Latest test results and advice: For advance... - Thyroid UK

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Latest test results and advice

dizzyarmadillo profile image
8 Replies

For advance information, I am unmedicated and doctor is unwilling to do anything at the moment as I'm only "subclinical". Test was done just after 7am.

2nd December

TSH: 5.52 (0.3 - 4.8)

T4: 12.3 (7.7 - 20.6)

Previously:

9th September TSH: 5.07, T4: 13.4

2nd July TSH: 4.65

May TSH: 5.36, T4: 10.2

March TSH: 5.24, T4: 11.8

I have a telephone appointment with the third doctor since March on Friday next week and need some advice on how to approach it. I'm constantly tired, get more migraines and headaches, muscle and joint pain, I'm constantly cold (particularly hands and feet) and struggle to concentrate (often forgetting words as I'm speaking). Vitamin/iron levels have never been tested. Should I request these too? My TPO levels in 2019 were 506.7

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dizzyarmadillo profile image
dizzyarmadillo
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WeeB profile image
WeeB

Hi, i’m not an expert but if i was you i’d chance your luck and assertively ask the gp to refer you to an endocrinologist about your thyroid. Uk gps are supposed to look at your symptoms and blood tests . and use their instructions for medication as a guide , not a rule . I was left unmedicated for years and labelled borderline and subclinical but with horrible symptoms . after preserverance and explaining to the doctor just how debilitating it was , i finally got a gp who said she would refer me as she didn’t know what to do. The endo put me on levo straight away and said i should have been on it years ago . I have hashimotos . i also have to take multi vits and separate b12 , folate , vit d and magnesium etc because i get very deficient quickly if i don’t take them . Defo ask your gp for full blood tests to check for deficiencies and ask for referral to endo . xxx

dizzyarmadillo profile image
dizzyarmadillo in reply to WeeB

Thanks WeeB, I was unsure about pushing for an endocrinologist referral, but maybe I should 🙈I think I definitely need to push my symptoms, particularly as it's starting to affect my work 🙄

WeeB profile image
WeeB in reply to dizzyarmadillo

If you’re worried you’re overreacting by asking for a referral , you’re not. If you daily life is affected and your work , then you need help. the nhs gps generally think they need to wait till your tsh is at 10 before medication and because most gps aren’t experts of hashimotos or hypothyroid , they err on side of caution and stick to the 10. ( however the gps guidance actually says they should treat everyone individually and take info consideration symptoms and time it has been going on) i was around 5 for 5 years, then around 9.8 for 2 years before finally getting referred and medicated . i ended up going part time at work , went off such a few times , and spent the best part of those years depressed , anxious and exhausted while trying to raise two boys . Your health is important and you deserve to speak to an expert if the gps are a bit unsure what to do . Remember in many other countries they would treat your thyroid if you had symptoms and your tsh was consistently over 3 or 4.

SlowDragon profile image
SlowDragonAdministrator

Was latest test done early morning, ideally around 9am to get highest TSH

High thyroid antibodies confirms autoimmune thyroid disease

Having had two tests with TSH over 5, high thyroid antibodies and symptoms You should be started on levothyroxine NOW

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

Request/politely insist that vitamin D, folate, ferritin and B12 levels tested

plus coeliac blood test too if that wasn’t tested in 2019

What vitamin supplements are you currently taking

dizzyarmadillo profile image
dizzyarmadillo in reply to SlowDragon

Hi SlowDragon, Latest test was 7am, the others were between 8 & 9am.

Thank you for that link. I was never tested for coeliac, but I do get very bloated after bread. My milk intolerance is also getting worse recently.

I do not currently take any supplements.

SlowDragon profile image
SlowDragonAdministrator

suggest before consultation you email in a spreadsheet of your results

Plus tick list of symptoms here

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Plus copy of that flow chart in previous reply

And these NICE guidelines

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.1.1.2 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

also tell GP if there’s any autoimmune diseases in your family

dizzyarmadillo profile image
dizzyarmadillo in reply to SlowDragon

Thank you, that's all fantastic. I'll download all those and make use of them - thank you!

SlowDragon profile image
SlowDragonAdministrator in reply to dizzyarmadillo

Standard starter dose of levothyroxine is 50mcg

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

Test early morning and last dose levothyroxine 24 hours before test

Likely to need further increase in levothyroxine over coming months

Aiming for TSH around 1, most important results are always Ft3 followed by Ft4

Once you have had coeliac blood test done, assuming it’s negative it’s always worth trying strictly gluten free diet

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. 

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's test positive for coeliac, but a further 80% find 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 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.

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