New to the site and looking for help - Thyroid UK

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New to the site and looking for help

GoldenOlly profile image
15 Replies

After feeling constantly exhausted finally diagnosed With hypo June last year my results were. TSH 9.7 (0.3-4.5) FreeT4 13.1 (10-22) and TPO 166 (0-34). Given Levothyroxine 75mg

Which helped with tiredness and in the August my bloods TSH dropped to 1.6. In my annual recheck June this year though My TSH dropped below band to 0.27 (0.3-4.5) and freeT4 Went up to 19.6. I stopped working when lockdown started and began trying to get healthier and feel better by exercising eating healthier but I still feel tired have awful brain fog, and now stiff ankles and feet and pins and needles in both hands Overnight!

Spoken to an endocrinologist and he says the symptoms aren’t related to hypo. But I’m reading online and in forums and it suggests they are!

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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Just testing TSH and Ft4 is completely inadequate

Do you always get same brand of levothyroxine

What vitamin supplements are you currently taking, if any?

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if already know you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels if not been done recently

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

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

List of private testing options

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

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Add any vitamin results you have already

GoldenOlly profile image
GoldenOlly in reply to SlowDragon

Thanks for your speedy reply answers below to your questions...

I did ask my GP to test T3 and he said no, but ahead of my call with the endocrinologist he requested bloods. I wasn’t told why nor have I seen the results but he told me it was Testing my T3, celiac and b12 and folate All of which he said was ok. I am trying to get the actual readings.

I have not changed the brand of Levothyroxine made by Teva UK.

I only started taking bioglan collagen dissolvable tablets as I read they help with joints. No other vitamins.

I stopped these a week ahead of my last blood test which I also had first thing in the morning before medication ( followed advice on forum )

I’ve always had stomach issues with IBS diagnosed 20 plus years ago. Although it has settled down-ish a lot for the last few years.I did Used to eat a lot of food which I noticed more before I started Levothyroxine. I think my body was trying to absorb energy from my food but not getting it due to undiagnosed Hypo which was overloading my stomach. I have never had problems with weight and always been active. I definitely think my gut needs addressing Though. I am pescatarian and eat really healthily I don’t (well can’t )drink alcohol don’t smoke and now exercise a fair amount. I just need to get to the bottom of my health. It’s getting me down and I feel like I don’t know who to ask for help !

SlowDragon profile image
SlowDragonAdministrator in reply to GoldenOlly

So majority of Hashimoto’s patients are not coeliac but are gluten intolerant

The ONLY way to know if that includes you ..is to try it

Your are legally entitled to copies of your blood test results and ranges

Frequently results are at bottom of range....we need optimal

SlowDragon profile image
SlowDragonAdministrator

Hashimoto's frequently 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 are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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

healthcheckshop.co.uk/store...?

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...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

SeasideSusie profile image
SeasideSusieRemembering

GoldenOlly

Welcome to the forum.

You need Free T3 testing, this is the most import result. T3 is the active hormone that every cell in our bodies need, unfortunately this information has bypassed every doctor it would seem. Just testing TSH and FT4 doesn't give the full piciture. If your FT3 is low you will get symptoms - simple as.

Most surgeries can't get FT3 tested so if you want to do what many of us here do, i.e. private test, then we have recommended labs who offer fingerprick tests (some can be done by blood draw if you prefer).

FT3 must always be tested at the same time as TSH and FT4 to give the full picture.

Cheapest basic test is with MonitorMyHealth which is an NHS lab at Exeter Hospital:

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

There is a 10% discount code on that page which you can use and it links to the company. This test is a fingerprick test.

It's always a good idea to check nutrient levels as these need to be optimal for us Hypos. Blue Horizon Premium Gold include these:

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

Discount code on that page and it links to the company. This test can be done by fingerprick or venous blood draw.

Medichecks Thyroid Ultravit with Folate includes everything (similar to Blue Horizon test abobve) but can only be done by venous blood draw which you have to pay extra for:

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

Link on that page. You can check on Thursday to see if it's on special offer.

Come back with results, plus reference ranges, for further help.

GoldenOlly profile image
GoldenOlly in reply to SeasideSusie

Thanks for your help it’s very much appreciated

SlowDragon profile image
SlowDragonAdministrator

Have you only ever had Teva levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva and Aristo are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

GoldenOlly profile image
GoldenOlly in reply to SlowDragon

Thank you so much for the advice i really appreciate it 😀

SlowDragon profile image
SlowDragonAdministrator in reply to GoldenOlly

Come back with new post once you get FULL Thyroid and vitamin testing

SlowDragon profile image
SlowDragonAdministrator

Pins and needles often low B12

Stiff ankles often low vitamin D

Brain fog often improves on strictly gluten free diet (can take many months to notice improvements)

GoldenOlly profile image
GoldenOlly in reply to SlowDragon

I have called the GP and was told over the phone the below

freeT3 4.9 (3.1-6.8)

B12 221 (150-1000)

Calcium 2.29 (2.20-2.60)

Folate 10.1 (2.0-18.8)

Cortisol was also tested but no read given to me

I was told I had been tested for coeliac but today she said I wasn’t !

The results will be uploaded So I will be able to confirm then but she said They had a large backlog.

SlowDragon profile image
SlowDragonAdministrator in reply to GoldenOlly

So B12 is very low ..

On levothyroxine we frequently need serum B12 at least over 500

Suggest you start supplementing a daily good quality vitamin b complex ....one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will improve B12 levels

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

Your Low calcium suggests low vitamin D is likely

You can test vitamin D here - £29 NHS postal kit

vitamindtest.org.uk

SlowDragon profile image
SlowDragonAdministrator in reply to GoldenOlly

You need TSH, Ft4 and Ft3 tested together

Was this Ft3 done in June with the results you gave above?

June

TSH 0.27 (0.3-4.5)

FT4 19.6. (Need ranges)

Ft3 4.9 (3..1-6.8)

48% through range....perhaps not high enough for you

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

GoldenOlly profile image
GoldenOlly in reply to SlowDragon

No the FT3 was done along with the B12, calcium etc which was about 2 weeks ago at the request of the endocrinologist. The GP wouldn’t test me for T3 so I’ve not had them all done together. I will ask him to test all but I doubt they will...

The range for the FT4 was 10-22

Thanks again

SlowDragon profile image
SlowDragonAdministrator in reply to GoldenOlly

So Ft4 was 80% through range

Come back with new post once you get vitamin D results

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