Well I am pretty unhappy, I had TFTs done yesterday and I only have my TSH back, whether that’s because the T4 and T3 haven’t been done yet I don’t know but if the lab have only tested TSH because my TSH is in range that’s really bloody annoying as without T4 and T3 results I don’t know the whole picture of what the initial dose of levo has actually done and I’m starting to get really f**ked off that I am so ill with fatigue at the moment. I’m slowly losing the will to live because I want to lose weight and be able to exercise and I’m now putting on weight instead of losing it.
I will update if I do get my other results on patient access but for now.
TSH 2.0 0.35-4.94
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Cade83
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Online results aren't available where I live but I get a print out. All my thyroid tests come back on the same day, there doesn't seem to be a reason for the FT4 and FT3 taking any longer than TSH. So I would say that because your TSH is in range then the others haven't been done. This is why so many of us do our own private testing to get the full picture.
When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.
As you have Hashimoto's have you had vitamin levels tested?
How much Levothyroxine are you currently taking and how long at this dose?
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
NHS won't test antibodies more than once
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. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
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
Medichecks currently have an offer on until end of May - 20% off
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
While still eating high gluten diet 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
Hashimoto's frequently 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
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
As your coeliac test was negative you can immediately consider trying strictly gluten free diet
(If test is positive you would have needed 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
I think it’s appalling that we have to take our health into our own hands. I don’t know whether I should go up to 75mcg or stay on 50mcg. I’ve just ordered advanced thyroid test from thrive which tests vit B12, ferritin, vit D, folate and all thyroid tests including antibodies so will know the bigger picture next week and I think I’ll make my own decision on what to do. If my T3 is low I am going to ask for T3.
Dont do anything yet about T3! I appreciate you want to feel well and get things sorted but there's a bit of a pecking order to concider. You need to know if you are converting the inactive T4 to the active T3. That is a fairly common problem when starting out. The other is the doctor not putting you on enough medication but you can't sort that one out straight away. We are normally started on a low dose to get your body used to it. Then you should have been told to return for more bloods in 6-8 weeks. That's because it takes 6 weeks to get each new dose into the system. If on testing the results are likely to say you need an increaexso the procedure is repeated until you are on the correct dose for you and are showing improvement. That is lightly to take at least 3 months. So when you are more settled on your correct dose the next thing is to see whether you are converting the inactive T4 to the active T3. Results should shown both FT4 and FT3 in the top third of their respective ranges. If FT4 is very high and FT3 much lover then you have a conversion issue to address and need to get Vit D, B12, folate and ferritin tested as we are often low in them so you may have to supplement, many of us do, but they need to be optimal, not just in range. They help your thyroid to work much better and can help conversion asxwell as lessening so symptoms so well worth doing. You can only tell though whether conversion is good whilst on Levo only. Once you introced any form of T3 then the rules change. You can no longer compare your FT4 reading with your FT3. To be optimal your results are completely different, your TSH should be suppressed, your FT4 can lower in its range and FT3 should be high in its range. The only reliable reading is the FT3 one.
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