Antibody blood test: Hello I hope everyone is... - Thyroid UK

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Antibody blood test

Nattycake profile image
9 Replies

Hello

I hope everyone is well.

I was diagnosed with hashimotos about 9 weeks ago and have been on levothyroxine 50mg, blood test due at 12 weeks. Have also been taking vit d and ferroglobin. I have awful upper back, neck and foot pain. Currently under physio. Doctor did blood tests for rheumatoid arthritis this was negative but positive for anti nuclear antibody and titre Is 320 which it says is normal and staining is nucleolar which again says its normal? I have a follow up appointment with gp in two weeks but I was just wondering if anyone has experienced this with hashimotos or if it's likely I've got another autoimmune going on. Thank you 😊

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Nattycake
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9 Replies
Regenallotment profile image
Regenallotment

yes, I had all those pains, it took me a year or more to titrate up to the correct dose for me and to heal the inflammation and 3 years on it’s easier to manage but o have to consider my health in all aspects of life.

Highly recommend reading Izabella Wentz books,

Highly recommend private testing of full thyroid panel TSH FT4 and FT3 vits and minerals alongside GP tests. Post results here and follow the amazing advice you will receive.

Rest rest rest and be gentle with yourself, eat good food, have a look at my ridiculously over sharing bio for parallels.

Ps pain between shoulder blades for me is grain related, spelt, rye, wheat, barley all do it. Ask GP to do coeliac test to rule out before you give it up 🌱

Nattycake profile image
Nattycake in reply to Regenallotment

Thank you for your reply. I am negative for coeliac :)

SlowDragon profile image
SlowDragonAdministrator

50mcg is only the standard STARTER dose

Bloods should be retested 6-8 weeks after each dose change

Waiting 12 weeks is cruel

What were Thyroid and vitamin results at diagnosis

How much vitamin D are you taking

Is iron prescribed by GP

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with Hashimoto’s

Have you had B12 and folate levels tested yet? If not get these included at next test

Plus you will need coeliac blood test if not tested yet

Book retest for early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

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...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

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

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

which brand is your 50mcg tablet

Ideally don’t change brand when dose is increased to 75mcg daily

Only change one thing at a time…..dose or brand

Nattycake profile image
Nattycake in reply to SlowDragon

Hello

Yes, it doesn't seem right waiting 12 weeks I actually feel worse!

B12 was 445 (187-883)

Ferritin 19 (20-204)

Flolate 4.2 (3.1-20.5)

Vit d 39.9 (50-150)

I have been taking vit d 3000 + K2

Ferroglobin capsules

Nothing given by GP

I have bad feet and shoulder blade/muscle pain which GP said likely due to posture, got worse over last few months. Has ruled out RA but ANA positive with nucleolar pattern and 320 titre so not sure If I've also got something else going on!

SlowDragon profile image
SlowDragonAdministrator in reply to Nattycake

Ferritin 19 (20-204)

Vit d 39.9 (50-150)

Nothing given by GP

Ferritin deficient and GP obligated to run full iron panel and treat your anaemia

Similarly vitamin D insufficient and GP should have prescribed 1600iu daily for 6 months…..though you are better off self supplementing at higher dose

Are you also taking daily magnesium in afternoon or evening (at least 4 hours away from levothyroxine)

SlowDragon profile image
SlowDragonAdministrator in reply to Nattycake

B12 was 445 (187-883)

Folate 4.2 (3.1-20.5)

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...

SlowDragon profile image
SlowDragonAdministrator

Foot pain is usually plantar fasciitis, extremely common when under medicated for thyroid and/or low vitamin D

Other posts that mention plantar fasciitis

healthunlocked.com/search/p...

This should improve as dose Levo is slowly increased over coming months

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Some people need a bit less than guidelines, some a bit more

NICE guidelines on full replacement dose

Though many/most of us, especially with Hashimoto’s need to start on 50mcg, but still important to increase dose until on full replacement dose

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

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

Nattycake profile image
Nattycake in reply to SlowDragon

Thank you 😊 I don't think it's plantar fasciitis as I've had that before and this is the tops of my feet mainly. Will be interesting to see what next blood test says

Trina profile image
Trina

Hi Natty

I went through Physio back in 2013 along with Hydrocortison injections neither worked for me as the pain was very intense, however everyone is different and it may help you keep your chin up and let us know how you get on.

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