30 years of Hypothyroidism NHS 'abnormal' test results

[Lala1705]

Hi all. I was diagnosed with Hypothyroidism at age 23. Over the years since then have also been diagnosed with 7 other immune related serious health conditions, currently fighting NHS GP for referral to Lupus Specialist. Anyway, been going through all my available Thyroid, well TSH NHS results and just discovered every single TSH test was well below range, for 28 years,until I self medicated ( unbeknown to GP) with T3. Under range results were never commented on by GP in all that time. Now, results are in 'normal range' . Should I possibly reduce or stop the 150mcg levothyroxine I've been on for 30 years and see if stable on just T3? As it's that that's obviously made my results 'normal '. Anybody else had a similar experience?

[Fruitandnutcase]

Can’t advise on what to do because I’m in remission from Graves’ disease where I was hyper but has your GP never wondered about the reason for your sudden improvement? I think you seriously need to find yourself another GP.

[Lala1705 in reply to Fruitandnutcase]

Thanks, I moved around all over the UK with work so not same GP all that time, although that means not one single gp has ever followed up. Same practice last 10 years though. Because I've got other more 'impactful ' on paper conditions that entail specialists, the hypothyroidism is played right down, which I've read happens a lot with patients.

[Jaydee1507 Administrator]

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start.

It may well be that you just needed a dose increase or two of levo to feel well if your results were above range for TSH.

Its also highly likely unless you're supplementing that you have low if not deficient vitamin levels from being hypo and under replaced for so long, unless you are already supplementing?

I would recommend involving your GP if your results were over range. Gathering information to take to them and pushing for a dose increase. Many members here have been in a similar situation and had to become their own health advocates.

Most people who feel well on a combination dose of T4 & T3 need their TSH to be below range if not suppressed. Thats just what T3 does, so if yours is only in range then you may not yet be on the right dose.

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsly elevated result and your GP/Endo might change your dose incorrectly as a result.

[Lala1705 in reply to Jaydee1507]

Thank you for your informative reply. I'm a zoology vet Nurse so quite geeky with blood results, have access to all mine but never compared all the TSH results until now, just the T4 and T3 tests I've had, that fluctuate all the time. Also immunoglobulins low end of normal, but am on low dose Prednisone for other immune system problems. I'm a life long vegetarian who has very little dairy, so always taken good supplements of B12, D etc, plus prescribed ferritin now. Also started B12 injections. Will fill my profile in, thanks. Had no idea so many Hypothyroid patients got such short shrift until joined this!

[SlowDragon Administrator]

You say your TSH was well below range …..that’s pretty normal for many people on replacement thyroid hormones…..wether it’s just levothyroxine or levothyroxine plus T3

Most important results are ALWAYS Ft3 followed by Ft4

Also extremely important to maintain GOOD vitamin D, folate, ferritin and B12 levels

What vitamin supplements are you taking

Majority of patients (around 80%?) who take T3 take it as well as levothyroxine. Only a small minority are on T3 only

How much levothyroxine are you taking and how much T3

Do you normally split the T3 as 2 or 3 smaller doses spread through the day

Recommend you get FULL thyroid and vitamin testing

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)

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

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

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[Lala1705 in reply to SlowDragon]

Thank you very much, going to look into this pronto

[SlowDragon Administrator]

As you have Hashimoto’s are you on gluten free and/or dairy free diet?

If not get coeliac blood test via GP before considering trial on strictly gluten free diet for at least 3-6 months

[Lala1705 in reply to SlowDragon]

I do? Not a single GP or endo specialist has ever mentioned Hashimotos..need to research , thanks for the links. Lifelong vegetarian, v low dairy consumption, years of none at all, will look into gluten but don't have any symptoms of coeliacs.

[SlowDragon Administrator in reply to Lala1705]

Good to see you say you are on top of maintaining good vitamin levels

So if not regularly testing and supplementing….on vegetarian diet and with Hashimoto’s…. Likely low B12 and low ferritin

All vegetarians need to keep close eye on all B vitamins, especially B12

And it’s very difficult to maintain GOOD iron and ferritin especially with Hashimoto’s

Test to see what levels are like at least annually

About 50% of Hashimoto’s patients find they need to be dairy free

About 80% gluten-free and further 5% actually coeliac

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.

[Lala1705 in reply to SlowDragon]

Yes, because of lifelong vegetarianism have read a lot about keeping b12,vit D, omegas etc etc up, now have B12 injections as seems to keep levels optimum. Diagnosed with low ferritin so on prescription iron ferritin. Definitely going to get full vitamin screening, thanks again for all your help

[SlowDragon Administrator in reply to Lala1705]

Not a single GP or endo specialist has ever mentioned Hashimotos..

GP’s only call it autoimmune hypothyroid…..and they tend to completely ignore the autoimmune aspect

This is interesting book by Susan Blum

The immune system recovery plan

wob.com/en-gb/books/dr-susa...

Isabella Wentz website and books all excellent

[Lala1705 in reply to SlowDragon]

That book looks fascinating, need to read asap,and the other author, thank you.

[greygoose]

If your TSH has risen - from below-range to in-range - that is not necessarily an improvement. Could be the opposite. But, you cannot tell anything from just the TSH by itself. By itself, the TSH doesn't tell you much once it gets below 1. What is important, if you are taking T3, is the FT3 results: has that gone up or down?

Why do you want to stop the levo anyway? Most people feel best on combination therapy.

[Lala1705 in reply to greygoose]

Thanks. I don't necessarily want to stop the levo, it just quite a high dose to be on for 30 years,with not much improvement, and things improved a lot once added T3 in, just thinking aloud and wondering about everything

[greygoose in reply to Lala1705]

Well, they would improve when you add in T3, wouldn't they. But you don't have to stop levo, just reduce the dose.

[SlowDragon Administrator]

Please consider signing this Government petition for much needed funding for helping to get better testing, treatment and understanding of thyroid disease

Petition started by forward looking, pro T3 U.K. endocrinologist

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