Feeling rough

[kathgallagher]

I have just had thyroxine increased from 125to 150 and have had stomach problems since . Is this normal. I also have RA and other problems but have lost 6 1/2 ,stone in a year. Told it was due to disease activity. Never seen endocrinologist only gp

[SeasideSusie Remembering]

Kathgallagher

Have you been given a different brand of Levo to your normal one?

What does your GP mean by disease activity? Do you have autoimmune thyroid disease aka Hashimoto's?

[SlowDragon Administrator]

Looking at profile and previous posts can’t see any recent vitamin or thyroid results

Presumably you have Hashimoto’s?

Are you on absolutely strictly gluten free diet?

What vitamin supplements are you currently taking

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

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

Low B12 causes pins and needles

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)

If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

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/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

[kathgallagher in reply to SlowDragon]

Was tested for coeliac but was negative. No vitamin supplements taken but have vitamin b12injections twice a year

[SlowDragon Administrator in reply to kathgallagher]

So you need all four vitamins tested at least annually

Extremely common to need to supplement continuously to maintain optimal vitamin levels

Thousands of members forced to test privately to make progress

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

Low vitamin levels affect Thyroid hormone working

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

As your coeliac test was negative you can start

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]

Do you always get same brand of 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

Are you currently taking Teva?

Teva, Aristo and Glenmark are the only lactose free tablets

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

Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but 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

[SlowDragon Administrator]

Gluten free diet often helps with RA too

medicalnewstoday.com/articl...

everydayhealth.com/rheumato...

The ONLY way to know if gluten free diet would help you is to try it

[kathgallagher]

Thank you.

[SlowDragon Administrator in reply to kathgallagher]

Come back with new post once you get thyroid and vitamin levels tested after 6-8 weeks on new dose levothyroxine

[JAmanda]

I think an increase in meds just gets your system working a bit faster - and so not really unusual to affect stomach and cause more bowel movements etc. It'll settle I'd think. But, whilst you do seem to be getting good care from your doc , I'd be tempted to do private tests to see where your t4 and T3 levels are. Or perhaps your doc shares full results (and ranges)? Why did you get the increase? Could you be over range now?

[kathgallagher]

Excessive weight loss 61/2 stone in a year Told it was because arthritis was really active. Persistence of practice nurse who unfortunately has now left

[Hidden in reply to kathgallagher]

Do you have B12 deficiency or PA? What do get the B12 injections for?