I was just wandering if people on here have to keep reducing their Levothyroxine medication. In 2013 I was on 125mcg Levothyroxine then I collapsed losing consciousness and vomiting at same time. After lots of heart investigation they found my T4 level high at 19.2. And my TSH at 0.03 very low. Drs reduced my Levothyroxine to 100mcg daily and I immediately felt better. Then in 2015 a similar thing happened and was reduced to 100 and 75mcg alternative days. Then in 2017 same again and reduced to 75mcg daily. This year 2018 my TSH was high so they increased my Levothyroxine to 100mcg from this increase I got severely unwell and collapsed and was taken to hospital. It was reduced again to 75mcg.
I was just wanting to know if this lowering over years happens to most people or not.
Thank you lovely people 👍
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McPammy
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Having a quick look through some of your previous posts, could this be something to do with your below range cortisol and borderline Addisons? Have you looked into this? Apparently vomiting and loss of consciousness can be a sign of adrenal crisis. Maybe do some research and evidence gathering to discuss with your doctor.
Hi. Yes, in 2013 when that happened there was a high reading to do with my adrenaline methoxyramine. I spotted a letter off my GP from then the other day. But then no further investigation. I will take this with me to my Endocrinologist.
Just thinking about all the reduced doses since then.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or 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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Being under medicated for thyroid puts strain on adrenals
It can be chicken and egg. Your adrenals are not working due to being hypothyroid, but you can't tolerate thyroid hormones because your adrenals are not working
Daily vitamin C and good levels of salt in diet can help support adrenals
Google Adrenal cocktail too
You should be referred to adrenal and thyroid specialist endocrinologist
Email Dionne at Thyroid Uk after Jan 3rd for list of recommended thyroid specialists
I’ve had big problems this year with Levothyroxine. I’ve had to lower my dose from 125mcg in 2013 to 75mcg this year. Each year in between lowering.
My vitamins have been bad this year. b12 was 132 far too low now loaded and ongoing injections quarterly. Also ferritin was only 15 far too low also. Now on iron tablets for 4th week. These could have been low for years. No evidence from GP for previous years. Vitamin D has been good at 98. Folate is 6.2 above 4. I thought it may be usual trending downwards of Levothyroxine but maybe not then. I’m seeing my new private Endocrinologist in Oxford next week so hopefully he will prescribe me some T3 and then I can trial that.
Took 20 years for them to find I had a thyroid disorder even though my mum constantly asked for test as it ran in both sides of family. I was told it was my antibodies that was the problem and had to b tested each time as the thyroid itself was working well. My dr retired and I had to change. The new dr has mucked about with my tablets so much, she looked at me like I was making up antibody tests etc and reduced my meds which within 2 months I was back to where I started, constantly tired, dry skin, weight gain, always cold.
I know the importance of not having too much medication. My mum was the opposite to me she had overactive thyroid which was undetected and she was rushed to hospital and we wasn’t sure if she would be ok as she had suspected liver damage. The damage was caused by thyroxine poisoning.
How awful for your mum. It’s a journey we’d all rather not be on.
I believe that Levothyroxine has caused lots of issues for myself.
I’m hoping to get to the bottom of it soon.
Why does my body keep rejecting it and why do I have to keep lowering my dose year after year. Now I just cannot take it or I get very ill within days. I’m now on NDT but to be honest that’s not great for me either but it is better than Levothyroxine.
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