I recently found out I have an under active thyroid and possibly hashimotos. I’m doing my research learning about it but I was wondering for those who have experience dealing with it: what do you wish you knew then, when you first started dealing with it, that you know now? what has helped you most in improving symptoms?
I realize not everyone has the same exact symptoms and there’s no one size fits all treatment but it’s still helpful to learn from people who have experience dealing with something I have myself.
For me it would be finding this wonderful community. I was completely lost before joining. I’ve had so much help on here. So you’re doing great to find it so soon 🙂
I wish I'd know about nutrients, and insisted on getting them tested. But, not one of the many doctors I saw mentioned nutrients.
The thing that made the biggest difference to me was taking zinc. I had terrible muscle pain, and was taking 4+ ibuprofen every single day. The muscle pain stopped almost over-night when I started taking zinc.
Second biggest effect came from B12. I must have been B12 deficient for about 30 years, and no-one ever tested it, or even mentioned it.
Doctors know nothing about nutrients, which causes a lot of suffering among thyroid patients.
Interested to know which zinc you have found to work. Waking up each day with a lot of pain in my feet, legs, hands and arms is one of my worst symptoms so I’m keen to try anything that helps. Sorry to hijack the thread but I can see giggy63 has also asked.
Well, there are different types of everything. It's just that I don't know which type of zinc is the best. But, I don't think I would ever buy anything in H&B. Maybe someone else will come along with an answer.
I don't if these are the "best" but I did do some research about different types of zinc , which types were more bioavailable and settled on this one which I like-
How much zinc do you take each day @greygoose- mine are 25mg
I wish I’d known then that Dr’s knew so little about the Thyroid and that most of that was wrong anyway! For a while back then, I trusted that they were the experts and that kept me ill for much longer than necessary.
To regularly retest vitamin D, folate, ferritin and B12
To realise that these need to be at GOOD levels...not just at bottom of range
To do blood test for coeliac ....and, assuming test negative, still trial strictly gluten free diet
To do thyroid blood test as recommended on here....as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
I’ve learnt that it’s a process and trying lots of things. Gluten free and dairy free diet are first things to try from a functional medicine perspective...Functional medicine is where I get my info from. Good book: Hashimotos protocol by Isabella Wentz
Gaslighted by the GP’s for most of my journey (12yrs). Being made to feel like I’m the problem and not their inadequacies. Really fucked up my mental well-being for years. About 5yrs who I started researching cause the Levo that was supposed to help me ‘be normal’ really wasn’t. I found it difficult to join up the dots. I knew there was something about the T3 so insisted that I get. It tested every time and went down a rabbit hole with think the antibodies were involved in me being ill, then trying to manage Hashi’s on TSH result. Finally I found ThyroidUk and this forum and voila!
Found out I need combo treatment and I can’t utilise all the nutrients from diet alone so I supplement them too. All in all life is good and I’m not as arsey anymore.
This forum for sure has helped me more than anything else. It was here I learned I was entitled to see my test results and my Medical record. That’s where my journey started - being able to take responsibility for my own wellness
Definitely this forum and ThyroidUK. I wish I’d found it sooner before being pushed into having RAI treatment but at that time I thought the Endo was looking after my best interests. How wrong can you be, I’ve been left suffering from under medication (and a totally useless dr) for almost 2.5 years. In that time I’ve tried NDT without much success and now trying to find the right dose of T4/T3 with no help whatsoever from GP who, having not seen me since April last year decided to diagnose me with CFS over the phone a couple of weeks ago. I can’t tell you what I said to him 🤫
My advice is, read, read and read some more - you know your body better than any Doctor.
Zinc is usually included in all good multivitamins. The usual amount is 10mg. Long term high dosage can compete with copper, so both are usually included in a good multivitamin.
My son has recently been diagnosed as hypothyroid, so I’m
Lol. The cheap ones are not the best. I use ones from a company called Cytoplan, wholefood and food state vitamins and exceptional quality!
thank you everyone for the responses. lots of good advice like nutrition. im getting a general consensus across all boards (and social media platforms) to not blindly trust doctors because they’re human and to seek support from people with similar issues.
You don’t ‘blindly follow’ doctors because they don’t know what the hell they’re doing 😬 And also I’m convinced that most of them are not remotely human, certainly they have no heart. ‘We’ on the other hand are very human, between us we have amassed a huge repertoire of knowledge AND we’re all heart 🤗
Finding healthunlocked was a major game changer for me. It helped me understand the different bloods i was being checked for and how to understand what my results meant to me and my symptoms. Healthunlocked gave me the oppununity to learn about options for my medications. Buying my own if need be. Healthunlocked also gave me valuable information on tried and tested approaches to help with my own throid health journey. Healthunlocked also gave me the opportunity to share my own thyroid health trails and errors and findings.
I was lied too by my GPs about what medications were available to me after experiencing terrible side effects from start date of Levothyroxine and asking for an alternative medication and was told there is Levothyroxine or coma.
My experience to date, 1) Diet makes a huge difference, for me i feel best on keto and IT although they say don't skip meals with hypo i however actually feel better when i do.
2) Balance, finding a workable balance between what i would like to do and what my energy levels allow me to do. I rest now, i still hate resting but i have no choice.
3) Water intake, i have increased my water intake and it seems to help with the brain fog which you may have heard or experienced.
4)Suppliments, i feel better if i take some ashwagandha, ginseng, resveratrol, biotin for hair loss etc. b complete for low energy, multi minerals if I'm not eating enough greens, collagen for my dry skin and hair, Floradix also for energy but not when I'm taking b complete.
5) Reduce as much stress as possible, for me stress was a root cause of my autoimmune response. Supermarkets, my local town centre, public places caused me extreme stress so i try to avoid busy times, mornings are usually a little more carefree. If i start to feel stressed i leave immediately and take a nap or listen to some classical music which is good to relieve stress.
6) Carefree trips to rural areas without busy traffic, high pollution and toxic people can create a feeling of wellness.
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Under active thyroid
Under active thyroid 
Under active thyroid 
Under active Thyroid
