Results are in: Hi all, I got some private tests... - Thyroid UK

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Results are in

Peril1504 profile image
13 Replies

Hi all,

I got some private tests done (attached) and I have to say I’m surprised as they seem to point to me being hyperthyroid but have all the symptoms of hypo. Can someone explain to me please?

Other tests done recently were:

B12 - 240 - I have pernicious anaemia and am getting B12 injections off the GP but am supplementing with injections of my own as 3 monthly isn’t enough.

Ferritin - 16 - have been prescribed ferrous sulphate off the GP. Refused iron infusion as Hb levels were normal.

Vitamin D - 88 - I take Adcal D3 twice daily.

I have malabsorption due to a gastric bypass about 20 years ago.

Many thanks 😊

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Peril1504
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13 Replies
SlowDragon profile image
SlowDragonAdministrator

High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

No folate result

As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and may help improve B12 levels between injections

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.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

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 currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 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...

Peril1504 profile image
Peril1504 in reply to SlowDragon

Thank you. I think I’ve read most of these over the last couple of weeks but there may be something I missed. I followed instructions about stopping supplements before testing and did my test at 5am before I’d had anything other than water. I didn’t take my T4 overnight either so was well over 24 hours since my last dose.

Sorry I omitted the folate result which was 13.5 and in the low normal range.

SlowDragon profile image
SlowDragonAdministrator

Ferritin is dire

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

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

healthunlocked.com/thyroidu...

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...

Ferritin range on Medichecks

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

Here’s absolutely excellent reply by @humanbean

on iron and ferritin panel test results for another member

healthunlocked.com/thyroidu...

Good explanations of iron

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...

Helpful info on iron infusion and supplements

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

looking at profile you taking 125mcg levothyroxine

So you would expect low TSH

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

was this how you did your test

What are the ranges on Randox tests

Ft4 12-22?

Ft3 3.1-6.8?

assuming yes

FT4: 20.8 pmol/l (Range 12 - 22)

Ft4 88.00% through range

FT3: 4.2 pmol/l (Range 3.1 - 6.8)

Ft3 only 29.73%

Currently poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

Improving low vitamin levels should improve conversion rate, especially low ferritin

SlowDragon profile image
SlowDragonAdministrator

Did you not know that cause of your hypothyroidism was Hashimoto’s

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

Hashimoto’s and leaky gut often occur together

Post discussing gluten

healthunlocked.com/thyroidu...

Peril1504 profile image
Peril1504 in reply to SlowDragon

I’m not sure I understand any of it if I’m honest, not now that everything I was told by my endo (diagnosed with Graves’ disease 2013 which resolved after carbimazole and T4 replacement). From previous posts it would appear that I probably didn’t really have Graves’ disease at all.

All I want to do is to feel more myself again and have some energy and hopefully shift some of this weight that I really shouldn’t be carrying as I eat a healthy diet and still can’t overeat after my gastric bypass. I’m hoping that by following the advice on here I might be able to feel like I’m living again rather than just existing and struggling to get out of bed every morning. I love my job (I work in specialist haematology) and would like to keep working for a lot longer but it’s hard when everything is such a struggle 😞

SlowDragon profile image
SlowDragonAdministrator in reply to Peril1504

You are severely deficient in ferritin

This will make you exhausted and badly affect how levothyroxine (Ft4) converts to active hormone (Ft3)

Because of your gastric bypass it’s likely even harder to absorb nutrients

On levothyroxine we need good vitamin levels

and you need to also try gluten free diet too ….you might be astonished

You may/probably need T3 (liothyronine) prescribed alongside levothyroxine once you improve vitamin levels

GP can’t prescribe. Initially must be prescribed via endocrinologist

List of thyroid specialists and endocrinologists who will prescribe T3

healthunlocked.com/thyroidu...

over a years wait on NHS

suggest you choose one to see privately from list who is also NHS

seveneleven profile image
seveneleven

Your T3 is really quite low in range for that dose of levo. Your T4 versus T3 shows that you're not converting the storage hormone (T4) to the active hormone (T3). If you're already at 125 levo and still feeling rubbish, a trial of T3 is probably warranted. Conversion could maybe improve a bit with better vitamin levels, but that's not necessarily failsafe, and some people just need T3. It's worth raising with your endo, though if they haven't even explained the Hashimoto's to you then they don't sound particularly helpful! Another option is to see a private endo/thyroid-specialising GP. Re ferritin, with levels like that and the bypass history, you probably have trouble absorbing iron generally, and some don't get on with synthetic ferrous supplements, especially where there's a gut issue or limit on food intake. I've used heme iron, Three Arrows, to raise my ferritin, and it's gone up nicely within a few months - similar effect to eating a lot of liver but without actually having to eat liver every day.

Peril1504 profile image
Peril1504 in reply to seveneleven

Thank you. I don’t have an endo at the minute, simply my GP who has been very helpful in some ways but not very helpful in others. I’ve not tolerated oral iron yet and have ferrous sulphate this time to be taken with a glass of orange juice so will give it a go. She ruled out iron infusion due to my FBC all being normal. As an aside, I’m a blood donor and am keen to continue given some of my leukaemia patients need transfusion and platelets but I’d stop if I really wasn’t doing myself any favours continuing. My Hb was 143 prior to my last donation so in good shape.

seveneleven profile image
seveneleven in reply to Peril1504

Ah fair enough. Heme iron may well be a good alternative for you - I can't tolerate any other oral iron. It might be worth asking your GP for an endo referral with a view to trying T3 because of your conversion issues. They may refuse if they have no understanding of T3, or the endo might refuse if they're similarly clueless (many in NHS are diabetes specialists and unhelpful with thyroid), but often worth a shot. And if you don't make any improvements with better vitamin levels, then it's worth looking into a private doctor as a last resort.

Peril1504 profile image
Peril1504 in reply to seveneleven

Do you have any side effects with heme iron? I had horrendous side effects with ferrous fumarate and would rather avoid a repeat if possible.

seveneleven profile image
seveneleven in reply to Peril1504

Nope, none at all - it's the same kind of iron you get when you eat liver or red meat, so it's derived from food and therefore tolerated well. I'm similar and have a gut that can't tolerate most things, so this is the only kind of iron I've been able to take successfully. Because it's generally well absorbed, it also seems to raise ferritin levels fairly quickly (this has been my experience and others I know). Three Arrows is the only one I've found without weird fillers here - it's a US brand, and their website is incredibly annoying, but 1 bottle of capsules lasts me 3 months, so not bad value.

helvella profile image
helvellaAdministratorThyroid UK

You might find some interest in this document:

helvella - Iron Document

This is a summary of what I have read up and found out about iron supplements over the past few years. I am not in any way medically trained. You are strongly encouraged to check every detail before making any decisions for yourself.

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

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