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new here recent diagnosis!

Sunsetlovr65 profile image
8 Replies

hi I’ve just joined this site for a sense of understanding and community I have a couple of questions that I didn’t ask my nurse yesterday and hoped someone could answer them please.

I am just wondering if this condition means my son will have it? Also if it affects life insurance policies and is life expectancy reduced?

I hope these questions are okay to ask. Thank you

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Sunsetlovr65 profile image
Sunsetlovr65
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SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

No having hypothyroidism doesn’t affect your life expectancy

It doesn’t affect life assurance

Males are much less likely to develop hypothyroidism than females.

But it’s a good idea to test close family if they display any hypo symptoms

Presumably your hypothyroidism is autoimmune, usually diagnosed by high TPO and/or high TG antibodies or by ultrasound scan of your thyroid

Autoimmune thyroid disease often starts after hormonal changes, eg after pregnancy

what were your thyroid and vitamin results at diagnosis

How much levothyroxine have you started on

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

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

Sunsetlovr65 profile image
Sunsetlovr65 in reply toSlowDragon

wow. Thanks so much for your reply it’s so informative. What age can close relatives be tested?

Yes they said mines is autoimmune and it was actually high after my son was born but has dropped. I’m unsure of exact levels thank you so much for your response

tattybogle profile image
tattybogle in reply toSunsetlovr65

newborns have a TSH test routinely ( it's part of the heel prick test). to rule out congenital hypothyroidism .

of course that doesn't rule out the possibility of him developing hypo due to autoimmune disease at some later point in his life . (it's MUCH less likely to appear in male's though)

You can't tell in advance if someone is going to get autoimmune thyroid disease until they have it... strictly speaking it's not 'hereditary' ... there is a strong familial link , but that's all .

with autoimmune hypo , it's common to go a bit hyper first before slowly going hypo . This hyper phase is usually self limiting and the T4 / t3 levels are not as high as when caused by Graves disease.

in graves disease ( autoimmune hyperthyroidism) the thyroid is continually being asked to make too much thyroid hormone, whereas in early autoimmune hypothyroidism , the (temporary) high thyroid hormone level is due to the release of some pre formed T4/T3 leaking out of the thyroid when it is being damaged) but then ....as a result of this damage,, the thyroid is no longer able to make enough , and you go hypo.

Sunsetlovr65 profile image
Sunsetlovr65 in reply totattybogle

Thank you will the levothyroxine just slow damage down?

tattybogle profile image
tattybogle in reply toSunsetlovr65

no ... there is no ( medical) treatment available to slow the autoimmune damage.

levothyroxine is just replacement T4 (replacing the T4 that the damaged thyroid can no longer make enough of ) It has no direct effect on the autoimmune process.

Sunsetlovr65 profile image
Sunsetlovr65 in reply totattybogle

What does the autoimmune damage mean? Like in my future? Will it cause me to be ill more often etc?

tattybogle profile image
tattybogle in reply toSunsetlovr65

That ship has already sailed ......a significant degree of thyroid damage has already happened .. that is why your thyroid was no longer capable of producing enough T4/T3 for your needs.

in future , yes more damage is very likely to happen.... it's an ongoing process, but once it is already damaged enough to need levo. , well , if it gets damaged further , it doesn't really change anything.

In theory , your dose of levo may need to be increased if thyroid ever becomes completely caput .. but in practice , taking replacement T4 more or less shuts down our thyroid anyway. (TSH controls thyroid output .. if we take a dose of levo that lowers TSH enough then the thyroid is then not being 'asked' to make any T4/T3)

Taking replacement T4 doesn't exactly 'top up' low T4/T3 levels .. it more or less 'replaces' them due to the control of thyroid hormone production by the HPT axis(Hypothalamus /Pituitary /Thyroid) .

Some people with autoimmune hypo will get further 'hyper swings' occasionally ( T4/T3 being dumped into blood from damaged thyroid) , necessitating more frequent fiddling around with their dose and confusing their GP's..... but this is not a problem for everyone , it's just something to bear in mind when your blood results don't seem to make any sense.

SlowDragon profile image
SlowDragonAdministrator

So as your hypothyroidism is autoimmune GP should test vitamin levels and do coeliac blood test at diagnosis

If not been done request they are included at next test

Hashimoto's 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.

A trial of strictly gluten free diet is always worth doing but get coeliac blood test FIRST

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

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.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

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