I have stopped taking my levythyroxine as it was making me feel more and more ill. Been on it for 4/5 yrs. Obviously after a brief period of feeling much better my symptoms have returned with a vengeance. My GP isn't interested ,vit D results were over month old before decided they were low enough to warrent supplements after chasing him up! Have ordered blood test kit but feeling so low haven't done it yet. Need a massive kick up the are but so tired and sick of people thinking I,m lazy. Why is it all such hard work!? Yes I know stop the pity party and get on with it. I have been telling GP for last 4yrs about various symptoms and got no where, I must be imagining it all ? Sick and tired of being completely debilitated by this.
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Katkrap
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Then you really need to start taking Levo again, you can become extremely unwell.
You may need to start on just 50mcgs and then wait 6 weeks before retesting and likely an increase by 25mcgs
How much Levo were you taking?
Do you have copies of last blood test results and do you know if you have high antibodies, which shows cause is Hashimoto's also called autoimmune thyroid disease
With all hypothyroidism, but especially with Hashimoto's low vitamin levels are extremely common
Do you have results for B12, folate and ferritin too
Yes you are right you did need to supplement vitamin D. Have you started this and how much is the dose? If it's only 800iu it's very likely not enough, most of us with thyroid issues need 2000iu minimum just as maintenance dose. More to raise levels
Hi, sorry for my apathy. I was in so much pain on levy I was taking up to 200 MCG but started lowering it. I had only recently realised the intricacy of the thyroid having just gone on my GPs attitude to it , only having ruled out other reasons for my poor health did I even start to read and research it. I have finally got docs to give me copies of my blood results, I can pick them up tomorrow. Was just going on them saying I was all normal on test results so thought it was in my head. But after being housebound for months I realised it wasn't. I have 10,000iu vut D tablets but he only gave me them after calling to say how poorly I felt! Yes I will wait till Monday for tests and today I have started taking 50mcg of levy. I can hopefully get the T3/T4 meds from Poland, my brother lives their and his doc friend is going to sort it for me once I have test results. I am trying but takes so much just to do the bare minimum of looking after my disabled daughter and then nothing left to sort myself out. Thank you for reply as I have been too scared to post before as everyone seems so knowledgeable I felt stupid for not reading up on it before. 🙄
Well done for taking first step into sorting yourself out.
We can not rely on GP to understand this complex disease
Essential to find out if you have high thyroid antibodies. This is autoimmune thyroid disease also called Hashimoto's
Test result would say TPO antibodies. If not been tested, ask GP to do so
About 90% of hypothyroidism in UK is due to Hashimoto's.
Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.
Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. When they are too low they stop Thyroid hormones working.
With very low vitamin D, it's likely you have Hashimoto's (GP's tend to call it autoimmune thyroid)
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
We all want to believe the GP knows how to make us better. But sadly with thyroid and especially Hashimoto's it's not often the case
It took me 20 years to realise that the gut was involved. I was tested for coeliac, back then & told it was negative. Of course never realised gluten intolerance was highly likely.
Thank you I will. I have developed a.lot if gut problems in last 12months and so I have been reading up on leaky gut. I will post tomorrow. Thanks again it's helped with my apathy just to connect with others. 😀
Sorry I replied but must not has posted it. I stopped taking about 4weeks ago , I had been reducing from 200mcg downwards to nil over a 3 week period. Initially felt much better till last few days when I have been so exhausted again I slept for almost 2 days solidly. I took 50mcg today but will not take one in sun as going to get my teat done and sent back. Thanks for reply
If you've only been off Levothyroxine 4 weeks you can resume 200mcg if you want to. It will take 7-10 days to absorb the dose before it starts working. You could hold off testing until you've been back on 200mcg for 6 weeks.
I was thinking to get a test done whist on no levy coz this time I couldn't afford the other test that includes Rt3 which I wonder that's what was causing me to feel worse? Tbh I am so confused by this t all so just gonna get first test done on Mon and go from there. I am thinking it will give me a baseline to work from?
I,m picking up all blood test results done in last 4yrs tomorrow , I was on high dose on last test. The test I've paid for includes vitamins etc I will check. I have been on a dose of 100 up to 200 over a period of 3+yrs but was always being altered. I want down hill rapidly after working nighshifts for a year, it messed up my eating and sleeping so much and never quite got back on track been t now I realise the importance of both I am currently trying harder to sort both.
You don't need an rT3 test done. RT3 doesn't make you feel anything, as far as anyone knows. And it's not likely to come back high, as you aren't taking any levo at the moment - unless you have a bug of some sort, or high cortisol. And, it would be cheaper to test the cortisol, and more useful, I think.
Whilst taking levy I think the rt3 would have been high and causing my problems which us why I stopped taking it. The test I am having doesn't test for rt3. I just want a base line to get the type of meds and amounts correct
In my limited capacity, as I too am a learner on this site, reverseT3 is a storage of unconverted T4 - since you're been off T4 if you had any it would by now have reduced itself and gone - reverseT3 may hinder your conversion of T4 to T3 - BUT SO MAY your vitamins and minerals these also need to be at an optimal level for T4 to work effectively - post your previous blood results here before paying privately - the people on this site are amazing and they will advise where to go from here once they have the necessary information.
Yes I do understand the rt3 it is the levythyroxine I have the issue with and will be getting a mix med of t3/4 from abroad to see if that helps along with eating/sleeping well and monitoring vitamin levels etc. I know what I have to do just felt too crap yesterday to even contemplate the starting it all. But I will coz as you prob know yourself it's sort it out or have no life just a very bad existence
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