Recommended time between blood tests when upping dose?

[MayJuneJuly]

When you've been given an increase in dose due to high TSH levels, whats the normal or recommended time till your levels are checked again?

Had my levels checked in Feb and needed to up my dose. Told to rebook a blood test in Aug. Starting to feel crappy again though now after previously feeling better.

Thank you for any advise.

[SeasideSusie Remembering]

MayJuneJuly

whats the normal or recommended time till your levels are checked again?

I don't ever remember having mine checked when a GP has increased my dose but that's going back a long time, although I can't see anything specific in the guidelines other than for initiation and titration where they say to adjust dose every 3-4 weeks but nothing about retesting after dose change.

However, we always suggest here that retesting is done 6-8 weeks after a dose change.

What were the test results that prompted the dose increase? Can you post them with their reference ranges (ranges vary from lab to lab).

SlowDragon Have you got anything on this please?

[MayJuneJuly in reply to SeasideSusie]

Hi, thanks for the reply! I took one of the blue horizon tests. I've attached my results. I sent that to my doctor and she agreed a dose increase was needed. She then advised to have my bloods checked again in Aug.

I have never had a stable dose since being diagnosed last Aug, I got pregnant a month after being on levo 25mg and then had it increased from the initial 25mg to 75mg. Was regularly checked throughout pregnancy and levels were great. The blue horizon one was my first blood test post pregnancy without breastfeeding.

I'm confused what the guidelines are for being regularly checked I guess? I tried to decipher the NICE guidelines and got a bit lost!

Thanks!!

Results

[SlowDragon Administrator in reply to SeasideSusie]

See my reply re Nice guidelines

[MayJuneJuly in reply to SlowDragon]

Ah thanks!! Yes, so my understanding from the guidelines is.. seeing as I've never had a stable dose (only been stable during pregnancy when newly diagnosed) then if I was tested in Feb, I should be eligible for a retest in May?

I hope I'm making sense

😀

[SlowDragon Administrator in reply to MayJuneJuly]

You should be tested 3 months after each dose change or brand change in levothyroxine

Which brand of levothyroxine are you currently taking

Do you always get same brand

How much levothyroxine are you currently taking

If test results are good, retested in further 3 months....if levels changed then you’re not stable

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

Have you had coeliac blood test done

Are you on strictly gluten free diet

What vitamin supplements are you currently taking

Hashimoto’s frequently improves significantly when pregnant but then gets worse after birth

[SlowDragon Administrator in reply to MayJuneJuly]

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

Low vitamin levels affect Thyroid hormone working

Vitamin D too low

B12 ok, just

No folate or ferritin 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

healthcheckshop.co.uk/store...?

Assuming coeliac 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.

[SlowDragon Administrator]

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

1.4.3 For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.

1.4.4 Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine.

So it’s time for retest

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least once year

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels at next test (thyroid antibodies too, if never been tested)

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. (Patient to patient tip)

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[MayJuneJuly in reply to SlowDragon]

I will reattach my results as they have ferritin and folate.

As you can see my CRP is high, is this due to the autoantibodies causing inflammation?

I have read Dr Wentz book. I followed her diet completely for 6 weeks. I also cut out peanuts as I did a food tolerance test which showed diary, yeast and peanut intolerance.

I must say since taking levo my stomach problems have absolutely resolved (this was my main symptom along with brain fog and tiredness).

I did the diet regardless of no stomach symptoms and I took the blue horizon test to see if this would make a difference to inflammation and autoantibody markers. Obviously this little experiment went out of the window when I saw my TSH was high as I knew I had to increase levo dose.

I have had a few checks for coeliac pre being diagnosed hashimotos as got regularly dismissed with IBS for my stomach issues.

I currently take vitamin D and B vitamins. I did start taking magnesium glycinate and N Acetyl L Cysteine supplements too when I started Dr Wentz diet, but stopped them when I stopped diet.

I am now thinking I obviously didn't give diet changes long enough just doing 6 weeks? I guess I didn't have stomach issues when started so was hard to see if made difference. But I'm definitely getting more brain fog and tiredness now.

I will push for another blood test from the GP as we are now 3 months from Feb. I will assess diet too and maybe go back to gluten free/diary free/processed food free for a longer time.

I have uploaded the packet of my levo if thats okay? I can't see a clear brand name. I've had the same brand throughout.

I really appreciate the advice here, thank you so much.

Results

[SlowDragon Administrator in reply to MayJuneJuly]

If you have been tested for coeliac already, no point retesting

Just trial absolutely strictly gluten free diet. Minimum 3-6 months

[MayJuneJuly in reply to SlowDragon]

The brand of levo I take.

Medicine packet

[SlowDragon Administrator in reply to MayJuneJuly]

Have you always been on Teva?

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). It’s a Marmite brand. Some love it, others can’t stand it

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

[MayJuneJuly in reply to SlowDragon]

Thanks for the info!! 😀

[Hidden]

My own experience is minimum 6 weeks, maximum 8 weeks (before I go downhill again). At 4 weeks my levels still fluctuate, but at 8 weeks if they are low it is a bit harder to come back from.

[MayJuneJuly in reply to Hidden]

Thanks 😊