Confused over blood results : Hi, I’ve posted... - Thyroid UK

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Confused over blood results

markwsteele
markwsteele

Hi, I’ve posted before about issues I’ve had with what appears to be an under active thyroid...so now I’ve got blood results (which might as well be in Spanish!) so I’m hoping that someone here might be able to put them into simple English.

In April last year I had a blood test that showed:

Thyroid peroxidase antibody level - 484.4 u/mL

Erythrocyte Sedimentation rate - 13 mm/h

A blood test in July last year showed:

Saturation iron binding capac - 12%

August blood test showed:

Serum TSH Level - 6.1

Serum free T4 level - 14.5

From September onwards I’ve been on Levothyroxine 25mcg which took a while to have any effect but then only worked for about 4 weeks! I’ve asked for an increase but this has been refused point blank because a repeat TSH test showed I was within normal parameters (although I don’t have the exact results just yet).

A blood test in October showed:

Serum C reactive protein level - 7mg/L

This week I’ve had an ultrasound scan on my neck which has shown my thyroid to be smaller than expected...not large.

Someone somewhere is clearly missing something but I’m not sure what.

If anyone can help with this I will be grateful.

Thanks

19 Replies
oldestnewest

Well, it looks like you have Hashi's, but difficult to tell because you haven't put any ranges - we always need the ranges.

You also have an ignorant doctor. It's not just being 'in-range' that counts, but where in the range the result falls. Was the TSH of 6.1 before you started the 25 mcg? Or after? Your doctor is wrong to go by the TSH, anyway.

Ranges?? I’ve no idea what that means...the other figures given for TSH 6.1 was 0.27-4.20....is this what you mean? And yes 6.1 was before I started Levothyroxine

Sorry, yes, that's the range. 'Normal parameters' is another name for it. :) Did you have ranges for the other tests?

Right ok, think I’ve got my head around ranges....so:

Thyroid peroxidase antibody 484.4 (<60)

Serum Calcium 2.13 (2.15-2.55)

Plasma Gamma GT level 68 mmol/L (<60)

Serum anion gap 31 mmol/L (10-20)

Plasma C reactive level 6 mg/L (<5)

Erythrocyte sedimentation rate 13 mm/h (0-6)

Saturation iron binding capac 12% (20-50)

Serum c reactive protein 7 mg/L (0-5)

I’ve added the rest of the tests that had a flag next to them. Hope it makes sense to you. Thanks

Well, there are a lot of tests that I don't know anything about, there, but you have Hashi's, and you are hypo. I presume that FT4 was low in-range. No FT3?

As SlowDragon says, the aim of thyroid hormone replacement (levo) is to bring your TSH down to 1 or under, and once it gets to that point, it doesn't have much use for dosing purposes. But, it's hardly unlikely that 25 mcg is going to do that for you. It's only half a starter dose. Four to six weeks after starting the 25 mcg, your doctor should have retested you and increased your dose by 25 mcg. That he refuses to increase shows that he know nothing about thyroid.

The 'good' news is, that with Hashi's, on only 25 mcg levo, your TSH is bound to go up above range sooner or later. However, you really do need a new doctor who knows something about thyroid, or you're going to have this battle continually and never manage to get well. He just doesn't know what he's doing. :(

You also have high levels of inflammation, according to the CRP test, but that's to be expected with Hashi's. It should decrease as your hormone levels rise.

As SlowDragon also says, you absolutely need your nutrient levels tested. :)

Hi, well today I’ve been back to my gp and have discussed my ultrasound scan which showed my thyroid had reduced in size...and we discussed the blood results I’d had last time. Despite me quoting what I’d read and learnt about the Levothyroxine doses my gp is unwilling to increase me to 50mcg in case that turns me from hypo thyroid to hyper thyroid. The fact that my last blood test in December showed my TSH had dropped from 6.1 to 4.2 despite the fact the test was skewed by the fact my blood was tested late in the day (and not first thing before taking my levo) seemed to make no difference.

So tomorrow morning (first thing) I’m having a full set of tests done, well everything except the free T3 as they don’t do it...but everything else that was suggested, and I’ll get my results Friday afternoon.

I’m going to push to get my Levothyroxine increased to 50mcg, being on half the starter dose seems pointless.

Thanks for your help so far, if you have any other suggestions they will be gratefully received.

Your doctor really doesn't know much about it, does he. It is impossible for a hypo to become hyper, physically impossible. The thyroid cannot suddenly repair itself and start producing excess hormone. And, even if it could, taking levo wouldn't make it happen. Levo is thyroid hormone replacement. It doesn't repair or stimulate anything. Just replaces the hormone your thyroid can no-longer make itself.

He is confusing 'going hyper' with becoming 'over-medicated'. But that is absolutely not going to happen just with an increase to 50 mcg. And, even if it did, he wouldn't know about it just by testing the TSH. He would have to see the FT3 to know if you're over-medicated. And, if he doesn't even test the FT3, he's not going to know.

This man is dangerously ignorant. He is going to keep you sick. Your really need to see someone else that has at least half a clue!

Thanks for the reply. I agree that this doctor doesn’t know an awful lot...but thanks to the advice from yourself and others I’m at least going in there knowing more myself...which means I’m pushing in the right direction!!

Thanks again, I do appreciate it

You're welcome. :)

SlowDragon
SlowDragonAdministrator
in reply to markwsteele

Calcium is below range, this is very often due to low vitamin D

politely Insist on testing vitamin D, folate, B12 and ferritin

Plus coeliac blood test too

Or test privately

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

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

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

Hi, well today I’ve been back to my gp and have discussed my ultrasound scan which showed my thyroid had reduced in size...and we discussed the blood results I’d had last time. Despite me quoting what I’d read and learnt about the Levothyroxine doses my gp is unwilling to increase me to 50mcg in case that turns me from hypo thyroid to hyper thyroid. The fact that my last blood test in December showed my TSH had dropped from 6.1 to 4.2 despite the fact the test was skewed by the fact my blood was tested late in the day (and not first thing before taking my levo) seemed to make no difference.

So tomorrow morning (first thing) I’m having a full set of tests done, well everything except the free T3 as they don’t do it...but everything else that was suggested, and I’ll get my results Friday afternoon.

I’m going to push to get my Levothyroxine increased to 50mcg, being on half the starter dose seems pointless.

Thanks for your help so far, if you have any other suggestions they will be gratefully received.

SlowDragon
SlowDragonAdministrator
in reply to markwsteele

A TSH of 4.2 was far, far too high for anyone on Levothyroxine

Dose should have been increased immediately by 25mcg and retested 6-8 weeks later

Your GP is completely unaware of how to treat a Thyroid patient

Come back with new post once you get results and ranges

TSH should be under 2 (often we need it lower than that with Hashimoto's)

Once you have had coeliac blood test, assuming result is negative, you can consider trying strictly gluten free for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

If coeliac test is positive, you have to remain on high gluten diet until endoscopy. Should be max wait of 6 weeks

Understanding Hashimoto's

hashimotoshealing.com/under...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

NICE guidelines saying how to initiate Levothyroxine and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

Thanks, silly question time...is there a chance that boosting me from 25 to 50 mcg will push me from hypo to hyper or is my gp being overly cautious?

SlowDragon
SlowDragonAdministrator
in reply to markwsteele

GP is being ridiculously over cautious and ill informed

When taking replacement thyroid hormones, it doesn't add Thyroid hormones to our own body's production

In part because swallowing hormones as tablets in no way replicates the way our own thyroid hormone works

The 25mcg dose has lowered your TSH a bit, so your Thyroid is not working as hard, so you actually end up with less hormone over all

NICE guidelines saying how to initiate and increase.

Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

On Levothyroxine the aim is to increase dose slowly in 25mcg steps until TSH is between 0.4-1.5

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

sps.nhs.uk/wp-content/uploa...

Under GP care TSH at least under 2, but you may need to see endocrinologist, if GP won't increase

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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

 please email Dionne at

tukadmin@thyroiduk.org

Brilliant thank you. I’m taking as much ownership of this illness as I can, having worked for the NHS in the past for more years than I care to remember I’m very aware of how good and bad it can be.

SlowDragon
SlowDragonAdministrator
in reply to markwsteele

In case of thyroid disease, care and treatment is often extremely inadequate

Thyroid Uk has list of recommended thyroid specialists, if you need one

Most endocrinologists are Diabetes specialists and know little about thyroid

SlowDragon
SlowDragonAdministrator

On Levothyroxine the aim is to increase the dose slowly in 25mcg steps until TSH is between 0.4-1.5

Standard starter dose is 50mcg, not 25mcg. Unless over 50 years old or frail.

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

First step is to get your actual results and ranges and see exactly what has been tested

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.

Come back with new post once you get results and ranges

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially as your Thyroid antibodies are raised

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

See a different doctor

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when on just Levothyroxine to be adequately treated

sps.nhs.uk/wp-content/uploa...

Thank you for the information, very helpful indeed.

Thank you. I’ve got lots to research 👍🏻

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