Complete newbie advice please: Hi everyone, I... - Thyroid UK

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Complete newbie advice please

Funkybird profile image
19 Replies

Hi everyone,

I’ve joined because I went for a load of tests at hospital including thyroid function tests (due to chronic rashes and illness I was having trying to find cause) whilst all my bloods were normal, I was told my TPO antibodies were elevated at 242 suggestive of possible future thyroid disease and ferritin was 34.

Can anyone please explain if 242 is high? As I don’t know the range. I know ferritin if it’s under 29 is classed as low? So I’m not far off.

I want to know what I can do to help myself. I’ve already started having Brazil nuts and take vitamin D. I’m 52 meno, on HRT, pretty fit and active with a mainly healthy diet.

Thanks in advance 😊

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Funkybird
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19 Replies
greygoose profile image
greygoose

Difficult to comment on your antibodies without the range, because ranges vary from lab to lab. But, for TPO the cut-off point is very often 34 - sometimes as high as 60, but I've never seen higher than that. So, yes, your antibodes are high. But, it doesn't matter how high they are, if they're over the top of the range, they're positive, and that's all you need to know. Antibodies are not a measure of the severity of the disease. And, they're not the disease, they are the result of the disease, and used as an indicator for the purpose of diagnosis. Your antibodies are saying you have Autoimmune Thyroiditis - commonly known as Hashi's.

Hashi's is an autoimmune disease where the immune system slowly destroys the thyroid. Doctors are very fond of saying that the presence of antibodies means you will probably become hypothyroid in the future. But, as they don't really understand how to read blood test results, and because blood test results are likely to fluctuate with Hashi's, you could very well already be hypo. Do you have any hypo symptoms?

Do you have your other blood test results and ranges? If so, post them here and let's have a look. If not, ask at the doctors reception for a print-out. It is your legal right to have one. And, you need to know exactly what was tested, and exactly what the results were, and keep your own records - you'll be glad you did! :)

Funkybird profile image
Funkybird in reply to greygoose

Thank you, my GP said they are going to monitor me but I think I’ll get a full thyroid test myself from Medichecks. I’m in the UK and get it properly explained to me. I must admit I’ve been feeling light headed a lot and no energy, low mood, but it’s difficult as I’m menopausal too and thyroid symptoms are similar.

I’ve had every blood test going at GP in 2020 when I broke out in horrendous rashes, with large welts followed by dermatographia. I felt so ill with it, acid reflux and heartburn. I thought it was covid at time but never got tested as didn’t have classic covid symptoms. Anyway coeliac test came back clear, all my vitamin levels were ok too.

I got referred to hospital but they rejected my referral and told me to take antihistamines for 6 months. A year later I got it again but not as bad. I was referred to hospital immunology/allergy clinic, my GP insisted they see me and I insisted on blood tests to see if anything sinister. I didn’t see a doctor though, only a nurse, she concluded it was my hormones causing the problem.

That’s when I found out about TPO and ferritin as she said they tested thyroid and T4. This was January 22. I’ve checked some old blood tests I had in 2019 and ferritin was in 60’s so it’s got a lot lower.

When I get the rashes they take 6 months to clear.

Thank you so much for your advice. I’m going to get the full thyroid tests done myself and I’ll report back. This is a great forum, everyone so helpful 😊

greygoose profile image
greygoose in reply to Funkybird

Very good idea to get full private testing for thyroid:

TSH

FT4

FT3

no need to retest antibodies because you now know you have Hashi's

vit D

vit B12

folate

ferritin

What exactly is it you want explained? Because you'll never get much of an explanation from a doctor, they just don't know that much themselves. Much, much better to ask questions on here.

I can't comment on menopausal symptoms because I didn't have any.

I’ve had every blood test going at GP in 2020

That would very much surprise me! lol They didn't test FT3 for a start, did they. So what were the results for your FT4/TSH?

all my vitamin levels were ok too.

We don't want 'OK', we want optimal. What were the results and ranges?

I didn’t see a doctor though, only a nurse, she concluded it was my hormones causing the problem.

Ohhhhh hormones! 🤣🤣🤣 Which hormones? Because there are an awful lot of them. And, if she suspected it was thyroid hormones, then you should have been put on thyroid hormone replacement.

Have they ruled out shingles?

Funkybird profile image
Funkybird in reply to greygoose

Yep hormones get blamed a lot 🤣

Gosh it’s a minefield isn’t it. Currently, the way I’m feeling, my tinnitus is loud as, I feel weak (like my blood sugar is low), bit dizzy and light headed. Bit anxious and sleeping for England. Had a bit of a sore throat for over a week.

I’ll get the thyroid check through Medichecks

Which test do you recommend please?

medichecks.com/collections/...

Thanks

Ruby1 profile image
Ruby1

Greygoose has filled you in on all you need to know but I thought I would mention, I was started on Levothyroxine because my antibodies were high although my other thyroid results were only borderline. My GP said it’s only going to get worse so let’s give you a small dose.

At the time I was fit but did feel quite tired and washed out. I’d put this down to a busy life, getting older (early 40s) and trying to keep fit. The small dose made a big difference to my energy levels. I was also given iron tablets as I was anaemic so that will also have made a difference to me.

Funkybird profile image
Funkybird in reply to Ruby1

Hi Ruby,

That’s really interesting as I feel light headed a lot, no energy. I’m on HRT which should help with this, that’s why I’m wondering if it is indeed my thyroid as the symptoms are similar to menopause.

As mentioned to Grey Goose I’m going to get a full thyroid test through medichecks and will report back on here.

Thank you so much for your help

SlowDragon profile image
SlowDragonAdministrator

Have you had folate, B12 and vitamin D levels tested yet

If not these need testing

Do you have thyroid test results

TSH, Ft4 and Ft3

Ferritin is deficient

GP should do full iron panel test for anaemia

Meanwhile start increasing iron rich foods in your diet

Are you vegetarian or vegan?

High thyroid antibodies suggests/confirms autoimmune thyroid disease

Request coeliac blood test via GP BEFORE trialing strictly gluten free diet

Funkybird profile image
Funkybird in reply to SlowDragon

Hi,

No I’m not veggie or vegan, I do eat meat including red meat and vegetables.

I had coeliac test in 2020 when I was really ill- came back negative.

I’m going to get all the tests done myself and will report back as I wasn’t given the range. That’s all it said in my letter to GP from hospital TPO antibodies elevated at 242 and told there’s a chance you’ll get thyroid disease in the future.

Interestingly I had my genes tested from a nutrition perspective and my report said my gluten slightly raised, dairy fine, vit b12 gene really good but don’t transport it well, was told take omega 3 for this which I do. Apparently my vitamin A is really good. Vit D receptors are low and vit K not good so I take vitamin D with K2.

I have a very over protective gene which could lead to inflammation as it protects against viral/bacterial infections. Omega 3 would help.

I have heard cutting out gluten can be very beneficial. I do have kefir and Greek yoghurt every day for my gut as gene report also suggested low gut diversity.

The good thing on my gene report was glutathione, I make it in abundance, half the population don’t have it at all.

I went a bit chapter and verse there ha ha, I’ll get thyroid tests done and see where I’m at.

Thank you so much for all the information

SlowDragon profile image
SlowDragonAdministrator

Please add range on TPO antibodies result

Assuming antibodies are high/over range

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

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

Low vitamin levels affect Thyroid hormone working

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

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Regenallotment profile image
Regenallotment

Hey Funkybird,

This sounds familiar (apart from the rashes, poor you) just thought I’d add my lives experience, I went to the GP with symptoms in 2017 and was put on HRT for 3 years, felt gradually worse and last year was having double periods, sleepless nights, post Covid I wasn’t recovering well at all. Different GP arranged full blood tests and showed high antibodies, low (in normal range) B, D Ferratin. What I’ve learned is…. GP need to be pushed a bit to recognise autoimmune (they don’t use Hashimoto’s term at my surgery) but GP does listen when quoting Thyroid UK advice, NICE guidelines, GP doesn’t care about vits if in normal range (but wellness happens at top of range) HRT can impact thyroid and thyroid medication function, I stopped HRT altogether and don’t seem to need it now thyroid meds at 75mcg. Main advice it’s a journey, make small changes, set expectations for optimal treatment in longer timescales than you previously thought, and read everything you can. Izabella Wentz books have been helpful, there are tonnes of podcasts too. gf diet has been transformational. Make notes /diarise. It’s very useful when figuring out what triggered a backward step in feeling well. Wishing you all the very best 🌱🦋🌱

Funkybird profile image
Funkybird

Thank you so much. HRT has definitely helped me with my mood and brain fog as it was affecting my work. I know it’s a balance with HRT and thyroid.

Very interesting what you said. I’m starting with osteopenia too (had a dexa scan last year) and I listened to a nutritionist who has Hashi on a podcast and she said she’s also got osteopenia. She’s managed hers with diet, no gluten, selenium, zinc can’t remember the rest but selenium stood out as one of the main things.

Anyhow I shall get my own comprehensive tests done and take it from there 😊

serenfach profile image
serenfach

Welcome Funkybird - you have already started on the road most of us found ourselves on - taking our own health into our own hands. You are fully entitled to ask your GP for any and all blood tests they have done, going back in time. This may be useful for you to see a change or a pattern. It is free.

Many of us here are on HRT and thyroid drugs, and as long as you take them apart, there is no problem, so dont let them fob you off, if they find you need thyroid support.

I hope you feel better soon. Hug.

Funkybird profile image
Funkybird in reply to serenfach

Thank you, good to know. I fought to get HRT because I researched it thoroughly. This is a whole new area I need to get my head around. It’s quite complex isn’t it.

Ive already noticed my ferritin in 2019 was 60 and this year it was 34 so quite a drop and wondering why that it is. Would be so nice if bloods were discussed more instead of being ‘normal’ what’s normal to one person might not be to another.

I’ll start with some in-depth thyroid tests and take it from there.

Take care 😊

Funkybird profile image
Funkybird in reply to serenfach

Hi again,

I’ve been doing some thinking about HRT as my script is due to be renewed. I’m on 75mcg oestrogen patches and 100 mg of Utrogestan. I’m wondering about lowering my dose as I feel oestrogen levels are high as I’ve had breast tenderness for over a month now despite having a light period a couple of weeks ago. High oestrogen can cause similar symptoms to low oestrogen so it’s difficult. My mood has been low and health anxiety too.

I’ve been on HRT since Dec 2019, it’s been a challenge I felt great on it in 2020 my weight stabilised, but low mood crept back in so I upped dosage 6 months or so ago from 50mcg and I’ve not been great. Coupled with finding out about low ferritin etc.

I think I’m going to ask for a lower dose and if breast tenderness reduces, I’ll know. So difficult.

In meantime, I’m waiting for biotin to leave my system before applying for thyroid tests.

This group is so helpful, but boy have I got a lot to get my head around.

Macp17 profile image
Macp17

Hello, can’t offer any advice as I am also as yet undiagnosed newbie! Just wanted to say how similar your story is to mine; oestopenia diagnosis 5 years ago, eczema so lots rashes and prescribed antihistamine daily, HRT for 2 years but returned to GP as no improvement in symptoms (fatigue and broken sleep every night for last 4 years). Blood tests last month showed thyroid antibodies and low ferritin; prescribed iron tablets and told they’ll redo my bloods in 3 months. Also have hair thinning, nails are ridged and break easily and joint pain. I would really like it if they had trialled me on Levo just to see if it would improve symptoms (especially as my daughter getting married in Oct and would like to feel well for that!) but sadly that’s not an option they suggested. Anyway, just to say you’re not alone and the people on this forum are so helpful; you’re definitely in the right place! 😁

Funkybird profile image
Funkybird in reply to Macp17

Ah thanks, so good to know. Bless you, we just want to know what’s wrong don’t we. I’d been really well until I got to 50 then went downhill, I blamed everything on menopause because all my symptoms were similar.

I had to fight to get HRT, it has helped me but there’s still something not quite right. The rashes were a bit of a shock still none the wiser what caused them. Going to be monitored by GP now for thyroid.

It’s a shame you couldn’t give Levo a try, if it improved things there’s your answer. I do hope you feel well for your daughters wedding.

By the way I take a collagen supplement which helps my hair and nails, it has biotin in it. I’ve seen on here biotin can interfere with thyroid tests which I didn’t know. Very knowledgeable people on here, great forum, very helpful. Thank you for taking time to send me a message 😊👍

Macp17 profile image
Macp17

No worries, just nice to know you’re not alone! And I was the same blaming it all on menopause, like you say most symptoms very similar 😊

Regenallotment profile image
Regenallotment

Coming off HRT for 3 months and starting Levo with slowly introduced increases alongside Vit D, B, Magnesium cream, zinc, gluten dairy sugar soy and alcohol free on top of following Izabella Wentz diet (not to the letter but as a guide) has made a massive difference for me. I hear you on the breast tenderness, mine was awful plus ended up needing counselling from local NHS mental health team as I had clinical anxiety and depression symptoms. Double periods, horrific night sweats. Definitely worth trying reducing/stopping HRT in my experience.

Funkybird profile image
Funkybird in reply to Regenallotment

Thank you. Deffo worth a try 😊

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