I'd be very grateful if anyone can help me understand why my results look worse after an increase in levo and also if anyone has any thoughts about my next dose increase.
Brief context: I've been on the same dose of levo for c4 years, and each time I've tried to increase in the past, I've been unable to function. After receiving particularly poor test results in May, I've been increasing in six-week increments, with a very small increase each time, which I've managed to tolerate.
I'm now puzzled by the drop in my latest results following a dose increase. My previous set of results (19/7/21) were:
TSH: 1.96 (0.27-4.2)
FT4: 19.4 (12-22)
FT3: 4.6 (3.1-6.8)
I increased my dose at this point from 75mcg per day to 5x75 and 2x100 levo.
My latest results (21/9/21) are:
0.95 (0.27-4.2)
FT4: 18.1 (12-22)
FT3: 3.6 (3.1-6.8).
Both tests were taken at the same time, 0800hrs, no levo the night before, and nothing to eat or drink.
I feel pretty lousy, but (a) I've had chronic fatigue for the past 14 years or so - several years before my thyroiditis was diagnosed - and (b) I've never had the typical thyroid symptoms of weight gain and cold body temperature, so I always struggle to know which symptoms are because of thyroid. I also managed to catch Covid back in February 2020 and have never felt well since. All of that said, I'm sure from my FT3 result that I need to increase levo further, but after this fall in FT3 and FT4, I'm a bit stuck what to do.
In case it's helpful, my tests from 4/5/21, when I was on 4x75 and 3x50 levo:
TSH: 3.29 (0.27-4.2)
FT4: 17.0 (12-22)
FT3: 4.3 (3.1-6.8)
Vitamin D: 102 (75-175)
Ferritin: 91 (13-150)
Folate: 25.7 (8.83-60.8)
Active B12: >150 (37.5-188).
Thanks so much for any help anyone can give me.
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Thalia56
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Thanks so much for responding. I tested negative for coeliac in 2015. I went strictly gluten free for two years after reading how it helps so many people, but stopped when it made no difference to how I felt.
Hmmmn, I haven't thought about cortisol for ages. I had some cortisol saliva tests in 2016-17: I started off high (though again, I didn't have what are quoted as the classic symptoms), but by Oct 2017, I was only a smidgeon over range. My DHEA was at the bottom end of the range; the GP I was seeing privately prescribed DHEA for a couple of months at my request - I haven't done any cortisol or DHEA tests since.
I had a fruitless encounter with an NHS endo early on in my diagnosis. According to him, I don't have a thyroid problem, T3 is unproven treatment and antibodies are irrelevant. I felt I reached an NHS brick wall at that point, but perhaps I should consider going privately if I can scrape together the funds.
I did have the overnight dexamethasone test when I saw that endocrinologist in 2016; I can't currently find the result, but he evidently saw no issue with it as he signed me off at that point.
I weigh 58kg.
Re my conversion: I worked out the ratios from my three tests this year after reading your comment. Assuming my wonky maths hasn't let me down, it's gone from 4.0 to 4.2 to (now) 5.0. I don't know what, if anything, that means.
Assuming you always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
0.95 (0.27-4.2)
FT4: 18.1 (12-22)
FT3: 3.6 (3.1-6.8).
Ft4 is 61% through range
Ft3 is only 13% through range
Helpful calculator for working out percentage through range
Thank you again. Reading your replies has been so helpful, not least because it's made me realise I was probably focusing on the wrong thing (drop in hormones) to the detriment of a bigger issue (conversion).
To answer your questions:
I had some vitamin testing done in May 2021.
Vitamin D: 102 (75-175)
Ferritin: 91 (13-150)
Folate: 25.7 (8.83-60.8)
Active B12: >150 (37.5-188).
I take several supplements; my plan is to take them daily, but I actually end up taking them more like once every two or three days because of fatigue.
They are:
B12 (not currently having my Pernicious Anaemia injections due to pandemic); B Complex; Zinc; Vitamin D; Vitamin K2; CoQ10; Magnesium; Vitamin C; Fish oil; selenium; turmeric. Taking folate as a temporary measure following my folate test results, and I take ashwagandha at times.
Wow - that FT3 calculation (calculator bookmarked for future use) really brings home how poor mine is. I now have the list from TUK and am going to make enquiries. The use of Zoom has opened things up for me enormously - I live between Swindon and Oxford, but can't travel far due to fatigue limiting driving / time on public transport and not knowing anybody who is in a position to drive me.
Thank you again for your generosity with your time and knowledge. I felt so lost when I got those results, having thought I knew what I was doing. Now I have a way forward.
Thank you! Re the Pernicious Anaemia diagnosis: my GP at the time diagnosed me with B12 Deficiency, but according to the British Society for Haemotology's guidelines, my B12 level at the time of diagnosis means I technically have antibody-negative PA. I've never had the energy to fight that battle as it wouldn't have changed my treatment with this particular GP surgery - but perhaps I should have, given what you say.
Hi Lalatoot, Thanks for this. I followed SeasideSusie's excellent advice at the time in other areas, but, because my conversion improved from that point, didn't follow up about the T3. To be honest, and ridiculous as it sounds, I'm both convinced T3 supplementation is a good thing and worried about trying it (finances also an issue). And when I got these latest results, I was more confused by the drop in FT3 and 4 than looking at conversion till SlowDragon drew my attention to it.
Which is a long way of saying thank you, I think seeing somebody about adding T3 is my way forward. I now have the TUK list and will make some enquiries.
The accepted conversion ratio when of T4 only is said to be 1 / 3.50 - 4.50 T3/T4 with most people feeling at their best when they come in at around 4 or under ;
To find your conversion ratio you simply divide your T3 onto your T4 and I'm getting yours at :- May @ 3.95 - July @ 4.21 and September @ 5.02 :
Please recheck these as my numbers are different to yours
As you can see this does show a pattern of your conversion becoming more compromised and moving out from centre,
So, conversion of the T4 into T3 the active hormone is becoming more challenging for your body.
Thyroid hormone conversion can be compromised by low vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D. You may need to supplement these yourself, as you may well be in the NHS ranges but not at optimal levels for someone with a thyroid AI disease and taking thyroid hormone replacement.
Conversion can also be compromised by any physiological stress - emotional or physical, inflammation, depression, dieting or ageing:
Since you have Hashimoto's AI thyroid disease the ultimate goal of this disease is to progressively attack and damage your thyroid until your thyroid becomes fully disabled and your requiring full spectrum thyroid hormone replacement.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1 .T2 and calcitonin plus a measure of T3 said to be at about 10 mcg plus a measure of T4 said to be at about 100 mcg.
Hello Pennyannie. Thank you so much for your help.
re the ratio differences: I worked them out on excel and looking at the spreadsheet can see I had it set to one decimal place, so when I changed it to two, the results were the same as yours. It was evidently misleading due to rounding, and thing are worse than I'd thought!
Very interesting about the physiological stress. I've had long covid for about eighteen months now (though for the last two or three, most symptoms have improved), so that's going to have had an impact. Ageing: I'm 55, but have been feeling very much older over this last year or so - could be Covid, could be psychological due to lockdown and Covid anxiety, or could very well be my low T3. Or all of the above.
I do keep an eye on vitamin and mineral levels and supplement accordingly - as of May, I believe my ferritin, Vit D, B12 were all in the optimal range for AI thyroid disease, though my folate was a little low (I've added more folate supplements since). I haven't had zinc or selenium tested for several years, so that may be a good idea if I can stretch financially to it.
You said: "A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1 .T2 and calcitonin plus a measure of T3 said to be at about 10 mcg plus a measure of T4 said to be at about 100 mcg."
I'd never heard those measurements before, and they are SO helpful.
Thank you once more - this is all extremely helpful.
T3 - synthetic Liothyronine - is said to be about 4 times more powerful than T4 and the active hormone that the body runs on, and most people need to try and find/convert / utilise around 50 T3 daily, just to function.
Some people can get by on T4 only :
Some people find T4 seems to stops working as well as it once did and need the addition of just a little T3 with their T4 making a T3/T4 combo ;
Some people can't tolerate T4 and are on T3 only :
Some people prefer to take full spectrum thyroid hormone , Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland, namely trace elements of T1, T2, and calcitonin plus a measure of T3 and a measure of T4 in each tablet, referred to as grains.
I am with RAI thyroid ablation for Graves Disease so have no thyroid function and when T4 stopped working for me I tried a small addition of T3 with my T4 and that worked- my brain became engaged and I felt " back in the room " though a little turbo charged.
I had also purchased some NDT to trial and found this softer on my body and am now 3 + years into this treatment option and much improved, though still need to maintain optimal health and now take a blood test once a year more to see where my vitamins and minerals sit than anything else.
NDT was the successful treatment of choice for around 100 years and is made from pig thyroid dried and ground down into tablets / grains. NDT is still prescribed and meant to be available on a " named patient only " prescription - though I failed in my request and my doctor suggested anti depressants as the answer, it was not .
Big Pharma launched synthetic thyroid hormones in the middle of the last century when they also established the blood tests, guidelines and ranges and the dogma we all seem to find too easily offered in current day surgeries.
I'm so glad you eventually found the right treatment - though anti-depressants?? This is, once more, very helpful context to know. I can understand why blood tests were initially welcomed as providing an objective measurement - but as the management gurus used to say, back when they were a thing, just because something can be easily measured doesn't mean it's the right thing to measure. Though how a GP is supposed to do everything that's needed in a 10 minute appointment still confounds me.
I think the fact that there are now over 120K people on here all and looking for answers as to their thyroid health, simply highlights the problems faced by many in primary care where you can't even have the appropriate blood tests run, let alone discuss other options of thyroid hormone replacement.
I don't mind at all, though should caution that I've probably forgotten some things as time has passed.
After the acute phase was over (I was really lucky and had it relatively mildly - just one night of soaring temperature and projectile vomiting), my other symptoms continued unabated for months: breathlessness, intermittent rashes, covid toe, headaches, palpitations, intermittent and wandering joint pain (much more painful than my usual thyroid / general joint pain), pink eyes, sweats and problems regulating temperature.
Covid toe disappeared after about three months of coming and going. Pink eyes and rashes disappeared after 7 months; sweats after about 14 months (which put paid to my wondering if they were menopausal). My breathlessness and palpitations improved remarkably after about a year, though I still have days where I notice myself breathing, if that makes sense; it seems harder then than it used to, though my pulse oximeter tells me my oxygen saturation is fine.
Some of these, of course, can be attributed to other causes than covid (I caught it at the time when no tests were available, but I have no doubt it was covid due to the breathlessness and collection of bizarre symptoms, and the fact I had just spent a couple of hours indoors with someone returned from Spain, where it was much more widespread than anyone knew at the time). The fact my sweats have gone makes me fairly certain they were Covid-related; pink eye and rashes are so well-known as symptoms that I have no doubt there - and I've never had them before. Ditto breathlessness.
So to answer your actual question (finally!!!!): a year and a half on, I'm left with some breathlessness and some joint pain and ongoing headaches, plus enormous fatigue / brain fog (though given my low T3 and my history of chronic fatigue, Covid may not be the full story behind that).
I don't know how helpful that was, but hope you can pick through it for something relevant.
Thanks for the response! Weird how Covid symptoms and hypo symptoms overlap…
I’ve been reading about “long haulers”, a lot of their symptoms almost sound thyroid related. In either direction. One person claims their hands tremble and they have tachycardia and insomnia. Another patient claimed she’s tired all the time, and can’t regulate body temp.
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