Hi all I’m new to the site. I’m 42 and was diagnosed with under active thyroid in 2001. I take 175 Levothyroxine daily and have done for many years. My GP is very supportive or knowledgeable and refuses to test my T3. I feel no benefit of taking Levothyroxine and would like to try Liothyroxine but do not have a prescription- I would appreciate PMs if anyone can recommend any reputable brands and sites to order from. I need to try to help myself I just can’t continue living like this, every day is a huge struggle 😕.
Any advice etc would be greatly appreciated thank you 😊
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Before even considering adding T3 it's essential to test vitamin levels and your FT3 and FT4
Have you ever had both TPO and TG thyroid antibodies tested to see if cause of hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's
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
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose 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)
Is this how you do your tests?
Ask GP to test vitamin levels and thyroid antibodies if not been done
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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 .
Vitamins need to be at optimal BEFORE starting any T3
If you have Hashimoto's, then it's likely gluten is causing problems too
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
If you add your most recent blood test results and ranges members can advise on next steps
Hi Welcome to the forum. I don't know where to access T3 but we need to look at other things first. This is because once you are taking T3 then some tests can't be done yet need to be addressed first.
Is your doctor testing at least TSH and FT4? He is completely wrong to say you don't need T3 testing because you aren't taking it! The basic premise is that in taking taking T4 because we are underactive that our body is converting some of it to T3 so firstly we need to know if that is happening correctly. Levo is a storage hormone but we should be converting some of it into T3 ourselves as that is the important active hormone. So yes we need that to be tested to see if that is happening correctly.
From your comment I'm thinking you aren't feeling as good as you think you should and yes this happens to many. It that doesn't mean we should accept that, we need tests to show that is happening. TSH seems to be the only test that is carried out for many and in isolation gives very little help and may be none at all. Some have us have lazy bodies, not our fault but sometimes when our body is aware that we are getting thyroxine from elsewhere it can think great, I've no reason to work on that anymore and so their TSH reading is meaningless! Most of us feel better if our TSH reading is nearer to 1 or even under. Even NICE guidelines have recently said it should be lower than first indicated. I can't remember the exact figure but an upper level around 2.5. If you are fortunate to get FT4 tested then that can help a little and ideally we are looking for a FT4 reading to be at least in the top third of the range or even in the top quarter hence others asking for that result as well to be tested.
Again your doctor can misinterpret that. He may think that if your FT4 is high then that is good and if at the very top or slightly over may even drop your dose down a little. BUT a high reading can be telling you that you are a poor converter but without a FT3 reading we can't be certain of that. If your FT4 is high and your FT3 is low then that shows a probable conversation. Issue and needs addressing. That brings us into more tests, Vit D, B12,, folate and ferritin. These help your thyroid to function better, can help conversion and can help you with some symptoms you may have but these need to be optimal so again post any results, your doctor may test them, and others can comment but I managed to reverse my conversion issue but you need these readings to be optimal, not just in range plus it takes time depending how low they are. Usually when you have to supplement then it's usually for life and many of us do. Once optimal you may be able to find a maintenance dose to keep you there. So that needs to be addressed before you take any T3. Once on T3 results are read differently so only the FT3 reading is accurate so you can no longer see from your readings if conversion is an issue.
Also some people taking T3 find difficulty in raising the dose until the minerals and vitamins are addressed.
If your doctor won't do these extra tests then see if he will send you to see an Endocrinologist who may be able to help you but there are good ones and not so good and if you go privately can be expensive as well. Thyroid uk, who run this forum, have info on their site and you can ask for a list of recommended ones or you can ask on another thread for help but you must ask for replies by private message as we aren't allowed to give names publically, and also give the area where you are able to travel to and remember some counties are quite large so something like South ....... and West ............?
Medichecks are recommended for testing and actually have offers on a Thursday so worth looking at so you order on the Thursday the offer is given but I think who have up to 6 months to use the kit but probably more info on their site.
Sorry it's a long post as you may know some of that but hopefully some bits are helpful and help you what to look at next. If you post any results then always postcthe rages as thyroid ones differ from lab to lab and others will as well.
Hi and welcome. Yes, you need to get copies of recent test results and post them here (with reference ranges - usually in brackets or with a little "R" after each result - we can see if vitamin and mineral levels are OK, as well as thyroid hormones. Hypothyroidism affects the whole body, including the gut, so absorbing nutrients is more difficult.
Most people do OK on Levothyroxine also called Levo or T4, but some need T3 as well (it's Liothyronine, not levothyronine by the way), but you have to get them tested first. T4 is a storage hormone, which is converted to T3 when needed by the body. If you don't convert very well, no amount of Levothyroxine will make you feel better.
175 mcg sounds a high dose - perhaps too high. If there is too much T4 in the body it gets converted to Reverse T3 which actually blocks the action of proper T3, so makes you feel worse!
Have you been diagnosed with Hashimoto's (autoimmune thyroiditis)? That's the most common kind of thyroid problem and is shown by presence of high antibodies that attack the thyroid gland.
A private test might well be the best. I recently had one from Medichecks. Expensive (though a basic thyroid test - T4, T3 and TSH only - is under £40 if I remember), and they sometimes have offers - usually on a Thursday. There are other companies that do private tests too.
Sorry, this is a long post, hope not too confusing. When I joined this forum - less than a year ago - it took a long time to get my head around so much information. But keep reading and asking questions x
Thank you for your replies. I was diagnosed with an under active thyroid in 2001 by a private doctor my employer sent me to - my gp agreed with the diagnosis and prescribe Levo after telling me themselves my thyroid levels were normal and I was not under active
In 2009 I begged for a referral to Endo which was refused luckily they did refer me privately I was then diagnosed by Endo with PCOS and insulin resistance and prescribed metformin. I stopped the metformin in 2010 after I had my daughter- post pregnancy I have never been able to tolerate the metformin- gp insists it’s not necessary for me to take.
I have annual thyroid tests which have mostly been “normal” - the odd occasion my Levo dose has been adjusted.
I also suffer from ME / CFS everytime I See a doctor every symptom I have is just put down to
That. I asked for a referral back to Endo twice but have been refused, the Endo will see me privately but I’m not sure if I can afford the tests etc.
My thyroid was tested a week ago and my levels are normal. My blood test for diabetes is now abnormal and has to be retested in 2 weeks, I would strongly imagine I’m now diabetic 😕.
I asked my gp yesterday for a T3, vitamin and antibodies tests but they have refused as my T4 and TSH are normal - they also refused again to refer me to Endo.
I read about blue horizon and medi checks home tests and think this may be where I should start and if it indicates I need T3 I guess I will need to obtain this myself so would still appreciate PMs with any recommended brands / places to purchase from.
Thank you for sharing your journey. If you post any results it's helpful to put the rangesas they differ from lab to lab so we need to see the ranges that go with your results but it is reasonable to say you look under medicated as many of useould think TSH top of normal range and many of us are much lower than yours. FT4 is on the low side aswell and I think we can presume that FT3 is as well. Many think that if you are in range then you are fine but it's often where in the range that is so important. I would push for an increase as NICE have made an ideal TSH range lower and see what. Hange that makes for you. It may not be perfect but if you feel better then that's good.
Nothing is certain with this thyriod business but if you want to build a case for yourself for the prescription of T3 then you’ll have to start with a history of numbers.
Atm with the TSH and FT4 that you’ve had done all that can be said is that you’re TSH is a little high and your FT4 could be raised.
At this moment in time I’d go back to the Dr and ask for a raise in Levothyroxine. The lowest dose tablet that’s usually prescribed is a 25mcg tablet. Increasing by 25 each day might be too much. Tell your Dr that you want to add it into your schedule twice a week. That’s a total of 50mcg extra a week. Then get tested 4wks later and see how the bloods are along with symptoms. Work with your Dr to increase your Levothyroxine slowly till you find the right dose for you whilst also conforming to their TSH test. Show your Dr that you’ve done your research and you know there’s a little wiggle room within the range and you are not being put at risk just to lower that TSH.
So that’s for the Dr because they really get stuck on TSH.
For you, you want to get a home blood test to see what FT3 is like. They’re expensive so I’d wait until you had the increase in meds (unless your Dr refuse the increase and then I’d do it now) or you can afford it so get one down now and one 4-6 was after the increase. This will then start your ‘proper’ history.
With the home tests you can get your vitamin levels checked as well so that’ll be good to know.
Progress to optimal levels is slow, patience is very much needed. Support and best wishes a plenty on this forum 🤗
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