Advanced Thyroid Test Results - Any advice please! - Thyroid UK

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Advanced Thyroid Test Results - Any advice please!

ginid profile image
19 Replies

Hello everyone,

I decided to have a private thyroid test as over the last few years I have shown some signs of both hyperthyroidism (unexplained weight loss a few years ago)but have since put weight on .I would mention I am 52 so menopausal .

I have had a few blood tests in the past to look at thyroid and readings have been variable -

TSH was as high as 5.14 in 2014 and then 4.74 in 2016 and then 3.04 in 2018

free T4 11.5 in 2014,12.5 in 2016 and 12 in 2018

Have shown recently mostly symptoms of Hypo - dry flaky skin,some hair loss on shins, GERD, brain fog, very heavy period until Mirena coil fitted, quite tired a lot,increased weight around the middle, also all the melanin on my arms started gradually disappearing about 2 years ago-initially looked very patchy like vitiligo but no patches now just very white skin on both arms-strange! so I opted to get an advanced thyroid test privately to include antibodies tests and free T3 too and Vitamin D, B12 and ferritin and folate.

The results were :-

Ferritin - 60 ug/L (range13 to 150)

Folate - 5.3 ug/L (range >2)

Vitamin B12 - 77pmol/L (range 25.1 to 165)

Vitamin D - 55nmol/L - (range 50 to 200 is considered normal so is on lowside but no considered defficient!)

Thyroid Hormones:-

TSH - 4.98 mlU/L (range 0.27 to 4.2)so quite high.

Free T3 - 4.7pmol/L (range 3.1 to 6.8)

Free Thyroxine - 12.6 pmol/L(range 12 to 22)

Autoimmunity:-

Thyroglobulin Antibodies - 187.0 IU/ml range 0 to 115) so quite high

Thyroid Peroxidase Antibodies - 17.7 IU/ml (range 0 to 34)

I am sure if I show the doc they will just suggest a review in a year or so and suggest it is sub clinical hypothyroidism.

I am concerned about the thyroglobulin antibodies being quite high and the high TSH (although the highest TSH reading was 5.7 in 2014

A doctor told me that up to 25%of people with normal thyroid function will test positive for thyroid antibodies and that they won't necessarily go on to develop thyroid disease.

I would be very grateful if anyone can offer any advice on these readings!!

Maybe I am just best to re test in a year?!

Thank you so much in advance

Gina

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19 Replies
Lalatoot profile image
Lalatoot

You need to start on levothyroxine. The antibodies tell you you have autoimmune thyroiditis often referred to as hashimotos.The TSH above range shows your thyroid is struggling. The bottom of range ft4 confirms this .

If you search for hashimotos you will find a lot to read. Best to learn as much as you can as not all doctors are well versed in treatment.

ginid profile image
ginid in reply toLalatoot

Thank you for your reply.I have thought for a few years that it might be Hashimoto's hence why I decided to get the advanced blood test. The strange thing is that even back in 2014 I had a TSH reading of 5.7 but the doctor did not suggest any treatment! I think I only found out what I know through the great community on Health Unlocked and doing my own research.Thank you so much for taking the time to reply.

Mountaineer67 profile image
Mountaineer67

Are you on HRT? The symptoms described are also down to perimenopause so with the blood results you have it looks like you need to discuss both with your GP

ginid profile image
ginid in reply toMountaineer67

I am not currently on HRT partly due to all the scares regarding possible links to breast cancer over the last 10 years or so.However,just recently I have become aware of Dr Louise Newson on menopausedoctor.co.uk who has mentioned yam derived hormone replacement and I am not so anti HRT now. I think I have an issue with both menopause and autoimmune thyroiditis given my high TG antibodies too. I think a trip to the doctor is called for!

Thank you so much for taking the time to reply.

SlowDragon profile image
SlowDragonAdministrator

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

Your results show you are now hypothyroid and should be started on levothyroxine

But you might struggle to get GP to agree

Especially as NHS currently doesn’t acknowledge just high TG antibodies as confirming autoimmune thyroid disease (hashimoto’s)

pubmed.ncbi.nlm.nih.gov/303...

Elevated TgAb levels are associated with symptom burden in HT patients, suggesting a role of thyroid autoimmunity in clinical manifestations of HT. Based on these results, we recommend screening for TgAb antibodies in HT patients with symptom burden

First step is to improve low vitamin levels as low vitamin levels tend to lower TSH

Improving low vitamin levels will also improve symptoms

Also recommend getting coeliac blood test done before trialing strictly gluten free diet

Was this test done as early as possible in morning before eating or drinking anything other than water?

This helps get highest TSH

Suggest working on improving low vitamin levels and then retest again in 2-3 months

See flow charts on here

gp-update.co.uk/Latest-Upda...

ginid profile image
ginid in reply toSlowDragon

Thank you your reply.

I will visit my doctor to discuss both HRT and Levo although I imagine I might have a bit of a battle as my TSH is not near 10!

I was wondering if I should start by increasing my Vitamin D levels.I have read some good articles on this site about the best Vitamin D etc

Do you think that I should get my Vit D levels up and then have another Advanced Thyroid test say in 6 months to a year to see if TSH gone down?

I did have blood test for coeliac a couple of years ago but that showed no issues .

I did the test at1 0.30am but unfortunately I had had somep orridge about 2 hours before.I did read that it was best to do the test as early as poss in the morning and early in the week but did not read that it should be on an empty stomach. Too late now!

Thanks for the flowcharts- these are useful.

I really appreciate your reply and wonder what your thoughts are about reviewing after6/12 months of taking Vit D before trying Levo?

SlowDragon profile image
SlowDragonAdministrator in reply toginid

Suggest you look at flow charts again

If TSH is more than 5 and Ft4 is low, plus symptoms a trial of levothyroxine can be started

Negative coeliac test doesn’t rule out gluten intolerance

Only 5% Hashimoto’s patients are coeliac, but around 86% in total find strictly gluten free diet helps or is essential

If no obvious improvement, reintroduce gluten 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.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

Why gluten intolerance can upset cortisol levels

kalishinstitute.com/blog/gl...

ginid profile image
ginid in reply toSlowDragon

Thanks for this info.I did consider trying to exclude gluten at one point but I love bread.I guess I have nothing to lose by trying and it might even help to lose some of the weight around my middle.Regarding the flow charts I wondered about my reading being 4.98 but I guess that is as near as damn it to 5!

SlowDragon profile image
SlowDragonAdministrator in reply toginid

If test wasn’t done as early as possible in morning before eating or drinking anything other than water…..TSH would have been higher

SlowDragon profile image
SlowDragonAdministrator in reply toginid

vitamin D, folate and ferritin need improving

Aiming for

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate and ferritin at least half way through range

Looking at increasing iron rich foods in diet to increase ferritin . Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

ginid profile image
ginid in reply toSlowDragon

Thanks for this. I imagined that as my ferritin and folate were within range that they were ok. Interesting that ferritin reading of below 80 can make Hashimotos patients feel worse.I guess taking B9 supplement which I understand to be be folate will help too.

ginid profile image
ginid in reply toginid

Sorry,I have just read your further posts re B vitamins. Thank you so much for all this useful information.I will take it all on board. You have been very helpful

SlowDragon profile image
SlowDragonAdministrator in reply toginid

Better to take a good quality vitamin B complex that keeps all b vitamins in balance

SlowDragon profile image
SlowDragonAdministrator in reply toginid

vitamin D, folate and ferritin all need improving

Aiming for

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate and ferritin at least half way through range

Ferritin

Looking at increasing iron rich foods in diet to increase ferritin . Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

SlowDragon profile image
SlowDragonAdministrator in reply toginid

Vitamin D GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

Vitamin D and Covid

Notice how much vitamin D many of these medics are taking

vitamind4all.org/letter.pdf

SlowDragon profile image
SlowDragonAdministrator in reply toginid

Low folate supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

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

Difference between folate and folic acid

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

Thorne Basic B is an option that contain folate, but is large capsule. You can tip powder out if can’t swallow capsule

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)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Only start one supplement at a time and then wait at least 2 weeks to assess results before starting another

tattybogle profile image
tattybogle

It is 'allowed' for NHS GP's to treat with Levo before TSH gets to 10. NICE guidelines for diagnosing and treating sub clinical hypothyroidism say;

if TSH is over range repeat after 3 months ... if 2 x TSH results the are over range but under 10... then even if fT4 is in range , if the patient has symptoms of hypothyroidism .. they "MAY offer a trial of Levo to see if getting TSH back into range improves symptoms."

Note * This bit of the guidelines does not mention any need for a positive TPOab antibodies result before offering treatment. (They do accept that having them makes it more likely you will eventually become overtly hypo.. but you don't have to have them before they can treat 'over-range but under 10' TSH ....if they want to. )

So you may have to wait 3 months for a repeat test (if the 2018 'in-range' TSH was your last one) ... but since latest TSH is over range you shouldn't have to wait for a year .. however they may not be able to accept this private one .. if they can't, ask them to do their own now to confirm.. and MAKE SURE to do it early AM, without breakfast.. even if this means waiting weeks for a blood draw at the right time....because if they get a TSH that is just within range again .. they are off the hook and can tell you to go away again for a year.

(TSH naturally fall's to it's lowest around 1/2 pm ish, so the earlier, the better ~ 8/9 am)

When speaking to GP you should emphasise how very low in range your fT4 is.

Many people with TSH results that are only just over-range still have quite a decent amount of fT4.... but you clearly don't . This might help persuade them that offering Levo may help.

I will find you a link to the NICE guidelines in a bit .... after i've had a coffee.

tattybogle profile image
tattybogle in reply totattybogle

NICE guidelines as promised ... sorry i forgot yesterday ;) nice.org.uk/guidance/ng145

Don't worry about the eating .. it makes sense to do test before breakfast in future ..just in case/every little helps , but in reality ,Time of Day is more influential on TSH than whether or not you'd eaten.. (the research about it being lower after eating was always a bit 'sketchy' .... they tested , then gave them breakfast and re tested , and said "it's lower after eating" .... but by then it was later in the morning so it would have been lower anyway.. Doh ! )

The real problem we need to avoid is getting TSH done around lunchtime /early afternoon ish when it's lowest.... there are statistics showing less people get diagnosed if they are tested in the afternoon.

TSH is actually highest in the middle of the night.. but of course the NHS can't take blood then.. but it's worth making sure the blood is taken before 9 am ish.. even if you have to wit a few weeks to get the early appointment.

ginid profile image
ginid

Thank you very much for your post.It makes for very interesting reading. I feel that I will be more prepared for the doctor now! I wish I had not eaten before my test as it might have shown a higher TSH level!

I really appreciate you taking the time to reply. Enjoy your coffee!

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