So last September I finally got put on a combination of T3 and T4. Great what I've always wanted.... or so I thought.
My starting does was 50mg Levo and 10 of lio in morning and 10 in afternoon.
At the end of November I was put up to 100mg of Levo and 15 of lio in morning and 15 in afternoon.
Shortly after this increase. Well 9 days to be exact, I started having allergic reactions. Swollen lips (so bad I ended up in hospital 3 times) swollen tongue, fingers and now it's my inner elbow and wrists. It takes about 12 hours to go away with antihistamines.
It's so frequent now I am getting it 3 times aweek in different places. I've rulled out everything with a food diary and product usage.
I'm at my wits end. I've been waiting since January for a urgent appointment with an allergy specialist. Still not even received a letter.
Has anyone experienced this with T3??
I went down to 15 in morning and 10 in afternoon and it stopped for 3 weeks and now it's back again. Doctors won't listen to me!!
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Julie88
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Hi no change in any brands. No it happens to my tongue and my arms and fingers so isn't filler either.... it comes and goes can be weeks apart. Sometimes lips. Sometimes tongue. Sometimes my hand or fingers. Other times it's arms.
My last filler was a year back in January. The same productive I've used for years. I've never been allergic to anything in my life.
I don't know if it has any connection, but your doctors would appear to be rubbish at dosing!
Did they start you on both levo and T3 at the same time? 20 mcg T3 is a huge dose to start on. Normally it's 5 mcg a day. And you wouldn't start someone on both at the same time. Given that T3 is 3-4 times stronger than levo, it gives you a starting dose of about 110 - 130 mcg a day. The normal starter dose is 50 mcg.
And increasing both T4 and T3 at the same time is also wrong - plus 10 mcg is too big an increase, it should be 5 mcg. And 50 mcg levo is too big, as well. so you've now shot up to between 190 and 220 mcg a day. That's a huge dose in such a short time. Did you at least have a blood test before the increase? Have you had one since? It's possible you're over-medicated now.
I was on 175/200 of Levo alternative days before I started the combo.
I have had all my Vit levels checked. I am going to doctors at 4pm and will post a print out.
My levels were all in range when I was tested on 100 of Levo and 30 of lio. First time in 5 years my hair hasn't fallen out. I sleep better, I wake up when my alarm goes off. My brain fog is almost completely away.
My only issue is the reactions. They may not be related. But I've tried everything else.
I just wanted to see if anyone has ever experienced anything like this on Lio.
On several previous posts many members (9 months ago and 7 months ago) said it was essential to test Vitamin D, folate, B12 and ferritin, especially as you have Hashimoto's
Can't see any mention of vitamin tests anywhere in any posts
Has these tests been done? If not I would strongly recommend you get full private testing ASAP
What supplements do you take?
Are you on strictly gluten free diet as you have Hashimoto's. Many patients find it essential before starting on T3
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.
Plus vitamin D, folate, ferritin and B12.
Essential to test thyroid antibodies, FT3 and FT4, plus vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting.
If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
However, when I was 64 I started developing quite serious allergic reactions to foods, drinks, smells, medications, toiletries, make-up, formaldehyde (in new clothes, furniture and car fabrics), sunshine, metals, cobalt, nickel... I had testing done showing I was now very allergic to metals, cobalt, nickel, which are in all other products, including food!
Won't bore you with long story, but I kept saying its my thyroid! No Dr listened to me, or would test my thyroid as new criteria for testing is now one year.
However, once my body was in total skin rash flare, a dermatologist noted I was over prescribed levothyroxine. I had been taking it for 25 yrs! A GP still did not alter dose as she didn't want to 'step on her colleagues toes' (whilst my GP on long holiday!).
I got myself on a volunteer programme, a consultant who had the grace, to listen to me, sent me for tests. I was now autoimmune thyroid and ultrasound showed thyroid had shrivelled. My TSH was <O.01. My GP changed my dose from 125mcg, to 100mcg, then after retest, to 75mcg.
It has taken 4 years, battling, seeing private nutritionist, learning on HU, changing my GP practice, but at last, I feel as though I am in recovery from most allergic reactions.
I have recently become a patient of a lovely endo, never been allowed referral before. Endo assures me, I will get well, it will take time. My thyroid had not been able to cope, levothyroxine had built up in my blood, and my system became toxic.
Rest assured, our bodies know what we need, they will surely let us know if something, (even someone!), is upsetting them!
Thus, from my own experience, I would agree with greygoose.
I was on 175/200 of Levo alternative days before I started the combo.
I have had all my Vit levels checked. I am going to doctors at 4pm and will post a print out.
My levels were all in range when I was tested on 100 of Levo and 30 of lio. First time in 5 years my hair hasn't fallen out. I sleep better, I wake up when my alarm goes off. My brain fog is almost completely away.
My only issue is the reactions. They may not be related. But I've tried everything else.
I just wanted to see if anyone has ever experienced anything like this on Lio.
Yes but WHERE in range ? Multi-vits are rarely enough of anything and full of nasties in some cases.
A red beefy tongue is indicative of LOW B12 .... so check your result and post ranges. Being in range is NOT enough - you need to know where you are in the range. Ferritin is good around 70 - Folate and Ferritin mid-range - B12 - over 500 and VitD over 100.
If you supplement a good quality vitamin B complex that will keep all B vitamins balanced.
Everyone has their personal favourite. I prefer Igennus Super B complex. Full dose is 2 tablets per day, am and pm. Can start with just one per day in morning. See how it goes and add another in pm if all OK in couple of weeks
You may need to add vitamin B12 sublingual lozenge daily as well, but only start with B complex and see after a month
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Ferritin dropping fast. Have you had ferritin supplements before? Eating liver once a week should help improve too
No vitamin D test? Essential to test.
Vitamindtest.org.uk £29 postal kit
If you are not strictly gluten free then it's really definitely worth trying. High percentage find it beneficial or essential
Absolutely essential to test FT3 and FT4 at same time as TSH. Many many patients have to test privately via Medichecks or Blue Horizon
If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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