Hello, I wanted to drop you a line and introduce myself and also say how very grateful I am to be here. In 2008, after the birth of my son, I developed huge goitres on my thyroid and had a TT. No one told me that there was a direct link between post-natal depression and thyroid disorders, I just thought I was a terrible mother. No one told me that without a thyroid gland I'd have problems converting T4 into T3, I had no idea what reverse T3 was until a week ago.
After another unhappy visit to my Dr last week, I decided to start looking into what was wrong with me. I stumbled across this group (lurking, not as a proper member!) and I saw that T3 could help. I also found a community of people that had similar stories to me, and sadly, in many cases, much worse. I've felt alone in all of the horrible things my body has given me over the years, the weight gain, the sadness, the anxiety, the brain fog, insomnia, the bad skin and hair, I just thought it was me, another example of me not being good enough. And it wasn't.
All this time it wasn't my fault and if I'd known, if the resources had been shared by my care provider or just one of the many, many Drs (many of them private and very expensive) I've seen, could've taken the time to say, actually, you didn't do anything wrong and here are all the people that are in your boat.
I have never been so grateful to be a part of a group as I am here. So thank you, thank you so much x
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MrsMark
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I've just read your story, sadly I do not have the vernacular to say how desperately sad I am to hear of all of the trauma you've been through. And yes, here's to getting better, for both of us. With all good wishes, Emma
Yes, it’s been hard, very hard. But on this forum it never ceases to amaze me how much many others members here have suffered. The relentless apathy, anxiety and sense of unease we have all tolerated at the hands of inept medics. We will get well. The worst is behind us both xx
First step…..ideally BEFORE you start reducing levothyroxine or adding T3 is to get FULL thyroid and vitamin testing done
Have you done that ?
Likely GP only tested TSH?
Was test done early morning and last dose levothyroxine 24 hours before test
You’re currently on 150mcg ?
Which brand of levothyroxine is this
Do you always get same brand levothyroxine at each prescription
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
I’ll try and answer all of the questions in order, and I’ll share all my test results.
So, I did go my tests first thing in the morning in a fasted state with my GP and didn’t take Levo for 24 hours. I can’t remember the brand name, I thought it was just levothyroxine? I’ll check. It’s the same brand I’ve been on for over a decade.
I don’t think my vitamins were tested. I get tested every four months. I had no idea the effect of vitamins on thyroid function until last week, I know take a women’s health multivitamin in the evening to ensure it doesn’t interfere with my Levo.
I’ve heard of hashimoto but I don’t know much about it and no one has ever suggested I have it (but I doubt anyone was probably looking!)
I can’t have a scan on my thyroid because I don’t have one anymore!
The pharmacy I spoke to today was very informative and have given me a prescription for 10mcgs of t3 for three months and then I have to have bloods to see what’s happening. She said it would be a long road to find the most accurate treatment for me but she would help me to get there. She did mention about a low dose of Naltrexone but I don’t know anything about that yet.
Thank you for being so brilliantly thorough and helpful, it’s very much appreciated.
Yep, that’s what the pharmacist said! Lots of info, nothing if any use! So my Dr won’t give me another blood test and it’s £90 for a private screening so pharmacy said do next bloods in three months.
T3 only requested today so it’ll be a few days before it arrives. I’m not adverse to starting slow, I’ve read a lot about side effects so I’m happy to take the slow and steady route and see how it goes.
I have a pill box already 😊
I really can’t thank you enough for taking time out of your evening to share so much advice, it’s very kind.
That makes me very sad I’ve got Hashimoto’s. I’ve had it for over a decade and no one knew . I already follow a strict gluten and dairy free diet as I have endometriosis and gluten and diary can make it worse (apparently).
I’m really upset about the Hashimoto thing, I don’t know why. I just can’t fathom why over thirty Drs didn’t figure it out and help me but two hours on this forum and everything becomes crystal clear. So many years of my life that I’ll never get back 😔
showed a strong association of autoimmune diseases with endometriosis. In particular hypothyroidism such as Hashimoto's thyroiditis (HT) showed a 6.5 fold-increase in the endometriosis versus control groups.
Good to know you are already on strictly gluten free diet
Dairy free too
As you are lactose intolerant is your levothyroxine lactose free?
welcome MrsMark sending you a massive hug and wishing you well on your quest for health. I echo the intense sense of relief on finding this forum. Sorry you have had such an ordeal. Hugs 🦋💚🦋
Your recovery starts here.! I can vouch for that. The forum possibly saved my life, I could barely function when I arrived
The collective knowledge of experienced and knowledgeable members is vast
SlowDragon has already advised about testing which is essential...before altering your dose.
To obtain the best results test after you have been on a steady dose of levo for at least 6 weeks...and before you add T3
To achieve a full thyroid test many of us test privately....
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and TG.
Those results will point the way forward
To diagnose. these labs must be considered along side clinical evaluation ( signs and symptoms/ how you feel)
I now need high dose T3-only to function so understand how challenging a thyroid journey is....as do all of us here.
The thyroid gland produces about 20% of the body's T3 and 80% of the T4. Most T3 comes from the conversion of T4 to T3, mainly in the liver but also in peripheral cells.
Conversion doesn't happen in the thyroid gland
Be under no illusion it can be a long, dark, bumpy, exhausting and sometimes lonely road. But, once you accept that with the correct medication, and with an increasing understanding of your condition, you will slowly discover that there is light at the end of the road.
Thyroid disease is notoriously badly understood and treated by modern medics who mostly rely on TSH as a marker and replacement T4 alone as a treatment.....it is scientifically proven that both are wrong. Particularly for patients whom do not readily respond to levo mono treatment.
So....you are not alone!
If you can, follow SlowDragon's advice re testing, post the lab results of the tests listed above, including the reference ranges, and members will help.
Welcome MrsMark , your healing starts here. It was this forum that got me from bed/wheelchair bound to now almost fully functioning human again. Good luck and don't be afraid to take everything slowly, it is actually quicker and less traumatic for your body in the long-run (if you know what I mean). 🙏 It took me a while to feel fully better at my optimal dose, I'm assuming because I was so poorly for so long and my body needed the time to heal. Then perimenopause hit and everything is out of whack again, so trying to get back to optimal again. It's a long, slow road full of twists and turns but with the help of the fabulous people here, it's actually quite empowering taking back the power over your own health. 💜
Thanks for sharing that it makes you feel like it's all your fault. It's a feeling I'm very familiar with. And it makes me so sad you feel it too. Because it's an awful feeling. It does make me feel stronger and more empowered to hear others with Hashimoto's are feeling it too. So I'm totally with you on how life-saving this forum is. I think we're both at the beginning of learning about our bodies and feels like a long way to go. But wish you all the best! I do believe it will get better now we've found this space!
You are certainly not alone.. you will find the rainbow in your cloud❤I have learnt so much from this forum and other peoples experiences, it has been invaluable to improving my health.
I am currently venturing down the lifestyle: reducing external stress by meditation and proper breathing. Diet: gluten, dairy and sugar free. Sleeping: working on a routine.
All of this alongside medication, getting vitamins optimal and regular testing I am feeling so much better. Ferritin is proving the most difficult but I am getting there with the help of the forum.
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