weird thyroid results

[Pauwi9]

my serum tsh level is 4.72mul and my serum free t4 is 21.7 pmol/l yet I have bad memory speech problems etc,doctor says this is satisfactory I don’t agree anyone know why these results are so off?

[Jaydee1507 Administrator]

You really need to get a full thyroid profile done to include FT3, also key vitamins - ferritin, folate, B12 & D3. Have these been run lately? Many people here pay for private tests to make sure they know whats happening. NHS tests are inadequate.

Have you also tried a gluten and dairy free diet? This helps many with Hashimototo's.

Your TSH is far too high. Take evidence to your GP fr keeping TSH lower. healthunlocked.com/thyroidu....

[Pauwi9 in reply to Jaydee1507]

ye

Medical records

[Pauwi9 in reply to Pauwi9]

yeah I’ve been on yhyroxine for about 10 years,was just curious as to why my tsh was abnormal and my t4 seems normal

[Pauwi9 in reply to Pauwi9]

I’ve had all the ferritin b12 tests etc all were normal,I did try a gluten free diet for a time didn’t really make any difference 😊

[SlowDragon Administrator in reply to Pauwi9]

please add actual vitamin results and ranges

Was thyroid test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Which brand levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

[Jaydee1507 Administrator in reply to Pauwi9]

Do you take your Levo on an empty stomach 1 hour away from food or coffee?

Your FT3 is on the low side at 40%. It's hard to know without full vitamin results but you might do better with some added T3. Have you considered that?

Vitamin tests that are 'normal' are not good enough. They need to be supplemented to get them to OPTIMAL which is in the top quarter of the range. What were the results?

[Pauwi9]

I do take thyroxine with breakfast but I’ve always done that,would I need to go private to get t3 on prescription?

[Jaydee1507 Administrator in reply to Pauwi9]

I can recommend taking your levo at bedtime. Then it will be able to absorb a lot better and help your symptoms more plus avoiding strange blood results. It is a very fussy hormone and won;t be able to do it's job well if taken with anything other than water for an hour either side.

It is possible to get T3 on the NHS but not easy and can be a very slow process. If you possibly can then privately is a faster more assured option. You can start a new post and ask for recommendations which will have to be sent to you via private message or email Thyroid UK for their list.

[Pauwi9 in reply to Jaydee1507]

ok will do thanks

[SlowDragon Administrator in reply to Pauwi9]

Levothyroxine should be taken on empty stomach and then nothing apart from water for at least an hour after

You need to start taking levothyroxine correctly

Can be more convenient taking at bedtime….possibly more effective

If you 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

Always get same brand levothyroxine at each prescription

Retest full thyroid and vitamins after 6-8 weeks

[SlowDragon Administrator]

Reading your previous posts from several years ago

Can’t see any thyroid antibodies test results

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Presumably you do have autoimmune thyroid disease as you were tested for coeliac disease

No vitamin D, folate, B12 results here

Exactly what vitamin supplements are you currently taking

How much levothyroxine are you taking

Approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight is approximately 1.6mcg per kilo of your weight per day

[Pauwi9 in reply to SlowDragon]

I was tested for hashimotos doctor said it was normal,this was a few years ago,I take a centrum multivitamin every morning I weigh 79kg,I take 100mg one day and 75mg on alternate days as I had a couple of heart problems from my dose being too high at 1 point

[SlowDragon Administrator in reply to Pauwi9]

Strongly recommend you get BOTH TPO and TG thyroid antibodies tested

Significant minority of Hashimoto’s patients only have high TG thyroid antibodies

NHS currently only tests TG antibodies if TPO antibodies are positive

if both antibodies are negative

20% of Hashimoto's patients never have raised antibodies 

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

[SlowDragon Administrator in reply to Pauwi9]

So guidelines suggest 126mcg per day

Get full thyroid and vitamin testing 8-10 weeks after taking levothyroxine correctly on empty stomach and nothing apart from water after

all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

[SlowDragon Administrator in reply to Pauwi9]

Multivitamins never recommended on here

Most contain iodine not recommended for anyone on levothyroxine as levothyroxine contains all iodine likely to need unless long term vegan even then would need tested before supplementing

Suggest you stop multivitamins and test in few weeks

[SlowDragon Administrator]

Gluten and autoimmune disease

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. 

 A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A 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 may 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.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

Hashimoto’s and leaky gut often occur together

[shaws Administrator]

I am not medically qualified but would suggest that gaining weight could be due to not being given a sufficient dose of thyroid hormones. The aim is a TSH of 1 or lower when on an optimum dose of replacement hormones.

[Lovecake]

As usual all the answers for you are excellent.

I just wanted to add that my sister had low B12 and it caused the symptoms you listed. She thought she had early onset dementia. The doc said “normal” but it wasn’t. She had some B12 injections and felt human again. Her thyroid level was also low at the same time.

[shaws Administrator in reply to Lovecake]

I am not medically qualified but my Mother had pernicious anaemia (and I also have it).

She had a B12 injection every 3 months but, unfortunately, she developed stomach cancer (due to GP stopping injections, I believe) and died. My sister and I had to plead for pain relief at the end of her life - even though Mother was unconcious we were very, very aware she was in awful pain.

My GP has told me I can have as many P.A. injections as I feel I need, so I have T3 every month now.

[Lovecake in reply to shaws]

I’m sorry to hear about your mum. How terrible for her, and distressing for you and your family.

My sister doesn’t have PA, but they have stopped her injections and she just gets rubbish tablets from her GP now. I think I’ll nag her to get checked properly again…….

[shaws Administrator in reply to Lovecake]

I have perncious anaemia as well as hypothyroidism. I used to get an injection every 3 months but new GP has told me I can get as many injections I feel I need, so get a monthly jab now instead of quarterly.

[tattybogle]

Hi Pauwi9

Did you take your levothyroxine on the day you had that blood test ?

What time was the blood test done ?

If the last dose was close to the test that may explain why the fT4 looks high.

What is the lab range used for that fT4 test ?

[Pauwi9 in reply to tattybogle]

hi I took my thyroxine at around 7 and my test was just after 8 so I think your right,I could probably ask for a retest but not sure if they will agree

[tattybogle in reply to Pauwi9]

So... it's it's was just over an hour ( an also if you ate food with it ) then it's very hard to be sure if that last dose of levo had time to get into your blood ,or not , before you took that fT4 test .

Everyone's speed of absorbing the levo into the blood after swallowing it is going to be a but different . When taken on an empty stomach it 'usually' takes a couple of hours for the T4 level in the blood to go up to its highest , (with food , it would probably take longer) ... it's impossible to be sure , everyone's gut works at a different speed .

After it's been absorbed , the FT4 level stays at a high peak between about 2 -6 hours after taking the tablet ,, then falls slowly to it's settled level .. so it's best to always take the last dose 24 hours before the blood test .. and have a 9 am test (and take that days tablet straight after) ..that way you get comparable results and avoid measuring the 'peak '

Time of last dose only affects the FT4 result , not the TSH result .

TSH result is affected by time of day .. highest middle of the night .. falls to lowest around 1-3pm .. the rises again .

NHS won't give a retest for this ..they don't think it makes much difference .... but it's good to understand it for yourself ...and for future tests.