Please interpret test results and reccomendations - Thyroid UK

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Please interpret test results and reccomendations

Naadi profile image
43 Replies

Hi,

First time iam posting on this great community! Please help me interpret my latest thyroid blood tests done on 15 Nov 2019 (pic attached)that i got done from Thriva privately. Also ,some of my other tests that the GP did and said were normal ,even though CRP and Sedimentation rate were above range:

Results of test on 20th September 2019:

Serum ferritin :93 ug/ (Range: 15-300)

Erythrocyte sedimentation rate :12mm/h

(Range: 3- 9 mm/h )

Serum C reactive protein 7 mg (Range : 0-4 mg/L)

Vitamin D: 63 nmol/L

I have really bad joint pain and very bad hair fall that the NHS Endocrinologist thinks might be link to my thyroid. Also, he suggested recently that i get T3 tablets from abroad. My blood tests are negative for rheumatoid arthritis.

Im currently on 50 mg Levothyroxine. Also taking iron, magnesium and selenium and zinc.

Please recommend what i should do as im not feeling good, have a one year old baby and doctor just keeps on delaying and making excuses for my symptoms. Also , any tests that i should request my GP to do?

Thanks in advance:),

Naadi

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Naadi
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SlowDragon profile image
SlowDragonAdministrator

Your high antibodies confirm you have autoimmune thyroid disease also called Hashimoto's

Your TSH is too high, FT4 and FT3 far too low

Your endocrinologist should have increased your dose of Levothyroxine to 75mcg

Likely your endocrinologist was Diabetes specialist.....because these results clearly show you are under medicated

See GP for 25mcg increase in Levothyroxine

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

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. Teva is the only brand that makes 75mcg tablet.

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

Low vitamin levels affect Thyroid hormone

Ask GP to test vitamin D, folate, B12 and ferritin

Always get actual results and ranges and come back with new post once you get results

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

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 strictly gluten free diet for 3-6 months.

You will see thousands of posts about gluten intolerance on here

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...

Levothyroxine should always be taken on 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 more effective taken at bedtime

verywellhealth.com/best-tim...

All medication at least two hours away from Levo. Some like HRT, PPI's, magnesium, iron or vitamin D, at least four hours away

Bloods should be retested 6-8 weeks after each dose increase

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results

Naadi profile image
Naadi in reply toSlowDragon

You are awesome. Thanks for the information:) I had already thought of asking GP for these tests. Hope she agrees. Will talk to her about increase in levothyroxine.

Thanks again :)

Naadi profile image
Naadi in reply toSlowDragon

My ferritin test and Vit D test were done on 20th September. Vit D level was 63 nmol/L and ferritin was 93. Should i still ask for test as they were done 2 months ago?

Also, i just checked my tests from September 20th which the Endocrinologist saw, my TSH was 0.82 then.. but i hadn't fasted then although i hadn't taken levothyroxine. Thriva online testing company suggested i fasted for test accuracy. Maybe that is why Endo didn't increase dose cause it ws 0.82 then. These tests results are from yesterday from Thriva.

Thankyou for the wealth of information:)

SlowDragon profile image
SlowDragonAdministrator in reply toNaadi

So the September result perhaps explains why endo didn't increase dose. Was there a FT3 and FT4 result in September?

Ask GP to test B12 and folate

GP only allowed to test vitamin D once a year

Vitamin D is likely not high enough. Many of us with Hashimoto's find we need vitamin D optimal, at least around 80nmol and around 100nmol may be better

Once you Improve level, you will probably need on going maintenance dose to keep it there.

Retest twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Naadi profile image
Naadi in reply toSlowDragon

Yes maybe. No GP didn't do FT3 . My surgery doesn't do T3 tests. Serum T4 level in September was 18.3.

Im currently taking a spray of Vit D and K recommended privately by my tricologist. Wierdly the tricologist knows more about my thyroid issues and vitamins then the GP or Endocrinologist. She was the one who recommended all the Multivitamins.

SlowDragon profile image
SlowDragonAdministrator in reply toNaadi

GP and endo usually completely unaware of significance of vitamin levels

So exactly what vitamin supplements do you currently take apart from vitamin D plus K2?

Multivitamins are not usually recommended on here. Too little of what we do need plus they very often contains iodine not recommended with Hashimoto's

drknews.com/iodine-and-hash...

ncbi.nlm.nih.gov/pubmed/970...

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...

Don't understand why your NHS Endocrinologist did not increase your Levothyroxine to 75mcg and prescribe you T3 if he wants you to take that too.

Don't agree with him telling you to 'buy it from abroad '.

Best to have other nutrients levels tested also in particular :

Vitamin D, B12, Folate and Ferritin.

Please add in the ranges of the other tests. Also include dates of tests.

Naadi profile image
Naadi in reply toMary-intussuception

Have added in the ranges and dates to original post now. Thankyou for pointing that out :)

JAmanda profile image
JAmanda in reply toMary-intussuception

I completely agree. The doctor is outrageous!

SlowDragon profile image
SlowDragonAdministrator

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...

You won't know if you need addition of T3 until Levothyroxine is increased high enough to bring FT4 up into top third of range and all four vitamins optimal

Naadi profile image
Naadi in reply toSlowDragon

Ohh ok thankyou for the information!^_^

SlowDragon profile image
SlowDragonAdministrator

Joint pain is frequently low vitamin D

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

Naadi profile image
Naadi in reply toSlowDragon

My Vit D levels were low a few months ago but in Sept it was 63. The results just said Serum vitamin level so will confirm from GP. I take vit D supplement daily. What range should my Vit D level be?

Lora7again profile image
Lora7again in reply toNaadi

Try taking the vitamin D spray you will absorb it much more easily. I would change your Doctor if I was you because he is incompetent to keep you on a starting dose of 50mcg when he should of increased it after 6 weeks ... does he actually know about thyroid disease or is he a diabetes specialist like most of the Endocrinologists in the NHS.

Naadi profile image
Naadi in reply toLora7again

Im taking a vit d spray thankyou. He only saw my September results. These results i got this week.

SlowDragon profile image
SlowDragonAdministrator in reply toNaadi

Aiming to get vitamin D up to at least 80nmol and around 100nmol may be better

Mouth spray vitamin D works well with Hashimoto's as avoids poor gut function

Naadi profile image
Naadi in reply toSlowDragon

Iam spraying 3000iu Vitamin D spray with K2, 3 sprays daily. Do you have any recommendations for good well priced Vit D spray with maybe higher dosage? Thankyou SlowDragon. You aren't slow at all but a genius dragon!😇

Naadi profile image
Naadi

Thankyouuuu everyone for your indepth replies! I also felt it wierd Mary-intussuception that he wants me to purchase it from abroad. He wrote letter to GP that i be given funding for a trial but won't be possible in long term due to funding. He was like it costs more than £2000 per person for t3 medication when my husband said that is the amount of tax he pays monthly. I checked online, it costs £258 monthly. However, i can get t3 from Pakistan. Do you think it is worth the hassle asking GP about trial of it?

Mary-intussuception profile image
Mary-intussuception in reply toNaadi

You could ask, but 1) Your LT4 dose has not yet been increased, monitored & stabilised. 2) As far as I'm aware, in the UK, it is only Endocrinologists that can decide on and prescribe T3.

I note that your Endocrinologist is not aware of the 15 November results ? You should contact him. Take a photo copy to his secretary or email her.

Also you haven't given FT3 & FT4 or T4 results from earlier tests done by NHS and what dose, if any, Levothyroxine then.

Looks like you don't have Vitamin D deficiency. Your Ferritin is good too.

Are you taking anything apart from 50mcg Levothyroxine?

Any multivitamins or minerals ? Any supplements at all? Do you eat fortified cereals?

ALSO :

CRP not too bad - but do you know why they tested CRP and ESR (Inflammation markers) ?

Have you had an Ultrasound scan of your Thyroid? Worth asking GP to send you for one?

Naadi profile image
Naadi in reply toMary-intussuception

Lunch time: selenium and zinc x 1

- Before bed: 3000iu Vitamin D spray with K2, 100mg magnesium glycinate, and 1 x Florisene Iron Tablet.

I take these Multivitamins above daily and eat oatmeal daily.

They tested inflammation markers cause my joints really hurts and with time more joints getting effected.

No i haven't done ultrasound of thyroid. What is that needed for?

I have appointment with Gp on Friday. Don't know if she will entertain requests for blood tests and ultrasound but if i have health issues and have a little baby to look after, it should hopefully be sorted out.

Mary-intussuception profile image
Mary-intussuception in reply toNaadi

My first Ultrasound scan showed my Thyroiditis . GP requested it after I asked him to. Then refered my to the Endocrinologist who tested the TPO along with others.

However, more recently had scan of Thyroid & Parathyroids which revealed small cyst on Thyroid and small cyst on a Parathyroid. Believed to be benign, but monitored annually.

Will you be asking about the ESR and CRP results on Friday? Hasn't the GP requested xrays of any joints?

Any Arthritis in the family ? Any Psoriasis in the family?

Naadi profile image
Naadi in reply toMary-intussuception

Oh ok. I will discuss scan with her in next appointment as she says that she can't pay attention to all issues in 10 mins. I did ask about inflammation markers, she said they are normal. Only one joint was xrayed and it came normal. My aunt has bones issues as they break over a slight fall.

I think my cousin has some psoriasis but not sure she is very young. Im going to request GP for referral to Rheumatologist as she had told me she will refer me if pain doesn't go and it has been one year.

Mary-intussuception profile image
Mary-intussuception in reply toNaadi

Good Idea, I was thinking about referal to Rheumatologist. Mine wasn't brilliant, but some are good, I hear. Hopefully you'll get full bloods done ( lots of Antibodies ). Then you can request copies of your hospital records, free of charge, and see everything for yourself.

You could ask the Rheumatologist about the ESR & CRP results.

SlowDragon profile image
SlowDragonAdministrator in reply toNaadi

It's too early to see if you need T3

Getting Levothyroxine dose high enough and all four vitamins optimal is first step

Plus trying strictly gluten free diet

But currently thousands UK patients are being this denied essential medication

mjauk.org/wp-content/upload...

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

Naadi profile image
Naadi in reply toSlowDragon

I know because of the price hike.. hope they sort this out soon.

SlowDragon profile image
SlowDragonAdministrator in reply toNaadi

NHS T3 is currently £173 per 28 tablets ...so dropping slowly

If you eventually need it then endocrinologist should prescribe it

Naadi profile image
Naadi in reply toSlowDragon

Great! My endocrinologist didn't hv much clue... he was like its more than £2000/ month for T3!

Batty1 profile image
Batty1

I had severe joint pain and my rheumatoid test was negative but was diagnosed with psoriatic arthritis process of elimination and life long love affair with psoriasis .

Naadi profile image
Naadi in reply toBatty1

Ohh bless you! Did a Rheumatologist diagnose you or GP?

Batty1 profile image
Batty1 in reply toNaadi

My GP couldn't find her way out of a paper bag with a flashlight. It was my eye specialist who diagnoised me it was because I had red inflammed eyes on my visit and my Rheumotologist confirmed after lots of xrays and blood test prior to eye doc and Rheumy I spent lots of time housebound because of severe hip,knees,ankles and feet pain it attacks my tendons being told I'm too active you need to take a break.

Naadi profile image
Naadi in reply toBatty1

My GP is pretty hesitant on referrals to Rhemoutoligist and im in so much pain. Pretty frustrating but alot of people have it alot worse.

Batty1 profile image
Batty1 in reply toNaadi

Being in pain everyday with no end in site can cause alot of emotional issues especially if your active and now your side lined from pain your GP is wrong and could actually create a bigger problem if you actually do have some form of arthritis and I know this first hand my lack of treatment destroyed my health I'm still unable to walk or stand properly 2 yrs later because of the joint damage.

Naadi profile image
Naadi in reply toBatty1

Oh bless you prayers for your health!! You are right ! She hs been telling me that it is because of post baby pains and aches. All my friends who had baby don't have such severe aches where they can't pick up baby. My baby is 14 months now.

Im going to take my husband to appointment on Friday and wage a war. Thankyou

humanbean profile image
humanbean

Serum ferritin :93 ug/ (Range: 15-300)

I just wanted to point out that your ferritin is only 27% of the way through the range. This is too low.

Ferritin is optimal for many of us when it is 50% of the way through the range or a little bit over. For the range you've given - (15 - 300) - mid-range is roughly 160.

Doctors will dismiss ferritin results like yours, and certainly would never agree that they need to be improved, so we are left to our own devices, as so often happens.

You could try adding foods to your diet which contain good levels of iron. Liver is an obvious source, but it is a bit tougher if you are vegan or vegetarian. To find iron-rich foods, try these links :

dailyiron.net/

apjcn.nhri.org.tw/server/in...

Mary-intussuception profile image
Mary-intussuception in reply tohumanbean

I thought I'd read on here that Ferritin should ideally be at least 70 .

humanbean profile image
humanbean in reply toMary-intussuception

Yes. In my opinion it's misleading, but it is the figure that is quoted on STTM, as far as I remember, and it has spread everywhere. STTM rarely mentions reference ranges and rarely mentions units of measurement (and sources). Without these I think an optimal level is likely to be meaningless. (You can often get away without mentioning units of measurement, but the reference range is essential for someone to make sense of the numbers they get in testing. )

Is 70 okay when the reference range is 13 - 150, or 15 - 300, or 30 - 400 or some other range?

A level of 70 is 42% of the way through the range of 13 - 150.

A level of 70 is 19% of the way through the range of 15 - 300.

A level of 70 is 11% of the way through the range of 30 - 400.

In my opinion these three different results are not equivalent. If my ferritin was 11% of the way through the range I think I would be on my knees. But I would be probably okay if the result was 42% of the range.

The first time I got my ferritin level close to 70 (to be exact, 67.7) it was only 14% of the way through the range. The reference range was 13 - 400. I felt appalling.

humanbean profile image
humanbean in reply tohumanbean

Just to add to my previous post...

After getting my ferritin to 67.7, the next time I tested it it was 41.5. So you would think it was getting worse. But it was 21% of the way through the reference range and I was starting to feel a tiny bit better.

SlowDragon profile image
SlowDragonAdministrator in reply tohumanbean

This Underlines exactly why we always need reference ranges

Mary-intussuception profile image
Mary-intussuception in reply tohumanbean

I've only come across the 15 - 300 range.

Also seen some weird results lately - 13 Ferritin (so officially LOW) with 'in range' Haemaglobin.

In another person : very high in range Ferritin (250 or 270?) , yet LOW (just below range) Haemaglobin.

I think they should test Transferrin Saturation , full iron panel or refer to Haematology - but the NHS . . . . .

humanbean profile image
humanbean in reply toMary-intussuception

I agree about more info being needed for routine iron testing. I wouldn't dare take iron pills unless I had a proper iron panel a couple of times a year. But then I'm only taking a relatively small maintenance dose.

If I was taking enough iron to raise my levels I would test a lot more often until such time as I knew how well I absorbed the stuff.

Naadi profile image
Naadi in reply tohumanbean

Ohh ok thankyou.! I take 2 iron tablets daily so i think i need to be strong and just eat some liver to increase iron.

Mary-intussuception profile image
Mary-intussuception in reply toNaadi

Do you like Broad Beans? They are high in Iron (I can't usually eat them, not in season now anyway ). Lentil soup? Easy to make , if you're ok to stand whilst stirring. But the tinned variety is OK.

Look into pulses and nuts for iron content and how absorbed. Always eat what you like.

If you can, eat liver (I have difficulty with all meat) but do you like an egg for breakfast? A banana? Make sure to drink some Tropicana orange juice (with extra bits) too, or a Vitamin C tablet to help absorption.

Do you have your bloods (including FBC & Ferritin ) monitored by GP ? At least annually?

Naadi profile image
Naadi in reply toMary-intussuception

Oh thanks. That is a good idea. I do like beans and pulses! Im not really into liver but i will make some tasty curry and try it. I do take a banana daily. Egg not really a daily thing i only hv it on weekends.

I do get my blood done annually but only because some issue comes up. I will get them done often now and check iron. Thanks for all info :)

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