GLUTEN: I’ve had hypothyroidism for 8 years and... - Thyroid UK

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GLUTEN

higheruniverse profile image
105 Replies

I’ve had hypothyroidism for 8 years and only just been told to avoid gluten.

Anyone noticed health improvements avoiding it?

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higheruniverse profile image
higheruniverse
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105 Replies
Fruitandnutcase profile image
Fruitandnutcase

I’m in remission from Graves and I went totally gluten free about four years ago after reading that it could benefit thyroid patients. I tested myself us8ng a home fingerprick bloodtest and in that time my thyroid antibodies have dropped massively. When I started I thought I would only be doing it for a short time but the antibodies dropped so much that I haven’t eaten gluten since. It’s very easy once you get going. I joined CoeliacUK and got their excellent handbook, it lists every gluten free food and ingredient you can think of as well as having a very good website.

I didn’t test to see if I was Coeliac before going GF and to do so now would mean eating gluten for a while before being tested which I’m not prepared to do so if you think you could possibly be Coeliac get that tested before you stop gluten or the blood test won’t work. If like me you don’t care then just go for it.

higheruniverse profile image
higheruniverse in reply to Fruitandnutcase

I’ve tried my best since July to go gluten free. I’m due to get my thyroid checked soon with my gp

shaws profile image
shawsAdministrator in reply to higheruniverse

He should check your antibodies so that you will know if gluten is helping you to reduce them.

Beth2dani2 profile image
Beth2dani2 in reply to shaws

My doctor won't test my antibodies says it's a load or rubbish and that I had to up my Levo which then brought my t4 back to normal but still feel same

shaws profile image
shawsAdministrator in reply to Beth2dani2

You T4 may be 'normal' but what about your T3 - which is rarely tested.

T4 - levothyroxine - is an inactive hormone and its job is to convert to T3. T3 - liothyronine being the only Active Thyroid Hormone and it is needed in our millions of T3 receptor cells and brain and heart need the most.

You can get a private antibodies test from one of our recommended labs if you wish.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Beth2dani2 profile image
Beth2dani2 in reply to shaws

My t3 has always been fine I as a Medicare test that's when I found out my t4 was bight t3 was fine but my antibodies were very very high , so showed my doctor and said up your Levo I did had test done at doctors t4 back to normal but he wouldn't test my antibodies so not sure if there still raised

Beth2dani2 profile image
Beth2dani2 in reply to shaws

I will get another test for antibodies thankyou how much do they charge

shaws profile image
shawsAdministrator in reply to Beth2dani2

You'd have to phone the lab(s) and enquire about the charges.

Beth2dani2 profile image
Beth2dani2 in reply to shaws

Thankyou I will do

Khumaryan profile image
Khumaryan in reply to shaws

Study Anthony William books. It reveals a lot about ‘autoimmune ‘ conditions.

McMurtagh profile image
McMurtagh in reply to Fruitandnutcase

I’ve tested negative for Coeliac disease so no point in going gluten free here.

E_lizab8 profile image
E_lizab8 in reply to McMurtagh

There are false negatives and also no test for gluten/wheat sensitivity, only trying it out can tell if it helps.

SlowDragon profile image
SlowDragonAdministrator in reply to McMurtagh

Many of us test negative for coeliac, but can actually be severely gluten intolerant

You don't need any gut symptoms

My endoscopy showed damage as if coeliac.

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

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

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

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

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

AnneEvo profile image
AnneEvo in reply to McMurtagh

From what I've read on here, people can be sensitive to gluten without being a coeliac.

Paula101 profile image
Paula101

I'm hypo with Hashimotos. I certainly do benefit from being gluten free.

These last 2 weeks though, due to a stressful family situation my routine has been all over the shop, I've not shopped properly & have been grabbing anything I can get my hands on, mainly bread products.

It's been really interesting to notice, that having eaten more gluten in the last 2 wks I've felt dreadful, my gut has been very unhappy. I've terrible wind, painful guts, headaches, nausea, acid reflux, diarrhoea, even carpal tunnel has returned.

Now, I've not experienced those symptoms since I started looking after my gut & going gf some months back.

I'm back on track & intend to keep it that way.

I know a girl who tested negative for coeliac and stayed GF regardless as she says she feels better for it.

hugatree profile image
hugatree

Actually everyone should go gluten free regardless if there is a thyroid condition or celiac disease. That's because gluten causes inflammation in the gut-brain axis in all humans. It not only leads to leaky gut and gastrointestinal problems but also leaky brain, resulting in brain fog, cognitive impairment, and vulnerability to dementia. The main difference if you have celiac disease is that you notice the negative effects quickly and cannot tolerate gluten even occasionally.

While I still had a healthy thyroid I went gluten free for some months and certainly felt better with no more brain fog and improved energy levels. Now it's also benefiting me by keeping my gut healthy and I hope the antibodies will drop in the long run as well.

higheruniverse profile image
higheruniverse

Great information. Thank you

radd profile image
radd

higheruniverse,

I went totally gluten free for about a year and noticed a massive improvement in gut issues and tolerance to thyroid meds.

I am now able to tolerate small amounts of gluten, but even after several years I am still too afraid to go full out .... and actually don't need to.

greygoose profile image
greygoose

Just to give you a balanced picture, I went gluten-free for three months and it didn't do anything for me. So, I started eating it again, and didn't feel any worse. I don't believe it helps everybody. :)

DotLeeds profile image
DotLeeds in reply to greygoose

I don’t have any problems with gluten but have developed severe problems with fructose. I really miss apples and pears, but 4 days of pain mean they are totally off the menu.

E_lizab8 profile image
E_lizab8 in reply to DotLeeds

Me too, find I can eat raspberries/strawberries and very small amounts of other fruits occasionally, especially if cooked.

DotLeeds profile image
DotLeeds in reply to E_lizab8

The only fruit I can always eat is ripe banana, not under or over ripe though. Occasionally I can get away with eating a few raspberries or a small orange but not always.

Marz profile image
Marz

One of the problems with the 26 feet of gut - is that we cannot see inside 😊

Wheat and other grains are endlessly sprayed with chemicals whilst growing and afterwards - at least 14 - yikes ! It is a personal choice to be GF and a difficult one. Life doesn't end without it 😊

Treepie profile image
Treepie in reply to Marz

Just read that France has put a three month ban on a widely used pesticide which is supposedly used on the soil around lamb's lettuce after over 60 were treated at hospital for symptoms associated with metam sodium.Most victims worked on the market gardens or greengrocers.French farmers make heavy use of pesticides.Honey production has dropped two thirds in 20 years.( recommend novel" The history of bees")

Eat your greens!

Then last night saw Simon Reeve in Almeria amongst a miles of greenhouses growing vegs using very badly treated immigrants,

The price of cheap food.

JGBH profile image
JGBH in reply to Treepie

Hello Treepie, am most interested in knowing more about the ban on a certain ghastly pesticide used by French farmers in the culture of lambs lettuce... love it and eat quite a lot of it 😩. So would you be able to let me have more information either on this forum (useful for many) or by pm?

Thanks for bringing this to our attention. We are being poisoned....

E_lizab8 profile image
E_lizab8 in reply to JGBH

This pesticide is in process of being banned in US since they lost big court case recently, hopefully this will mean that it will be banned everywhere else too. Only way to try and avoid it is to eat ecologically grown products and even then they can be contaminated by the wind so sooner its banned the better.

Treepie profile image
Treepie in reply to JGBH

The article I read was from the Times Paris correspondent in last Saturday's paper.

Apparently respiratory problems were reported in the Western Loire region and believed to be linked to metam sodium . The US believes it to be a probable cause of cancer and prohibits direct application on plants. Why using it on the soil is OK is a mystery to me. Apparently market gardeners in France have told the Authorities that they will go out of business and lay off workers if the pesticide is banned.

It seems the French farmers use high quantities of pesticides and recently the Government announced an inquiry into clusters of birth defects over the past decade.

Pesticides are devastating the bee population and all insects and thus reducing the birds etc that feed on insects. The environment is being sterilised.

Time for another Rachel Carson to come along.

JGBH profile image
JGBH in reply to Treepie

Thank you so much for replying. It’s catastrophic... yes am aware French farmers use much too much pesticides. I feel quite angry about such an attitude although I also understand many livelihoods are threathened but it needs to stop. What to do is the question.

In France, where food used to be of most importance, good quality food that is, the situation has changed beyond belief. They have adopted an American diet .... and to think this country is about to trade with America for foodstuffs and other things (no political intention here, just a remark on the present situation) is so very scary! Will have to stop eating lambs lettuce from now on.... something I have eaten since my childhood. I fear there won’t be much left to eat that is not polluted or poisoned. Brave New World!!!

Marz profile image
Marz in reply to JGBH

I have also read that the bags of 'washed' leaves have a gas pumped into them to keep them fresh :-( Have no idea what it is or where I read it ...

JGBH profile image
JGBH in reply to Marz

Hi Marz,

This is so so unnecessary.... as a child then living in France I used to go and collect fresh lambs lettuce from my grandparents’ meadow... a long time ago.... What’s happening to our sad disintegrating world? What to eat and not to eat?

Marz profile image
Marz in reply to JGBH

We used to collect watercress from the stream for picnic sandwiches - but not in July and August !

bookish profile image
bookish in reply to Marz

According to Caroline Gunn (quoted as Food Safety Expert on Healthy Food Guide) salad leaves are washed in a chlorine rinse and then bagged in a modified atmospheric pressure (MAP) bag with altered levels of oxygen, nitrogen and carbon dioxide to enhance shelf-life. Opinions vary!

Marz profile image
Marz in reply to bookish

Sounds harmless enough :-(

higheruniverse profile image
higheruniverse in reply to Treepie

I’d like more info too please. I’ve been vegetarian for the last 12 months so eat lots veg. I live in Spain and would eat produce grown in Murcia

SlowDragon profile image
SlowDragonAdministrator in reply to higheruniverse

If vegetarian, are you supplementing B12

Had your levels of B12, folate, ferritin and vitamin D tested?

Post results and ranges if you have them

higheruniverse profile image
higheruniverse in reply to SlowDragon

I’m due to have a test as soon as the results are back

(A couple of weeks) I’ll post on here

Treepie profile image
Treepie in reply to higheruniverse

See reply above .

Re Spain the issue On Simon Reeve's TV travelogue was the terrible treatment of immigrants in the Plastic covered miles of veg grown in Almeria. Also that most of the plastic once used up is just dumped and finds its way into the Med.

Fruitandnutcase profile image
Fruitandnutcase in reply to Treepie

I’ve often w9ndered what happened to the plastic once it was used. Husband thought it might be recycled but I don’t think so as it is presumably laid by machine and i think that once used it would be impossible to get it back into a state that it could go through a machine again.

Marz profile image
Marz in reply to Treepie

Just watched Simon Reeve - horrific !

Treepie profile image
Treepie in reply to Marz

Indeed.He is not the usual sort of travel presenter. Still have the first two of this series to watch.

Marz profile image
Marz in reply to Treepie

I think he's great - off the beaten track and where angels fear to tread - springs to mind ... 😊

Jonpaul0_1 profile image
Jonpaul0_1 in reply to Marz

Any idea what your gut would look like if it's 'leaky or sensitive to gluten ? Having had a colonoscopy a few months ago and been able to see all of my bowel, one end to the other I'd be interested to know what the signs may be inside your gut ?

Marz profile image
Marz in reply to Jonpaul0_1

I was diagnosed with Crohns after Gut TB when I was 27. I am now 72 so I have had a close relationship with my gut over the years 😊 My last colonoscopy here in Crete revealed only low grade Crohns lesions. Looking at the screen it seemed as if stardust had been sprayed into the colon - this reveals the dodgy bits. Having had a hemi-colectomy and further resections over the years - my gut looks more like a roundabout - where the large intestine meets the small.

My gastro talked me through everything once I had come around. Think they are more open than in the UK. I would ask for a full report to be sent to you. I was given my pics on the day ...

Jonpaul0_1 profile image
Jonpaul0_1 in reply to Marz

I've had colitis for 17 years and had a few colonoscopy myself !! I'm awake when I have it done so am able to see the screen whilst it's going round my bowel. Very interesting actually. Mostly healthy apart from a bit of scarring from previous ulcers and non active colitis further along. Don't really want to go fully gluten free if I can help it and having years of remission with the odd flare up - I put it down to a virus that upsets my gut. My symptoms come and go very quickly and am back to normal after a short batch of steroids. My conversion and absorption levels are good and my diet I've changed to eat more greens. Perhaps im one of the lucky ones

JGBH profile image
JGBH in reply to Marz

Very difficult to change the medical culture in UK! Not really pro-active and most people do not really question them.... as I do and get some odd looks ... must have my records marked with a big red cross.... difficult demanding and awkward patient! It would not surprise me at all.

Those who appear to listen to me look bewildered and as though I spoke Hebrew! Oh dear .... In Europe generally they tend to be more open and give more responsibility to the patients, which is generally again a better idea.

Marz profile image
Marz in reply to JGBH

Mistakes are still made here. We have to make sure we continue to be our own health advocates and to have enough knowledge to ask the right questions. Then we need to know enough to ensure we have the right answers ... 😊 x

Moiseym profile image
Moiseym

I’ve been GF for 7 months (strictly, I don’t cheat) and I feel no different at all BUT my antibodies have halved which I’m thrilled about! My gut clearly hates gluten.

JGBH profile image
JGBH in reply to Moiseym

That’s most interesting. I suppose it all depends on the individual and might be worth testing individually.

Fruitandnutcase profile image
Fruitandnutcase in reply to Moiseym

That’s me too. I’ve bern GF for about four years and I’m not sure how different I feel but my antibodies have gone down to almost nothing so I’m sticking with GF. It might be a fluke but who knows.

Agree with GG though, bodies all react differently. I’m the only person I know who developed steroid induced T2 diabetes even though I know a lot of people who are taking of have taken steroids in larger quantities and / or for longer periods. It’s just one of those things, different people react differently to all sorts of things.

shaws profile image
shawsAdministrator in reply to Moiseym

Well done.

Joanne82 profile image
Joanne82

I’ve been gf for 6 months and it hasn’t helped any of my symptoms. I think it’s just a test and see if it works for you as we’re all different

SlowDragon profile image
SlowDragonAdministrator in reply to Joanne82

Joanne82

Have you retested your antibodies

Joanne82 profile image
Joanne82 in reply to SlowDragon

Yes I did, in may 18 my thyroglobulin was 518 and peroxidase 171, I then went gluten free. I restarted at the start of September and they had went up to 556 and 284

SlowDragon profile image
SlowDragonAdministrator in reply to Joanne82

Was that retest before going back on gluten?

Have you considered trying dairy free?

Joanne82 profile image
Joanne82 in reply to SlowDragon

Yes it was, I was curious and really hoped it would be better but was shocked to see it was higher. Funny you say that but while being gluten free and not noticing a difference I tried dairy free. I've realised I can have a little bit like milk in the odd cup of tea but not a lot so a frozen yogurt smoothie or milkshake would make me bloat. Recently I've tried cutting out sugar and I have to say I've felt a lot better from cutting out sugar than anything else. On top of all this I take some supplements and think they help too rather than the gluten free

Flynzer profile image
Flynzer

I decided to try gf for 3 months and was very surprised when my joint and muscle pain practically disappeared after a few days, also my energy and mood improved. I intend to keep going with it. It's not difficult. I also use a vitamin D spray and try to keep my minerals up using mineral rich food.

HLAB35 profile image
HLAB35

My sister went gluten free before I did. She likes to be very fit and works her body fairly hard so it was more obvious to her that there was a correlation. When I started I am certain I had some detox symptoms (like getting over a virus) and lost some weight, but it was worth it in the end as IBS symptoms reduced and I felt weirdly younger.

Wantie profile image
Wantie

Hi I’ve tried everything to get my antibodies down, gluten free, LDN, selenium, high dose vit C and zinc.......been on this regime for nearly a year and there has been no change in my antibody count. My weight goes up and down and my gut sometimes reacts badly to a meal or a failure to eat regularly, but I’m not going to go back to eating bread, pastries, wheat because I actually eat a better more wholesome diet when I cut it out ! Also I believe it’s really hard to eliminate ALL gluten and I’ve stopped worrying about the food that ‘may have traces of gluten’ like oats. I believe my overall health is much more closely related to stress than diet. But I do believe we are all different. I had a consultation with Dr Tofts a few years back who told me to stop worrying about antibodies there is nothing we can do to bring them down and since we don’t have any evidence of the harm they do, his advice was stop testing for them once they’ve been detected ! Any thoughts?

greygoose profile image
greygoose in reply to Wantie

For once, I totally agree with Dr Toft. There's also no evidence that reducing antibodies is of any benefit.

Fruitandnutcase profile image
Fruitandnutcase in reply to greygoose

Suspect I do it just because I can and also because it is something I can more of less control. I still eat a lot and a varied diet though.

greygoose profile image
greygoose in reply to Fruitandnutcase

Not criticising people who find they feel better gluten-free, in any way. Just questioning this obsession with trying to reduce antibodies.

Fruitandnutcase profile image
Fruitandnutcase in reply to greygoose

In my case I think it makes me feel like I’m doing something to help myself. I’ve got several other autoimmune conditions, it was when I developed inflammatory arthritis on top of all the rest that I thought I’d give it a try having read on here that it was of benefit to some people who were hypo.

I feel that having fewer antibodies attacking various parts of my body has to be better for me.

I don’t have any proof that being GF works there’s just not much you can do to fight back against autoimmune conditions and in my mind I think fewer things attacking bits of your body has to be for the good.

Like I say it could be a fluke / coincidence, it may have been time for my antibodies to die off naturally. Who knows?

greygoose profile image
greygoose in reply to Fruitandnutcase

But that's the whole point: are these antibodies actually doing the attacking? TPO and Tg antibodies don't attack the thyroid. They just come in to clean up the mess after the attack. So, why would we want to reduce them? They're doing their job.

Music1 profile image
Music1

Yes. I have Hashimotos. Difficult to tell as I started Levo and went Gluten free the same time. I've lost a lot of weight, feel better in myself/ gut. When I have accidently had gluten I think my body can tell - I get stomach cramps, unable to go to the bathroom easy, headaches and my body just aches etc. May just be coincidence? It has been tough as I used to love drinking beer, eating a lot of bread and being able to snack easily. Not sure if it's knocked down my antibodies but I would find it tough to go back. Sadly I think it's made a difference. I say 'sadly' as there are a lot of things I miss, but health is more important. Best wishes x

SlowDragon profile image
SlowDragonAdministrator in reply to Music1

You can get plenty of gluten free beer these days.....even old Speckled Hen and other "proper beer". Look in large supermarket "free from" section

Gluten free larger, especially Peroni available in many pubs

higheruniverse profile image
higheruniverse in reply to SlowDragon

Any gluten free wine?

SlowDragon profile image
SlowDragonAdministrator in reply to higheruniverse

All wine is gluten free

Music1 profile image
Music1 in reply to SlowDragon

Do you know if Archers Peach Schnaps is GF by any chance?

SlowDragon profile image
SlowDragonAdministrator in reply to Music1

Likely, suggest you google or look on coeliac UK

higheruniverse profile image
higheruniverse in reply to Music1

I’ve also lost weight, about 5 1/2 kilos since October last year without trying. I was 76kg now 70.5kg, I became vegetarian last October so that could have contributed and I became gluten free in July this year.

Another thing that I’m so pleased about “at the moment” is I feel and look less “swollen”. I used to look in the mirror and think I look swollen and I couldn’t bear wearing my rings.

Music1 profile image
Music1 in reply to higheruniverse

Before I was diagnosed Hashimotos (autoimmune thyroid) and suggested I go GF I was so tierd all the time. I would eat more carbs and pasta thinking it would give me more energy. I went from a size 10 - 16 in not much time. I felt 'swollen', bloated and some people would ask if I was pregnant. As I was trying and failing with ivf at the time it became quite depressing. I am pleased about the weight loss though. Glad I didn't through all my clothes out lol. My sister has been trying GF and from photos I've seen ... she has lost a lot of weight and says she feels so much better. Can only be a good thing :)

Jenny-veggie profile image
Jenny-veggie

Hi. I have reduced my thyroid antibodies to 0 AND no longer have autoimmune thyroid disease written on my blood test results after going totally gluten and dairy free. I'm one of Dr Chatterjees patients and it's the first thing he asked me to do.

Polly91 profile image
Polly91 in reply to Jenny-veggie

Wow that’s impressive. How long did it take ? Does this mean you no longer have Hashis ?

Do you still take thyroid hormones?

Thanks

P

Jenny-veggie profile image
Jenny-veggie in reply to Polly91

I gave up gluten and dairy for 6 months and then had my antibodies tested and my blood tests results no longer have on them the autoimmune thyroid disease that I had before. I'm still gluten and dairy free. He prevented my thyroid turning underactive so I haven't ended up on thyroid medication either. I was also treated for sibo at the start by antibiotics and good probiotics.

Polly91 profile image
Polly91 in reply to Jenny-veggie

Thank you Jenny

That’s so interesting. Can I message you with a couple of questions ?

Jenny-veggie profile image
Jenny-veggie in reply to Polly91

Yes sure

hugatree profile image
hugatree in reply to Jenny-veggie

Wow, that's awesome!

May I ask how what your thyroid levels (TSH, T4, T3) were when you got diagnosed with Hashimoto? I'm curious what the Dr. considered as not underactive.

in reply to Jenny-veggie

Jenny I too reduced my antibodies to zero 2 months after I went gluten-free and my only nodule disappeared at the same time. I had had testing done that showed I was off the charts non-celiac Gluten Sensitive and allergic to whey and told I literally had to go gluten and whey free so I did. My question is did you have to reduce your thyroid medication? A few months after I went gluten-free I started feeling worse and worse so of course the doctor bumped up my medication thinking I needed more and blood tests weren't out of range and long story short by this past August I was horrible total fatigue head pressure aches and heart palpitations high pulse sweating I literally could hardly get through the day. Early September I had a new doctor cut my meds and I am slowly reducing medication and slowly feeling normal. So just wondered if you had to cut your medicine since you healed your gut and was able to absorb so much better.

Jenny-veggie profile image
Jenny-veggie in reply to

Hiya. I was never on medication, it hadn't reached that stage.

in reply to Jenny-veggie

Good for you!!!!

SlowDragon profile image
SlowDragonAdministrator in reply to Jenny-veggie

Is this Dr Chatterjee of "Doctor in the House"?

Does he see private patients?

Fruitandnutcase profile image
Fruitandnutcase in reply to SlowDragon

According to his website his list is full :(

Jenny-veggie profile image
Jenny-veggie in reply to SlowDragon

Yes that's him. He isn't taking any new patients. I managed to see him before he got more well known. However I think any good nutritionist would do a similar protocol

higheruniverse profile image
higheruniverse in reply to Jenny-veggie

That is fantastic ❤️

Donnaca profile image
Donnaca

I was gluten and dairy free (excluding grass fed butter) for 3 years and thought I didn’t notice much difference, when you stop eating gluten, you stop making the enzymes needed to break it down (these do start to work again though when you start eating it).

Anyway it’s been 1 year of eating gluten and I’ve decided to completely cut it out again,my gut is in a terrible mess, painful, inflamed and I have aches all over my body. My skin doesn’t look as good as it used to either.

Where do people get a kit to test antibodies from at home? What is the finger prick test?

Marz profile image
Marz in reply to Donnaca

Go to About Testing on the Menu of the link below ...

thyroiduk.org

SlowDragon profile image
SlowDragonAdministrator in reply to Donnaca

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

higheruniverse profile image
higheruniverse in reply to SlowDragon

I’ve always been told by my doctor to take my levothyroxine as normal and have my blood test? So I’m not waiting 24 hrs until it’s out my system! 😤

helvella profile image
helvellaAdministratorThyroid UK in reply to higheruniverse

Levothyroxine isn't "out of your system" in 24 hours. It has a half-life in a normal person of around a week.

The issue is that from putting the tablet in your mouth, for something like two hours, your Free T4 steeply rises. It then falls, slowly, over the next few hours.

The difference between having your blood drawn two hours after taking your tablet and 24 hours after can easily be enough to mislead a doctor. Few, if any doctors, even try to account of this peak. If they do, well, just what do they base any adjustment on?

The other major issue is that TSH is highest in the every early hours. It falls considerably between then and sometime in the afternoon. Again, your doctor has no basis on which to take account of that shift. (Some people have virtually no change in TSH through each 24 hours. So a doctor can't even estimate where it would be unless they have analysed your TSH pattern.) This TSH shift can easily be enough to make the difference between being diagnosed or not, having a dose adjustment or not.

Entirely up to you if your faith in your doctor makes you dismiss all of this.

higheruniverse profile image
higheruniverse in reply to helvella

No I’ll re-read this info to understand it and make a decision. I’ll research it. Thank you

shaws profile image
shawsAdministrator in reply to higheruniverse

This may be helpful. It is a big learning curve to get the best possible from our blood tests.

Extract:

To evaluate the existence of circadian variations in thyroid hormone and TSH levels, blood was drawn every 20 min for 24 h in four and for 14 h in one volunteer. Hormones were measured by sensitive radioimmunoassays. TSH: A diurnal rhythmicity could be demonstrated with peaks from 8 p.m. to 2 a.m and a nadir from 7 a.m. to 2 p.m. Superimposed on the diurnal rhythm multiple shortlived fluctuations were observed. Thyroxine: Pooled data showed peak values from 8 a.m. to 12 a.m. and lowest levels from 11 p.m. to 3 a.m.

ncbi.nlm.nih.gov/pubmed/578614

Tina_Maria profile image
Tina_Maria

Unfortunately there is a lot of advice out there on going gluten free with hashimotos and other auto-immune diseases, but the scientific evidence is sadly lacking. It does seem to work for some people but it certainly does not for all. Also cutting out certain foods can leave you with nutritional deficiencies in the longvterm, so its not as clear cut as it seems. There is also no evidence that it reduces thyroid antibodies, that was observes in some cases but again not all. There is a higher incidence of coeliac disease in people with thyroid diseases, so avoiding gluten is certainly necessary there -but a blanket ban on gluten for everyone is certainly not warranted.

greygoose profile image
greygoose in reply to Tina_Maria

Well said!

SlowDragon profile image
SlowDragonAdministrator in reply to Tina_Maria

But the only way to know, if it helps you.....is to try it for 3-6 months.

Ideally retesting antibodies before and after

Wish I had done that 20 years ago after first negative coeliac test.

Tina_Maria profile image
Tina_Maria in reply to SlowDragon

Yes perhaps to some extend.

However, if you cut gluten out for a long period of time, you may actually get a reaction from introducing it back into your diet, as you may have had a reduction in certain enzymes that deal with the gluten and you may be now sensitive to it as you have not had it for a while. It could be a double edge sword - as all over sudden you may think gluten is the problem when perhaps it wasn’t a problem to start off with....

just a thought!

tangolil profile image
tangolil

Yes - my health has improved enormously since becoming gluten free. I have not been diagnosed as gluten intolerant but decided (by means of elimination) that it was the gluten that was affecting me. Soya is also not good for us hypo sufferers.

learner100 profile image
learner100

Hi higher universe. I've been hypo and Hashimoto's for over 4 years. I went GF just over two years ago as a trial (but I also cut out red meat, all dairy, all sugar and all processed food at the same time) as I was just so fed up with feeling so rubbish, flat and achy all the time. I also increased my consumption of fresh fruit and veg 3 fold.....

The results were so incredible that I have not been able to go back on any of these foods. My joint aches disappeared. Brain fog gone; so much more energy, feel younger, IBS issues so much improved, digestion of food is now regular and pain free and I've lost a lot of the weight I gained since I went hypo..... (We all know that we are what we eat. But its only when you get rid of all the crap that you realise just how true it is....)

I would echo many other posts here - it does appear that thyroid issues slow down the absorption of nutrients and vitamins. Even eating as healthily as I do now - my bloods results indicate that I'm still low in and have to take supplements for B12, D, magnesium, zinc, selenium, omegas, and a couple of other things up and down. And my antibodies never decreased even though I feel so good. I honestly have not felt this good in 20 years (I'm 51).

I think it seems to be very individual. Just try to stay on top of your bloods and adjust accordingly. If being GF works for you - you will know it pretty quickly - and it will be very hard to go back on it afterwards! Give it a try - you have nothing to lose. Good luck!

endomad profile image
endomad

I went gluten free before thyroid removed, it made a massive difference for me, especially energy and joint pain. I am not allergic to wheat/gluten but deff sensitive to it. I became very ill after TT and wheat crept back into my diet, back came all the ibs, tummy pains, sweating, diarrhoea, joint pain and no energy. I went scrupulously gluten free again 4 years ago and again, for me the difference is huge, nothing to do with my thyroid and i dont have hashi's. For some it is just amazing but just as many have no effect at all.

I have on few occasions been daft and thought 'oooo little bit of cake wont hurt' within 20 mins i get stabbing tummy pains and spend next 24 hours on the toilet. Funnily enough french bread doesnt trigger as much but then it doesnt have all the preservatives in it here, so i deff think there is a lot of anecdotal evidence that it could be chemical sensitivity as well as the actual gluten.

It is an easy cost free thing to try, dont bother using gluten free stuff, just avoid processed food and grains. If in 3 months no change you know it isnt for you but if you feel lots better, then you know its for you. Its not something you can do cutting down on gluten, you have to remove it completely, so check all labels. xx

Pianoshan profile image
Pianoshan

I went gluten and dairy free after being diagnosed with hashimotos. My antibodies dropped from +600 to 300 after cutting these foods out of my diet. Still working on getting the antibodies to decrease even more.

Web12233 profile image
Web12233

I can tell you my my experience, just try gluten free or 85/90% gluten free and see what it does for you. It will help in various ways for various people. For me, my psoriasis completely healed and went away within two months after struggling with it for years! Dropped a few pounds, and energy is much better. It’s worth trying. I fell off wagon for about two weeks and I was drained, terrible gut symptoms and overall sluggish. Back on track again for 3 days and feeling better already.

It’s worth it to try for 3-5 months.

theriverman profile image
theriverman

i've been gluten free about a month or so and my TPO when up by 10 from before so I'm not sure if it's just not enough time or if it doesn't help me

Tristy profile image
Tristy

It has made an enormous difference to me. I felt very unwell before and a big part of getting my health back was going gluten-free. It’s different for everyone but worked for me. I feel very ill if I eat gluten now.

Joanne82 profile image
Joanne82

This is a total head melt for me. I have sent gluten free, I haven't noticed a difference, there isn't a lot of scientific evidence to back it up so I feel like I should just eat it again and keep my diet healthy. However the fear or the unknown is swimming around my head and I'm too scared to eat it in case it is doing damage and I don't know. Then I think what if I'm missing out all this time and actually there's no reason to and round and round I go in circles!

Olsbird profile image
Olsbird

Yes. I'm non hashis, negative for celiac disease - just regular underactive thyroid and going gluten free was life changing. It took 12 days of total gluten abstinence to be 'normal' so if you do try it, be patient. And read every label as it hides everywhere. Good luck.

higheruniverse profile image
higheruniverse in reply to Olsbird

Thank you for the advice Oldbird

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