Blood thyroid results - help required please - Thyroid UK

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Blood thyroid results - help required please

kezzabird30 profile image
29 Replies

Can someone please help explain my thyroid antibody results? I have been on Levothyroxine for 8 years. I am currently on 150mg a day. I feel awful every single day. I paid for private bloods as my doctor would not test for FT3 and antibodies. I had really hoped that these results would show me some reason why I feel so unwell but as usual, as I am in range, it is deemed I am ok. I am at my wits end. My family all want me to go on anti depressants as does my doc. I only feel sad because I feel so unwell and not because I am depressed. Stop me feeling so exhausted, then I am happy! It is like no one believes me! I am at the point where I feel like just stopping my tablets and seeing what happens as I am sure the levo makes me feel worse. Please help~:

I had the blood taken venously. I did fasting and did not take medication that morning.

Many thanks for reading x

Range for Thyroid peroxidase antibodies is 0 - 34

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kezzabird30
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SlowDragon profile image
SlowDragonAdministrator

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

Presumably you knew that cause of your hypothyroidism is autoimmune thyroid disease?

Did you do this test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Do you always get same brand of levothyroxine?

Your results show you are under medicated and need dose increase in levothyroxine

Ft4 is only 38% through range

Ft3 at 40% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Most people when adequately treated will have TSH well under one

Ft4 should be in top end of range....typically at least 18-20

Request GP increase levothyroxine by 25mcg and retest in 6-8 weeks time

Approx how much do you weigh in kilo

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

If you are currently on dose recommended by weight .....then results suggest you have poor gut absorption or possibly lactose intolerance

Lactose intolerance is extremely common with Hashimoto’s and frequently results in needing higher than average dose levothyroxine

kezzabird30 profile image
kezzabird30 in reply to SlowDragon

Hi Slow Dragon, many thanks for you reply.

I do not always get the same brand of Levothyroxine. Is there a specific brand that people get on better with?

I did take my test early morning after drinking only water. My last Levo intake was 24 hours before bloods

I weight 82kgs.

Do you know of any books that provide recipes for diet of Hasi?

Regards

Kerry

SlowDragon profile image
SlowDragonAdministrator in reply to kezzabird30

So at 150mcg you are on relatively high dose levothyroxine already for your weight

Guidelines on dose by weight is approx 132mcg.

So likely poor absorption or different brands upsetting you

Do you ALWAYS take levothyroxine on empty stomach and then nothing apart from water for at least an hour after. Ideally no calcium rich foods within 4 hours

Many people find it more convenient and possibly better absorption to take levothyroxine at bedtime

Do you have weekly pill dispenser so that it’s easy to see if you have missed a day

Ask GP for coeliac blood test BEFORE considering trial on strictly gluten free diet

Suggest you start with gluten free diet first

Possibly consider lactose free diet in few months

kezzabird30 profile image
kezzabird30 in reply to SlowDragon

Yes I always take on an empty stomach. I do take every day at the same time.

SlowDragon profile image
SlowDragonAdministrator

Poor gut function with Hashimoto’s 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

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

healthcheckshop.co.uk/store...?

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...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

As already mentioned.....Lactose intolerance is also very common with Hashimoto's

ncbi.nlm.nih.gov/pubmed/240...

Lactose intolerance was diagnosed in 75.9 % of the patients with HT

read.qxmd.com/read/24796930...

These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients

Lactose intolerance often improves after year or so on strictly gluten free diet

coeliac.org.uk/information-...

greygoose profile image
greygoose

I had really hoped that these results would show me some reason why I feel so unwell

Well, they do show you a reason. Your TSH is too high - should come down to 1 or under when on thyroid hormone replacement - and your Frees are too low. Frees should be up in the top third of the range, or wherever you need them to be to feel well. It's a very personal thing. But, you are under-medicated, whatever your GP may say.

The high antibodies are saying that you have Hashi's. I take it you didn't know that. But, it's not the antibodies making you feel unwell. It's the low thyroid hormones. There's not much you can do about Hashi's - except try a gluten-free diet to see if it helps with some of your symptoms. Hashi's people very often have Coeliac disease - have you been tested for that? - or are gluten-sensitive. But, if you want to be tested for Coeliac, don't give up gluten until after the test. :)

kezzabird30 profile image
kezzabird30 in reply to greygoose

Hi greygoose

No I did not know I had Hashis to be honest.

I was thinking that I wanted to stop my medication but it appears I am not on enough? I really struggle to get my doctor to take me seriously without trying to get me to take Anti depressants.

Do I need to have T3 as well as Levo?

many thanks for taking the time to reply x

greygoose profile image
greygoose in reply to kezzabird30

Difficult to say for certain, while you are under-medicated, but it doesn't look as if you have a conversion problem. So, that's one less battle you have to fight. :)

I'm afraid you really can't stop the levo, because with Hashi's, things are just going to get worse, not better, I'm afraid. It's for life.

kezzabird30 profile image
kezzabird30 in reply to greygoose

I have not been tested for Coeliac disease. perhaps I will look at that as my next test :)

greygoose profile image
greygoose in reply to kezzabird30

Sounds like a good idea. :)

SlowDragon profile image
SlowDragonAdministrator in reply to kezzabird30

Get coeliac blood test done ASAP ...ideally via GP

Also request 25mcg dose increase in levothyroxine at same time

Coeliac blood test Costs £20 online

You don’t need any obvious gut issues to find that gluten free diet is an astonishing improvement

SlowDragon profile image
SlowDragonAdministrator

What vitamin supplements are you currently taking ....if any

Your vitamin levels are pretty good

You also have good conversion of Ft4 to Ft3.....but just not on high enough dose levothyroxine

If you are lactose intolerant you will need lactose free levothyroxine

Many people find Levothyroxine brands are not interchangeable.

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)

Teva, Aristo and Glenmark are the only lactose free tablets

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

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

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/medications-f...

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.

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

kezzabird30 profile image
kezzabird30 in reply to SlowDragon

So I take Berroca daily as well as Selenium 200ug and Vitamin A-C-E . The doctor from medichecks has said my iron levels are too high but i do not take any Iron supplements

SlowDragon profile image
SlowDragonAdministrator in reply to kezzabird30

Do you ensure vitamin supplements are at least 2 hours away from levothyroxine

High ferritin is common with Hashimoto’s, this due to inflammation

Are you post menopause? This also tends to increase ferritin levels

GP could do full iron panel test to see if iron is also high. (Unlikely) Ferritin is not considered high for hemochromatosis unless it’s up over 800 plus

kezzabird30 profile image
kezzabird30 in reply to SlowDragon

I usually take levo at 7am then I do not eat or take supplements until 10am. I am 46 and not yet in the menopause stage I do not think! :) Although i do feel like i am 90 years old with the bone aches and tiredness :(

greygoose profile image
greygoose in reply to kezzabird30

You're wasting your money with Berroca. That won't do you any good. Cheap ingredients, and not enough of them. Best to spend your money on supplements you know you need rather than taking pot-luck with a multi.

kezzabird30 profile image
kezzabird30 in reply to SlowDragon

I will also look at my brand when I get home

kezzabird30 profile image
kezzabird30 in reply to SlowDragon

Found a packet in my hand bag and I am mainly on accord brand

SlowDragon profile image
SlowDragonAdministrator in reply to kezzabird30

Beware Accord don’t make 25mcg tablets

If increasing dose to 75mcg ....cut a 50mcg Accord tablet in half

Ask GP just to increase prescription number of 50mcg tablets per month

kezzabird30 profile image
kezzabird30 in reply to SlowDragon

I am on 150mg at the min made up of 100mg and 50mg so will ensure I stick with accord and like you say, cut a 50mg in half if they increase my dose. thank you for your advise x

SlowDragon profile image
SlowDragonAdministrator

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

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

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

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)."

(That’s Ft3 at 58% minimum through range)

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

kezzabird30 profile image
kezzabird30 in reply to SlowDragon

Lovely thank you for your response. A few things to read and take in there but will have a good read up. Thank you for your help x

JAmanda profile image
JAmanda

I’d be asking for a small (25mcg) increase to try to alleviate your symptoms but keep your t3 and t4 in range. I doubt your doc/Endo will fight too much about it but to keep them on board try asking ‘for their support to trial a small increase to see if it will help symptoms’. After 6 weeks on the new dose test again and go back for a further increase.

kezzabird30 profile image
kezzabird30 in reply to JAmanda

Thank you I will try that. My doctor is not that sympathetic to my results as long as I am in range, then that is it~!

SlowDragon profile image
SlowDragonAdministrator

Vitamin D is not high enough

Aiming for at least around 80nmol and around 100nmol maybe better

Recommend Better You vitamin D mouth spray with vitamin K2

As Greygoose says .....recommend you ditch the Berocca and take good quality vitamin B complex

supplementing 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 will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

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...

kezzabird30 profile image
kezzabird30 in reply to SlowDragon

Ok had ran out of berroca anyway, so will give other supplements a try. Lots to read and take in but appreciate everyone's comments. Helps me feel not so alone x

SlowDragon profile image
SlowDragonAdministrator in reply to kezzabird30

Hopefully GP should agree to dose increase in levothyroxine

Print out the links I gave you about TSH should be under 2 on levothyroxine

Be prepared to push for increase in levothyroxine.....as 3-6 month trial if necessary

serenfach profile image
serenfach

Just to say you are not alone - most of us with Hashi's have been where you are now. Many of us felt awful and were ignored by the medical profession who for some reason seem to think if we are in range, we should feel well. And if we still say we feel ill, we are sent away with AD's. It is shameful the way we are treated.

I found this forum, and I think it literally saved my life. You have been given a lot of information so just go through it slowly, and give yourself "thinking time" to take it all in. Keep reading and take your own power back.

It can be an upward and slow journey, but worth it on the day you wake up and think "what job shall I tackle today" instead of "I just want to go back to sleep". It will happen.

Oh, and here is a tip to get your GP to give you the increase you need - ask about him prescribing T3 (liothyronine), and he will be so scared he will give you the increase to make you go away! :)

Sending a gentle hug.

kezzabird30 profile image
kezzabird30 in reply to serenfach

Thank you much serenfach. I totally agree with the doctors. I am working my way through the info.

Gentle hug gratefully received

K

x

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