Hi,
I'm just wondering, has anyone here, changed back to levothyroxine, after being on adrenavive11 and metavive11?
If so, how did the change affect your health symptoms?
I appreciate hearing experiences. I'm still trying to feel an improvement in my health.
Thanks, in anticipation.
Just curious why you want to switch back to synthetic T4? Have you had your blood tests after being on Metavive? How long have you been taking Metavive? How did you feel before and how do you feel now?
Hi Serendipitous,
Thank you for reply.
I have been taking metavive, for about 7 weeks. I took adrenavive for 6 weeks prior. Now take both.
I still feel quite tired. But, worse, is the escalating joint pain. I have recently had an ultrasound, shows tendonopathy shoulder. I also have, neck, knee, back, and hip pain. MRI, shows bulging discs (had prolapse discs twice). Even worse, I have occasional, very heavy, lead like, numb like, feeling, in my legs and feet. However, I am also diagnosed, sjogrens syndrome, so this could be attributed to ss.
I left my previous GP practice, after 28 years, because I had no support, no investigations, other than TSH. I had taken levothyroxine ok for 25 years before I became very unwell. At no time, did my GP want to refer me to endocrinologist, despite my request.
When my body got covered in a rash, and skin eruptions, a dermatologist told me I was over prescribed levothroxine. GP reluctantly, reduced dose, from 125mcg, to 100, then 75mcg a day. GP always told me my pressure on throat, hyper feelings, were anxiety.
Thanks to a rheumatologist in London, I had an ultrasound for saliva glands, for Sjogrens investigation, they were fine, but my thyroid showed up shrivelled, fibrous mass. I was also found to have autoimmune thyroid bloods (rheumatologist in London, checked for me).
I changed GP practice, the new GP is annoyed, that I am no longer taking levothyroxine. My local rheumatologist, is also annoyed about the metavive, and adrenavive, despite my Ro factor reducing for Sjogrens, since stopping levothyroxine.
So, I'm just wondering, if I'm not feeling great, and regular Drs are annoyed, thus affecting relationship to care, it would be good for me, to find out if/how other people cope in such circumstances.
Dr P, is a wonderful Dr, however, he is so far away, and I can't always get a telephone appointment when most needed.
When I first saw Dr P, my tsh was <0.01, (0.25-4.20), after starting adrenaline, 4.57, after metavive 0.79.
It may just be early days on changeover. My body has been through a lot! I was suffering over prescribed pain relief meds (prescribed for prolapse discs, and sciatica), abruptly stopped when I collapsed, I suffered withdrawal, then a host of problems! Pharmacist, told me, my body had been assaulted with prescription drugs, would take a year to be well. It took 2! I am better but not well, as yet.
At last, I did get angry, so my local rheumatologist has referred me to an endocrinologist. If I get no help, I intend to do private blood test, take reigns and manage myself.
Old GP was not totally wrong, by the time I changed practice, I was at an all time low in my confidence. I feel, it was a self-fulfilling prophecy, I was repeatedly told I had anxiety, I began to believe it! Now, I know, for sure, any anxiety was induced through utter lack of respect, let alone lack of care.
webar4780,
Sorry to hear you’re unwell. A lot of us here aren’t doing good and hence why we’re on this forum and other online resources to gain a better understanding of thyroid problems and to become our own health advocates. As you can appreciate yourself you’ve been passed between different “specialists” who haven’t helped. Then there are some doctors that aren’t easy to access either.
Firstly how much Metavive are you taking? Which one are you taking? Bear in mind each capsule contains very small amounts of thyroid hormone so you may need to take several.
Now if you’ve been taking an adequate dose the next thing to do is get a full thyroid panel done. As you’ve been taking Metavive for 7 weeks you should be ready to do but IF you’ve only been taking one capsule a day no wonder you don’t feel well.
You also sound like you have an autoimmune problem. The symptoms you’ve described are indicative of this. The joint pain and the rashes are typical issues. This is where the immune system also attacks the thyroid and causes low thyroid symptoms which is known as Hashimoto’s. Do you know if you have Hashimoto’s? Again private blood testing through a company like Medichecks can help.
Along with TSH, FreeT4 and FreeT3 you’ll also need to check TGab and TPOab antibodies. The level of your antibodies will indicate whether you have Hashimoto’s. The TSH Test isn’t sufficient in showing your thyroid status. Treating Hashimoto’s thyroiditis isn’t however so straightforward as just taking a pill containing thyroid hormone.
Many patients find adopting a gluten free or even an AIP diet useful. Gluten causes an autoimmune response which causes the body to attack your thyroid. You’ll need to find your actual route cause. This could be diet, stress or even a gut imbalance.
This video by Dr Brad Shook explains the link between your gut and your thyroid:
Thank you, serendipitous,
Very interesting video. All makes sense to me.
I did get results saying, autoimmune thyroid disease (AITD). Took info to GP, she dismissed idea of discussing. I asked do you agree I'm autoimmune thyroid, she said yes, but would not discuss further. I told her I had appointment with specialist. Only then, did she agree to reduce meds. Too little, too late, after seeing Dr P, I was advised to stop levothyroxine anyway.
I am still researching self help, though cautiously. I am still weighing up before my decision. As I also have Sjogrens diagnosis, plus allergies to metal cobalt nickel, I will act on sound advice, and my own belief, in where, and from whom, the advice comes. Everyone on HU is so supportive, though, we recognise, what suits one person, is not right for another.
I take 2 metavive11 and 1 adrenavive11 each day. I did think of increasing metavive though, listening to Dr Shook video, that may not solve my particular issues. I also take vit d3, vit C, omega, magnesium, i will ask endo about selenium, zinc, iron, due to allergies.
I have also engaged a therapist, privately, because the poor approach to thyroid patients, did indeed, add to escalating stress levels, at the very time, I needed support.
I find, talking through, my on going frustration, (over my feeling I'm not getting the right treatment, or knowledgeable guidance, from my GP), is helpful. I also attend a mindfulness class.
So, my next course of action, is to go to my first, (in 25 years, endocrinologist appointment), hopefully, get complete blood test, and listen to what he may advise.
Endocrinologist may be the missing link, may help me, if not, I have gathered a lot of information, to go it alone. Meanwhile, I continue under the guidance of Dr P, knowing that he truly cares.
Ps, yes, I do adopt gluten free diet. And, yes, that change has been beneficial. I have always drank 2 litres of water a day. Some water I cannot tolerate, so that was trial and error. We hope to move house soon, then I will have a water filter system installed. I also use fluoride free toothpaste, though, this is very definitely, ill advised by sjogrens specialist (see what I'm up against!). Lol.
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