Latest blood tests - low T3

[Cat_bluenote]

What to do next? Advice welcome please 🙏

Hi all, I 've been on 75 mcg levo for about 9 weeks.

Results since January show conversion mostly dropping as I increase Levo. I just retested, after waiting a few weeks to see if symptoms settled. Test results in photo.

Endo could see conversion wasn't good and said to try selenium supplement. He also said I can have a trial of T3 later on, but I'd have to pay for it myself. He wrote to my GP and said to keep my TSH under 2, and said I was now clinically euthyroid. (hmmm , with T3 at 29% at that point)

If I took more levo (independently - as neither GP or Endo will increase it) is it likely that it would improve my T3 by much?

I'm on 75 Levothyroxin, and I'm 52kg, so 83 mcg would supposedly be the correct dose for my weight.

Or should I just ask for trial of T3?

Worst symptom now - constantly achy neck/ back/ shoulders/ hips. Had worsening aches/ pains for a couple of years before diagnosis, but much worse since. No improvement over 6 month, despite physio. I have 2 bulged discs, so GP will blame that, but low T3 certainly wouldn't help. Also, no mental energy/brain fog.

Taking selenium now, plus all the recommended vits.

Would be interested to know if anyone found that adding T3 improved their muscle/joint pain? Or if any other supplements helped.

Thanks in advance for any advice.

[SlowDragon Administrator]

next step retest including vitamin levels

Exactly….What vitamin supplements are you taking

When were vitamin levels last tested

You could try increasing dose slightly first

Do you always get same brand levothyroxine at each prescription

[Cat_bluenote in reply to SlowDragon]

Hi, thanks. I'm taking Igennus super B complex and solgar gentle iron. Last checked vitamins mid February.Vit D 110

Folate 45

B12 active 102

Iron 66

I'm not currently strictly gluten free. I don't have any reaction to gluten (that I'm aware of). I'm 95% gluten and dairy free - just to help keep inflammation low. I'm vegetarian and eat a pretty clean diet.

I've had same brand of Levothyroxin since January.

[SlowDragon Administrator in reply to Cat_bluenote]

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Stop iron supplements 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

[Cat_bluenote in reply to SlowDragon]

Thanks, I will test again soon. I ve only been taking the iron every other day, partly because I don't think I get much in my diet.

[SlowDragon Administrator in reply to Cat_bluenote]

As a vegetarian you’re likely to struggle to maintain good iron/ferritin levels

[SlowDragon Administrator]

had a private ultrasound in August. That showed my thyroid was tiny, less than 1 cm each lobe) I passed on the report to my GP, they said it wasn't relevant.

Also I privately tested for TPO and TG antibodies, both very low

So, despite negative thyroid antibodies, most likely Ord’s thyroiditis and autoimmune

Are you on strict gluten free and/or dairy free diet

[Cat_bluenote in reply to SlowDragon]

Yeah, endo said I had atrophic thyroiditis. It's hard to know what actually triggers the autoimmunity. My aunt has same condition. I suppose I could get checked for coeliac. I would strictly avoid gluten, if I was sure it was causing me a problem.

[SlowDragon Administrator in reply to Cat_bluenote]

You won’t know unless you try it

But test for coeliac first

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 or Ord’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

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

Assuming 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...

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

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

[Cat_bluenote in reply to SlowDragon]

Thanks for all those links. I did do strict gluten free for about 4 Months last year. Can't say I noticed an improvement, but to be fair I was undermedicated for all of that time. I think I will get tested though. How long do I have to eat gluten for before test?

[SlowDragon Administrator in reply to Cat_bluenote]

6-8 weeks, eating gluten at least 3 times a day

[Cat_bluenote in reply to SlowDragon]

Ok thanks. That's a lot of gluten!

[BenLabrador]

You could try buying T3 privately (private message me for sources) and check your levels through Monitor My Health or similar. I checked myself for the DI02 genetic mutation which leads to poor conversion of T4 to T3. I have it and need T3 as well as T4.

[Cat_bluenote in reply to BenLabrador]

Thanks, I have considered that. I had thought that initially it might be best to have someone to advise/ monitor me. I'll have a think about it first 🙂If you've got poor conversion because of DI02, couldn't you get T3 from NHS? Or am I deluded 😆

[BenLabrador in reply to Cat_bluenote]

Due to cost and medical reluctance in many parts of England T3 is not available through the NHS. And many hospitals will only check the TSH level. Of course if you can get it through the NHS GP and endochrynologist route then all well and good. If you cannot the above is a way around it.

[Cat_bluenote in reply to BenLabrador]

Thanks. No, I wasn't expecting to get it free. Endo told me I'd have to pay if I wanted to trial it. But I know someone who has got DI02 gene problem who gets it on prescription. It doesn't seem fair that you don't.

[BenLabrador in reply to Cat_bluenote]

I know sources of T3 that are much cheaper than through a prescription from the endo. You’ll need to private message me.

[helvella Administrator Thyroid UK in reply to Cat_bluenote]

In case you do decide to try to source your own, I'll reply with this standard warning we regularly post:

As we can't name suppliers on the forum, any replies must be by private message.

To avoid being scammed by unscrupulous suppliers who we know contact members when requesting suppliers of thyroid meds, you are encouraged to contact a member of the Admin team to see if we have any feedback on any recommendations that you are sent. Please read the post linked to below and don't part with any money until you have checked any supplier information with myself or another Admin.

However, admins cannot make any recommendations themselves.

You will find few, if any, of the potential suppliers accept the best known and most trustworthy forms of payment such as Paypal and credit cards. The major payment companies are very wary of medicine suppliers.

If you are not within the UK, please make this clear. Some potential suppliers will only supply specific countries.

📢 ⚠️ Purchasing thyroid medication without prescription - Please Be Wary! ⚠️ 📢 (Repost)

healthunlocked.com/thyroidu...

[Cat_bluenote in reply to helvella]

Thanks for the information. I'll make sure to check.

[Cat_bluenote in reply to helvella]

Thanks for the information. I'll make sure to check.

[mstp]

I don't really understand why you don't increase your levo a bit. 75 is quite a low dose and it could make all the difference.

[Cat_bluenote in reply to mstp]

I probably will try a small increase, but my T4 was good at 19.5 - 75% I don't want it to go over 22 -top of the range. It seemed to be my T3 that's the problem.

I'm feeling impatient - that'll mean waiting another 8 weeks to see if it makes a difference. I spent the last 12 months waiting to feel better, hoping each 8 weeks would make a difference. I really want someone to say - Do this, it'll definitely work for you 😆. But that's not gonna happen, so I gotta figure it out myself. Thanks

[mstp in reply to Cat_bluenote]

What does anyone else think about taking half a tablet more I wonder? It might just kick start things over the finish line.

[Cat_bluenote in reply to mstp]

Appreciate you replying, as people's advice on this forum is helping me decide what to do ( in the absence of any helpful advice from NHS!)

[tattybogle]

Endo has advised gp to keep tsh under 2.. but neither endo or GP are willing to increase levo.

.... how are they expecting your tsh to get below 2 ? ... willpower ?

[Cat_bluenote in reply to tattybogle]

Hi, Well on 13th May my TSH was actually 1.84. That was the GP test that he referred to ( no T4 or T3 checked as you might expect). So I did MMH private tests after that to get T3 and T4. He saw those results but still said he didn't want me to increase to 100. That was after only 4 weeks on 75 mcg. So I waited a bit for things to settle.

You're probably thinking why not go back to GP and demand increase, now TSH is over 2 , but there's no way I want to go near my GP surgery again. I think I've developed an allergy to GP's . After the way I was treated during the first year after being diagnosed; just so horribly dismissive about everything I asked about. The message was loud and clear, IT'S NOTHING TO DO WITH YOUR THYROID. It was clear that they didn't have a clue!

I'll probably go with a small Levo increase, and see how that goes. Thanks for replying. 🙂

[tattybogle in reply to Cat_bluenote]

totally understand your GP allergy...... i have one too . Ok , i would go and see one if my arm turned blue , or i found a lump somewhere etc , but for anything 'invisible' i now fear that seeking their 'help' will do me (and my mental health) more harm than good and so i try and steer well clear.

[Sparklingsunshine in reply to tattybogle]

I 100% agree. I've said before ( and undoubtedly will bore everyone again) but the NHS is usually quite good for acute easy to fix problems, a heart attack, appendicitis, a broken limb.

But anything complex or an ongoing long term chronic problem, especially with their insistence that lab tests are God and can never be wrong, then in my experience you'd be better off consulting the Oracle at Delphi.

They either dont know, dont care, tell you to learn to live with it or more often try and fob you off with anxiety pills. Its ironic they wont give out more Levo because its " dangerous" ( who knew thyroid replacement was the new crack cocaine), whilst happy to hand out highly addictive drugs like Anti D's and Benzos.

Patients like us feel dismissed, patronised, gaslit. And then you get GP's complaining that we are not consulting them when we're ill or worst still self treating. Unless I had something hanging off I avoid doctors like the plague.

[Gillybean1 in reply to Sparklingsunshine]

Well said Sparklingsunshine. You took the words right out of my mouth. What a dreadful state of affairs. Ive got the GP phobia too, bullied and demoralised.

Every best wish g