New here: Help with interpreting results pls - Thyroid UK

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New here: Help with interpreting results pls

prussianblue538 profile image
6 Replies

Hi everyone,

I'm new here and I am wondering if anyone could help me interpret my latest results. I had a test done with Thriva earlier this week and GP is unwilling to help me. I saw a private endocrinologist who dismissed my symptoms in October and November, saying that I'm not ill enough to be treated. Symptoms are classic hypothyroidism, struggle with malabsorption and painfully long periods.

Mum, grandma, auntie and sister have thyroid disease and they're being treated. Other women relatives on both mum's and dad's sides mainly are hypo, but some had PCOS.

About me:

Woman, 30, non-smoker, non-drinker. History of wrong diagnoses, see below. Most GI issues improved after a private investigation. I eat meat 2-3 times daily, liver eaten daily in last 30 days (no more than 200g/week), before then I'd eat meat a few times weekly depending on stomach acid.

Hair loss/receding hairline, fatigue, cold, unexplained pains, mind fog, bone and joint pains, psoriasis, eczema, histamine rashes, pallor coming and going, nausea, confusion, crazy mood swings, cystic acne, hoarse voice, throat pain, sleep problems etc - everything affects my job very negatively, sometimes I become "disoriented" even when speaking to colleagues and managers (even if wfh helps slightly). Endo said my symptom's "aren't thyroid-related" and advised me to go off birth control which I did two weeks ago... Then I find out he's specialised in diabetes...

In the summer, I was able to run 5k every morning and cycle-commute to work (1hr return) every day, even if it didn't help much in keeping the weight down regardless of how much or little food I eat. I'm normally a size 2, but was a 6-8 at my best since the issues blew up, but have since ballooned to size 12-16 (I'm 5 foot nothing, don't own a scale). But since September, I have been unable to walk for 10 minutes and sometimes find myself wheezing after a flight of stairs and have been feeling consistently worse since.

Thriva's doctor said I only need to improve Vitamin D and that everything else in range but I feel that's not really the case.

>>TDLR: I feel like I've been hit by a truck every day since 2010 and nobody's been really able to help me, so I've tried to help myself. My values are said to be normal but I don't seem to be getting much better. Can you pls help me? I'm changing endos.<<

Questions

1. What are the next steps going forward do you think?

2. Besides iron/ferritin and vitamin D, what else should I supplement?

3. Is levothyroxine actually needed? My TSH rose since my last 2 tests and "feel" a flare-within-a-flare is on its way now that I have a goitre growing...

4. How can I improve my sleep? I sometimes have a "hormonal rush" after getting comfortable in bed despite being a tired log all day. Restrictive on caffeine since July too :(

I have an appointment booked with an endocrinologist in mid-February who hopefully will be able to help me. The endo seems to be good, judging what people are saying about her.

Thyroid

Jan 2021 TSH 3.4 (0.27-4.2), FT3 5.0 (3.1-6.8), FT4 15.2 (12-22), T4 98.00nmol/L (59-154), TPO 12.9 (0-115), TgAB 10.2 (0-34)

Oct 2020 TSH 2.4 (0.4-4), FT3 4.9 (3.3-6), FT4 18 (10-22), TPO 65 (0-61)

Aug 2018 TSH 2.8 (0.4-4), FT3 3.5 (3.3-6), FT4 12 (10-22), TPO 34 (0-30), TrAB >1 (0-1.8)

Nutrients

January 2021

Ferritin 33ug/L (13-150)

Vitamin D 41nmol/L (75-175)

Active B12 127.0pmol/L (37.5-188)

Folate N/A - blood cells burst in the lab ("haemolysed")

October 2020

Iron 7 (9-34)

Ferritin 14 (7-120)

Thrombocytes 158 (165-387)

Vitamin D 66 (50-178)

Vitamin B12 229 (156-672)

Folate 26 (>7)

Homocysteine 14 (0-15)

November 2015

Vitamin D 22nmol (no ranges given)

Thank you kindly in advance!!

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prussianblue538
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6 Replies
prussianblue538 profile image
prussianblue538

My body pretty much collapsed two weeks before the October test, waking up one morning a stone heavier, swollen and pale face with swollen fingers. Eating and drinking were exactly the same!!! Weight have increased steadily since then even if eating has remained largely the same, but now also have a goitre.

Issues

Anxiety and depression 2010 onwards (likely hormone-linked)

IBS-A 2015-20 (wrong)

Lactose-intolerance 2015 (retested, negative November 2020)

Gluten-intolerance 2015 (reintroduced 2019 via sourdough bread, no coeliac)

Anxiety returns 2017

Cystic acne 2015-18

Endometriosis 2018 (retested, wrong)

Anxiety returns with vengeance 2019-

Exhaustion (general, since 2005, worsens over time)

Hairloss 2010-12, 2017-18, 2020-

Weight gain 2013 onwards, fluctuating, never able to return to normal weight even on restrictive 1k/cal diet + exercise

Self-supplemented, all OTC

25-50ug Vit D/daily since November 2015, quit November 2020

Center Multivitamin daily since spring 2011 (incl. iron, B12), quit November 2020

14mg iron/daily since June 2018, quit November 2020

Vitamin B complex, quit November 2020. Stopped taking 1 week before October 2020 test

B1 10mg

B2 15mg

Niacin 25mg

B6 10mg

B12 25ug/day

Folic acid 400ug

Biotin 100ug

I quit taking above supplements upon advice from endo who I'm no longer seeing

EDIT for clarity over supplements

SlowDragon profile image
SlowDragonAdministrator in reply toprussianblue538

Welcome to the forum

Ferritin 33ug/L (13-150)

Vitamin D 41nmol/L (75-175)

Active B12 127.0pmol/L (37.5-188)

Clearly vitamin D and ferritin are both still far too low

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

Ferritin at least half way through range

Important to stop biotin supplements a week before ALL BLOOD TESTS as biotin can falsely affect test results

Did you do this?

prussianblue538 profile image
prussianblue538 in reply toSlowDragon

Thanks, SlowDragon . You're such a star!! 🥰🥰🥰 Your replies are so detailed, I'll be re-reading these tomorrow as mind is in a blur. Will ask GP for help with the supplements, if he's unable or unwilling, then new private endo might help in mid-Feb.

I quit the B complex in November 2020 after I met the endocrinologist who told me to also go off birth control which I've been on since June 2018. I got hospitalised twice that June, from mid-cycle and period pain. I did not take B complex for a week BEFORE I did the test in October and then quit it fully in November.

Do you reckon hip pain is common for hypothyroids or with these nutrient deficiencies specifically?

Have a lovely evening 💕

SlowDragon profile image
SlowDragonAdministrator in reply toprussianblue538

Your vitamin D is extremely low and will be causing joint and bone pain

SlowDragon profile image
SlowDragonAdministrator in reply toprussianblue538

Vitamin D

GP should prescribe 1600iu everyday for 6 months

But likely to need higher dose so you may want to self supplement

NHS Guidelines on dose vitamin D required

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

GP will often only prescribe to bring 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

ncbi.nlm.nih.gov/pubmed/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 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

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

It’s trial and error what dose we need,

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

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...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

Vitamin D and Covid

vitamind4all.org/letter.pdf

SlowDragon profile image
SlowDragonAdministrator

Low ferritin and low iron

Low iron and/or low ferritin frequently linked to hair loss

Heavy periods are classic sign of being hypothyroid and will lead to low iron and ferritin you really need full iron panel testing for Anaemia

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

Post discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Why low ferritin can affect TSH

healthunlocked.com/thyroidu...

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