Can I ask for advice please ... - Thyroid UK

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Can I ask for advice please

Rubytuesday53 profile image
17 Replies

Hi all, I've been reading many posts since my Rheumatoid Arthritis diagnoses in 2020 and have found invaluable information on many topics and been very impressed by the supportive outlook everyone has.

So thought I'd ask for some advice as I'm seeing my GP tomorrow, I was told I have subclinical hypothyroidism in Jan 2023 but was informed that no treatment was required at this point and in fact the gp (seeing different one tomorrow) was quite dismissive.

When having my last blood test in May 2023 I followed the advice found on here although I'm not on any medication for thyroid issues i.e test no later than 9am etc, other previous tests done later in the morning.

Sorry for my first, very long post but I've struggling to understand what my results mean and what to ask my GP tomorrow. Can anyone help please?

I hope it's easy to follow, I've started with the first blood test that showed an issue and added subsequent tests in chronological order.

06 Jul 2022

Thyroid function test

Result Abnormal

What you need to do Need to repeat test Specimen

Serum free T4 level 14.8 pmol/L [11.0 - 23.0]

Serum TSH level 4.9 mU/L [0.27 - 4.5]; Outside reference range ____________________________

16 Nov 2022

Thyroid function test TSH remains elevated. TPO antibodies may be helpful-to follow on this sample.

Serum free T4 level 15.9 pmol/L [11.0 - 23.0]

Serum TSH level 8.6 mU/L [0.27 - 4.5]; Outside reference range

Serum thyroid peroxidase antibody concentration 9 IU/mL [< 34.0]

__________________________

05 Jan 2023

Serum total 25-hydroxy vitamin D level 46 nmol/L;

Vitamin D:Levels <25 nmol/L suggest deficiency.

Levels between 25 and 50 nmol/L suggest insufficiency.

A previous blood test ordered by my Rheumatolgist in 2022 showed a Vitamin D deficiency for which I was prescribed which helped and so now I take a supplement.

________________________

05 Jan 2023

Blood haematinic levels

Serum vitamin B12 level 226 ng/L [197.0 - 771.0]

Serum folate level > 20.0 ug/L [2.0 - 18.7]; Outside reference range

Serum ferritin level 42.9 ug/L [20.0 - 260.0]

______________________

Report Date: 04 May 2023

Thyroid function test

Serum free T4 level 14.1 pmol/L [11.0 - 23.0]

Serum TSH level 6.1 mU/L [0.27 - 4.5]; Outside reference range

Thank you for reading this far and welcome any advise on discussion with my GP tomorrow.

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Rubytuesday53
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17 Replies
SovietSong profile image
SovietSong

TSH needs to be nearer 1 and t4 needs to be in upper quadrant.Both of your readings are nowhere near.My TSH was 8.04 and I felt awful.Im below 1 currently.Be firm with the GP don't let them fob you off with painkillers or antidepressants.Most GP's mine included only take action if the TSH is over 10 or so(ludicrous)They should listen more to patients symptoms rather than just read from a computer screen.Good luck with your Docs appointment.

Rubytuesday53 profile image
Rubytuesday53 in reply toSovietSong

Thank you SovietSong, I agree that drs often don't listen but work almost from a script!

SlowDragon profile image
SlowDragonAdministrator

Please see post above yours

Virtually same situation

healthunlocked.com/thyroidu...

You have already had two tests with TSH over 5 you should be starting on trial of levothyroxine

You need BOTH TPO and TG antibodies tested

NHS won’t test TG antibodies as your TPO antibodies are negative

Will have to test privately via Medichecks or Blue Horizon

Vitamin levels too low

What vitamin supplements are you currently taking?

Serum total 25-hydroxy vitamin D level 46 nmol/L

Optimal level at least over 80nmol

Serum vitamin B12 level 226 ng/L [197.0 - 771.0]

Serum B12 at least over 500

Active B12 over 70

Serum ferritin level 42.9 ug/L [20.0 - 260.0]

Ferritin at least over 70

Rubytuesday53 profile image
Rubytuesday53 in reply toSlowDragon

Thank you for all your comments and advice, it's so much easier to understand here!

I've been taking:

Vitamin D3 25ug (1000iul) recommended by local pharmacy and Pink Tribe Liposomal Vitamin B complex for over 2 months, I stopped the vit b several days before the last blood test.

I have several issues going on so it's confusing to know what is causing what! Hopefully I'll be clearer after seeing the GP later this morning.

I am reluctant to take any more medication as I take many meds for the RA and other issues but I want to feel well again! Quite overwhelmed at times with all the health challenges over the past 3 years!

Will look to have private blood tests to monitor and follow improvement in vitamin levels.

SlowDragon profile image
SlowDragonAdministrator in reply toRubytuesday53

So how long have you been taking just 1000iu vitamin D

Suggest you change to vitamin D mouth spray and increase to 3000iu per day

Retest in 2-3 months

B12 very low especially considering you have been supplementing

You definitely need separate B12 as well as daily vitamin B complex

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

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

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Rubytuesday53 profile image
Rubytuesday53 in reply toSlowDragon

Hi I've been taking Vit D for at least 9 months as my Rheumatolgist picked it up from the regular blood tests I have due to the Rheumatoid Arthritis. Thank you for the links to Vit B etc, I'll definitely look to purchase them. Do you have a recommendation for Vit D spray, can be so hard knowing what's a good source.

I've been a vegetarian since the 70's so that's probably a indicator for the deficiency.

SlowDragon profile image
SlowDragonAdministrator in reply toRubytuesday53

Vitamin D

How low was vitamin D before you started supplementing

with vitamin D below 50nmol…..GP should prescribe 1600iu everyday for 6 months

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

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 autoimmune disease, 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.

One spray = 1000iu

Link here

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

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

Try 2 or 3 sprays per day ……retest in 2-4 months

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, assuming you eventually get levothyroxine prescribed

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...

SlowDragon profile image
SlowDragonAdministrator in reply toRubytuesday53

As vegetarian you should always be taking a separate B12 daily as well as vitamin B complex

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

Low B12 symptoms

b12deficiency.info/signs-an...

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

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 several times a week

B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

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

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

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

healthline.com/nutrition/fo...

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-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

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 folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply toRubytuesday53

Very difficult to maintain adequate iron and ferritin on vegetarian diet

Suggest you get full iron panel test done ideally via GP

But privately if GP unhelpful

Never supplement iron without doing full iron panel test for anaemia first

Then retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron

Medichecks iron panel test

Test early morning and only water between waking and test. Stop iron supplements 5 days before test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

Eating iron rich foods like 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...

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

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

healthunlocked.com/thyroidu...

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...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

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. ‘

Rubytuesday53 profile image
Rubytuesday53 in reply toSlowDragon

Wow lots of useful information to read/listen too, one of the articles described almost exactly symptoms I have been experiencing "fatigue, brain fog, muscle and joint pains, weight gain, headache, dyspnea, ....... Over time, the patients have often received a spectrum of diagnoses and corresponding treatments: subclinical hypothyroidism, fibromyalgia etc."

I will get a full iron panel test done, if GP unwilling then I'll use one of the suggested links.

I saw the GP yesterday who was very good and listened to my concerns. We discussed best way forward and decided to improve vitamin levels and re test in six months especially as last TSH had decreased, I'm happy to do this especially after reading the articles you shared Slowdragon and Tattybogle plus all the other advice given by others.

It was encouraging to be listened to and see that she understood my frustration at the change in my life due to health issues, she was very supportive.

Thank you all being responding to my concerns, I do feel more in control and have a better understanding of the way forward.

tattybogle profile image
tattybogle

Hi Rubytuesday ,

When TSH is over range but under 10, and T4 is in range ( 'sub clinical' hypothyroidism) then NHS guidelines say GP's ' can consider' treatment with levothyroxine . the requiirements are:

2 over range TSH results, taken 3 months apart. (to show its not a self resolving issue)

and

Symptoms of hypothyroidism.

The decision whether to treat 'sub clinical' hypothyroidism or not , is dependant on whether symptoms of hypothyroidism are causing you any problems or not .

(if thyroid peroxidase antibodies (TPOab) are over range ,this helps convince them to start levo as it shows treatment is likely to become necessary at some point anyway.... but raised antibodies are not a requirement for starting levo).

The fact that you do not have positive thyroid antibodies , and that your latest TSH is a bit lower than the last one may make the GP a bit more cautious about starting levo.

negative TPOab does not totally rule out autoimmune hypothyroidism , some only have TGab, but NHS don't usually test those, (and a few autoimmune cases don't have either sort)

nice.org.uk/guidance/ng145/...

"1.5 Managing and monitoring subclinical hypothyroidism

Tests for people with confirmed subclinical hypothyroidism

Adults

1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.

Treating subclinical hypothyroidism

1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism.

If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."

tattybogle profile image
tattybogle in reply totattybogle

p.s just noticed the bit about 'adults under 65' yrs old in the guideline.....it depends on the attitude of the individual GP, but your age could be used as a reason to not give you levo unless your TSH goes over 10.

Rubytuesday53 profile image
Rubytuesday53 in reply totattybogle

Thanks Tattybogle very useful and helpful information. I will be 70 in August so understand drs reluctant to prescribe and am happy not to be but to be monitored as I'm on many other meds as said previously, just want to feel well again even if just a bit and have the GP listen to me. At my last appointment he wrote in my notes that he'd asked me certain questions and examined me when in fact he never did and didn't even look at me just looked at the computer screen! It's frustrating to say the least. Hopefully the female GP I'm seeing later will actually listen and maybe even look at me!! 😁

Gingernut44 profile image
Gingernut44

If that’s what he has written on your notes you must refute them otherwise they get away Scot free and will happily do it again. Can you take someone with you to your next appointment? That will make it harder for your GP to dismiss your symptoms.

Rubytuesday53 profile image
Rubytuesday53

Can I ask for interpretation of the iron panel blood test I've had done following advice on this forum please. Thank you.

Iron panel test results
Jaydee1507 profile image
Jaydee1507Administrator in reply toRubytuesday53

Recommend starting a new post for these results.

Also, you have replied to yourself so noone would get a notification of your post here.

Rubytuesday53 profile image
Rubytuesday53 in reply toJaydee1507

Oh dear, new to posting! I'll try again. Thank you.

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