Help please,where do I go from here?? - Thyroid UK

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Help please,where do I go from here??

Seashell8915 profile image
16 Replies

Hi everyone,

I have had my repeat bloods and everything has come back ‘satisfactory’. I know that doesn’t mean optimal but I also know I’m going to have a hard time convincing the doctor that! I had my free T4 and anti bodies tested at the hospital when I saw the consultant last week, I have requested a copy of the results which I don’t have yet as the doctors couldn’t tell me the actual levels.

My results are below:

TSH - 1.84 range 0.27-4.2

Vit. D - 67.5 >50 sufficient

B12 - 492 range 197-771

Ferritin - 35 range 12-233

Folate - 3.3 range 2.4-26.8

The only thing over range was my inorganic phosphate which was 1.52 range 0.8-1.5. Not sure this has any relevance to anything.

I will update with my other levels when I have them from the consultant. My question really is should I concentrate on getting my vitamins up to optimal levels?if so what do you recommend I take? This test was done fasted at 7.45am. The hospital test was done around 12pm and I had had my breakfast as I didn’t know I’d be having a blood test.

If my Free T4 still comes back low in range would that be a case for a ‘trial’ of Levo? My symptoms are worse than ever!

Thankyou

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Seashell8915
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16 Replies
Lisalisajay profile image
Lisalisajay

I would be prepared to fight. I did for six years and went private.

2019 was diagnosed

This month my GP overturned diagnosis and I'm back to square one.

There's an interesting article on the thyroid UK website about TSH and related tests which GPs seem to use rather the a talking to patients.

The system does not support us and we are left to fight to be heard and treated with respect. In my experience I would find a specialist and get everything written in stone.

Seashell8915 profile image
Seashell8915 in reply toLisalisajay

That’s what I’m thinking,I can’t go on like this! I just need to get all my research and evidence together to prove there really is something wrong with me!

Lisalisajay profile image
Lisalisajay in reply toSeashell8915

Even then the NHS will fight or change a diagnosis because they don't listen to patients symptoms.

I.am seeing a specialist in November because yet again I'm fighting the BS TSH golden rule and they've sent me into symptoms I've not had for 4 years because a GP decided I have Graves instead. Cut.my meds by 50mcg in one go.

So broken my remission and now they won't reinstate because apparently my opinion (not lived experience and research) which I clearly got "off the Internet" is being argued by my practice.

It's cost me thousands to get back to health. My advice is find someone you trust and be prepared to pay.

That avoids the NHS interference.

Jazzw profile image
Jazzw

Your B12 and folate levels have dropped rather a lot—particularly if you compare them to last November’s test results. That would suggest that you’ve got an issue with gut absorption. That could tie in with brewing hypothyroidism but you don’t as yet have the blood test results to fully back that up.

Have you had thyroid antibodies checked at all?

Seashell8915 profile image
Seashell8915 in reply toJazzw

I had them checked last week but with the hospital not the doctors and the receptionist couldn’t see the results, I can’t get a phone call with the doctor until the 2nd September 🙄 so just waiting for the hospital to get my results to me.

I am having gut issues and I have a sigmoidoscopy booked for the beginning of September to investigate further. I also had a ct scan last week but won’t hear about that for around 2 weeks.

I’m guessing I’ll have to private test to check the levels myself as I don’t think I’ll get anywhere with the doctors.

Jaydee1507 profile image
Jaydee1507Administrator

What time of day was this test? Recommended time is 9am or earlier, fasting and no biotin supplements for 4-7 days before.

We really need to see the FT4 & Ft3 too to make a proper assessment.

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.grassrootshealth.net/projec...

my interpretation.

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/

Both B12 & folate are less than optimal. Suggest a good methyl B complex to keep all the B's in balance.

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...

Seashell8915 profile image
Seashell8915 in reply toJaydee1507

Thankyou Jaydee1507, I’ll have a read through the articles.

The test was done at 7.45am fasted and I don’t take any supplements. I’m hoping I can get hold of my Ft4 soon but not sure who to contact at the hospital. They didn’t test my Ft3 I don’t think,only my anti bodies (which I don’t know the results as they are with my Ft4) I will update if I receive them

SlowDragon profile image
SlowDragonAdministrator

Vit. D - 67.5 >50 sufficient

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

Initially perhaps try 2000iu per day - retest in 2-3 months

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

only add one supplement at a time then wait 10-14 days to assess before adding another

Starting with vitamin D

B12 - 492 range 197-771

Folate - 3.3 range 2.4-26.8

B12 just about ok

Folate far too low

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 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...

SlowDragon profile image
SlowDragonAdministrator

Ferritin - 35 range 12-233

Ferritin far too low

Are you vegetarian or vegan

Pre or post menopause

Approx age

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.

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 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.

Seashell8915 profile image
Seashell8915 in reply toSlowDragon

Thanks for all the info SlowDragon,you are very helpful! I will read through everything tonight and definitely start supplementing. I will start private testing as I know I’m not going to convince the doctors after these last results! I am not vegan or vegetarian and eat a healthy varied diet. I’m 34 and as far as I’m aware not starting the menopause.

I’m hoping the consultant rings tomorrow to discuss the T4 and antibody results. I will then hopefully know what my levels are.

SlowDragon profile image
SlowDragonAdministrator in reply toSeashell8915

See if hospital tested TPO antibodies

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)

If TPO antibodies are negative, NHS won’t test TG antibodies. You would need to test privately

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

where to get scan

thyroiduk.org/testing/other...

Gluten intolerance is often a hidden issue too.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Seashell8915 profile image
Seashell8915 in reply toSlowDragon

I’m sure I saw both antibodies listed on the hospital sheet along with freeT4. I’m going to ring the hospital tomorrow until someone can give me my results.

I had a scan on my neck and thyroid in July, they found a nodule on the right side which they said looks benign. Also a raised lymph node on the same size which looks normal in appearance (this was all the information in my letter). I have had to contact medical records to get a copy of my scan report as no one seemed to want to give me it. So again I am just waiting for that to come through the post (I seem to be doing a lot of waiting to get results!) it will be interesting to see what else the report says.

I did have a coeliac test in November and that was negative so will definitely try gluten free. I have cut bread out so far but will more strict and go totally gluten free from now on.

Seashell8915 profile image
Seashell8915 in reply toSlowDragon

Just spoken to the consultant, as i thought he’s not worried and won’t be monitoring me.

The test from the hospital which was done at 12pm (didn’t know I was going to have this) and I had my breakfast at about am.

TSH 2.04 range 0.27-4.2

Free T4 13.6 range 11-26

TPO <5

He thinks that around 13 is what I run at as that’s what my first test was like 🤷🏼‍♀️

I think I will focus on my vitamin levels and continue with private testing to keep an eye on everything. Thanks for all your help.

SlowDragon profile image
SlowDragonAdministrator in reply toSeashell8915

So no TG antibodies tested

TSH would have been higher at 8-9am

Work on vitamin levels and retest FULL Thyroid and vitamins in 2-3 months

Aiming for minimum

Vitamin D over 80nmol

B12 over 500

Active B12 over 70 (private testing)

Folate at top of range

Ferritin minimum 70

Test full iron panel every 3-4 months if taking iron supplements

Seashell8915 profile image
Seashell8915 in reply toSlowDragon

Thanks SlowDragon, I will do everything you have advised and update with a new post in a few months once I have had the full blood tests done.

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