No help: So my thyroid results weren’t done... - Thyroid UK

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HypoMorgan profile image
20 Replies

So my thyroid results weren’t done. Doctor could only see my iron and folic results were both low. Iron I’m 3 on a scale that should be (7-334) or something.

I am now waiting for a blood test for thyroid and also siliac. So annoying it wasn’t done last week like it was supposed to be . I’m fed up of feeling pants.

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HypoMorgan profile image
HypoMorgan
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SlowDragon profile image
SlowDragonAdministrator

what is being done about extremely low iron? You should be referred for iron infusion, likely ongoing iron supplements. As absolute minimum you should be prescribed iron supplements 3 x per day. But this would still take months to improve levels. Whereas an iron infusion will bring level up rapidly

B12 should be fully tested for Pernicious Anaemia BEFORE starting on folic acid supplements for low folate

Vitamin D will need testing too

Low vitamin levels are very likely directly linked to being under treated for hypothyroidism

Essential to test both TPO and TG thyroid antibodies

Low vitamins are especially common with Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

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.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies

Ideally 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...

scdlifestyle.com/2014/08/th...

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

restartmed.com/hashimotos-g...

Levothyroxine needs good vitamin levels to work well.

HypoMorgan profile image
HypoMorgan in reply toSlowDragon

Thank you. I will look into it. Doctor just proscribed me iron supplements, 2 a day. And folic acid once a day. That’s all that getting done. How much would an iron infusion cost? Xxx

SlowDragon profile image
SlowDragonAdministrator in reply toHypoMorgan

Are you in the UK?

Insist on referral to haematology asap

Ask GP for Coeliac blood test too

You can improve iron absorption by taking vitamin C alongside each iron supplement

Also eating liver or liver pate once a week, plus other iron rich foods like spinach, pumpkin seeds and dark chocolate

Was B12 tested?

Add results and ranges if you have them

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be more beneficial than just folic acid

But getting B12 tested first if not been done

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

You are legally entitled to printed copies of all your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

HypoMorgan profile image
HypoMorgan

Ok I will do that.

I asked my doctor to send me to a thyroid specialist and she said they would only say the same thing she has about getting iron up first etc. So yet again I was shot down to being transferred. Yes I’m in the UK. Xx

SlowDragon profile image
SlowDragonAdministrator in reply toHypoMorgan

Yes getting iron levels up is the most urgent requirement, hence the need for iron transfusion if levels are that low

Also need to consider WHY levels are so low

Likely due to thyroud being inadequately treated

Are you vegetarian?

Coeliac or gluten intolerance common with Hashimoto's so you need thyroid antibodies tested if not been done

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

please email Dionne at

tukadmin@thyroiduk.org

Come back with new post once you get results and ranges on Thyroid, TSH, FT3 and FT4 plus both TPO and TG thyroid antibodies, vitamin D and B12

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor


How much Levothyroxine are you currently taking?

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine.

Though it is the only one for lactose intolerant patients

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

HypoMorgan profile image
HypoMorgan in reply toSlowDragon

I think it is my antibodies. Attacking my thyroid ( doctor described it as a fur covering my thyroid.

I am a meat eater xx

SlowDragon profile image
SlowDragonAdministrator in reply toHypoMorgan

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn't been tested yet

You need both TPO and TG thyroid antibodies tested

Coeliac blood test too

Angel_of_the_North profile image
Angel_of_the_North in reply toHypoMorgan

*sigh*No it is nothing like fur covering your thyroid. It is more like a gang of teenage vandals destroying a bus shelter, leaving broken glass and empty spray paint cans behind - because they can. And when it's rebuilt, they do it again - because it's there and they can.

HypoMorgan profile image
HypoMorgan in reply toAngel_of_the_North

Is there anyway to get rid of these vandals so the bus stop stays built neat and safe? Xx

Angel_of_the_North profile image
Angel_of_the_North in reply toHypoMorgan

Possibly. But not until AFTER you've had coeliac test. Gluten-free diet and selenium supplements (selenomethionine) might help. But you won't know that is the cause until you've had TPO and TG antibodies tested as part of the thyroid testing - which they may not do - otherwise GP is just guessing.

HypoMorgan profile image
HypoMorgan in reply toAngel_of_the_North

I’m gonna pay for a medicheck thing done. The full thyroid one once I get a bit of spare cash. They do all those tests x

Angel_of_the_North profile image
Angel_of_the_North in reply toHypoMorgan

If GP wants to get iron up , why are you not being prescribed iron infusions or at least the NHS recommended amount (3 x 210mg ferous fumarate per day)? It'll take months, if not years, to get iron up on 2 a day. You should also request a referral to gastroenterology to make sure there is no internal bleeding causing low iron. I got that referral as a matter of course when my iron went to bottom of range.

HypoMorgan profile image
HypoMorgan in reply toAngel_of_the_North

Sorry, she has prescribed ferrous fumarate at 210mg, but only 2x a day xx

Angel_of_the_North profile image
Angel_of_the_North in reply toHypoMorgan

The recommended adult dose is 3 a day

HypoMorgan profile image
HypoMorgan in reply toAngel_of_the_North

So should I take 3 a day and then go back for more after 2 months? She given me 3 months worth.

Angel_of_the_North profile image
Angel_of_the_North in reply toHypoMorgan

If you are paying for prescriptions, you can get ferrous fumarate at about half the price of a prescription in many pharmacies (eg Tesco), so, if paying I'd take 3. But your GP may not prescribe more when you run out too soon, so if you don't pay, I'd just take 2. Take with vitamin C and, if you get an upset stomach, with food.I doubt that your levels will be good in a couple of months

HypoMorgan profile image
HypoMorgan in reply toAngel_of_the_North

I don’t pay for prescriptions. I’m happy to buy extra and take 3 a day. I just hate feeling like this especially when I’m the main parent to my 2 year old. It’s hard x

Angel_of_the_North profile image
Angel_of_the_North in reply toHypoMorgan

Keep a packet to take to the pharmacy and tell them that your doctor knows you are taking them - or look for an online pharmacy that sells 210mg ferrous fumarate (you usually have to tick a declaration that your GP knows you are taking them)

SlowDragon profile image
SlowDragonAdministrator

Keep eating high levels of gluten and Insist on coeliac blood test from GP ASAP or buy online for under £20

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...

scdlifestyle.com/2014/08/th...

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

restartmed.com/hashimotos-g...

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

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.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

HypoMorgan profile image
HypoMorgan

What is an endoscopy??

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