Hashimoto’s and ME/CFS

[Rainbow47]

Over the past six months or so I have been suffering from extreme fatigue/constant sore throats, runny nose, sore eyes etc, which I had put down to the grandchildren! Prior to this I was quite pleased that my thyroid ducks were nicely in a row and I was getting on with my life for the first time in years.

However, my GP has been putting two and two together and thinks I now have ME, which came as a bit of a shock. I had Glandular Fever in my twenties and suspected ME in my thirties. It’s only now that I’ve learnt about the Barr Epstein virus and the connection (possible trigger for Hashi’s). Just wondering if anyone else on here has had ME with Hashimoto’s and how they went about tackling it? Feeling a bit deflated to say the least!

[GlowCoach Administrator]

Did you change your dose after your last post? healthunlocked.com/thyroidu...

Your levels were a bit unblanced at that point which doesnt suit everyone.

Have you checked your blood levels of nutrients lately? That would be a good box to tick just in case.

As far as ME/CFS goes a lot of it is managing your own and sometimes others expectations of yourself. Staying within your energy boundaries is important so as not to trigger post exertional malaise.

Dr Myhill is the font of all ME knowledge so worth looking at her website for many ideas. She advocates the paleo/keto diet which suits some but not all.

I have found vagus nerve stimulation very useful.

[Rainbow47 in reply to GlowCoach]

Yes, I did change it - I decided to lower my T3 from 25 mcg a day (3 doses) to 18.75 (2 doses) and increased my T4 from 75 to 75/100 alternate days and since then my anxiety and mental health, sleep and general wellbeing have improved, but the fatigue hasn’t, and that along with the constant sore throats etc, has made my GP come up with the possibility of ME. Everything else appears to be in order but am due to do another test in a week or two.

I will look at Dr Myhill’s website, but I read in Izabella Wentz Hashimoto’s Protocol that in the first instance the Epstein Barr virus needs to be eliminated and she suggests various treatments, including herbal remedies that I’ve never heard of.

Thanks for getting back to me Jaydee - it’s just one thing after another isn’t it?😳

[SlowDragon Ambassador in reply to Rainbow47]

Make sure to get TSH, Ft4 and Ft3 plus vitamin levels tested

Might need to tweak levothyroxine dose a bit more

Test early morning, ideally just before 9am, only drink water between waking and test, last dose levothyroxine 24 hours before test

day before test last 1/4 tablet T3 approx 8-12 hours before test

Remember to stop taking any supplements that contain biotin 5 days before test

[Rainbow47 in reply to SlowDragon]

Thanks SlowDragon - I do all you suggest and have just ordered a test from Blue Horizon. I’ve always used Medichecks but gather there have recently been discrepancies in their results.

You’ve given me hope, perhaps it is just my dosage after all. The thought of having to go down a different route does not appeal!

[Hidden]

However, my GP has been putting two and two together and thinks I now have ME

I would advise you never to accept a diagnosis of ME or CFS. Profound fatigue is a symptom, not a diagnosis.

Fight for the investigations you need to find that diagnosis, be it thyroidal or related to another condition.

It’s also worth remembering that because we are ‘thyroidites’ it doesn’t mean that that every symptom we have is connected to our thyroid condition.

To focus exclusively on the thyroid condition which blights us is as foolhardy as allowing medics to inappropriately dismiss our thyroids.

Open mindedness is key. I know this to my cost. I’ve spent many years chasing good health after a thyroidectomy and been obsessed with thyroid levels, vitamin levels, supplements.

Wasted years.

[Rainbow47 in reply to Hidden]

Don’t worry I won’t accept a diagnosis - probably because I don’t expect anyone can give one!! You will see from my reply to Jaydee that I haven’t given up yet. I keep telling myself it’s the heat that’s getting to me which, of course, it could be! Thanks for your encouraging words.

[Hidden in reply to Rainbow47]

I hope you get everything sorted and a working diagnosis.

Wishing you good health

[SlowDragon Ambassador]

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

[Rainbow47 in reply to SlowDragon]

Gluten free but not dairy. Tried it for a few months but didn’t appear to make any difference so went back to the real thing.

[SlowDragon Ambassador in reply to Rainbow47]

I am both dairy and gluten free

Cutting Gluten in 2016 …the effect was immediately obvious

Dairy free …it’s been cumulative….and didn’t really notice any difference for 4-5 months. A year on ….I would never go back to dairy now

[Rainbow47 in reply to SlowDragon]

It would be a last resort for me. At the moment I have what can only be described as a virus, nothing like thyroid symptoms. It’s so difficult to know what’s doing what when or how! I get so tired of having to work it all out - and remember everything - I won’t give up yet though! Maybe a functional doctor is the next step.

[thyr01d]

Yes, I do have a diagnosis of both Hashimoto's and ME, but have recently been looking at B12 and wondering if that's the problem. There seems to be a link with low B12 and long covid, and possibly with ME. Also, I too used to have a constant sore throat, runny nose, sore eyes like you and having changed surgery was prescribed Bekonase (think that's it) to puff into my nose. No more sore throat or runny nose! Eyes better too.