Interesting link!: restartmed.com/anti-tpo/ Hi I... - Thyroid UK

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Interesting link!

SunnyK profile image
7 Replies

restartmed.com/anti-tpo/

Hi

I have come across this post and I feel it indicates that I am at risk of hashimotos according to my results, history and symptoms.

I feel the root cause is my gut, malabsorption etc as I already have celiac disease. 3 years ago I had a large goiter removed with half my thyroid. I remember feeling like I had energy after the op but now it feels like deja vu! I've got the same chronic constipation which has caused another fissure (last one was sorted with surgery the same year as thyroid), low in vitamins and folate amongst others.

The thing is my peroxidase and thyroid tests are normal so I'm not getting any help with it or even an investigation like a scan.

Annoyingly when I had the goiter only my tsh was tested which was normal at 1.5. I wonder if my peroxidase would have shown up at this point. The only thing I've got is a description of what was in my thyroid goiter. Which means nothing to me. I fear I've got to continue with the symptoms again until my other side of thyroid is going to be attacked.

As I'm already on a gluten free diet I think this has helped my peroxidase and I avoid all artificial sweeteners etc. I've ordered an intolerance test too.

I wish I could check my thyroid and I hope I don't have to have the other half removed. It's really hard to get through to doctors. My last doctor told me to eat bran flakes for my constipation. Even after telling him they were not gf he continued to tell me to put something on top. I switched off at this point.

Sorry for my rant. I've booked counselling because I need someone to talk to. It's really hard and I feel like a hypochondriac.

I know all you guys have been through this and it's amazing that we've got this site. I've also signed all the petitions. Good luck guys and hope you find the link beneficial.

S

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SunnyK
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MrWellness94 profile image
MrWellness94

Hello SunnyK,

I have actually found that website before and it has tremendous amounts of information that make sense. The are things in there that are discussed in this forum. I think that people who are recently diagnosed or think might be suffering from hypothyroidism should have a look at the link. Thanks for sharing!

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test FT4 and FT3 plus vitamins

Apparently at least 20% with Hashimoto's never have high antibodies

You can be negative for high TPO and still have high TG antibodies

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or both TPO and TG antibodies

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. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

Magnesium supplements can help improve constipation

Common to be low in magnesium when coeliac and with Hashimoto's

glutenfreesociety.org/glute...

Low vitamin D and low magnesium go together too

scdlifestyle.com/2012/07/wh...

Also low B12 and low iron common with both

coeliac.org.uk/healthcare-p...

SunnyK profile image
SunnyK in reply toSlowDragon

Thanks Slow Dragon.

You were very informative on my first post too. Very grateful.

My struggle is to get some clarification on this. I've had full thyroid screening and I'm coming up in range but closely linked to subclinical hypothyroid. My peroxidase was 27.2 >34 so this didn't come up as an issue. I feel like I'm at risk and need proper support and my gut looking into so I don't get worse and worse.

I have private doctor who did private tests and is now giving me b12 injections and folate as nhs gp wouldn't. Not even folate even though I was below range. Apparently 2.1 isn't low enough for anaemia so I just went with it. B12 was borderline and mma came back as 1.8 which is the grey borderline area again. I'm also taking vit D which was also low at 30.

I am so symptomatic and everything points to that diagnosis with the root cause being my gut.

I've emailed Dionne for thyroid specialists and just waiting to hear back. I feel like my neck is swollen again and ive got the middle crease around my neck like last time but I just really feel like a hypochondriac so I haven't mentioned it. I suspect it will get big enough again to then be significant so I will just give it a month or so and see if anything happens as I really do feel like a bother. Unless I can see a specialist I can trust I'm not going to persue it as I just get my confidence and spirit knocked down and feel worse.

Thanks for the links.

Just keep swimming as they say.

S

SlowDragon profile image
SlowDragonAdministrator in reply toSunnyK

I think support for coeliac patients is dire. Obviously malabsorption and low vitamins are extremely common, yet they don't seem to consider, test or prescribe at all.

When I was first diagnosed as severely gluten intolerant, they sent me for DNA test for coeliac as couldn't believe I wasn't coeliac. DNA test came back as also probably negative. Apparently it's not always clear result!

(had tested negative twice on coeliac blood test)

I saw a specialist coeliac dietitian at this appointment. She seemed to know absolutely nothing about low vitamin levels and was astonished I supplement for anything at all.

More on my profile

Personally I was extremely deficient in magnesium, vitamin D and all B vitamins. Vitamin C helpful too. Also take zinc and omega 3 and occasionally vitamin A if not eaten liver for a while

SunnyK profile image
SunnyK in reply toSlowDragon

I know all that sounds like me.

I'll take a look at your profile.

Trying to through working atm. Extremely hard and impossible to help employer understand.

Many Thanks

S

sianbarn profile image
sianbarn

I take Magnesium citrate at night , & now I don’t suffer at all from constipation.

I hope this helps.

Best wishes🤗

SunnyK profile image
SunnyK in reply tosianbarn

Thanks sianbarn,

I take magnesium because I'm low anyway. I also take cascara but it's just a losing battle.

Thanks for taking the time to share

S

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