Hello all, I'm new here, live in Florida and am a former athlete. At age 33, I was Diagnosed w/Hashi's after being hospitalized with Epstein Barr virus in 1997 (horrible event). Thyroid treatment was ineffective for 25 years. With the expected weight gain, and wild low blood sugar problems.
More recently diagnosed with MCTD due to severe fatigue and exercise intolerance along with severe muscle weakness. I was unable to walk 500 feet, or even stand up from a chair. I work on aircraft and would make it halfway across the hangar and have to lie down on the floor for 2 hours. It's very weird to simply run out of energy like that.
It's a long story and a waste of 25 years of life, along with the last 10 being utterly horrible.
However, I'm doing pretty well lately on new treatment. 10mg/day Prednisone keeps me functional and 75mcg T3 only treatment works for me (T3 6x day) . What I discovered is that if I take a extra T3 and Pred 30 mins before a workout or exercise, I can exercise now.
I caught EB virus at a family wedding from my sister in law. The virus hospitalized my sister in law at the wedding and me two weeks later. The three of us ended up with autoimmune diseases (her w/ Lupus, brother with RA and me with Hashi's)
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Cujet
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Welcome. I’m sooooo sorry about your medical journey and it’s toll on you.
I’m so glad to hear that your trial of additional meds made your goal successful. This will help others on the forum that are having same/similar symptoms.
I just said a special prayer for you. Take care of yourself.
Best wishes
EJ. 🙏🕊🌿🌸🦋☀️🌈🛩🔧
Interesting post.I have a friend who contracted EB as a young man but made a full recovery.
My illness is also rare but I’ve managed the last 40 odd years ok.
EB virus has 2 variants, and 134 different gene expressions (from what I read) The variant I contracted was NASTY and nearly did me in, I never recovered. EB is highly correlated with autoimmune problems and especially MS. As I understand it, there are nearly no MS sufferers who did not contract the EB virus.
Even more intriguing as my daughter in law is being investigated for MS or brain tumour right now but no dr has mentioned EB so I’ll look into this. Thank you.
Very interesting about EB and its many variants, but very sorry to hear you and yours have suffered badly from it.
I had 'atypical' EB in my early 20'ies and I often wonder if this contributed to my health issues. I say atypical because I was -ve using the Paul Bunnel (?sp) antibody test but my blood profile was typical of the illness. I now wonder if I had one of the more unusual variants.
Hi.i have hashimotos and can't take synthetic thyroxine. I didn't like t3.with it half life being so short it was like some pressed the off switch.i now take armour thyroid extract which contains all 4 thyroid hormones. It's the only drug that has managed to stabilise my bloods..I hope things improve for you.kind regards x
I was on NDT in various forms for years. I did poorly on T4, much better on NDT. But it too failed in the end. No question T3 is a roller coaster ride, but taking it 6x per day is a big help. Sure, I have to get up at 3AM to take a dose. So what? I fall right back asleep and stay warm (unlike before where I could not get warm no matter what)
But I have other issues, the MCTD is a life-ruining disease, with screwed up hands, and unreal fatigue. It is managed by Pred. If I start to get fatigued, I need more pred. But most of the time I can operate on 10MG per day.
What I can't do is work hard or exercise without taking 5mg more Pred and 12.5mcg more T3. But if I do, I can now get about 2/3 of a workout in. After which I feel normal for the day. Flat out glorious!
I have sle,Ln and sjogrens as well as hashis and pa. I've been steroid dependent for over 8 years can't get below 7mgs without lungs flaring. I'm slowly reducing from my last flare in June now on 22.5mgs.good luck with it all hope it continues to work for you
Hi Cujet, so sorry to read what you've been through. But it seems you're fighting your way through it and have come a long way from the dark days.
Some.of the meds we take have some unwelcome side effects and we have to be careful when taking them, but we are so lucky to have them and they give us so much of our lives back.
Hello, my story is contacted Epstein Barr aged 21 suffered like mad and then aged 42 was diagnosed with lupus and all the rest of the mix over. I can’t say it’s ruined my life but I can say not far short
I’ve stumbled upon your post having searched these forums for posts on MCTD. Im 40 and mum of 2 boys, im in Scotland.
I feel like your story is soo similar to mine! I was previously an athlete also, but following the birth of my second baby, things started to go wrong in my body. I had a year of night sweats, bilateral tendonitis, random fevers, tiredness.
I had a + ANA and elevated ESR and was referred to rheumatology in 2019.
Unfortunately the pandemic then hit and I never made it to rheumatology, they shut their waiting list to anything other than urgent cases and I didn’t get seen.
I changed my diet and things settled for a while. Then I had my Covid 19 vaccination, and the underlying autoimmunity exploded 😨
I developed neuropathy in my feet, hair loss, muscle weakness, severe exercise intolerance, rashes in sun, livedo rash, PoTS, hip pain, nailfold inflammation & haemorrhages. I went to my GP and she ran bloods. ANA negative and no inflammation markers other than fibrinogen was up!!
I was dismissed but completely laid up. I went private to rheumatologist who ran ANA and ENA - ANA stubbornly negative but my ENA retuned elevated U1RNP. He gave me steroids and after 8 weeks my legs felt normal again. However I relapsed once off them.
Tried more steroids and hydroxychloroquine, but had a bad reaction to the latter. He only gave me 15mg steroids which again helped me for 10 days but then I had a huge flare up while still on them, so I freaked out and tapered off.
What doses of steroids were you taking for this initially? I wonder if I need a higher dose to start with.
My rheum is now saying try 25mg and onto azathioprine, but is going to muscle biopsy first to find more data. I am scared.
How high was your RNP marker? Was it U1RNP that was up? Mine was 7.5 which I’m told is borderline. He dx UCTD for now but would change to MCTD if my titre goes up.
I also have something thyroid going on - my TSH is still in normal range, but has doubled since this illness set in, and my thyroid antibodies are borderline positive. They won’t treat this yet but will keep an eye on it.
Sorry this is so long but your story really resonated with me, and I was so happy to hear you can exercise! I miss it terribly and I’m desperate to find a way to be able to ride my bike again.
Autoimmune issues are awful, and difficult to treat. I am currently on T3 hormone 6x per day, as T3 has a very short half life, and I get quite cold if I wait too long between doses. Signs and symptoms are a viable way to use T3.
As to how much pred is required, I had to take 20mg, every day split into 2 doses 10mg AM, 10mg just after lunch. But this was clearly damaging me. I've since reduced to 5mg pred in the AM, and take 10mg Hydrocortisone AM, 20mg hydro at 11AM and 10mg hydro at 3PM. This seems to keep my cortisol levels high enough for normal function. And is less damaging than pred.
I am also on a strict Carnivore diet, eating grilled beef, occasional grilled chicken, nothing else no salads, no grains, etc. This helps to vastly reduce autoimmune symptoms. It's no cure, but it is a big help.
Aspirin helps a little.
Amino Energy by "Optimum Nutrition" is a godsend for me. I take meds and Amino Energy at the same time every day. 7AM, 11AM, 3PM, 7PM, 11PM, 3AM. (no Amino energy at 11 or 3AM) for obvious reasons.
The good news is that I am now functional. Not cured, not fixed, but I have my life back, and I'm incredibly happy about that.
I thought I’d add that I’m nowhere near 100% or cured. It’s just that I’m able to manage my symptoms well enough to function normally as long as I don’t do too much.
I have discovered that following the pattern of doses every 4 hours and the Amino Energy at the same time is quite effective. Today I waited just a little longer and started getting weak legs, which is the first symptom I get.
I do have a positive ANA and RNP antibodies. The level varies and is often about 10 The lab threshold is anything over 1. I understand there is dispute about RNP antibodies. I’ve read that any elevated level is enough and disease severity is not associated with total elevated level
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Blood works and my results 
Incidence of Lupus
LUPUS, activity and exercise
