Advice needed please

[Cookie3103]

Hi, I'm new here. Recently diagnosed (November'17) and prescribed levothyroxine 50. Despite the medication and plenty of sleep I still feel exhausted and rubbish every day. My doctor hasn't given me any advice. Recent results:

TSH 1.10 (0.55-4.7)

T4 16 (10-25)

T3 4.9 (4.0-7.0)

Antibodies 94.4 ( not classed as important to the doctor, as less than 100)

Any advice gratefully received.

Thanks

[crimple]

My TPO result was about 110 when diagnosed 5 years ago and I felt pretty rubbish. We are all individuals and each react differently to our thyroid illness. I would recommend a gluten free diet (90% of thyroidies are sensitive to gluten- not the same as having a positive coeliac test- which is unreliable at best!) You also need to check your B12, Vit D, iron, ferritin and folate levels as these can be low when you have Hashi's (+ve for antibodies) Unless they are optimal you won't use your levothyroxine adequately.

[Cookie3103 in reply to crimple]

Thanks Crimple, much appreciated. I've been thinking of going gluten free, I'm getting tested in a fortnight for coeliac. Last year I was vitamin D and iron deficient. So take supplements for those. I'm vegetarian but my B12 was allegedly fine. Is is worth taking additional supplements without knowing if I'm deficient?

Always get a print-out of your blood results with the ranges for your own records and you can post for comments from members.

[shaws Administrator]

Welcome to our forum, and I am sorry you have hypothyroidism. Your doctor should have increased your dose by 25mcg as 50mcg is a starting dose. I think your GP may not have given you an increase as your TSH is in the lower part of the range so is assuming you are on a sufficient dose.

Both your T4 and T3 could be higher. In fact we, the patients, prefer a Free T4 and Free T3 blood test and I will give you a link of why.

thyroiduk.org.uk/tuk/testin...

It takes a while for us to feel much better and I will also give you a list of clinical symptoms. I am sure you will have a few.

When you have blood tests for thyroid hormones, it has to be the earliest appointment, fasting, (you can drink water) and allow a 24 hour gap between last dose of levo and test and take it afterwards. This method keeps our TSH at its highest as it lowers throughout the day and as I stated, doctors only seem to pay attention to it alone.

Ask GP to also test B12, Vit D, iron, ferritin and folate. Everything has to be optimal.

Levothyroxine is usually taken first thing when we awake with one full glass of water and wait an hour before eating. Food interferes with the uptake of levo.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/testin...

[Cookie3103 in reply to shaws]

Thank you Shaws, appreciate the response. I take the thyroxine at 6:30 every morning, breakfast an hour later. I always have an early appointment but I do usually have breakfast first. I'll skip it for my one.

I'll check out the links.

And thanks again

[SlowDragon Administrator]

Essential to retest vitamin D and ferritin

Ask GP to test folate and B12. Especially as you are vegetarian and Hashimoto's

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's 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

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[Cookie3103 in reply to SlowDragon]

Thanks Slowdragon, I have gastritis and IBS so it all makes sense. I take probiotics (regularly after seeing a nutritionist last year), all was better stomach wise until the doctor prescribed me iron tablets. I was already taking spatone so thought I wasn't absorbing it. So along with the fatigue, constant cold feeling (and dozens of other symptoms), I had chronic stomach pain. Never touching those again.

Am I right thinking I shouldn't go gluten free until I have the coeliac blood test?

I'll check out those links too.

I seem to spend all my time researching everything thyroid related and after 2 heated discussions with the doc the 3rd showed he was listening. He'd not heard of gluten free being helpful but actually looked it up. Small progress, but progress nonetheless.

Thanks again for taking the time to reply.

[SlowDragon Administrator in reply to Cookie3103]

Yes ask for coeliac blood test before switching to strictly gluten free diet. If result is positive for coeliac you will need to remain on gluten rich diet until endoscopy (maximum wait 6 weeks officially)

If it's negative for coeliac then you can go gluten free straight away

Ask for vitamin D, folate, ferritin and B12 tests at same time

[Cookie3103 in reply to SlowDragon]

Thank you. Much appreciated.

[Hidden]

What was the range for the antibodies please?

[Cookie3103 in reply to Hidden]

Hi Bunnyjean, there was no range as such, just advised that they (doctors) don't usually test for it as treatment (by them) is the same as hypo treatment. If it was over 100 they would note it (but do nothing). At 94.4 he thinks it's borderline but understood that gluten free may help with the symptoms.

Thanks.

[Hidden]

OK thanks