Diagnosed with likely Hashimoto's in March of this year and multinodular goitre. TSH didnt go above 10 (but over normal and reached 9.5 and was out of range for over 3 months, albeit with "normal" free T3 and free T4) but was v symptomatic and started on thyroxine. Antibodies v high. Got up to 75mcg but then had suppressed TSH of 0.23 so GP rolled back to 62.5mcg about a month ago. Was iron deficient but now supplementing thanks to this group and ferritin is now 30 (and hopefully going up - hair jas stopped falling out too) when it was 5 originally. Taking Vit D and now have vit D of over 100 when it was 35. Vit B12 was low on last count but GP said this was a problem with the lab but told mw to supplement (stupidly I started a complex with Biotin and so wonder if have screwed up the blood results I have just done.
Was starting to feel tired again and so took my own blood through Thriva on Monday (morning, fasted, 24hrs after levo, but had taken Vit B complex with Biotin the day before).
Results just back (photo.attached)... Not sure what to make of them but TSH has gone from suppressed to over normal range in a month after dose decrease (they also changed my brand... I was on Mercury Pharma but now on another brand). Free T4 high normal, but free T3 has always been low normal and hasn't changed throughout. Ferritin and Vit D getting better but will keep on. Wheny TSH was suppressed it was just post heatwave and I rhink that mau havhave affected... Had quite a tender thyroid at that time and wonder if I had a flare temporarily which sent me hyper at that time.
My thoughts on a plan were to continue iron supplementing for longer, and Vit D at maintenance dose, stop the complex with Biotin and use Thorne B (should I take separate B12). Not touch thyroxine for now and then have my NHS test in a month but come off the B vitamins a week before (is that right?). Ultimately I wonder if I might need some T3 too and thyroxine increase at some point.
Was complicated by first appointment with who said they wouldn't have treated me and I should come off all thyroxine 😳. GP agreed with me to stay on but just reduced dose.
Wondered what your thoughts are?
Yours in tiredness ☺️
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Got up to 75mcg but then had suppressed TSH of 0.23 so GP rolled back to 62.5mcg about a month ago.
Actually, suppressed TSH is <0.1, yours isn't suppressed but I expect it was below range.
What were the FT4 and FT3 at this test? TSH is useful for diagnosis but once on thyroid hormone replacement it's not a useful test and certainly dose should not be adjusted by TSH. For a full picture of thyroid status we look at FT4 and, more importantly FT3 (this is the test that tells us if we are overmedicate, if in range we are not). Unfortunately doctors are taught that TSH is the only important test. Never agree to a dose reduction unless both FT4 and FT3 are tested at the same time as TSH.
stupidly I started a complex with Biotin and so wonder if have screwed up the blood results I have just done.
Was starting to feel tired again and so took my own blood through Thriva on Monday (morning, fasted, 24hrs after levo, but had taken Vit B complex with Biotin the day before).
How much biotin in your B Complex? Often it's around 400mcg.
Biotin should be left off for 3-7 days before any blood test, the longer time is for high dose biotin in a stand alone supplement or hair/nail supplement when the dose is often around 5mg-10mg. 3 days is thought to be enough for the usually small amount of biotin in a B Complex.
As you took your B Complex the day before there is a chance your results possibly aren't completely accurate.
Results just back (photo.attached)... Not sure what to make of them but TSH has gone from suppressed to over normal range in a month after dose decrease (they also changed my brand... I was on Mercury Pharma but now on another brand).
Possibly the biotin, possibly Hashi's activity.
Free T4 high normal,
FT4: 17.8 (12-22)
No it isn't. It's 58% through range which is just over half way. High normal would be up in the 90% region, ie over 21 with that range.
When TSH was 0.23 do you know what your FT4 was? This is needed to compare with this Thriva result to see how your FT4 has changed and to see if it coincides with the change in TSH. One might expect to see FT4 probably over range with a TSH of 0.23 or at least top of range, then that would explain an FT4 result of 17.8 (12-22) with your new test with the higher TSH.
but free T3 has always been low normal and hasn't changed throughout.
I'd want to see history of all results to comment on that.
Thanks for the reply! Have put all my blood results in a spreadsheet now with some notes so hopefully you will see all my results over time. FT3 has gone down if anything over time. FT4 went up to 19.9 when TSH was at its lowest. My antibodies are going up! (I know the docs aren't too interested in these). Am feeling symptomatic so feeling I am getting more hypo, but will do the NHS bloods in a month and come off the B vitamins appropriately. Think I need to find an endo that believes I have Hashimoto's 🫤. Vit B12 is tricky as they said there was an issue with the lab, but will get the Thorne B, and will also keep on maintenance for Vit D. Since start of August I have also had quite loose stools (unusual for me!) - thoughy it was the iron, then that my FT4 was high, but not sure what to think now - will probably treat separate. Was negative for Coeliac in May. Thanks so much for your advice as ever ☺️
B12 is dire. You need testing for B12 deficiency and pernicious anaemia. Stop the B Complex altogether until testing of B12 done and B12 injections or supplements started, you can then restart B Complex a week later.
Your Hashi's is likely the cause of your dire nutrient levels. Optimal levels are
Vit D - 100-150nmol
B12 - top of range for Total B12, if Active B12 is tested then over 100
Folate - at least half way through range
Ferritin - half way through range although some experts say that the optimal Ferritin level for thyroid function is 90-110ug/L
Not 'likely' Hashi's. Absolutely Hashi's! With antibodies like that.
Results just back (photo.attached)... Not sure what to make of them Free T4 high normal
No, FT4 isn't high at all. It's about mid-range, which - as you're hypo - is probably too low for you.
Wheny TSH was suppressed it was just post heatwave and I rhink that mau havhave affected...
TSH can be affected by a lot of things, but I don't think a heatwave is one of them.
Had quite a tender thyroid at that time and wonder if I had a flare temporarily which sent me hyper at that time.
If you'd had a Hashi's 'hyper' swing (flare), your FT4 and FT3 would have been very high. It's not low TSH that makes you 'hyper' - even temporarily - the TSH drops because the Frees rise, and it's high levels of T4 and T3 that make you 'hyper'.
stop the complex with Biotin and use Thorne B (should I take separate B12).
Thorne Basic B also contains biotin.
Whether or not you should take a separate B12 depends on your B12 level.
Ultimately I wonder if I might need some T3 too and thyroxine increase at some point.
Definitely think you need an increase in levo. But, you won't know how well you convert, and if you need T3, until your TSH gets down to about 1. It's too high at the moment to tell.
Thank you! Just popped all my results in my reply to Seaside Susie as hope it makes it all a bit easier to make sense out of. Yes, am so cautious about saying I definitely have Hashi's as the endo said I clearly had autoimmune problem with the thyroid, but didn't think I needed thyroxine and hence not Hashi's 😬
Well, that must rank with one of the most stupid things I've heard an endo say. And just goes to show how little he knows about thyroid! Even Hashi's has to start somewhere, and it starts slowly. You don't instantly go hypo, but you still have Hashi's.
Hashi's is an autoimmune disease, diagnosed by high levels of antibodies, so he got that right. But, he clearly doesn't know much more than that. Hashi's evolves by slowly destroying the thyroid. So, at first, with just a little bit destroyed, the TSH is rise to force the thyroid to make more thyroid hormone with the thyroid tissue that is left. As more and more is destroyed, the TSH (pituitary hormone) will rise further and further, stimulating the remaining thyroid tissue to keep levels stable, until there is so little thyroid tissue left that it wouldn't matter how high the TSH, the thyroid just cannot respond. But, the TSH will continue to rise until dumbo endos agree there is a problem and do something about it.
Your TSH is already over six - you are technically hypo at 3. So, the thyroid is still responding and keeping the FT4/3 at more or less euthyroid levels, but it is taking an abnormal amount of TSH stimulation for it to do so. That, to me, screams hypothyroidism and a need for thyroid hormone replacement. But doctors seem incapable of looking at the three different test results in conjunction with each other, and understand what that means. sigh
Anyway, my old eyes can't read the results you've just posted - too small - but the results you've given in your main post say it all: you have Hashi's/hypo, whatever your endo may say. And, if I were you, I'd give the useless so-and-so his marching orders!
Thanks Grey Goose. Some of what you said did make me chuckle! I did try to push back on it, but tricky to convince someone who had already made up their mind I think. Also he didn't have access to my private results, but I did try to show him. Thanks for your reassurance that I am not completely bonkers 😊
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Hashimotos?
Query viz meds reduction
Could this be Hashimoto's
reposting-Hashimoto's question.
Test Results Query - Hyperthyroidism?
