Guidance please : Hi all,I was diagnosed with PPT... - Thyroid UK

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Guidance please

Ela_peraj profile image
15 Replies

Hi all,I was diagnosed with PPT in 2019 after having my second child. I was on medication for a short period of time and my blood tests have been within range. At the time my antibodies where around 1022 Octcber 2019. I was taken off levo 50mg October 2020.

August 2024 results.

Thyroid function test

Serum TSH level 4.57 mu/L [0.3 - 5.0]

Serum free T4 level 12.2 pmol/L [7.9 - 16.0)

I have put on 1 stone the last 3-6 months and I do have a very good diet so really no reason for me to put so much weight on. My TSH has been around 1-3 since 2019 and my T4 around 13-15. Also I wake up like I have a cold or sore throat the last two weeks but I do sleep with a fan on as I am getting extremely hot at night. Any guidance please??

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Ela_peraj
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15 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Your Endo never should have taken you off of Levo as you had a TSH of over 20.

What time of dasy was this test taken? It maes a big difference as highest TSH is at 9am or earlier, TSH runs on a circadian rhythm.

Have you tested key vitamins ferritin, folate, D3 & B12? Hypo people get low or deficient vitamin levels due to poor gut function from being hypo.

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.

Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

Ela_peraj profile image
Ela_peraj in reply to Jaydee1507

So these are my blood test results in June 24. Serum folate level 10.3 ug/L [2.5 - 9999.0]

Serum total 25-hydroxy vitamin D level 67 nmol/L [50.0 - 150.0];

Serum vitamin B12 level 698 ng/L [120.0 - 900.0]

I was removed of levo as I have PPT with my 1st child birth and they said it was the same this time.

I did this thyroid tests at 8.30am. Can they make my levels show that high?

I am a Celiac as well and I do follow a gluten free diet strictly.

Jaydee1507 profile image
Jaydee1507Administrator in reply to Ela_peraj

It does make a big difference testing early in the day, especially if you are wanting to get a diagnosis.

Have you had your thyroid antibodies tested - TPO & Tg?

I would restest in 3-4 months again under the same conditions. Remember to stop the B complex 4-7 days before thyroid test as biotin interferes with the test.

Hashimoto's often accompanies Coeliac and results can vary quite widely in the early days of it.

It would give you a boost to supplement your vitamins to optimal.

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. Most people need a minimum of 3,000iu per day.grassrootshealth.net/projec...

Folate - aim for around 20. If you took a B complex that will include B12 as well. Your B12 result is OK BUT its a sederum B12 and an active B12 test might show you are low.

B complex 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...

Any ferritin result?

Ela_peraj profile image
Ela_peraj in reply to Jaydee1507

Thank you so much for such in dept information.

I believe in the past I've had my tests done after 9am looking back at my results. This is my results for ferritin.

Serum ferritin level 34 ng/mL [15.0 - 300.0]; Ferritin >15 and <100ng/mL

Jaydee1507 profile image
Jaydee1507Administrator in reply to Ela_peraj

So ferritin is quite low. 30 is considered to be deficient.

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/

Ela_peraj profile image
Ela_peraj in reply to Jaydee1507

I have read that low ferritin can affect thyroid function. Is there any supplements you suggest I can take to give it a boost?

Jaydee1507 profile image
Jaydee1507Administrator in reply to Ela_peraj

Iron & ferritin are quite complicated and its possible to have too much iron, so its recommended to have a full iron panel blood test before supplementing for low ferritin, just to be sure you have the capacity for more iron in that way.

Otherwise its best to increase iron rich foods in your diet. Many people do well with chicken liver pate twice a week.

Ela_peraj profile image
Ela_peraj in reply to Jaydee1507

Oh I've never come across that. Is that a receipt or something you take. Sorry I sound silly. Yes I do vonfused with the iron blood works. I will request a full iron blood tests. Is so confusing at what you should keep up like is there a particular one? Like ferritin? Thank you so much for all your help.

Jaydee1507 profile image
Jaydee1507Administrator in reply to Ela_peraj

An iron panel is a set of blood tests to measure different aspects of how iron is used and stored. Ferritin is just storage iron but there are different aspects that get measured to in a panel.

A little like a thyroid panel is TSH, FT4 & FT3.

Ela_peraj profile image
Ela_peraj in reply to Jaydee1507

Thank you so much. I will ask my GP to get my iron levels checked. Hopefully they will. Thank you 😊

SlowDragon profile image
SlowDragonAdministrator in reply to Ela_peraj

as Jaydee1507 says iron is complicated

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

If taking any iron supplements stop 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

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...

Posts discussing Three Arrows as very effective supplement

Great replies from @FallingInReverse

re ferritin and Three arrows

healthunlocked.com/thyroidu......

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great reply by @fallinginreverse

healthunlocked.com/thyroidu...

Iron patches

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...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Really interesting talk on YouTube, link in reply by Humanbean discussing both iron deficiency and weight and towards end how inflammation can also be an issue

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

Updated reference ranges for top of ferritin range depending upon age

healthunlocked.com/thyroidu...

Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:

Females 18 ≤ age < 40. 30 to 180

Females 40 ≤ age < 50. 30 to 207

Females 50 ≤ age < 60. 30 to 264l

Females Age ≥ 60. 30 to 332

Males 18 ≤ age < 40 30 to 442

Males Age ≥ 40 30 to 518

The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.

Ela_peraj profile image
Ela_peraj in reply to SlowDragon

Thank you so much for all this 🙏

SlowDragon profile image
SlowDragonAdministrator

vitamin D

Most people need to supplement at minimum Oct to April in U.K. as recommended by U.K. government

Many (most?) people with thyroid issues find they need to supplement all year

Gluten free diet tends to be low in magnesium as well

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 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

similarly with lower folate level you may find you need to supplement vitamin B complex continuously going forward

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 5-7 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)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

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

Ela_peraj profile image
Ela_peraj in reply to SlowDragon

Thank you so much 😊

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