Hashimotos - help with results: Hi - my wife was... - Thyroid UK

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Hashimotos - help with results

Se99jmk profile image
19 Replies

Hi - my wife was diagnosed with Hashimotos, and I'm trying to help her by getting an understanding the metrics more for myself.

Results to date:

17/11/2022

TSH - 5.04 (0.27-4.20)

Free T4 - 13.7 (11.10-22.00)

TPO - 345 (0.00-34.00)

18/04/2023

TSH - 1.42 (0.27-4.20)

Free T4 - 19.7 (12.0-22.0)

Free T3 - 4.1 (3.1-6.8)

Ferritin - 43 (13-150)

02/01/2024

TSH - 4.97 (0.27-4.20)

Free T4 - 16.4 (11.10-22.00)

Ferritin - 39 (30.00-150.00)

Annoyingly a slightly mixed bag of what they checked... I'm trying separately to find a 'good' doctor she can build a relationship with, who could potentially give more consistent testing..

I'd be grateful if you had any suggestions or feedback based on the results to date?

EDIT - I have screenshots of the three sets of full results, including other results like bloods, folate, and B12, but annoyingly it keeps saying they're not the right image format (they are). Hopefully this link works - imgur.com/a/zMqIimA

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Se99jmk
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19 Replies
Jaydee1507 profile image
Jaydee1507Administrator

To be fair you may be disappointed with seeing a private Endo, but some find it makes them feel more confident. Most are diabetest specialists and understand little about vitamin requirements and smaller details that make a real difference to how we feel.

Did she get a dose increase following the February test as the results indicate that would be required.

There are a number of variables with blood tests and getting consistent, accurate results to show stable blood levels is very important. Attention to detail is key.

Always test at 9am or earlier for highest TSH.

Take last dose of Levo prior to blood test 24hrs before, otherwise results will show the peak of T4 entering blood stream and not the stable level.

Fast the morning of test, only drinking water as some foods can affect TSH.

NHS often only tests TSH, sometimes FT4 and rarely if ever FT3. Members in this group buy private blood tests to see the results they need to help them feel well.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc

Link with ideas for dietary iron:

dailyiron.net/https://three...

Se99jmk profile image
Se99jmk in reply toJaydee1507

wow, thank you for the detailed response! I believe B12 and D3 were checked too, at least on some of the reports, I just hadn’t pulled it out (as I wasn’t sure what was most relevant, yet)

Jaydee1507 profile image
Jaydee1507Administrator in reply toSe99jmk

What were the results if you have them?

You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

Se99jmk profile image
Se99jmk in reply toJaydee1507

I had to add the full results in the Imgur link in the post. Just pulling out those values:

2022

B12 - 393 (197-771)

Vit D - 104 (50-99999)

2023

B12 - 423 (191-663)

Vit D - not checked

2024

Not checked either

Jaydee1507 profile image
Jaydee1507Administrator in reply toSe99jmk

These are quite old tests and likely her numbers have got worse since they have been taken as shes under replaced. You will find it alot cheaper to buy your own private tests rather than going through a private doctor. Cheapest would likely be either Monitor My Health (an NHS lab so often GPs will accept results from there) or Randox. There is a discount code for MMH on the T UK page: thyroiduk.org/testing/priva...

Her B12 & folate are too low so she would benefit from taking a good B complex to help keep all the B vitamins in balance. Some suggestions: Slightly cheaper options with inactive B6:

amazon.co.uk/Liposomal-Soft...

Contains B6 as P5P an active form:

bigvits.co.uk/thorne-resear...

healf.com/products/basic-b-...

Explanation about the different forms of B6:

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

B complex comparison spreadsheet:

healthunlocked.com/thyroidu...

D3 is good. I assume shes already taking a supplement which she needs to continue to do.

Se99jmk profile image
Se99jmk in reply toJaydee1507

She’s got AXA insurance so trying to sort through that, and happy to pay for higher quality. She’s organising another updated test currently I believe - not sure how often they should be though… quarterly perhaps? She’s super busy, so an at-home test would be a LOT easier!

B12 and Ferritin good ones to tackle - she’s waiting until next test though before doing those as didn’t want to mess the results..

she was previously given increased dose of Levo, but felt horrible on it so reduced - honestly not sure exactly what she’s taking, but I think…

- Collagen (14 April)

- Iron (ferritin?) every 2 days

- Vitamin C

- Vitamin D3

Jaydee1507 profile image
Jaydee1507Administrator in reply toSe99jmk

Vit D should be tested twice a year until she knows how much she needs in each season.

Other vitamins are good to test every 3-4 months once she has started supplementing, until she is on the right amount to raise levels to optimal.

Its common to feel worse following a dose raise but this should settle over a few months. Getting all key vitamins to OPTIMAL will help with dose raises and tolerance of higher levels of thyroid hormone.

Start a new post once you have new results.

Se99jmk profile image
Se99jmk in reply toJaydee1507

Will do once new results come in, thanks.

Se99jmk profile image
Se99jmk in reply toJaydee1507

Is 'folate' the same as Vit D? Or Maybe B3? Different names for different things and finding it all a bit confusing with the technical terminology...

So far I think we should be testing at least:

- TSH

- Free T4 (FT4)

- Free T3 (FT3)

- TPO (Antibodies)

- Ferritin (Part of iron test)

- Vit B3 (Folate)

- Vit B12

- Vit D

=====

Bonus tests include selenium, zinc, omega 3&6, magnesium

Jaydee1507 profile image
Jaydee1507Administrator in reply toSe99jmk

Folate is not Vit D.

Folate is also known as vit B9 but for test purposes usually referred to as folate or sometimes folic acid. This can be confusing to begin with but they are all forms of the same vitamin.

You can add the 2nd form of antibodies - Thyroglobulin (Tg) to your list. These aren't tested by the NHS but widely available privately.

Selenium testing can be expensive.

Omega fatty acids is a blood spot test. The cheapest I have found is here at £50: barebiology.com/collections...

If testing zinc its a good idea to test copper at the same time as they work together and need to balance.

Se99jmk profile image
Se99jmk in reply toJaydee1507

Awesome thanks for clarifying that. I believe Tg was testing on and off, and some of those metals, just checking... her private healthcare is quite comprehensive, but just trying to get my head around the things to ask for 😋

Getting a pretty huge list now, I feel a tracking spreadsheet coming on! 😅

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation she needs TSH, FT4 and FT3 tested

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 autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

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

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and 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...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

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

SlowDragon profile image
SlowDragonAdministrator

Ferritin - 39 (30.00-150.00)

This is low

She needs to work on increasing iron rich foods in her 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

catpotter44 profile image
catpotter44 in reply toSlowDragon

I noticed though that serum iron was high on one blood test. Not sure what that means though if serum iron is high but ferritin is low?

SlowDragon profile image
SlowDragonAdministrator in reply tocatpotter44

Iron and ferritin are complex

if iron is high, but ferritin low, can ONLY improve ferritin with iron rich foods because excess iron from supplements would be toxic

If iron is low and ferritin, then supplementing iron is possible

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

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

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Stop iron supplements 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

On levothyroxine we need ferritin at least over 70 in order to improve conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

Low ferritin is extremely common when hypothyroid

Se99jmk profile image
Se99jmk in reply toSlowDragon

Huh, I don’t know if she still is, but definitely was taking iron supplements - been anaemic before, particularly around time of having boys (now 5, 7).

Good tips on the re-test, and definitely need to watch out for high iron and low ferritin if planning to supplement!

She doesn’t like the taste of red meat - never has - but given she’s now going gluten (and maybe dairy) free, is willing to re-introduce…

hoping for new test soon, trying to book in now, then can get some updated stats!

Se99jmk profile image
Se99jmk in reply tocatpotter44

Good catch!

LilacandMint profile image
LilacandMint

Magnesium and vitamin D should be checked too. Magnesium is important in the conversion of T4 to T3. It should be at the optimum level of 0.85 or above. Vitamin D should be at the optimum level of 75 or above. What is being done to bring the TPO antibodies down?

Se99jmk profile image
Se99jmk in reply toLilacandMint

Thanks - good to know some target levels on those! She’s organising an updated test, inc. Magnesium and Vit D…

Not sure what’s being tried, though she’s now gluten free for last month or so, will be interesting to see what effect that has!

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