Looking for advice and a doctor who understands Hashimoto’s and will prescribe T3/NDT

[Flossiewestie2020]

Hi All,

I’m getting really frustrated with my Hypothyroidism/Hashimoto’s and need some advice. It’s got to the point where it’s making me miserable and I feel like a shadow of my former self.

I was diagnosed in November 2019 and was also diagnosed with Coeliac Disease so I am completely gluten-free.

Since then I’ve taken various doses of Eltroxin and for the first year my symptoms seemed to fluctuate with my blood test results and when I tweaked the dose, I seemed to feel better quite quickly.

This seems to have changed since Christmas as my blood tests looked ok (better than they’ve been before anyway), but my symptoms keep coming back seemingly randomly and I don’t know why. I take prescribed iron and a range of other supplements and I’ve been working on my gut health over the past year as I had suspected SIBO – my symptoms do seem to have improved gut-wise, even though I do sometimes still have IBS symptoms.

My issue is I don’t know what to do for the best. In March my blood tests were slightly out of range so my endocrinologist said to reduce my dose but now, as they’re still not ‘normal’ she wants me to reduce it again, which I’m reluctant to do as I definitely feel ‘hypo’ at the moment. This is something she suggested over voicemail without actually asking how I was feeling! I’ll outline my most recent test results below.

December 2020 (on 125mcg): TSH 0.44 (0.27-4.2); T4 22 (12-22); T3 5.1 (3.1-6.8)

January 2021 (on 125mcg): TSH 0.21 (0.27-4.2); T4 20 (12-22); T3 4.4 (3.1-6.8)

March 2021 (on 125 mcg): TSH 0.10 (0.27-4.2); T4 23.3 (12-22); T3 4.1 (3.1-6.8)

April 2021 (on 3 x 100mcg and 4 x 125mcg): TSH 0.18 (0.27-4.2); T4 22.3 (12-22); T3 4.4 (3.1-6.8)

My latest vitamin results were as follows: ferritin 64; vitamin D 88; B12 428. I know these could be higher but they’re as high as they’ve been and I do supplement them.

I felt pretty well in December but then between my December and January blood tests I had a month of feeling unwell. When I had my March blood tests I was feeling ‘wired’ and anxious as opposed to hypo, so I was happy to reduce my dose but I’m not sure if I want to reduce it further.

Currently I feel exhausted, emotional, achy, brain-dead and my skin is really dry but I’m not sure if it’s due to my medication not being right or something else. My symptoms do seem to coincide with me having a mild cold, but that seems to be constantly at the moment.

Does anyone have any suggestions as to what might be going on? Do you think I should reduce my medication to 100mcg? Do you think low T3 is the problem?

I’d like to find a doctor who understands the importance of T3 and optimal vitamin levels, as well as lifestyle choices. I would appreciate recommendations for doctors who will look at the whole picture and prescribe T3/NDT if this is something I might benefit from.

Thank you in advance.

[SlowDragon Administrator]

TSH 0.18 (0.27-4.2);

T4 22.3 (12-22);

T3 4.4 (3.1-6.8)

Currently Ft3 is only 35% through range

So like many of us with Hashimoto’s and gluten intolerance/coeliac you have poor conversion

Yes likely to need addition of T3 prescribed alongside levothyroxine

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

[e-mail]

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one. Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Exactly what vitamin supplements are you currently taking

Magnesium?

Vitamin K2

Folate or vitamin B complex

Selenium

Zinc

[Flossiewestie2020]

Thanks for this. I take prescribed iron plus omega 3 fish oil, B-complex, zinc and copper, D3 with K2, selenium, magnesium and vitamin C. I’m also taking an anti-microbial.

[SlowDragon Administrator in reply to Flossiewestie2020]

So, assuming all vitamin levels are optimal...next step is to get T3 prescribed

Likely to need to reduce levothyroxine by 25mcg

Add in 5mcg T3 as 2 or 3 split doses per day at roughly equal 8 hour intervals

Starting with just 5mcg once day

[Flossiewestie2020 in reply to SlowDragon]

Ok thank you! Let’s hope I can get it prescribed 🤞🤞

[Flossiewestie2020 in reply to SlowDragon]

Is T3 better than NDT?

[Flossiewestie2020]

I’ve contacted Thyroid UK. Do you think I should reduce my dose to 100. I’m feeling crap but I’m not sure if I’m over or under medicated?! 🤷‍♀️

[fuchsia-pink in reply to Flossiewestie2020]

You are ONLY over-medicated when free T3 is over-range - so you're a LONG way from that You're likely to feel better (and have higher free T3) if you go back to 125 mcg of levo while you explore getting some lio added to the mix

Is T3 better than NDT

To a large degree it's a personal preference - but you may be lucky and get lio on the NHS. You won't get NDT on the NHS - and supply from overseas has been at best patchy recently. So I'd suggest it's much easier to try lio first and see if that suits x

[Flossiewestie2020 in reply to fuchsia-pink]

Ok, thanks for this. I’m really not sure if I feel better on 100 or 125 🤷‍♀️ When I was on 125 before I did feel really wired and on edge, whereas on this lower dose I feel hypo with a bit of anxiety thrown in!

[serenfach]

It may be worth trying 100 one day and 125 the next, just to see if this helps, but I agree you would feel better with a touch of T3. When you see the Endo or the GP, just ask for a "trial" - this way the medical professional sees it as a short term thing and are more likely to prescribe. Then forget the trial bit! Good luck.

[DORLEANS]

Well I am on eltroxin since 1992 and was doing amazing until they changed the formula in 2009 ...it has never been the same. But what I can say from what I see in your tests is that your t4 and t3 are ok but you are way to high in dosage as you see how low your tsh is ! I would definitely lower down the dosage if I was you! Hope that helps