Negative side effects of NDT/T3 with severe M.E. + Perimenopause

[SpringFairy]

Has anyone else with severe M.E. found that beginning NDT & T3 triggered inflammation & perimenopause symptoms?

I'm late 40's with severe M.E. (predominantly bedbound) + comorbidities, plus a recent Hashi's diagnosis.

After 3 months of slowly increasing NDT -& adding in T3- my resting heart rate has increased, my M.E. is worse & I'm getting weaker. The inflammation is the same as when I'm taking meds I've been intolerant to.

Now my cycle has changed & I'm getting horrendous heat surges through the day & night, which I'm assuming is perimenopause? There is a plan to trial HRT at a later date.

Until I see my Dr again (in 8 weeks) any wisdom? I've emailed them.

Daily meds. Armour: 2 60mg grains + T3 x 2.5mg 3 times a day

If I disappear, it's because I've relapsed again

[Yeswithasmile]

Hey SpringFairy

I have whizzed through your other posts and I’m sorry you’re still poorly.

Just thought I’d say that I have dx of ME, fibro and hypermobility. That was 27 years ago now.

6 years ago I was diagnosed with hypothyroidism. It’s autoimmune.

Whilst, obviously, your health issues are much more complex than mine I thought I’d just say that I need a higher ft4 to be able to function relatively pain free. I mention this as I’ve seen you’ve had lots of great advice but I don’t think you’ve tried more than 25mcg levo. Would this be correct? I need my ft4 to be between 17 and 18. I can have a low ft3 as this doesn’t affect the pain. For other symptoms I think it’s a balance of the 2.

At low dose levo I feel dreadful. So you’ll understand it has taken a long time for me to realise what helps.

Just thought I’d mention it just in case it maybe that you need a higher ft4.

The symptoms you mention are ones I get with higher ft3. Heat, fast heart rate, exhaustion. Balanced out more and it’s a great improvement. Admittedly it’s an endurance to get there as often feel worse before better.

Hope this helps? Good luck x.

[SpringFairy in reply to Yeswithasmile]

Hey Yes! It absolutely helps, thank you so much for your response.

Very interesting about needing higher T4. You are quite correct, I've never tried higher than 25mg, as my GP refused to increase, preferring to wait 3 months for a second blood test. I was too ill to wait.

I appreciate you mentioning your symptoms & that sounds very similiar. So, it could just be T3 too high, rather than triggering perimeno? I guess we'll soon find out. 😄

You are so right it's an endurance! Superb description. Sorry you're on this long chronic illness journey too. Take care x

[Dinkki]

Hello, I'm so sorry to hear you ate not feeling great. With hashimotos have you removed the biggest triggers suc h as gluten, dairy soy and sugar? They are commonly most inflammatory. Remember that with autoimmunity, the auto antibody levels are just one aspect to consider , the other is the level of inflammatory cytokiness such as T17. Also it sounds like you are taking to much T3 (by your description of symptoms). We're you feeling OK just with NDT? The chronic fatigue is a hashi symptom, so take care with food, sleep, vitamin c, vitamin d, try snd get sunshine , try meditation to relax nervous system. You can do it, just take it step by step.

[Dinkki in reply to Dinkki]

Also ensure yiur supplements are as clean as possible...no gluten, dairy fillers etc

[SpringFairy in reply to Dinkki]

Grateful thanks for your reply Dinkki 🙂

Yes, I've been ill for so long, I've really worked hard on an anti-inflammatory diet. Soya always made me feel extremely unwell, so that one was easy. When I'm in a severe relapse, I do tend to slip back to eating some fruit, so I've stopped that again.

Re: cytokines -T17, is that something that can be tested? I've not come across it before.

Yes, I seemed to be ok on NDT, so I stopped my T3 yesterday after nearly 2 weeks. Already feel less inflamed today -& able to respond here- so I'll leave it like that for a bit.

Thank you for the encouragement. I've had M.E for years, so I'm generally quite good with holistic self-care.

[Gingernut44]

Do you have any up to date test results since being on this dose?

[SpringFairy in reply to Gingernut44]

Not bang up to date, but these were taken between adding in NDT & starting T3

Thyroid Stim. Hormone L 0.11 (0.270 - 4.2 mIU/L)

Free T3 4.8 (3.1 - 6.8 pmol/L)

Free Thyroxine (FT4) 16.4 (12 - 22 pmol/L)

The results may be a little wonky though as I took a free hair + skin supplement 5 days before & didn't realise it had Biotin in it. Or that Biotin affects results. Doh! Lesson learned.

[jade_s]

Have you ever had B12 and/or cortisol investigated? Being low in both gave me terrible intolerance to thyroid meds and mimicked ME/CFS. The worst part is that B12 levels can appear normal but you can still be functionally deficient.

[SpringFairy in reply to jade_s]

Thanks Jade. My cortisol is currently high, but isn't always. I agree with you about B12 & whatever my results, I currently self-inject EOD.

I'm sorry you've been finding out the hard way too. Hope your levels are ok now.

[jade_s in reply to SpringFairy]

The other thing you can try is folic acid / (methyl)folate. Some people need to take 5mg daily despite good levels (like myself). Or a different form of B12 - some people seem very sensitive. For example cyano hardly does anything for me.

I'm doing well thank you managed to dig myself out of the depths of hell by injecting 2x daily, already for nearly 6 years now. Any less and I go downhill quickly.

I realize B12 is miraculous, lol, but not always the only issue going on, so I do hope you find solutions.

[SpringFairy in reply to jade_s]

Thank you Jade. Yes, I'm determined to successfully introduce folic acid or folate. It's so frustrating being so supplement-intolerant. Expensive too!

That's great you're doing so well! Is that 1ml twice a day? I did 1ml Hydroxo daily for a year but didn't notice any different. It could have been because my co-factors were low though.

Best wishes to you x

[jade_s in reply to SpringFairy]

Yes expensive unfortunately!

Yes 1mg/1ml each morning & evening, but I also need 5mg folic acid daily, sometimes more, otherwise not only does the neuropathy come raging back, but I get very depressed/anxious and mouth ulcers. Most seem to do fine on a moderate amount of folic acid or folate, but not everyone. It can really make a difference in how well b12 works. Agood B complex with less than 10mg B6 can also help. (You can overdose on B6).

You're right about other factors. I had to fix low iron and magnesium, vit D, and the above, before I could tolerate increases in thyroid meds and get any relief from the pain & exhaustion. It takes time unfortunately.

[SpringFairy in reply to jade_s]

What a journey you've been on Jade. Phew. You need to be an extremely patient person of wealth for this chronic illness. 🥴

Thanks for the tips. Yes I have so much work to do with the factors.

[jade_s in reply to SpringFairy]

Phew is right, lol Thanks, yes we need patience and lots of persistence. With the help of these forums, it's definitely possible to optimize things & get better.

[Sleepybunny]

Hi,

Your post caught my eyes because you mentioned ME.

I had a ME/CFS/Fibro diagnosis years ago and many symptoms turned out to be due to B12 deficiency.

As your ME is getting worse, just wondered if your B12 levels had been checked recently.

(Just spotted that you SI EOD)

I normally post on Pernicious Anaemia Society forum on HU.

PA is an auto immune condition that can lead to B12 deficiency.

Many PAS forum members have a thyroid diagnoses and some have ME/CFS/Fibro diagnoses in their medical history.

From personal experience, it's possible to have severe B12 deficiency with a normal serum (total) B12 result.

It's possible to have Functional B12 deficiency, this is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

A couple of links that might be of interest.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

Lots more info about B12 deficiency on PAS forum.

[SpringFairy in reply to Sleepybunny]

What a thoughtful post, thank you Sleepy 🙂 Funnily enough I was just on the FB B12 support group!

This misdiagnosis lark is tough going isn't it? I see that 48% of PA people are initially misdiagnosed. That's about the same % of people initially diagnosed with M.E/CFS that actually had something else 🤪 So, I agree, we need to keep looking.

I've never taken a B12 cellular test & all my serum ones were high from supplements or SI (self-inject) so I don't know my true result. I SI Hydroxocobalamin for a whole year every day & didn't see any improvements but my folate, ferritin & potassium were low then, so probably couldn't be used sufficiently.

Thank you for the signpost to HU & the helpful links. I will keep digging

[Sleepybunny in reply to SpringFairy]

"This misdiagnosis lark is tough going isn't it?"

You're so right ..... I lost almost 20 years of my life to unrecognised B12 deficiency.

I have always suspected I have thyroid issues as well but no clear evidence in blood tests.

Misdiagnosis of B12 deficiency as ME/CFS and other conditions

b12deficiency.info/misdiagn...

martynhooper.com/2018/02/10...

You mention folate and iron deficiency, have you been tested for coeliac disease?

NICE guidelines Coeliac disease below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac.

nice.org.uk/guidance/ng20

More info on Coeliac UK website.

coeliac.org.uk/home/

If you were tested for coeliac in past and had a negative result, check GP followed the recommended diagnostic process, some don't.

If you're on PAS forum on Health Unlocked and have the energy, you could wade through some of my very detailed posts which have a lot of info about B12 deficiency eg books, links to documents, websites etc.

[SpringFairy in reply to Sleepybunny]

Thank you for all that information Sleepy 🙂 I've been tested for coeliac twice, but as I'm not sure whether I was eating enough gluten at the time, (I was very, very poorly) it's on my -long- list to test again.

I'm so sorry you lost 20 years 😔 It's unfair.

If I were to add up how many times I've crashed out of life ill (including this last serious 10 years) it would be depressing. I've been at the GP since adolescence, complaining of infections + fatigue.

When I have more energy I'll look up PAS. Thank you x