Test results help please : Hi all. Sorry for the... - Thyroid UK

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Test results help please

Mum24 profile image
31 Replies

Hi all. Sorry for the long post. I have had blood tests and would like some advice. One GP suggested B12 injection as B12 is low end of normal ( I have chronic gastritis so absorption of oral B12 is prob not great) but was overruled by another GP. I’ve said I believe B12 Vit D and ferritin needs to be higher but was told by GP that’s not true. Can you look at my results and let me know what you think please ? Dyou have any suggestions for what I need to do to help myself ? And maybe point me in direction of any studies I can show GP to put my case

Serum Free T3. 5.7. ( 4.2-6.9)

Serum Free T4 12.9 (7.7-20.6)

Serum TSH 0.10 (0.30-4.80)

Haemoglobin 131 (120-150)

Ferritin 16.3 (11.0-307.0)

Folate 4.59 (3-20.0)

Serum B12 212 (145-914)

Serum vitamin D 52 ( >50 sufficiency/<50 insufficiency)

If you’ve got this far Thank you.

I have Hashimotos I take 125 mcg Levothyroxine and 10mcg Liothyronine daily

31 Replies
Regenallotment profile image
Regenallotment

Hi! I’m sure you will have lots of replies and advice from people with more experience than me but here a a few observations and lived experiences to get you going.

Did they test antibodies ? Do you know if you have Hashimoto’s? Common to have gut related issues and poor absorption of vitamins from diet.

Are you already taking Levothyroxine or other medications?

Had you taken any medication or supplements on the day of the test?

Was it a morning appointment? TSH is highest in the morning.

I’ve had GPs tell me my insufficient Vit D is fine and ignore it. But the reality is 14 weeks on 4000iu vit D with K2 MK 7 oral spray (following expert advice here from Seaside Susie and SlowDragon, Greygoose and Helvella and many more ) has made me feel so much better gone from 47 to 75 so I’ll do another 12 weeks and hopefully get it over 100. As has taking 1 capsule of Thorne Basic B complex. Eating liver once a week.

Optimal vits is in the upper end of the ranges is quite a different life experience than being at the bottom end.

Do you already know your food intolerances? Giving up gluten, soy, maize starch, sulphites, dairy, most alcohol, and processed sugar, also no GF breads. Has resolved my gut issues. Along with having L Glutamine amino acids morning and night (repairs mucus layer in small intestine) I’ve also treated myself for parasites, SIBO symptoms with black seed oil and probiotics, plus H Pylori with saccromyces boulardii.

wishing you well, I’ve been where you are and by following the advice given closely, taking things slowly, accepting I was quite poorly and voicing this with family really helped me get on top of it, have agency with the GP and own my recovery. Highly recommend Izabella Wentz books if you do have Hashi’s the auto immune diet was transformative. 🦋💚🦋

Mum24 profile image
Mum24 in reply to Regenallotment

thank you for your reply. Yes I have Hashimotos. Lots of good advice there for me to look into.

Regenallotment profile image
Regenallotment in reply to Mum24

one of slowdragons golden nuggets of wisdom was to only introduce one supplement at a time, two weeks apart. That way you can figure out what is or isn’t suiting you.

For excluding diet my approach followed Dr IW which is exclude everything for 2 weeks, then try 1 reintroduction every 3 days. Spelt toast gave me back pain, nausea and the runs, milk gave me horrendous IBS wind too and bottom, sulphites was joint pain, flu feeling etc. it has taken months of trial and error, do it slowly as if you barrel into all at once you’ll have no clue what is causing which.

Has your GP prescribed any medication for you? Are you already taking Levo? T3? NDT?How many mcg and for how long?

So many questions 🦋💚🦋

Mum24 profile image
Mum24 in reply to Regenallotment

hi. I edited the post as I realised I hadn’t put that I have Hashimotos and take 125mcg Levothyroxine and 10mcg Liothyronine.

Regenallotment profile image
Regenallotment in reply to Mum24

ah ok that explains your T3 being in the upper end of the range.

What time was your blood test ? and what protocol/routine did you follow before hand? Eg early morning appointment, fasting blood test Levo 24 hours before, Lio (not sure is it 8 hours?) I don’t take T3 so someone more experienced will need to jump in there.

Mum24 profile image
Mum24 in reply to Regenallotment

blood test was lunchtime. Was told no need to fast and meds had been taken 4 hours before

Regenallotment profile image
Regenallotment in reply to Mum24

ah … you may need to re-do following the guidelines recommended. I’ll try and find a link and re-post it for you.

Mum24 profile image
Mum24 in reply to Regenallotment

ah Thanks. I don’t think my GP will retest , it took a bit of a battle to get the blood tests I had 😊

Lupusrelative profile image
Lupusrelative in reply to Mum24

all test results look good

Fizzyinch profile image
Fizzyinch in reply to Regenallotment

amazed at your progress! How did you find out about the infections and parasites and how to treat?

Regenallotment profile image
Regenallotment in reply to Fizzyinch

so reading Dr Izabella Wentz I was ticking a lot of boxes, then did an online quiz on one of the testing sites that was really long and detailed which suggested SIBO. As a family we’ve had threadworm before so just bought over the course OVEX, that sorted the itchy bottom (along with going GF), TMI? 🤣 then read about H.Pylori and ticked all those boxes so have done a round of probiotics S. Boulardii it’s a fungus that promotes good bacteria, I read up on what happens when the bad bacteria/gut biota exit and die off, and definitely experienced it, but it was over quite soon. Black seed oil was recommended. Obvs you can send off poo samples for expensive testing but we have a limited budget so £20 in probiotics and £5 to work us all seemed fine by comparison. Hope that helps 🦋💚🦋

terebol profile image
terebol

Will, only, comment on B12 - Late winter my B12 was -like yours-@the bottom of the range. I started on sublingual methylcobalamin (1000 mcg) 1x/daily. w/in 3mos I was up 200pts I increased daily dose to 2000/day and w/in 4mos I was 59pts above the high range. Sublingual bypasses the gastric juices. I sprinkled the tiniest amount of sugar under my tongue w/the B12 to aide the tablets dissolving. Hope this helps!

Mum24 profile image
Mum24 in reply to terebol

thank you

Jaydee1507 profile image
Jaydee1507

What is it you're looking for help with? The B12 or thyroid or both? What symptoms have brought you here?

If you have Hashi's and gastritis have you ever eliminated gluten? Dairy and soy also affect some of us.

Looking at your vitamin results, they are all pretty poor. Has GP commented on the ferritin? Have they done an iron panel?

Before you start B supplements you really need to sort out if you can get injections of B12 on the NHS. I would be pushing for that if it were me. I assume you have a lot of fatigue?

I'll let someone else comment o your thyroid results but likely an increase might help you.

Mum24 profile image
Mum24 in reply to Jaydee1507

Hi. Thank you for your reply. I don’t honestly know what help I’m looking for. I feel my results are ‘off’ but I’m hitting a brick wall when I talk to my GP. I’m exhausted and at my wits end I’m being made to feel by my GP that my results are fine and I don’t need to increase B12/D / ferritin etc. i feel I do but not sure how best to do it. GP have refused B12 injections but I’m happy to pay to have private injection , I guess I just need confirmation that I’m right in thinking my B12/D/ ferritin are too low and then advise on how to increase them as quickly as possible. Thank you for listening to me waffling 😊

Jaydee1507 profile image
Jaydee1507 in reply to Mum24

Oh you're definitely right that your B12, D, ferritin and folate are all absolutely not good enough. Way too low and you will be experiencing symptoms from each of them. I don't have all the fancy quotes from NICE recommended guidelines but pretty sure ferritin under 30 is concidered deficient. No idea what your GP is going on about saying it's fine. It's really not at all.

Have you tried raising ferritin? People here recommend chicken liver pate a few times a week, eating liver too.

For B vitamins you can but a good B complex - Thorne Basic B which has all the B's you need, even if you pay for a B12 jab. That will make sure the B12 works well if you get that complex, also contains folate.

For vit D there's a calculator to work out how much you need to take to get to the level you want. Yours is only just sufficient is you need to aim higher than that. If taking vit D then buy one that also has K2 with it as that helps it absorb.

grassrootshealth.net/projec...

SlowDragon profile image
SlowDragonAdministrator

blood test was lunchtime. Was told no need to fast and meds had been taken 4 hours before

So first step is to get thyroid levels retested correctly

ALWAYS test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Day before test split T3 into 2 x 5mcg and take last 5mcg dose approx 8-12 hours before test

Cheapest option is to use Monitor My Health

£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/

come back with new post once you get results

Do you always get same brand levothyroxine at each prescription

Which brand of levothyroxine

Which brand of T3/

Do you normally split your T3 as 2 x 5mcg per day?

Only do private testing early Monday or Tuesday morning. Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

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...

SlowDragon profile image
SlowDragonAdministrator

Meanwhile……start working on terrible vitamin levels

What vitamin supplements are you currently taking?

Only add one new supplement at a time …..then wait at least 10-14 days to assess any changes before adding another ….that way you can see if something is helpful or not

Optimal vitamin levels are

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

Serum B12 at least over 500

Active B12 over 70

Folate and ferritin at least half way through range

So you can see all need a lot of improvement

Have you had coeliac blood test done yet via GP ……if not request this is done BEFORE considering trial on strictly gluten free diet

Mum24 profile image
Mum24 in reply to SlowDragon

thank you for your reply. And all of the links And all of the info. I think Coeliac test has been done but no results yet. Thank you for the reassurance that my vitamin results are terrible , that’s what I thought. I will look at all the links and the private testing

SlowDragon profile image
SlowDragonAdministrator in reply to Mum24

GP’s are generally completely clueless that thyroid and gut are connected

Gluten free diet helps thousands of Hashi patients

If you do test positive for coeliac you need to remain on high gluten diet until endoscopy….officially 6 weeks wait

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 

Assuming test is negative you can immediately go on strictly gluten free diet 

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.

SlowDragon profile image
SlowDragonAdministrator

Suggest you start by working on low vitamin D

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 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. 

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

Suggest you start on 3000iu per day and retest in 2-3 months…..you may need higher dose …..

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...

Great article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Look at adding magnesium supplement couple of weeks after start Vitamin D

Vitamin K2 mk7 is added to Better You vitamin D spray

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

Have you had testing via GP for Pernicious Anaemia

If not try to get this done BEFORE considering adding vitamin B complex and a separate B12

But if GP can’t/won’t or your left to have to self supplement

Two weeks After adding magnesium

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) 

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 and continue separate B12

Low B12 symptoms 

b12deficiency.info/signs-an...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

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

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...

How other member saw how effective improving low B vitamins has been 

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

presumably you are under an endocrinologist, if prescribed liothyronine

NHS or private?

Is this 5mcg tablets or 10mcg tablets…..or capsules?

Do you normally take levothyroxine waking or bedtime?

Or have you tried splitting levothyroxine into two doses, half waking and half at bedtime?

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)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test 

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

Mum24 profile image
Mum24 in reply to SlowDragon

thank you. A lot to take in. Not under endocrinologist anymore as discharged due to being ‘clinically euthyroid’ he originally prescribed liothyronine as I don’t Apparantly convert T4 to T3 well ( hope that’s right way round) my GP emailed consultant to ask re B12 and consultant replied B12 has nothing to do with thyroid 🤦🏻‍♀️

SlowDragon profile image
SlowDragonAdministrator in reply to Mum24

yep…..even many endocrinologist don’t understand the connection

You look like you are under medicated or poor absorption

Ft4 low….and would be lower if did test correctly

Getting vitamin levels optimal and trialing strictly gluten free diet next steps to improve absorption

Which brand of levothyroxine are you currently taking

you may need liquid levothyroxine. Gives much better absorption for some patients. Would have to be initiated by endocrinologist…..because it’s expensive at £100 per bottle (lasts about a month)

Going to take a few months to improve low vitamin levels and get diet sorted

Then likely to see improvements

academic.oup.com/edrv/artic...

Come back with new post once you get Monitor My Health test results done for thyroid

Approx how much do you weigh in kilo?

SlowDragon profile image
SlowDragonAdministrator

Lastly low ferritin

Are you pre or post menopause

Vegetarian or vegan

Request/insist GP do full iron panel test for anaemia

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

An article that explains why Low ferritin and low thyroid levels are often linked 

preventmiscarriage.com/iron...

 

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.

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...

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...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Here’s absolutely excellent reply by humanbean

on iron and ferritin panel test results for another member 

(suggest you read the many replies by Humanbean on iron and ferritin )

healthunlocked.com/thyroidu...

Good explanations of iron 

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

Helpful info on iron infusion and supplements 

healthunlocked.com/thyroidu...

Excellent reply by Blearyeyed about iron in this post

healthunlocked.com/thyroidu...

csj113 profile image
csj113

hi, you’ve had a wealth of info so just wanted to add - my Ferritin was same as yours and I went to a private haematologist who told me <50 is low and <30 is a severe deficiency. I had an iron infusion and I feel 100% better (fatigue, joint pain, nails, hair all better).

waveylines profile image
waveylines

May I just add.....in addition to all the great advice above that it is really important the cause of your low b12 level is established. Has your GP done an Intrinsic Factor test? This tests for PA. Whilst this test only picks up 58% of PA (meaning you can still have PA if neg) it is a definitive yes for PA if positive. This neans b12 jabs are vital. Not supplements as they won't be absorbed. Its vital this test is done BEFORE taking b12 supplements. Your GP can do this test.

In addition if you have neurological symptoms your GP should not delay the start of alternate day b12 jabs even if they plan to refer you to a neurologist. This is because permenant damage can occur if left. The window of time is short.

Neurological symptoms are wide and varied but common ones are : blurred double vision, tingling in linbs, weakness, a sense of something crawling on your skin, tremors, poor memory, problems processing, poor balance, poor cordination or sense of robotic feel when walking and incontinence.

Look on B12d.org for a full symptom checker and advice.

The first GP was correct to want to initiate b12 jabs. I would write to the Practise manager and complain. State your case, include your list of symptoms. Point out the recommendations that b12 jabs must not be delayed when neurological symptoms are present even if b12 levels are low but in range. These jabs should be alternate days for as long as it takes for you to recover....for many this can be years.....before moving across to a maintenance dose.

Request your ketter is put on yohr nedical file. They eont like this as it makes them liable for danage if they refuse to treat.

I would've suggested that you look at self injecting if all of this fails but sadly the routes to purchase have been closed by our government. Why? I really dont know but under a new law limiting strength of vitamin supplements sold in the uk, the gov has banned the purchase of b12 vials here and from abroad. This is causing severe distress in the b12 deficiency community as many people had resorted to supplementing their nhs b12 jabs as they've found them not frequent enough.

Mum24 profile image
Mum24 in reply to waveylines

thank you so much. I have been given so much good information on here. And am putting it together along with links to NICE guidelines to show my GP.

Polaris profile image
Polaris in reply to waveylines

Hi waveylines. Re. last paragraph, re. ban on purchasing vials of B12 from abroad, I’ve just freaked out - is this a new ruling and do you have any more information, as I don’t think the HU PA forum are aware of it?

Cornwaller profile image
Cornwaller

agree with post above.

Suggest you check out your symptoms as detailed in B12d.org. Your b12 levels are low and your symptoms should be checked and a diagnosis made.

If this indicates b12 deficiency ask for an urgent appointment as the GP should immediately start b12 shots as detailed in NICE protocol. Ideally these should start within days.

Once the above has established that you either fine re b12 or are recieving b12 shots then you can start to deal with the other issues. B12 should be dealt with promptly as long term damage can occur if left untreated .

I think it quite likely you are deficient in b12 and are certainly at risk of becoming deficient.

B12 deficiency is common in people with hypothyroidism and as the wonderful Dr Skinner observed, where there is one autoimmune condition look for another.

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