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Help Understanding Results

Holiday74 profile image
19 Replies

Hi,

I posted on here a few months ago when I received a diagnosis of Hashimotos based on blood test results and was waiting for an ultrasound.I've since requested a print out of those results and have also had the scan. I've been taking 50mg of levothyroxine daily.h

The radiologist told me I there was a large swelling on my thyroid, I wish I'd asked to see the photos now,because I've received a text message from my Dr that the scan "suggests"and underactive thyroid and she will arrange a telephone consultation with me when I've hada blood test in a couple of weeks (she wants to test me after I've been on the medication for 2 months)

The blood test results are hard to decipher but I think this is it:

Se thyroid peroxidase Ab conc-> 1006 u/ml< 9.00u/ml

HbA1c 38( <48.00mmol/mol)

Serum TSHlevel 4.81( 0.27-4.20mU/L)

Serum free T4 level 12.8 (11.00-25.00pmol/L)

From what I can gather I am not showing as underactive from these blood test results, but I am showing most symptoms.I can barely move today I am so exhausted, I sleep easily 10+ hours a night and still wake up tired. I could barely open my eyes this morning. I feel so fed up not knowing what is causing this, being told I have antibodies but I'm not underactive but feeling awful all the time. I ache all over,all of the time.

If anyone has any suggestion on interpreting this I would be very grateful.

Many thanks

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Holiday74
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19 Replies
greygoose profile image
greygoose

Oh yes you most certainly are showing hypo! Stupid doctors don't know how to interpret blood test results. You are technically hypo when your TSH goes over 3. And your TSH is quite high enough for you to have symptoms.

Not that it's the TSH that causes the symptoms, you understand, it's the thyroid hormone T3, which they don't even bother to test! But a TSH that high is an indication of low thyroid hormones.

The other thyroid hormone, T4, looks low, but can't really tell because you haven't given the range. Please, always give ranges when giving results because they vary from lab to lab and we need the ranges that went with your results.

Your high antibodies mean that you have Autoimmune Thyroiditis, commonly calles Hashi's. So, things are going to get worse, not better. Hashi's slowly destroys the thyroid when your immune system attacks it, mistaking it for the enemy.

As to the scan, the large swelling is not 'on' your thyroid, it is your thyroid.Hashi's makes the thyroid swell. I wasn't aware that an ultrasound could pick up hypothyroidism, but it will show the damage done by the disease. Which, I suppose, comes to the same thing. But, I don't think asking to see the photos would have changed anything because doubtful you would have understood what you saw.

Levothyroxine is not medication in the normal sense of that word. It is not going to heal your thyroid or cure the disease. It is thyroid hormone replacement - the thyroid hormone T4. It replaces the hormone your thyroid can no-longer produce enough of to make you well. 50 mcg is just a starter dose, and usually the dose will be increase by 25 mcg after your blood test, and you should start to feel better. But it's a long, complicated journey. Nother ever happens fast with hormones. :)

Holiday74 profile image
Holiday74 in reply to greygoose

Thank you so much, I think I have updated with the ranges now. I feel so upset this week because I feel like I've been struggling for so long, without really being heard, and then on the one hand the validation of being told there is a reason, but at the same time being told I'm not testing in the range to be symptomatic yet (so go away and stop whining). I also have been diagnosed with Coeliac disease a few years ago, and also have anaemia for which I had to have a blood transfusion because my levels were on the floor. It all just feels too much.

greygoose profile image
greygoose in reply to Holiday74

It is a lot to deal with, yes.

You have to try and understand the mindset of doctors where thyroid is concerned. They do not learn much about it in med school. So, when a patient presents with signs and symptoms of hypothyroidism, they are instantly out of their depth and want to just stick their heads in the sand, ignore it and hope it will go away. It won't, of course. Your doctor would have no idea what a symptomatic ranges is - nor what the symptoms might be. In fact, there is not range in which one is symptomatic. Some people have raging symptoms with a TSH of 2, and others no symptoms at all with a TSH of 100. We're all different, and that is another irritating complication for doctors! lol

So, just ignore her when she says things like that, she doesn't know what she's talking about. You have to learn as much as you can about your disease and advocate for yourself as best you can. It won't be long before you know a lot more about it than your doctor! At least she has started you on levo, so you just have to take if from there. Remember to always get a print-out of your blood test results every time you have a blood test, post them on here, and then we can help you to understand them. :)

SlowDragon profile image
SlowDragonAdministrator

You are ready for next 25mcg dose increase in levothyroxine

On levothyroxine TSH should always be below 2

Most people when adequately treated will have TSH around or below one

Request 25mcg dose increase in levothyroxine from GP and bloods retested in 6-8 weeks time

Many people find different brands of levothyroxine are not interchangeable

Which brand of levothyroxine are you currently taking

Ideally get same brand for 25mcg tablet

Likely to need further increase in levothyroxine after next blood test

ALWAYS test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

When adequately treated Ft4 will be at least 60% through range minimum….or higher

ESSENTIAL to test vitamin D, folate, ferritin and B12

Have you had these tested?

What vitamin supplements are you currently taking, if any

Approx how much do you weigh in kilo

Guidelines on eventual dose levothyroxine required is approx 1.6mcg levothyroxine, per kilo of your weight per day. Some people will need more, a few need a bit less

Dose should be increased slowly upwards in 25mcg steps until symptoms are improved and Ft3 is at least 50% through range

Holiday74 profile image
Holiday74 in reply to SlowDragon

I'm not sure the brand of thyroxine either, it's a brown/gold box but can't seem to find any brand name other than at the bottom of the leaflet it says accord. Not sure if this is a brand though?!

helvella profile image
helvellaAdministratorThyroid UK in reply to Holiday74

Accord is a manufacturer. Their levothyroxine is supplied under their own name and also as Northstar and Almus.

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/wfhrlmb5983co...

From Google Drive:

drive.google.com/file/d/11z...

Holiday74 profile image
Holiday74 in reply to Holiday74

Also, can I request for these to be tested by my GP or do I need to order a test-at-home kit? Vitamin D, Selenium, etc. I still haven't ordered a kit to test for the T3, is it still worth doing this? Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to Holiday74

Ask GP to test vitamin levels

They should test you every year with coeliac disease

nellie237 profile image
nellie237 in reply to Holiday74

Hi Holiday,

Your GP has been very sloppy, not only with your thyroid treatment, but also with your coeliac monitoring. Per NICE:-

"How should I manage a person with confirmed coeliac disease?

Arrange for a person with confirmed coeliac disease to be reviewed at least annually in primary care."

Assess for nutritional deficiencies and whether iron, folic acid, calcium, and/or vitamin D supplementation is needed. See the CKS topics on Anaemia - iron deficiency, Anaemia - B12 and folate deficiency, Osteoporosis - prevention of fragility fractures, Vitamin D deficiency in adults - treatment and prevention, and Vitamin D deficiency in children for more information.

Assess the person's risk of osteoporosis and need for dual-energy X-ray absorptiometry (DEXA) scan in adults.

cks.nice.org.uk/topics/coel...

The British Society of Gastroenterologists recommend the following annual blood tests:

"Once the disease is stable and the patients manage their diet without any problems, annual follow-ups should be initiated. The physician should check on intact small intestinal absorption

full blood count,

ferritin,

serum folate,

vitamin B12,

calcium,

alkaline phosphatase

associated autoimmune conditions (thyroid-stimulating hormone and thyroid hormone(s),

and serum glucose),146 147

liver disease (aspartate aminotransferase/alanine aminotransferase)40 and

dietary adherence (anti-TG2 or EMA/DGP"

I think you'd be extremely lucky to get Iron infusions on the NHS...........It seems like the general policy is to let you get so ill that you end up in hospital............

"During the period April 2017 to March 2018, a total of 97 781 patients and 159 400 patients, respectively, had a primary and a secondary diagnosis of IDA, with the former accounting for 131 088 hospital admissions in England"fg.bmj.com/content/12/5/363

SeasideSusie profile image
SeasideSusieRemembering in reply to Holiday74

Holiday74

Almus comes in brown boxes and the name Almus will be at the bottom of the gold coloured strip which gives the dose size of the tablet, ie 50mcg. Almus tablets are made by Accord which is why the leaflet says Accord, the foil back of the blister pack should also say Accord. Accord tablets are reboxed as Almus for Boots.

SlowDragon profile image
SlowDragonAdministrator

See different GP and firmly request 25mcg dose increase in levothyroxine as per guidelines

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

When symptomatic….Increase dose levothyroxine to bring TSH between 0.4 - 1.5

See page 13

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Essential to test vitamin D, folate, B12 and ferritin too

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

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Persevere - have all guidelines printed and be ready to quote them

healthunlocked.com/thyroidu...

As you are coeliac it’s ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12

Highly likely to need significant levels of supplements

What vitamin supplements are you currently taking

Holiday74 profile image
Holiday74 in reply to SlowDragon

As far as I'm aware, I've never had any tests for any vitamins other than iron levels. I don't currently take any vitamins, but have been trying to read stuff and I know they are important. I know there were a few replies to my last post but I've been so overwhelmed by it all I've just put my head in the sand. I keep thinking, 'oh the next Dr I speak to will have more information' but it doesn't seem to happen. I'm not very happy with this GP but willing to listen to what she says at the next telephone appointment, and if I still feel like I'm being fobbed off I will request to speak to another. I keep reading about dietary changes, I'm obviously gluten free, and I'm hugely strict about this, but, depending on what you read, soya and dairy seem huge no-no's too. I've only been on thyroid for about 5 weeks, which is why I think the GP wanted to wait. Thank you for all your help, I am compiling a list of things to ask the Dr and will be able to use these links.

SlowDragon profile image
SlowDragonAdministrator in reply to Holiday74

it's a brown/gold box but can't seem to find any brand name other than at the bottom of the leaflet it says accord. Not sure if this is a brand though?!

Yes that’s the brand - Accord

Just to complicate matters …Accord don’t make 25mcg tablets

Request an increase in number of 50mcg tablets prescribed (rather than adding 25mcg tablets) and then cut an Accord 50mcg one in half to get 25mcg

Get weekly pill dispenser for your levothyroxine

Makes it MUCH easier to see if missed a dose ….as well as keeping the other half of 50mcg in pill dispenser for the next day

Get a pill cutter or a sharp craft scalpel

Generally everyone on levothyroxine should avoid soya

Dairy ….at this stage wait and see …you may not need to

How long since you were diagnosed as coeliac?

Dairy intolerance often improves on strictly gluten free diet

humanbean profile image
humanbean in reply to Holiday74

I'm obviously gluten free, and I'm hugely strict about this, but, depending on what you read, soya and dairy seem huge no-no's too.

It is unfermented soy that is an issue. Fermented soy is okay. greygoose knows a lot more about the kind of problems people can have with soy than I do.

...

And it isn't "dairy" that is the problem as such. It depends on the person. And it makes a difference whether people are "just" intolerant, or if they are allergic, and what they are intolerant or allergic to.

I think people should identify precisely what it is that they have issues with in connection with milk or cream or yoghurt or cheese, rather than eliminating a wide swathe of the foods from their diet because it makes their lives more difficult than it needs to be, and eliminates sources of protein and nutrients that can help us to stay well.

Some people feel fine with sheep milk or goat milk products but don't do well with cow milk products. Some people do poorly with lactose (i.e milk sugar) from all mammalian milks, some do badly with casein (milk protein). It might be possible for people to cope with lactose-free products.

Incidentally, eggs are not usually a problem, but for historical reasons people associate eggs with dairy and give them up too. Looking after chickens, and milking cows, sheep, and goats was considered to be "women's work" and they did their work with eggs and milk in the dairy. So eggs are now connected with dairy for that reason for ever more, even though from an allergy or intolerance point of view they are completely different to milk and should be tested for side effects separately from milk.

Personally, I gave up gluten and have gone no further. I love milk products, and I love eggs, so I'm not giving them up. I don't like most soy products so I very rarely eat soy at all. My life is hard enough as it is!

greygoose profile image
greygoose in reply to humanbean

I'm honestly no-longer sure that it is just unfermented soy that is the problem. I did read somewhere that fermentation actually makes the bad bits worse! But, I can't find that information again, and cannot find any other mention of it. So, personally, I just avoid it all.

I do wonder if the whole problem is not the quantities of soy that people consume. There's an awful lot of difference between the soy products - soy protein, soy flour, et al - that is consumed in the West, and the tiny amounts of soy as a condiment that are consumed in the east. It's almost impossible to find bread without soy flour in the UK, and I do wonder what damage that is doing to the population. Could it be responsible for the rise in hypothyroidism in recent years? It wouldn't surprise me.

humanbean profile image
humanbean in reply to greygoose

Thanks for the heads up. :( I didn't realise it could be all soy that is the problem. *Sigh*

I use Kikkoman gluten-free soy sauce in cooking very occasionally. But it still contains soybeans. :(

greygoose profile image
greygoose in reply to humanbean

Well, I'm not saying it is all bad, just that I don't know anymore. The tiniest drop of soy sauce makes me ill, but that's just me. But, if you don't feel any ill effects, maybe it's OK. I just don't know anymore. :(

SlowDragon profile image
SlowDragonAdministrator

Many people find Levothyroxine brands are not interchangeable.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord only make 50mcg and 100mcg tablets

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

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

Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

If you were to eventually try lactose/dairy free diet you would need lactose free levothyroxine

Teva, Glenmark or Aristo (100mcg only) are the only lactose free tablets

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

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.

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

SlowDragon profile image
SlowDragonAdministrator

Don’t wait for Dr to suggest testing

You request/insist they test

Or test privately if you can’t face the battle

Medichecks have 21% off at moment

You need to keep good records

Test vitamin D twice year when supplementing

May need higher dose in winter than summer

Test folate, ferritin and B12 at least once a year

Extremely common to need to supplement vitamin D and vitamin B complex continuously

You may find once thyroid levels are better you can reduce or stop iron supplements

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