First Post on Thyroid: Hi everyone Hope you are... - Thyroid UK

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First Post on Thyroid

Awwy profile image
Awwy
31 Replies

Hi everyone

Hope you are all well. I had a full thyroid panel in April 2021. My thyroid peroxidase antibody level came back as >1000 IU/ml.

The rest of results were with range.

T3,t4 and TSH.

I was referred to a thyroid specialist who i had a telephone consultation with and diagnosed with hypothyroidism. He said he will write to GP and ask them to monitor TSH levels.

The GP has been doing a TSH test only and not a full panel.

My fatigue and weight gain have been really high. I also have Lupus and stage 4 endometriosis. In a medical menopause for 2 years awaiting hysterectomy.

Please see below results of TSH over a year. I have finally convinced my GP to do a full panel as they previously refused. Waiting for results.

See attached. What other questions should I be asking?

Thank you kindly.

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Awwy profile image
Awwy
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31 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group.

It's unlikely your GP will do a full panel as all labs now refuse to do an FT3 test and not many even an FT4, hence we all buy tests from private labs.

Results being within the range are not good enough and we need OPTIMAL results whcih usually means upper part of the reference range.

Other things to look at would be key vitamin levels. As hypo people we don't absorb vitamins well so need to keep on top of ferritin, folate, B12 and D3. Levels need to be supplemented until 70% of the reference range.

Many people feel well when their TSH is under 1, but not everyone.

Awwy profile image
Awwy in reply toJaydee1507

Hi Jaydee1507

Thank you for your response.

Both my b12 and D were very low have taken supplements.

My last test result of B12 was 168 ng/l.

My last test for D was 59.5 nmol/L.

(As I am from an asain background this is always low for me so take a vit D ampuole).

My serum ferritin is currently at 29 ug/L. I did have an iron transfusion last year as it was extremely low.

Which are the best labs to get a private test from?

As my labs are just within range GP says I'm fine. But my body is telling me NO.

Thank you kindly for your advice. Still trying to understand about how thyroid works. 💜

Jaydee1507 profile image
Jaydee1507Administrator in reply toAwwy

Are you vegetarian/vegan? Just wondering why your B12 was so low.

OPTIMAL ferritin for your thyroid hormone to work properly is around 90-100 so you have a way to go with that. Low ferritin alone will make you feel unwell with symptoms at levels under 75. Its recommended to eat food sources of iron such as chicken livers or pate, difficult if vegetarian.

Cheapest for private testing is monitor my health with a finger prick test. I use Medichecks as need a blood draw but more expensive.

You could push for a dose increase. I'm sure others will come along with all the right quotes to show your GP. If one refuses, try another at the same practice.

Awwy profile image
Awwy in reply toJaydee1507

HiNo im not vegan. I eat chicken. Eat a lot of raw spinach. Take vit c supplements.

Not a fan of red meat I eat occasionally. My cholesterol is very high. Which im surprised at as I have given up most dairy products and all joys of life 😅. (Biscuits cakes etc...)

Was diagnosed with something called fredrickson type iia hyperlipoproteinemia. GP said not my fault it genetic and predisposes me to higher cholesterol.

🤦🏽‍♀️🤷🏽‍♀️

Thank you will look in those tests. 💜

Jaydee1507 profile image
Jaydee1507Administrator in reply toAwwy

It would pay you to eat red meat more often or you will be permanently iron deficient and suffering. That and eating chicken liver pate a few times a week would really help you feel better.

High cholesterol is also a feature of undermedicated hypothyroidism so getting your levels a bit better would help that too.

SlowDragon profile image
SlowDragonAdministrator in reply toAwwy

Was diagnosed with something called fredrickson type iia hyperlipoproteinemia. GP said not my fault it genetic and predisposes me to higher cholesterol.

Far more likely that your high cholesterol is directly linked to your hypothyroidism

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

Was test done early morning, ideally around 9am

High thyroid antibodies confirms autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s. But here in U.K. medics generally only call it hypothyroidism and would look blank if you said “Hashimoto’s “

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

My last test result of B12 was 168 ng/l.

My last test for D was 59.5 nmol/L.

My serum ferritin is currently at 29 ug/L.

I did have an iron transfusion last year as it was extremely low.

Are you vegetarian or vegan?

With such extremely low B12 levels you need testing for Pernicious Anaemia before starting on B12 injections or daily B12 supplements

 

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

Ferritin is deficient

You need full iron panel test for anaemia.

Vitamin D dose needs increasing

Also need coeliac blood test done and folate level tested

Awwy profile image
Awwy in reply toSlowDragon

Hi

I have been screened for coeliac. I am not.

I asked GP to check for Pernicious Anaemia and they said I dont have it.

My B12 according to them is within normal range now.

I am not vegan. I eat chicken and have eggs etc...

They did a scan of my thyroid and said it looked fine. I don't have a goitre..

I am with a gastroenterology only just been referred as I have swallow/reflux issues.

🤦🏽‍♀️

SlowDragon profile image
SlowDragonAdministrator in reply toAwwy

What’s the range on B12 test result (figures in brackets after result) ….usually 180-780 approx

Awwy profile image
Awwy in reply toSlowDragon

Hi - does this help?

Picture of graph showing b12 levels
SlowDragon profile image
SlowDragonAdministrator in reply toAwwy

yes

Vitamin B12  168 ng/L (150 - 620) 

So your B12 is just 3.8% through range

But GP thinks it adequate

Still low B12 is easy to improve with supplements yourself

This is NOT down to poor diet…..your hypothyroidism is causing low stomach acid and poor nutrient absorption and low vitamin levels are the RESULT

See my separate reply on low B12

Have you had folate levels tested?

SlowDragon profile image
SlowDragonAdministrator in reply toAwwy

Acid reflux is extremely common HYPOTHYROID symptom and will improve once you get started on levothyroxine/improve terrible vitamin levels/likely to need to be gluten free as well

Medics incorrectly tend to assume it’s high acid….

Low stomach acid can be a common hypothyroid issue

Thousands of posts on here about low stomach acid 

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism 

nutritionjersey.com/high-or...

stopthethyroidmadness.com/s...

thyroidpharmacist.com/artic...

 How to test your stomach acid levels 

healthygut.com/articles/3-t...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

But never assume you have low stomach acid 

healthygut.com/4-common-bet...

Awwy profile image
Awwy in reply toSlowDragon

I never knew this at all! I have just done a 24 hour ambulatory impedance and pH test. Ordered by the gastroenterologist. Waiting results. I also have a very dry throat sore throat. I never linked the 2.

SlowDragon profile image
SlowDragonAdministrator in reply toAwwy

Nor do 99% of GP’s

Hypothyroidism is extremely common disease……about 2 million people in U.K. on levothyroxine

(Estimates suggest another 1-2 million probably should be diagnosed)

About 90% are female

Yet so many GP’s are clueless on how to diagnose and manage this

Or the interconnection between gut and thyroid and low vitamin levels

With such low vitamin levels at moment your thyroid test results may (unfortunately) still look “normal “

But hopefully will show you need starting on levothyroxine NOW

Working on improving vitamin levels and addressing diet is ESSENTIAL

SlowDragon profile image
SlowDragonAdministrator

What’s GP doing about deficient Ferritin levels?

Have you had new iron panel test done?

Are you pre or post menopause?

Heavy periods are classic sign of being hypothyroid and will lead to low iron and ferritin

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Also See page 7 on here 

rcn.org.uk/-/media/royal-co...

Look at increasing iron rich foods in diet 

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.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron 

healthline.com/nutrition/he...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

Low Iron implicated in hypothyroidism 

healthunlocked.com/thyroidu...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

Awwy profile image
Awwy in reply toSlowDragon

I am in a medical menopause. On 10 weekly injections of zoladex with add back HRT Tibilone. I am waiting for a hysterectomy. Been 2 years. GP just said everything with the numbers they expect. Prior to this my periods were extremely heavy. I have had 3 iron transfusions. Last one was over a year ago.

SlowDragon profile image
SlowDragonAdministrator in reply toAwwy

Get GP to do iron panel test for anaemia as next step

If they won’t

Get tested via Medichecks

Then members can advise if you can take iron supplements or not

SlowDragon profile image
SlowDragonAdministrator

It’s ESSENTIAL to maintain all four vitamins at GOOD levels

Low vitamin levels are result of being hypothyroid

And low vitamin levels tend to lower TSH ……making it harder to get diagnosed/correctly treated for your autoimmune hypothyroidism

Looking to keep vitamin levels optimal by supplementing

Vitamin D at least over 80nmol and between 100-125nmol may be better

Serum B12 at least over 500 (NHS test)

Active B12 at least over 70 (private testing)

Folate and ferritin at least over half way through range

Ferritin ideally around 100

NHS only tests for and treats vitamin deficiencies

Many, many U.K. patients forced to test and self supplement to maintain OPTIMAL Levels

Awwy profile image
Awwy in reply toSlowDragon

Looks like I have got a lot of reading to do. Thank you so much for the resources. I can take these and have a proper conversation. My folate level i finally found had to back several pages.

Graph of levels
SlowDragon profile image
SlowDragonAdministrator in reply toAwwy

So Folate is also too low

Next steps

Only add one supplement at a time or make one change at a time and wait at least 2 weeks to assess before moving to next step

1) start B12 supplement

Wait at least 2 weeks before

2) adding separate vitamin B complex

increase your vitamin D now

3) add separate magnesium supplement in evening

Meanwhile from GP need iron panel test done

And await thyroid results

SlowDragon profile image
SlowDragonAdministrator

How much vitamin D are you currently taking

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some 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 100nmol to 125nmol 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. 

One spray = 1000iu

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

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

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

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

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...

Interesting article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Awwy profile image
Awwy in reply toSlowDragon

Vit D I am taking as part of a supplement called Oesteocare. I only added that because of being in menopause and worried about my bones.

Screenshot of what's in it
SlowDragon profile image
SlowDragonAdministrator in reply toAwwy

That’s not enough for a poorly mouse

Suggest you buy some Better You vitamin D mouth spray with vitamin K2

One spray is 1000iu

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

Take 2 sprays per day and retest vitamin D yourself in 2-3 months

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

Awwy profile image
Awwy in reply toSlowDragon

🤣😂 I am realising this after reading the information you have kindly posted Thank you so much. 💜

GP won't start me on levothyroxine as say my TSH panel is within range. Its been a long battle.

SlowDragon profile image
SlowDragonAdministrator in reply toAwwy

Let’s see what new test thyroid results show next week

If not high enough to start on levothyroxine

Spend next 6-8 weeks improving all four vitamins

INSIST GP do full iron panel test as likely to need iron supplements

Then retest thyroid levels …..ideally via GP or organise yourself

cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies which you already know are high) 

monitormyhealth.org.uk/full...

Only do private testing early Monday or Tuesday morning, between 8-9am…..ideally only drink water before test and have breakfast after

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Gut, Hashimoto’s and food intolerances

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. 

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 

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.

Awwy profile image
Awwy in reply toSlowDragon

I tried gluten free diet for 6 months. Didnt notice any difference. I changed my milk to almond again didnt notice much difference. Think I need to re-look at my whole diet after reading some of these articles. My weight had done this. The dip you see is when I went down to 800 calories a day. I currently eat no more than 1500 but my weight is still climbing. 🤨😪

Chart of weight
SlowDragon profile image
SlowDragonAdministrator in reply toAwwy

Work on improving really terrible vitamin levels

Get started on replacement thyroid hormones

Then retry gluten free/dairy free

Calorie restriction not a good idea

We need plenty of protein, good fats and some low levels of carbs (generally avoid beige carbs ….bread, pasta, cakes etc)

Carbs in veg and fruit good

SlowDragon profile image
SlowDragonAdministrator

Forgot to add …..B12 and folate

Unbelievable that GP is not treating such low B12. So down to you to improve

Have you had folate levels tested?

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

B12 drops 

amazon.co.uk/s?k=b12+drops&...

Or

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

once your serum B12 is over 500 (or Active B12 level has reached 70), reduce the separate B12 ……and just carry on with the B Complex. You may be able to stop separate B12 or may need to add 2-3 times a week

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

Note that improving folate when B12 is very low is not a good idea. Taking folate before B12 is good enough can lead to severe neurological problems.

en.wikipedia.org/wiki/Subac...

It is vital if you intend to supplement both B12 and folate that B12 is started a week before the folate.

Low folate and vitamin B complex

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

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 recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20 

If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement

amazon.co.uk/Yipmai-Liposom...

or available as Vitablossom brand here

hempoutlet.co.uk/vitablosso... &description=true

Or as Vitamin B complex drops

amazon.co.uk/Yipmai-Liposom...

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...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

SlowDragon profile image
SlowDragonAdministrator

Lupus and endometriosis and Hashimoto’s are all interconnected too

endometriosis

preventmiscarriage.com/endo...

Lupus

healthmatch.io/hashimotos-d...

Hashimoto’s can be misdiagnosed as Lupus or you can have both

palomahealth.com/learn/lupu...

The butterfly rash can be Hashimoto’s……not necessarily Lupus

SlowDragon profile image
SlowDragonAdministrator

This is useful tool for working out where within range results are

thyroid.chingkerrs.online/

Current vitamin levels

Folate - Serum 4.7 ug/L (3.1 - 19.9) 9.5%

Vitamin B12 (active) 168 nmol/L (150 - 620) 3.8%

Vitamin D 59.5 nmol/L (75 - 150) -20.7%

Ferritin 29 ug/L (30 - 150) -0.8%

So at next vitamin test in 2-3 months looking for at least this sort of improvement

Folate - Serum 15 ug/L (3.1 - 19.9) 70.8%

Vitamin B12 (active) 500 nmol/L (150 - 620) 74.5%

Vitamin D 90 nmol/L (75 - 150) 20.0%

Ferritin 70 ug/L (30 - 150) 33.3%

Ferritin is the one that takes longest to correct

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