Test Results help: Hi All, Could I please ask... - Thyroid UK

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Test Results help

Kay1566 profile image
11 Replies

Hi All,

Could I please ask for your advice again with my latest thyroid results, I have an appointment with my doctor next week, so would appreciate your thoughts before I go and see her.

I recently started on HRT, about three months ago so wanted to see how my thyroid was being affected.

I still do not feel brilliant, constantly tired, everything an effort, weight gain since my medication was lowered earlier this year is a stone and do not seem to be able to loose anything. Bad constipation. When I last spoke to my doctor she said my thyroid was fine and it was all because of the peri-menopause, which I understand as they have very similar symptoms.

Thanks for all your help.

Thyroid Hormones

TSH 0.60 mU/L (Range: 0.27 - 4.2)

Free T3 4.35 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine 18.5 pmol/L (Range: 12 - 22)

Autoimmunity

Thyroglobulin Antibodies X 322 IU/mL (Range: < 115)

Thyroid Peroxidase Antibodies X 396 IU/mL (Range: < 34)

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SlowDragon profile image
SlowDragonAdministrator

was test done early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

When were vitamin D, folate, ferritin and B12 levels last tested

What vitamin supplements are you currently taking

Very common to need small dose increase in levothyroxine after starting HRT

Is HRT patch or tablets

FT4: 18.5 pmol/l (Range 12 - 22)

Ft4 only 65.00% through range

FT3: 4.35 pmol/l (Range 3.1 - 6.8)

Ft3 is only 33.78% through range

Most people when adequately treated will have Ft3 at least 60% through range

Shows poor conversion rate and room for dose increase in levothyroxine

As you have Hashimoto’s are you on strictly gluten free diet and/or dairy free diet

If not get coeliac blood test done BEFORE trialing strictly gluten free diet

Kay1566 profile image
Kay1566 in reply to SlowDragon

Hi,

Thank you for your reply.

Yes the test was 7.45 in the morning and yes last dose of levothyroxine the morning before.

I currently take 112.5 levothyroxine, I was on 150 but it was reduced at the beginning of the year to 125 and then 112.5,

Yes it seems to be the same brand, accord 100 - teva 12.5.

So I am having to retake the ferritin and folate as the labs were unable to test with the blood sample. Vitamin D - 78 nmol/L range 50-100, I was defficient last year so supplemented, but my doctor told me to stop in March, so have not taken any since.

I am using the estrogen gel and progesterone tablets. I had read that you might need an adjustment once starting HRT, so asked my doctor if I could have a blood test to check how things were.

No I a not on a gluten free or diary diet, but have had coeliac tests and they came back negative.

Thanks for all your help.

SlowDragon profile image
SlowDragonAdministrator in reply to Kay1566

Teva brand upsets many many people

Accord don’t make 25mcg tablets

Request 50mcg tablets and cut into 1/4’s to get 12.5mcg

Teva is only brand that makes 12.5mcg (at high cost to NHS)

Much cheaper to get Accord brand

Teva contains mannitol as a filler, which seems to be possible cause of problems.

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

Aristo (currently 100mcg only) is lactose free and mannitol free.

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

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.

Government guidelines for GP in support of patients 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. 

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).

Netherlands (and Germany?) guidelines are for thyroid patients to always get same brand levothyroxine at each prescription 

healthunlocked.com/thyroidu...

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...

markvanderpump.co.uk/blog/p...

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

SlowDragon profile image
SlowDragonAdministrator in reply to Kay1566

Gluten

Always worth trying strictly gluten free diet with Hashimoto’s ….suggest you consider it in New Year

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 test positive for coeliac, but a further 80% find strictly gluten free diet helps or is essential due to 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 

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...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/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

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.

SlowDragon profile image
SlowDragonAdministrator in reply to Kay1566

Suggest you ……..Request increase in dose to 125mcg (and change dose to all Accord)

Retest in 6-8 weeks

come back with new post once you get folate, ferritin and B12 results

Are you currently taking any vitamin B complex or separate B12 ?

Kay1566 profile image
Kay1566 in reply to SlowDragon

Thank you Slow Dragon, I appreciate your help.No I am not taking any B supplements, but my B12 always seems high but no one knows why.

I shall ask to change the brand of my medication and speak to my GP next week, but whenever I ask to increase and explain why she won't have it and just says it was too low before, but I think for me to feel a bit normal I need my levels low, it is very frustrating.

Thanks again

SlowDragon profile image
SlowDragonAdministrator in reply to Kay1566

TSH is NOT a thyroid hormone

It’s the message from pituitary asking thyroid to function

Many, many people will have very low or suppressed TSH when adequately treated

As long as Ft3 is not over range you’re not over medicated

You may need to go over GP’s head and see an endocrinologist if GP won’t increase dose levothyroxine

Approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight is that typical dose is 1.6mcg per kilo per day

Some people need higher dose, few need a bit less

Most important results are always Ft3 followed by Ft4

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

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

gponline.com/endocrinology-...

NHS England Liothyronine guidelines July 2019

 

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

Page 9 

Test for Deficiency of any of the following: Vitamin B12, Folate,  Vitamin D, Iron

See page 13 

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

Graph showing median TSH in healthy population is 1-1.5

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

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

healthunlocked.com/thyroidu...

Kay1566 profile image
Kay1566 in reply to SlowDragon

Ok thank you, I will see if she will increase my medication. I weigh 12 stone now, used to be 11 at the beginning of the year.

Thank you for all the information I do appreciate your help, I shall write everything down so I am prepared.

SlowDragon profile image
SlowDragonAdministrator in reply to Kay1566

First step is always to get all four vitamins tested and optimal

SlowDragon profile image
SlowDragonAdministrator

Government recommends everyone supplements vitamin D October to April

Thyroid patients, and especially Hashimoto’s patients likely to need to supplement continuously to maintain optimal vitamin D

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100-125nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

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

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. 

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

The-Wasp profile image
The-Wasp

I feel like I'll never understand how to interpret thyroid and nutritional tests. Would be fantastic if there was a course to figure it all out! I guess it's a matter of reading these threads and other good sources until it becomes second nature. Hats off to these clever, kind admin on Health Unlocked!

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