First Time Post: Diagnosed Hypothyroidism but s... - Thyroid UK

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First Time Post: Diagnosed Hypothyroidism but suspected Hashimoto’s, also diagnosed coeliac disease.

Bluemoon22 profile image
6 Replies

Currently on 100mcg daily of Levo (brand accord). For the last month the pharmacy switched the brand to Teva and I reacted really badly to it, so I’m back on accord.

Recent blood test results below, tested at 8am, no meds/supplements that day and only water consumed before hand. No B vits for 1 week prior.

TSH 2.51 (ulU/ml 0.27 – 4.20)

FT4 19.1 (pmol/L 11.1 – 22.6)

FT3 4.0 (pmol/L 3.1 – 6.8)

Anti-TPO 280.0 (0 – 34)

Vit D (D2 & D3) 99.3 Target levels: (>75 nmol/L), insufficient: (50 - 75 nmol/L), deficient (<50 nmol/L)

Folate 9.6 (ng/ml 3.89 – 26.8)

B12 581 (pg/ml 197 – 771)

IRON STUDIES

Iron 24.2 (umol/L 5.8 – 34.5)

Transferrin 1.62 (g/L 2.00 – 3.60)

Total iron binding 37.7 (umol/L 44.0 – 80.0)

Saturation 64 (% 14- 56)

Ferritin 24 (ng/ml 13 – 150)

I was recently seen by the Gastroenterologist who requested most of these tests, and I also have results for Bone Profile, Liver Function Test, Electrolytes, autoantibody screen, Full Blood count with comment I have Mild neutropenia. Some of these results are below range and I will discuss with my Gastro at my next appointment in June 22, I wasn’t sure if it was appropriate to post any of those here.

Current symptoms: extremely hard dry skins on hands, feet, dry patches on face, constantly dehydrated regardless of drinking water 1.5 litres per day. Intermittent anxiety and rare heart palpitations.

Supplements I’m taking as recommended by my naturopath (if anyone can recommend cheaper/better brands):

B Complex Plus (Brand: Pure Encapsulations)

Vit D (Brand: Natural products corp.)

K2 as MK-7 (Brand: Just Vitamins)

Thyroid Support Complex (Brand: Pure Encapsulations)

Iron (Brand:BioMedica Nutraceuticals) I always forget to take them

My doctors don’t seem to know what to do with my thyroid results, they were below range in august last year (TSH 4.79 ulU/ml 0.27 – 4.20) and 2 separate doctors just said to wait a few months and see what happens, so here we are. around the same time I was also experiencing very sensitive neck, delicate to touch, with neck pain, constant sore throats for months- they refused to do a scan without any physical lump, etc, and just said we will wait and see what happens. I do have access to Private Healthcare if that would be better or anyone can recommend a good Endocrinologist in the UK?

Thank you for your support

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Bluemoon22
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6 Replies
SlowDragon profile image
SlowDragonAdministrator

High thyroid antibodies confirms autoimmune thyroid disease, aka Hashimoto’s

Presumably you are 100% gluten free all the time

Anyone hypothyroid and on levothyroxine, especially with Hashimoto’s should avoid extra iodine (in that Thyroid support supplement)

Iodine is extremely controversial supplement

thyroiduk.org/11-great-ques...

If you were to consider iodine supplements you should always test iodine levels first

Iodine test

If you want to do an iodine test then the best is a non-loading urine test which can be done with Genova Diagnostics. Details of test in the pdf linked to on ThyroidUK's page here, along with details of how to order and receive your results :

thyroiduk.org/help-and-supp...

The test code is END25 and can be found on page 3 of the pdf.

Your ferritin is too low

Are you vegetarian or vegan?

Or heavy periods

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

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...

Retest thyroid and vitamin levels 2-3 months after working on improving low ferritin

If Ft3 remains low (likely as you are coeliac) then going to need small doses of T3 prescribed alongside levothyroxine

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

tukadmin@thyroiduk.org

Bluemoon22 profile image
Bluemoon22 in reply toSlowDragon

Oh I forgot I also take a solvable drink called Basica- ingredients attached.

Thank you SlowDragon. Yes 100% gluten free. Oh I will stop the Thyroid Support Complex, might explain why it made me so ill to begin with.

No not vegetarian, vegan or heavy periods, although I don’t eat a lot of meat. I will look to change my diet as suggested. I can’t stomach orange juice due to it giving me reflux but I will find an alternative.

So did I provide the results for the full iron panel? I couldn’t see a list of tests on that link. If not could you please advise what it includes?

Also do you have any links to explain why I should also be prescribed FT3 if it remains low so I can put this forward to my doctor in the Isle of Man before I attempt other doctors in the UK via Healthcare Insurance.

Thank you for help!

Colour photo of ingredients
SlowDragon profile image
SlowDragonAdministrator

This is full iron panel test

medichecks.com/products/iro...

Looking like you have had everything tested

IRON STUDIES

Iron 24.2 (umol/L 5.8 – 34.5)

Transferrin 1.62 (g/L 2.00 – 3.60)

Total iron binding 37.7 (umol/L 44.0 – 80.0)

Saturation 64 (% 14- 56)

Ferritin 24 (ng/ml 13 – 150)

So you have low transferrin

labs.selfdecode.com/blog/tr...

Low TIB

webmd.com/a-to-z-guides/wha...

High saturation

But low ferritin

So your results are confusing

Iron is very complex

You perhaps need investigation for hemochromatosis

medicalnewstoday.com/articl...

Usually hemochromatosis has high ferritin

medicinenet.com/iron_overlo...

SlowDragon profile image
SlowDragonAdministrator

Interesting

Coeliac and hemochromatosis may be linked

pubmed.ncbi.nlm.nih.gov/150...

celiac.com/articles.html/a-...

ncbi.nlm.nih.gov/labs/pmc/a...

journals.lww.com/eurojgh/Ci...

SlowDragon profile image
SlowDragonAdministrator

Think you should ask for referral re iron and ferritin

Your levels are very odd

High iron and low ferritin

Not sure you should be increasing iron rich foods

You probably need to see haematologist

This article is especially interesting

celiac.com/articles.html/a-...

Also an endocrinologist

as coeliac likely to need addition of T3 prescribed alongside levothyroxine

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

tukadmin@thyroiduk.org

Bluemoon22 profile image
Bluemoon22

Hi,

I just thought I would post an update to say Thank you to Slow Dragon who identified I had Haemochromatosis before the doctors did! I am very grateful for your advice. I had to fight for them to provide me with the gene test, but the results came back in July 2022:

Carrier of Haemochromatosis HFE gene mutation- no treatment required currently but they will continue to monitor Iron levels every 6 months.

Recent blood test results below, tested at 8am, no meds/supplements that day and only water consumed before hand. No B vits for 1 week prior.

TSH 5.99 (ulU/ml 0.27 – 4.20)

FT4 19.1 (pmol/L 11.1 – 22.6)

FT3 - Dr wouldn’t test

Anti-TPO - Dr wouldn’t test

My TSH hasn’t been within range since 2020- screenshot below (except on one occasion) and the doctors don’t seem interested in doing anything about it other than ‘continue to monitor with blood tests’.

I’ve almost lost faith recently, stopping taking all supplements and stopped following up on here to try do something to improve my health, however I know I need to work on this myself so will start re-introducing supplements again.

My current symptoms are: Increased weight, Exhaustion, Dry skin, Struggle with mental clarity and Need much more sleep.

I’ve got the list of doctors that prescribe T3 so I will go from there, however any other advice is welcome. Thank you

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