Hello, I haven't been on here for a while, as I have been doing slightly better, so please bear with me
I currently take 100mcg of T3 daily (50 am and 50 pm) and normally my GP does annual blood tests to check how my thyroid function is ticking over. Normally my T3 is quite high - 8.2 and 7.4 the last couple of times I have been tested. I do regularly check myself with my blood pressure, temperature etc so I always knew I wasn't over medicated - I previously saw Dr Peatfield, and so he always told me it was more how I felt than what my bloods say, but I am a little concerned with my latest results.
I have attached a scan of my latest results and as you can see now my T3 is a lot lower. Could anyone explain this? I haven't been feeling very well recently, but I haven't felt as awful as I did before getting my T3 (T4 was completely not for me, and made me very ill - I can't convert and ended up with high RT3) - so I was really surprised that my level was like this, does anyone know?
I was planning to increase slightly, but then I worry I am on a high dose already, so I just don't know what to do now.
Any help or advice would be greatly appreciated.
Thank you very much
Love Belle xx
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Bellerin
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Nope - exactly the same. Weird I know, I am hoping somebody might be able to shed some light on it, failing that I will have to request another test and see if it was just a dodgy reading
Hi Bellerin. That is a little unusual so I had a look through your history (not all of it so apologies if missed something) so hope you don't mind my post
Also please note that I'm not medically trained - just stuff I've come across
I read that you suffer with anorexia with a very limited diet (no protein etc) and it is well documented that this will cause low T4 and T3 levels. You didn't give the tsh range of your thyroid before you were put on meds but it read as if you were low T4 (bottom of range) and that initially docs would not treat as none out of range but one decided to try you on a small amount of T4 and things have progressed somewhat unsuccessfully from there. I'm assuming that your TSH was not elevated out of range due to initial reluctance to treat and if this was the case, you possibly shouldn't have been treated for hypothyroidism.
Basically, where there is long-term malnutrition and restricted calorie intake, your body will slow you down on purpose to protect your organs and lesson damage caused to keep you alive for longer. Starvation puts a lot of stress on all your organs and they will be overworked which can lead to failure. The slower your metabolism, the longer you have before failure. This results in bottom of range T4 and T3 with TSH within range and sometimes even suppressed. The TSH generally stays in range because it does not wish to have more thyroid hormone even though you are low as it does not want to speed up. It is your bodies way of protecting you. Normally, only when TSH is significantly elevated with thyroid antibodies, should treatment be considered in these circumstances. Thyroid issues will also normally reverse when malnutrition and deficiencies reverse as it's not true hypothyroidism - although long-term damage can occur in some cases.
I just thought it might be useful for me to explain just in case this was the issue and because I've noted that all of your blood tests indicate suppressed TSH regardless of thyroid level and you don't appear to have had any luck feeling better on any meds/dose so it seemed to me possibly to be this.
In regards to your test results when you were taking levo with high Rt3 - this is also normal in your circumstances so you may not have conversion issues. Your TSH indicated it did not want any more thyroid hormone. We have T4 running around which is inactive and your body can decide to turn it into T3 and run a normal metabolism or it can decide to turn it into Rt3 effectively deactivating it. As explained above, a body suffering with anorexia does not want T3 running about and wants as lower levels of thyroid hormone as possible (whilst keeping you minimally functional) so it will convert as much T4 as possible into Rt3 in order to suppress metabolism and slow you down. Forcing T3 into your body if this is the problem is quite dangerous and going against your bodies natural defences. Running your body faster will also mean a faster depletion of what nutrients you do have.
In regards to your results above, I can't help much but did you exercise before the test? - this will deplete your T3 quite quickly especially with adrenal issues on top. Did you take the test at a different time? Obviously normally a body will prevent high T3 by not converting it into T3 in the first place so I'm completely unsure what would happen in this situation as it would be rare but maybe your body found another way to deactivate the T3???
You have unrecordable levels of TSH and T4 and I don't think your body even wants the T3 (for which you're taking almost double the normal dose required for an adult).
I also noted your issues with your adrenals - this is also normal with malnutrition and restricted calories. Your body and all the organs need so many things at good levels to function normally, when it doesn't have enough to keep you alert and functional, your adrenals have to step in and take the slack just to keep you ticking and to better use what your body does still have available in regards to resources. This will stress them out causing high levels of cortisol but it can only do this for so long and is originally only intended as a temporary measure in times of drought and what not. Taking the T3 can only serve to stress them out more. When they've had enough, they will eventually fail. You will also have issues with blood sugar levels too as it's linked to adrenals and each can impact the other.
I also saw you were diagnosed with coeliacs and dairy allergy not so long ago. I did read some research recently regarding some issues with anorexia and why treatment normally fails that I thought might be of interest to you. You were likely coeliacs many years before your were diagnosed and could have been an issue way back. The research had looked into something about malnutrition induced starvation/anorexia (apologies, I can't remember the term used) and how various physical changes to the body and brain that happen with long term malnutrition actually can cause changes to the normal chemical signals for eating and hunger and even how changes to the white and grey brain matter can even physically influence how the person sees themselves and food. They basically argued that there had to be a complete reform in how anorexia is treated as cognitive therapy or dealing with the more psychological reasons behind it is futile until these physical changes had been reversed. Their research had demonstrated that this reversal only happens when all nutrition had been restored to optimal levels (rather than just not needing to be hospitalised as is often the case now) and that for women, the proof of hitting this point was regular periods for a certain amount of months (I can't quite remember if this was 3 or 6 months). Apparently if they could reach this point, there was a high chance of full recovery as these physical issues were fixed.
Sorry I'm a little naff on the details - it was quite a while ago but I can try and find it for you if you were interested. I can get you some links for all the issues I've mentioned above too if you would like to read up about them?
I mention this as I had similar problems so can relate to you - my appetite as a child was so little as food always made me feel so crappy and caused so much pain and discomfort so I was never hungry. I was always forced to eat though and I also kept forcing myself later and luckily many days had fish and potatoes (uncle was a deepsea fisherman) which I was happy to eat but can see how easily I could have just stopped eating much at all. This would also have left you very malnourished as coeliacs prevents you from absorbing all sorts of nutrients - even though I ate, I was always deficient in everything anyway but I suppose I was still getting the basic components. My appetite came back fully once I had stopped eating gluten. It just made me wonder if this could even be partly involved in issues you had later? I did quickly note some recent research regarding links with coeliacs and anorexia.
Anyway, sorry for the essay - just thought it might help if I explained in detail as you seemed to want to understand everything. Also, as mentioned, I apologise in advance if I'm mistaken on anything - you had a lot of posts and did not read them all.
I might be over-stepping the mark but I was just concerned and thought these things were worth mentioning just in case.
Thank you for your detailed answer - you are very kind
I haven't posted on here in a very long while, as I am doing very well on my T3 (mine is a weak brand so hopefully that is why I am okay on it) I also have a private endo, that checks me over, and he knows my anorexia nervosa history, so I think he would flag anything up he was concerned about. About a year ago (early 2019) there was a problem with my T3 brand, so I had to go to a very low dose and eek out what I had spare, and I totally went back to where I was before!!! I felt so, so awful, it was untrue! I also put about 2.5 stone of weight on in a few months! Along with all my other underactive symptoms. I felt so bad. So I know my T3 is helping me, as it was the only thing I changed. I also have a much, much better diet now than I did t my worse anorexia nervosa points. I get plenty of plant protein and I have 3 good meals a day now, and have had for about 2 years - it has definitely made me feel a lot better!
I did have a really bad infections at the back end of last year, which took quite a lot weeks to get over, so I am wondering if that sent my results a bit weird! Or maybe I am just a bit of a weird person lol!
I think that my above result it a dodgy reading, but I will email my private endo and see if he wants me to have another test just to see
I'm glad you are eating and feeling better more recently
It was just to make you aware but also please bear in mind that any changes to thyroid meds (whether needed initially or not) should be done very slowly. Any drop like that all of a sudden will make anyone ill as it takes a good three months for a metabolism and body to adjust to new conditions.
T3 levels do become low when you are sick but there's still the question of how your body would have been able to lower it considering it doesn't have the normal ability to do so and that is confusing?
I do think you would hugely benefit from proper nutritional testing though as I don't think the tests i saw in your previous posts were adequate to provide a complete picture as your situation is a little more complicated for the following reasons:
Vit B12 - this one is the most concerning and you questioned how it was possible for it to be over range considering you haven't had meat/animal products in your diet for quite some time as only eat vegetables. There is no possible way of getting B12 naturally in this situation so likely requires additional investigation as the result is questionable. B12 can be stored in large quantities for a long time and it can take 5-20 years for a vegan to deplete their B12 stores which is held in the liver depending on how much was stored in the first place and how much is being used etc so you won't necessarily become immediately deficient in B12 if you only eat vegetables. However, you indicated that your diet has been this way for some time though so I would question the result. Over range B12 results can be caused by liver cell damage/death as it leaks the stored (and not necessarily activated B12) into your blood as the cells can no longer hold it. You have liver abnormalities and issues so this might explain it. It is also worth noting that adequate kidney function is required to excrete B12 from your body.
The NHS standard B12 test measures all B12 including active and inactive so it's really not a sufficient test for you as all the B12 in your system could well be completely inactive and of no use to you so I would highly recommend getting an Active B12 test instead.
Folate - well you do eat mainly vegetables so might explain an over range result but this can also be caused by bacterial issues as well but most importantly high levels of folate can mask B12 deficiency.
Iron - Iron deficiency can mask B12 deficiency in your blood count. Your Ferritin (which is iron that has been stored and not in use) has come back with an okay result but Ferritin is not reliable in cases where there is illness/stress and/or suspected B12 or Folate deficiency as will give a false high reading. You would need a full iron panel, blood count and Ferritin together for a better picture of iron levels but it should also be noted that B12 deficiency has been found to also be able to hide Iron deficiency too including skewing iron panel results.
Vit D - this is largely not gotten from your diet anyway and your body would want this high in order to be able to absorb as much calcium as possible but a bone profile with calcium test might be worth getting to see if anything going on there.
I think you it would be useful to have the following tested as it could help you even further:
Full Blood Count
Iron Panel including Ferritin
Active B12
Folate
Vit D with Bone profile incl.calcium
These should all be done together from the same blood draw and if a B12 problem is discovered, iron should be retested 2-3 months after starting adequate treatment to see if an iron problem becomes apparent.
You can get all these included with the Well woman ultra vit blood test for £119 on Medichecks for example and also included in this test are Liver/Kidney function, magnesium, cholesterol, thyroid function etc etc.
Yes I did only lower my T3 dose last year, by a quarter 25 mcg tablets every 2 weeks like the Grey Goose told me ages ago, but I was getting pretty desparate, and that stress along with my sky high anxiety (I LOVE to overthink everything!!!!) was getting me down, but once I had some, I could slowly increase again until I felt 'human' again
I actually have an extremely rare liver condition - actually in the double figures for people in the uk - which is a rare complication from my undiagnosed coeliac disease! I know! I have been receiving liver treatment for around 18 months - my blood test results for my consultant did confirm his suspicions, that my liver condition is giving me a false high B12 reading! Great - actually he found that last year, so I have been taking a high dose supplement, and I think that is helping in my general better health (he also told me what supplement to take, as my liver struggles to process 'normal' animal protein) and yes - you are correct, I also was getting a false 'in range' vitamin D reading, so again for about a year, I have been on a supplement for that He has also said that because my liver condition is so rare, he isn't 100% sure if that may be affecting my thyroid, as they are both linked - but at the moment, fingers crossed (apart from this one odd result!) has been on an even keel for around a year. I have a bone scan annually because of my coeliac disease, and that will be later on in the year, so I might have that blood test you suggested just to check on my calcium levels, it is so difficult when you have a dairy allergy, as everything seems to have to come from supplements. I have had medichecks blood tests before, and I really like them, luckily my local hospital does them so it isn't too much of a faff, but I will have a look at that test you suggested, just so I can see how my B12 is progressing. My liver consultant does test every 2-3 months, but I like to have my own done sometimes, just so I can keep some with my records
Hi Bellerin, I hope you are ok.. I Have just read your post and I relate to many of this.
I was diagnosed with Hypo 8 years ago and have always suffered with so many symptoms from head to toe.. My Endocrinologist is saying I am VERY complex patient as she cannot get me symptom free and may not be tolerating the medication.. for years I was only taking Levo Which has caused me to have hair loss, terrible itching, loss of eyebrows and daily violent headaches.. So after all these years she said ok lets try just T3, which did help for a while, but then what happened my body didnt have any T4, which again made me very ill abs still had all these dreadful symptomS , but this time i DEVELOPED insomnia and constant urinating and always feeling nausea.. So, I am taking T4/T3.. Levo 100 mcg daily and Liothyronine T3 10 mcg twice a day.. and still feeling like crap.. I also have terrible hot and cold episodes .. The next real problem for me is I have an eating problem and hate food, ANOREXIA!!! I cannot stomach the smell and the sight of food and I too have taken many laxatives.. So MY intake of food is practically ZERO, I do have a milk shake every day, and a few crackers, but that really is all I have. .I fo to the gym most days for 4 hours and have become obsessed with the training, because I an so scared of the weight issue.. If I dont go training i am in a really bad place in my head.. I really don't know what to do about any of this awful STATE I am in, and just thought I would ask for any advice PLEASE... I have also been to see a Professor of ENDO , but again absolutely USELESS , he could not answer many of my questions and was basically told you have to live with this disease , so very unprofessional!!
I am very sorry you are suffering so sodding much - this mental illness is really awful and I feel for you very, very much. Firstly, let me tell you a bit about me I am now 35 and I have suffered with my anorexia nervosa (very important that word) for most of my life. I have been admitted to hospital 3 times and an eating disorder clinic twice. What I have found with having this mental illness and now a thyroid problem is that both seem to generally hate each other!! I was going alright until about 4/5 years, keeping my weight stable, eating alright for me (!) and my severe anxiety and depression were getting on a more even keel, and then bam - out of nowhere I started suddenly gaining weight, and I mean a lot of weight. I ended up in a really bad place, suffering very badly, as you can relate to, gaining weight isn't fun for anyone, but when you have anorexia nervosa, it is like a constant living hell. So I went to see every doctor going, I spent my life (what there was of it) at the GP's and nobody could find what was causing it, and in the meantime I went back to very bad habits with eating very little and becoming more ill and more ill, and still gaining weight. Finally after a lot of tests, they (doctors) found coeliac disease, a severe dairy allergy and a problem with my thyroid. It was underactive, but wasn't very severe to cause such weight problems, but I had a whole load of other symptoms as well - basically I imagined that if I was repeatedly hit by a bus every, that this is what it would feel like. I too was very itchy, I scratched until I bled, I struggled to hold my own head up I was so tired, I would randomly fall asleep mid-sentence, and my eyebrows disappeared, my skin, hair, eyes, mouth, throat all dry and sore and much more. I had the works. Eventually I went to see a private endo and I came onto here (no idea how I found it, but it is a god-send) My private endo started me on a very low dose of T4. He diagnosed I had damaged my thyroid badly due to an addiction to slimming tablets and now it was struggling to work. T4 worked briefly, a few months, but not an noticeable difference, so we changed doses, talked, did various tests without much luck. After a couple of years I decided to try T3 as I had nothing left to lose, and I found it worked for me, but it took around 2 years before I started to see any real, obvious improvement, and it has been hell going through it, but I can see, tiny green shoots. I know my body, and I know when it is struggling, and I know that without T3, it would be. I take a brand that is actually known as being quite weak, so even though my dose my look high, it works for me. I think my result above is a false/weird reading and I will email my endo about it. Every single person is different, even with anorexia nervosa. I have met (and sadly lost) lots of people in clinics or in treatment, and we have all been completely different, so I can't say what works for you - but there is a eating disorders group on here, that are very helpful. Are you under a local authority? I have had my wonderful nurse therapist for over 10 years, and there is no way I would be here without him. He is an NHS one that when I was first diagnosed with my ED, I was him a few times a week but now its once a fortnight - he really helps me. If you aren't under one, I strongly advise looking for your local one, mine also helped me by talking to my endo for me, when I was first diagnosed, and has helped with appointment making, getting blood tests sorted etc.
All I would say is don't be fobbed off, if you still feel very ill and you aren't being listened to, pest your GP, or go to another one, keep requesting a referral to an endo, or a different endo. Most doctors I have found are quite happy to put everything wrong with me down to my anorexia nervosa, but sometimes they are definitely wrong! I always felt like I was the only person with anorexia with another health problem! Doctors would lecture me for hours about my anorexia nervosa and then say they had no idea about what I have come to see them about - everyone is an expert on ED's sometimes, but when you have it, you get it more than anyone just reading about it.
I have found that, though, excess exercise and really restricted calories are hamper the thyroid more, so if you could maybe try to see somebody about slightly changing some of your behaviours to help? It is very, very difficult, I know, trust me. But I am now eating a lot better, and that side seems to be under control, it does seem to help my thyroid turn a corner (please try and get some protein in I have a vegan protein shake, and that has really helped me )
Take care - and I am here if you need me - and I am very sorry if my post isn't very helpful - and it is very long and boring, just reading it back to myself lol!
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Ikaros T3 and test results 
Lab Results - High T3!
Recent results - T3 / T4
Results with T3 and 50mg T4
