!

[helvella]

However honest, however well written, however much it helped her, it might be useless for you. Other than to cover up the mark on your coffee table.

Are you prepared to go down this sort of path several times - each time hoping "this will be the one for me"? And paying.

The website and the books appear to have been prepared at great expense to look good.

If I were writing a book for thyroid sufferers, I'd be more keen to make it affordable.

[Hungryallthetimes in reply to helvella]

Hahaha

That’s a “no” then!

[SlowDragon Administrator]

Looking through your previous posts can’t see any test results for vitamin D, folate, ferritin or B12

Are you vegetarian or vegan

[Hungryallthetimes]

All vitamins came back ok, as per NHS ranges

folate and ferritin were good

B12 was low but in range, so I’ve topped up on nutritional yeast

Not veggie or vegetarian but low meat

[GlowCoach Administrator in reply to Hungryallthetimes]

Can you post the results along with the reference range for each test - numbers in brackets after yor result.

Nutritional yest is unlikely to be enough to raise your levels to optimal.

[Hungryallthetimes in reply to GlowCoach]

Thank you for your reply, I updated my original post to include all blood work results and the ranges.

[humanbean in reply to Hungryallthetimes]

All vitamins came back ok, as per NHS ranges

Just being in range isn't the same as being optimal. This is why we ask that people post results with reference ranges so we can comment on them.

I used to be told (by doctors) that my ferritin (iron stores) was fine when it was about 20. The range was usually 13 - 150. I didn't start getting enough energy for normal life (e.g. being able to walk upstairs) until I raised my ferritin to about 90 - 100.

[Hungryallthetimes in reply to humanbean]

Interesting…

I feel like it’s a spiral, at the time of my blood test, my BMI was 16 due to the hyperthyroidism. It’s not healthier and I’ve focussed on an iron rich diet so I’m hoping this will have helped.

How did you raise yours? Keen to know so I can hopefully kick this!

[helvella in reply to Hungryallthetimes]

Since nutritional yeast is often used by vegans who may be interested in supplementing their diets with vitamin B12, there has been confusion about the source of the B12 in nutritional yeast. Yeast cannot produce B12, which is naturally produced only by some bacteria.[13] Some brands of nutritional yeast, though not all, are fortified with vitamin B12. When it is fortified, the vitamin B12 (commonly cyanocobalamin) is produced separately and then added to the yeast.

en.wikipedia.org/wiki/Nutri...

The nutritional yeast I checked had 50 micrograms of cyano-cobalamin per "serving".

I take 1000 microgram B12 methyl-cobalamin most days - cherry flavoured!

It was quite some time ago but last time I had B12 tested it was by no means high despite this. Just above the middle.

[Hungryallthetimes in reply to helvella]

That is good to know! I will look into this.

I’ve been eating so many eggs as well to boost supply! Clams are meant to be the best source but it’s not so easy to eat clams every day!

[helvella in reply to Hungryallthetimes]

To be honest, I wouldn't even bother considering the B12 content of any food sources. Just not worth it when you consider the much higher doses and certainty of B12 content that supplementary forms have.