Newly diagnosed : Hi Everyone, I was recently... - Thyroid UK

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Readbecgar profile image
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Hi Everyone,

I was recently diagnosed in March with UAT due to an autoimmune disease- I’m assuming Hasimoto should I be referred to see an endocrinologist via NHS now? I’m currently on 100mg levothyroxine and folic acid due to low serum folate. Most days I feel drained, lightheaded/ fuzzy headed/ headaches and really hot I don’t know what to do or say to doctors anymore. I don’t currently have a print out of all results but will ask next time I’m in doctors is this where I get it from? Last time I had bloods due to headaches and dizziness I had low serum folate. Also should I push for a scan on neck as I have a goitre that they are aware of and have noticed 2 more fatty lumps.

Any advice would be happily welcome 🙏

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Readbecgar
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greygoose profile image
greygoose

Hi Readbecgar, welcome to the forum. :)

It's not usual to see an endo for Hashi's - aka Autoimmune Thyroiditis. It's considered simple enough to be handled by a GP. We all know that that is not always true, but that's what they think. Besides, endos very often know less about thyroid than GPs because they are mostly diabestes specialists.

Folic acid is not the best form of folate to take, but doctors - who know nothing about nutrients - prescribe it because it is the cheapest. You'd probably be better off with a B complex containing at least 400 mcg methylfolate, because the Bs all work together and need to be kept balanced.

If you were only diagnosed in March, it's not surprising that you still have symptoms. 100 mcg is not a high dose and you probably need an increase. Were you put on 100 straight away? Not always a good idea. When are you due your next labs.

When you go back to the surgery, ask the receptionist for a print-out, not the doctor. Doctors often don't like us knowing our results because then we can't argue or contradict them! But, it is your legal right to have a copy.

Goitres do go with Hashi's. That is one of the symptoms. It might be a good idea to get a scan, but doctors don't always agree and are reluctant to spend the money! But, ask anyway, and see what they say. :)

Readbecgar profile image
Readbecgar in reply togreygoose

Hi Greygoose,

Thank you for your reply I’m not sure if I’m on folic acid as I’m currently breast feeding - seems my UAT has happened since delivery. No originally I was on 50mg but upped due to feeling dizzy etc. My recent blood test came bk with a slight peak last week I can’t remember which one he said but he said either they can reduce to 75mg and alternate or wait 6 weeks and do again. I went for the 6 weeks as wasn’t aware should not take before bloods. X

greygoose profile image
greygoose in reply toReadbecgar

Sorry, I don't understand. You're not sure if you're on folic acid? Why aren't you sure?

Post partum is the time when a lot of women develop Hashi's, possibly due to the complete upheaval of hormones.

Going from 50 to 100 mcg is too big an increase in one go. It shouldn't be more than 25 mcg every six weeks, because more can make things worse, rather than better.

As doctors only test TSH and possibly FT4, it was probably FT4 he was talking about. But, yes, that would be high if you take your levo before the blood draw. There should be a gap of 24 hours between the last dose and the blood draw. Was your blood draw before 9 am?

Readbecgar profile image
Readbecgar in reply togreygoose

sorry greygoose I think I’m on folic acid as I’m breast feeding and it safe for baby. My bloods were take. At 9:45am. When I go back in 6 weeks I will not take my meds before and see what happens.

greygoose profile image
greygoose in reply toReadbecgar

I don't think that there's a problem with taking methylfolate when breast feeding. No, doctors always prescribe folic acid to everyone because it's cheaper than methylfolate.

SlowDragon profile image
SlowDragonAdministrator

Request GP test full iron panel test for anaemia including ferritin

Also Vitamin D and B12

Have you had coeliac blood test

GP should do this at diagnosis of Hashimoto’s

ALWAYS test thyroid early morning, ideally around 9am, only drink water between waking and test….and last dose levothyroxine 24 hours before test

Take delayed dose after test

Readbecgar profile image
Readbecgar in reply toSlowDragon

thank you I will mention these tests on Thursday.

SlowDragon profile image
SlowDragonAdministrator in reply toReadbecgar

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

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

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

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 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 5-6 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

Hashimoto’s and leaky gut often occur together

Readbecgar profile image
Readbecgar in reply toSlowDragon

thank you SlowDragon will defo mention Thursday

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