Seeing Endo This Afternoon... : Morning All, I... - Thyroid UK

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Seeing Endo This Afternoon...

Mrs_Walsh profile image
13 Replies

Morning All,

I'm due to see my new endo this afternoon so am just writing up some notes for them and wondering if you think there is anything else I should mention in regards to my thyroid.

My symptoms are mainly fatigue and weakness, slow heartrate and cold/tingling hands and feet.

My bloods from last week were as follows:

TSH - 1.51 (0.25-4.25)

T4 - 14.1 (12-22)

T3 - 4 (3.1-6.8)

TPO Antibodies - 9 (<34)

My iron and vitamin B12 etc unfortunately clotted so they've sent me another test to redo it and my vitamin D was 49 (range for adequate at this lab seems to be 38-62)

I think whatever is going on isn't going to be a simple one thing diagnosis but just wondering whta your thoughts were in terms of results/discussing with endo to exclude thyroid as a cause.

Thanks.

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Mrs_Walsh
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13 Replies
SlowDragon profile image
SlowDragonAdministrator

Did you get TG antibodies tested as well

Was test early morning

Are you based in U.K. if so vitamin D 49nmol

If abroad it will be 49ng/ml

Previous post you said

It will also include iron, B12, Vit D etc (which were all fine at last testing at the beginning of the year anyway).

Can you add vitamin test results from previous test at beginning of year

Mrs_Walsh profile image
Mrs_Walsh in reply toSlowDragon

It was morning and I am UK based - I've double checked and it's definitely in nmol/l as you've said. No TG antibodies - I took the Monitor My Health test so only TPO is included.

I did take the other tests but my blood clotted before they could do them so they've sent me another kit to redo folate/b12/ferritin/HB.

At the beginning of the year:

Vitamin D - 49 again (but was then put on an active vitamin D tablet for phosphate issues and lab said they couldn't retest on NHS for 6 months but I did a lateral flow style test that said it was still in good range)

Iron - 29 (10-50)

Ferritin was 229 when I had my check up post iron infusion (approx 2 months ago) so should be within range now I hope (10-180)

B12 - 346 (200-900) which neurologist signed off as good enough

SlowDragon profile image
SlowDragonAdministrator in reply toMrs_Walsh

So aiming to improve vitamin D to at least over 80nmol

GP could/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 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 when supplementing

Can test via NHS private testing service

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...

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...

Recipe ideas

bbc.co.uk/food/articles/mag...

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 toMrs_Walsh

Next thyroid test suggest you use Medichecks or BH as they test both thyroid antibodies

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

Retest thyroid levels 2-3 months after improving low vitamin D and B12

SlowDragon profile image
SlowDragonAdministrator in reply toMrs_Walsh

B12 - 346 (200-900) which neurologist signed off as good enough

Low B12 symptoms

b12deficiency.info/signs-an...

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

NICE guidelines on B12 and testing

healthunlocked.com/redirect...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

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

Highly effective 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...

Low folate

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 supplements

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

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 can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

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...

helvella.blogspot.com/p/hel...

Mrs_Walsh profile image
Mrs_Walsh in reply toSlowDragon

Thank you!! That's all so useful!!

DippyDame profile image
DippyDame

Your results indicate hypothyroidism/ an underactive thyroid gland.

Why?

Bearing in mind that TSH is not a reliable marker we look at the Frees.... despite what medics claim!

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

We aim to have both Frees roughly approaching 75% through their respective ranges

As you can see your results fall well below that figure

FT4 14.2 (12 - 22)

Result is 21% through the ref range

FT3 4 ( 3.1 -6.8)

Result is 24.32% ditto

Your symptoms underline this, tick them off on the list below and show that to the endo

Medics are supposed to factor in symptoms when diagnosing... rather than relying on labs only

thyroiduk.org/signs-and-sym...

Clearly hypothyroid and requiring replacement thyroid hormone Levothyroxine/T4

Starting dose 50mcg daily to be tested again after 6/8 weeks followed by increase to 75mcg.

Test again after 6/8 weeks...the results will point the way forward

TPO antibodies low but Tg reading also required

Vit D far to low....aim 100 -150 for thyroid patients ( Vit D Council)

Essential to test vit B12, folate and ferritin ...together with vit D they support thyroid function

You cannot exclude an underactive thyroid....is this what you hope to do at this endo appointment?

Given the above facts it should not be a difficult diagnosis for a competent endo.....unless they fail to look beyond TSH.

Mrs_Walsh profile image
Mrs_Walsh in reply toDippyDame

I'm not hoping they exclude it - just expecting them too but want to give them as much as possible to go on so they don't just see TSH and dismiss it as you've mentioned. I'm printing off the list now and will take with me. Thank you so much.

DippyDame profile image
DippyDame in reply toMrs_Walsh

It's a monumental disgrace that they are so badly informed about thyroid disease.....

Use the %ages as well ....they will be wrong if they dismiss them!

Push for thyroid hormone replacement....levothyroxine

With correct hormone replacement you will feel better...but be patient, it will take some time.

Medics are too quick to accept results as " fine" if they are somewhere in the range....that's not the point....they need to be at a point in the range where symptoms are resolved

Good luck!

SlowDragon profile image
SlowDragonAdministrator

With low Ft4 and Ft3 endo could consider a trial on levothyroxine

SlowDragon profile image
SlowDragonAdministrator

Iron - 29 (10-50)

Ferritin was 229 when I had my check up post iron infusion (approx 2 months ago) so should be within range now I hope (10-180)

Any obvious reason for low iron (apart from low thyroid levels)

Are you pre or post menopause

Vegetarian or vegan ?

How long have you had low iron/ferritin

Was this first iron infusion

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Mrs_Walsh profile image
Mrs_Walsh

I think I'd been low iron for most of my life due to previous heavy menstruation and just couldn't get back on top of it with supplementation (not veggie but not eating a lot of meat or iron dense food at that time which has now changed). It was my first infusion and I won't be having another one as I had a bad reaction (which is why I'm at the endo in the first place - it sent me into hypophosphatemia which has now been corrected). I'm 34 so pre-menopause (my mother keeps badgering about menopause but I'm still the most regular I've ever been although they are becoming lighter so I don't think menopause is coming yet)

Mrs_Walsh profile image
Mrs_Walsh

Morning all,

I just wanted to say a thank you for all your advice last week.

The endo appointment was an absolute waste of my time - I went with all issues and symptoms and results plotted out in paper form but she just was not interested in anything but my blood glucose (which I'm having relevant testing for next week anyway so she literally wasted all of our time).

I have since taken the medichecks advanced thyroid test as suggested above and the blood reached them this morning so hopefully those results will be in soon.

I also had some of my remaining results back and my active B12 has dropped again so I'm going to try and get the GP to actually test me for intrinsic factor etc which they didn't want to do in October. I'll wait and see what the medichecks level is first so I'll have three results as evidence that it's barely within range never mind optimum.

Again thanks for all your advice so far and I will update when these new results come in - fingers crossed.

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