Help!! 😣: Hey guys Follow up to my previous... - Thyroid UK

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Help!! 😣

Alicia1984 profile image
Alicia1984
•14 Replies

Hey guys

Follow up to my previous post regarding T3/stopping Levo rtf I have FINALLY received results from my blood tests.

The results were alot scarier than I thought they would be. I thought I'd just have low T3, buy some somewhere and all would be good. However, it seems this is not the case.

Any advice would be much appreciated regarding getting all these levels sorted especially regarding questions/things to say to my GP when I see him and how to help the Hashis ie diet rtf. Also, there are no dietary reasons etc for low iron and B12 I'm quite balanced overall.

Thanks in advance x

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Alicia1984
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Saggyuk profile image
Saggyuk

What dose of Levo are you on at the moment?

Saggyuk profile image
Saggyuk

I wouldn't say the thyroid results are hugely scary. The slightly suppressed tsh with the slightly over T4 and Rt3 suggest just ever so slightly over medicated maybe - others here may disagree. Then again, your conversion of T4 into T3 may not be 100% optimal as it stands but not dire and increasing T4 to try and change that is not always very helpful if refusing to convert as will just increase Rt3. This may well resolve with the deficiencies treated!

What is indicated is that you are severely iron deficient and most likely anaemic. You must definitely show these results to your doctor sharpish and get treatment asap. He will likely want to rerun the tests so ask him for a full blood count and iron panel as well for a full picture. Iron deficiency can make you feel terrible and very weak so getting it treated will hopefully resolve some of your issues.

Folate is also far too low and Vit D could do with being a little higher although others here can tell you the best dose to take etc. Doc is unlikely to help with these as in range even though far from great and their ranges are nonsense but maybe with the folate?

I can't quite comment on the active B12 as not too much experience with this one so others here can help further. Doesn't seem severely deficient but likely far from good enough?

In case unaware, your thyroid antibodies are high so you have autoimmune thyroid disease so a gluten free diet would be worth trying and may help to fix the low nutrients too and the CRP showing inflammation in your system. My CRP lowered a lot after going GF. Most docs aren't particularly interested in diets or anything else that can help other than tsh so not sure if worth the discussion - unless of course you have a good one lol.

Good luck and hope you feel better soon :-)

Alicia1984 profile image
Alicia1984• in reply toSaggyuk

Hi- it came with a Drs analysis which said I am deficient in active B12, vitamin D & iron and to address those and states my RT3 was definitely too low aswell as the confirmation I have autoimmune thyroid disease. I didn't want to but will have to give the gluten free a go I think. X

SlowDragon profile image
SlowDragonAdministrator

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Your vitamins are all too low. It has nothing to do with how good your diet is. We get poor gut function with Hashimoto's and can't absorb nutrients

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Detailed supplements advice on how to improve here. Low vitamins are causing low TSH, high FT4 and relatively low FT3

Improving vitamins will improve conversion

healthunlocked.com/thyroidu...

Selenium supplements can help improve conversion too

Alicia1984 profile image
Alicia1984

Wow thank you-thats a serious amount of info there!

I'm just a little confused because no matter how much I read I don't really understand the difference between Hashis and 'normal ' thyroid disorder.

I have been tested for Coeliacs a couple of years ago and that came back fine,that being said I literally don't trust a word my doctor has said and never actually saw the result for that. The endo I saw however did suggest that that doesn't mean you are not intolerant and it may still be worth a go. I'm not going to lie, it seemed like a bit of a ballache once I read up on everything that contains gluten and thought there's no point if I don't have to. As little as I understand about Hashis, I've clearly read everywhere that gluten can be key to managing symptoms so I guess this is what I'm going to have to do after all.

What I don't understand is,is if it's autoimmune , does that mean that the TSH is virtually irrelevant and I could potentially stop the Levo and manage symptoms by diet,vitamin supplements and lifestyle changes?

Saggyuk profile image
Saggyuk• in reply toAlicia1984

If doc had suspicion of coeliac, he should have referred you for biopsy as even nhs website states coeliacs blood test is unreliable. Coeliac testing won't show if you have NCGS either which is what I'm diagnosed with. Wow, sounds like an okay endo then as most wouldn't even suggest it as have little knowledge or understanding as many are diabetic specialists.

Autoimmune means your own body is attacking your thyroid and basically slowly killing it off like it would do any virus or infection. You can have thyroid problems with other causes where your immune system is not attacking it and therefore not autoimmune. Unfortunately like your other antibodies for chicken pox for example, your body is designed to not forget so it's very hard to reverse it once started so you may not be able to although lowering them as much as possible will help keep damage lower and keep thyroid going longer maybe. If you do have problem with gluten, you may find it's the cause of some of your symptoms and deficiencies rather than the thyroid. If immune system is being triggered by gluten, it's likely to start causing problems elsewhere and attacking other things later.

No the tsh is still useful but T4 and T3 levels are more important.

It's really not half as bad as you imagine. Most of the world's food is actually supposed to be gluten free if it hasn't been messed around with. Corn, potatoes, rice, GF oats quinoa and other psuedograins, all meat and fish apart from processed, all dairy, all fruit and veg, all nuts and seeds etc are all naturally GF. Wheat and cheap grains are just added to everything as it's a cheap filler and flavour enhancer to bad quality food - it wouldn't have been eaten in most meals and found in everything before the last hundred yrs or so. Sometimes it's easier to stick with GF foods as close to natural as possible until you get your head around the other stuff.

Also it only has to be for a few months, you may find no difference at all and then you can go back to eating it so doesn't necessarily mean you'll have to stay on it - it's just likely to be a problem. The reason for the length of time is that if it is triggering your immune system or inflammation etc, it can a while for this to leave your system and calm down to see an improvement. Coeliacs for example can take a year of GF before it gets better but you often will see some improvements earlier like the first month.

Good luck :-)

Alicia1984 profile image
Alicia1984

I was never offered a biopsy just the blood test- do you think I should ask for one?

Unfortunately,that Endo is not the one I saw this year they just give you whoever is available and with a year waiting list each time I accept it.

Can we still have grains then? I read on line we should avoid grains and keep fruit minimal opting more for veg & meat-maybe I misunderstood. What is NCGS?

X

Angel_of_the_North profile image
Angel_of_the_North• in reply toAlicia1984

non-coeliac gluten senstivity

Can't see the ranges as the right side of the image is cut off. Please type your results so they can be read. But it looks as though you might have just have had a Hashi flare as free T4 is slightly over range but free T3 isn't high, or you should be taking T3 and instead are taking more levo in order to have enough T4 to convert to T3 (but still not doing a great job of it)

Alicia1984 profile image
Alicia1984• in reply toAngel_of_the_North

The range for the antibodies is 0.00-34.00 my result came in at 315.00 😦 That seems incredibly high to me and on the analysis it says this confirms an autoimmune basis for my thyroid dysfunction.

I'm going to eliminate the gluten and take supplements for the vitamin deficiencies and see how I feel then.

I may ask my Dr on Saturday his thoughts on T3 but as it's NHS I'm not holding much hope on that front x

SlowDragon profile image
SlowDragonAdministrator

Non coeliac gluten sensitivity (NCGS) can be as serious as coeliac, but there's no current test.

Like you I had two negative coeliac blood tests, more on my profile

I really didn't want to go GF but it's been a revelation.

It has to be 100% strictly and watch out for cross contamination too (butter dish, toaster, honey, chopping boards etc)

Read up on Coeliac UK

Alicia1984 profile image
Alicia1984

It's assuring to hear it's made such a difference to you because like you, I've always thought it a last resort but seems I'm going to have to give it a go.

Do you find labelling ok when buying things you've not bought before. I read up on Coeliac UK and there's just so many products to remember! X

SlowDragon profile image
SlowDragonAdministrator• in reply toAlicia1984

I did join coeliac Uk - they have an electronic directory

But now after almost two years I have learned most staples

Try to buy as unprocessed as possible

I do eat limited GF bread - M&S is best in my opinion

Make my own GF museli with certified GF oats ( in free from section in supermarket)

Watch out for cross contamination on cutting boards, toaster (you need your own toaster) butter, honey etc

Lots of GF flours available for baking and making sauces

Hardest is eating at friends or family - easiest it to say you are coeliac- everyone thinks NCGS is just you being awkward or some diet fad

Eating out is easy on the whole. Best to check menu online or ring if not clear what they have

Alicia1984 profile image
Alicia1984• in reply toSlowDragon

To be fair I don't really eat much bread anyway so that won't really be an issue, although I may try the M & S one next time I'm in there :-)

I think I will have to stop being lazy and start making my own protein bars as they seem to all contain gluten but it'll be fun experimenting.

I can imagine it's a nightmare eating out but I've already starting looking at menus of my fave places online so I don't get flustered should I end up in one of them lol.

Defo just saying I'm Coeliac because I just cannot be arsed to explain the anti-bodies thing, everyone just looks at you like you're crazy.

Thank you for the tips :-)

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