Hi all, it's only me again sorry to be so needy !!!
I'm not doing good, I'm on 25mcg levo and self medicating with t3 25 mcg
I will say that since I've been taking t3 it's help slightly with not falling asleep all day.. But.. I'm gaining weight rapidly I feel bloated puffy and uncomfortable!! I could cry!!
After pushing to get my bloods rechecked I have an appointment Monday morning for simple tft!
I think I need a fresh start here!!!
I'm anemic so from what I've been told this will affect things?
I'm stopping t3 now, how long until it's out of my system for bloods?
I think I need everything tested... Cortisol etc? I've been given snippets of info on posts and messages but I've not done anything, so what I'm asking is will my medication not help if my other levels are not good? Is there a test that combines everything I need tested? Why am I gaining on t3?
Thanks x
Last bloods were
Tsh 2.25 (0.27-4.20)
T4 10.5 (11-25)
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Natj123
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Because your T3 is too low. It's not just about taking the tablet, it's getting your levels up to optimal. And that takes time. You're still on a very low dose.
But, you're right, your body won't be able to use the hormone you're giving it if your nutrients aren't optimal. But there is no one test that tests everything. Everything has to be tested element by element.
So, you want to ask for :
TSH (which is too high at the moment for someone taking T3)
FT4
FT3
vit D
vit B12
Folate
iron
ferritin
Don't know how much of that your doctor will agree to, but you can always try.
Cortisol is another matter. Doctors know nothing about it. The most they will offer you is an 8 o'clock blood test. What your really need is a 24 hours saliva cortisol test, which will tell you how you are doing throughout the day, as levels vary at different times. But I Don't think there's much chance of you getting one of those on the NHS. It would have to be private.
OK, so you were only on 25 mcg Levo? Not surprised you're putting on weight. So, according to Clutter, you increased too quickly, which wouldn't help. But I doubt your T3 is making you put on weight. So, I doubt it will come down when you stop the T3.
Always, always ask for a print-out of your results. It's your legal right to have them. 'OK' is not a diagnosis, it's an opinion. And there's no guarantee that her opinion is of any value.
Well, it might be better to get your iron levels up first, or it might pool in the blood - be unable to get into the cells. But there's no reason why T3 - in reasonable doses - would harm you Under normal circumstances. But you could try taking a much smaller dose - quarter of a pill, or something. Because that 25 mcg Levo isn't going to do very much for you.
No, you really should get the vit d tested before taking any. You need to know whether or not you need to supplement - because too much isn't good. And you need to know how much to take.
Also, Don't start taking more than one thing at a time. Because if anything doesn't agree with you, you won't know what it is.
No. It. Isn't. You have gained weight because you are hypo. Because your T3 is too low. Nothing to do with what you eat, and cutting the calories is just going to make you put on more weight. Take my word for it. Been there, done that, and have a selection of very large teeshirts to prove it!
I was severely bullied throughout my teens for being fat!!! In my mid 20,s I lost weight by walking miles with my dog, managed to keep the weight off but to this day I'm still emotionally scarred over it so to me, putting on weight is a big big issue, if you had read my other posts then no, it's not just about me putting on weight, I have 2 kids and I struggle every minute of every day , I also feel like I'm ready to lose my shit in a heartbeat so please don't judge me just by reading a few comments
I'm not judging you at all - how could I, I know very little about you. Incidentally, I am massively overweight (in excess of 20 stones). I have lost my business, my professional career. Lost most of everything I ever owned due to this disease. Lost friends, or so called friends. Got into debt. I could go on. I will go on...threatened with bankrupty a number of times. Threatened with house reposession several times. But that was not caused by my weight it was due to how dreadfully unhealthy and ill I have been over the past 10 years.
I too would like to lose weight, but I would take feeling well all the time (and being fat) anyday over feeling like crap and deathlike, unable to work and go outdoors (and being slim). Both slim and normal would be nice.
So, yeah, I too am a tad p'd off and low at times.
Your life sounds like mine, I too lost my job, couldn't care for my 2 year old daughter, couldn't get out of bed due to the debilitating vertigo it's caused also, myself and hubby almost split up due to it, I was declared bankrupt after losing my job
Couldn't afford mortgage payments, ended up with a box full of tablets in front of me because I'm all honesty not even my daughter was enough for me to want to continue living, almost lost everything,what kind of mother was I that I couldn't look after my own daughter , had to rely on my mother, I've had the worse y years of my relatively short 35 years on this earth do no, my weight is not the least of my worries but gaining weight unnecessarily, which I could avoid, is one less thing for me to feel suicidal over!
All of what you say I can relate to. I have 2 kids and feel like I've missed out on a lot of things with them. My problems started when I was in my early-mid 30s although looking back I may have had symptoms since my late 20s. I always used to thrive under stress and pressure, I used to love the adrenaline rush of presenting at conferences in front of hundreds of people. Perhaps I had a big ego. Not now. I am miles better now by the way but I doubt whether I could ever go back to do what I used to, but you never know! My god that was a positive thought!!
The thing to remember, and I know you're finding things tough at the moment, is take your time with dosage increases and don't switch from one thing to another quickly. We all want an overnight fix but, from my experiences, it just doesn't happen overnight and you need to be patient, eat well, take your vits/minerals, give your body a chance to heal, and really just try to relax as much as you can. As hard as it is now it will get better with patience. Apologies if I rattled your cage.
Yes the written word is different from the spoken word - I've rubbed people up the wrong way in emails, facebook, etc. but hardly ever in person!! Suppose I'm nice really ha ha
I desperately need to lose weight but nothing's happening. I tend to crave spicy food when feeling hypo but usually regret it after!!
I'm sure we'll get there in the end. I have more positive thoughts now, which must be a good sign. And I haven't thought about driving my car off a cliff recently. All progress. Keep smiling
I started taking 50mcg levo 2.5 years ago (TSH around 24). Was physically sick within 24 hours for some reason. Felt like death within days, tired, in bed most days, crying, unable to do anything really. Gradually over the next few months felt a bit better but still fairly ill. couldn't walk more than round the block at a push.
Had loads more bloods (TSH) over the next 9 months and always came back normal (3.24 - 4.9), which I now know (thanks to the web and this site) is too high for someone taking levo. Then TSH test result went back up to 5.1 so upped to 75mcg levo. Heart went from thudding, slow beats to more normal within 24 hours. Still felt dizzy and tired with fatigue all the time plus other usual symptoms. Stayed on this dose for 9 months feeling terrible. Was offered weight loss tablets, exercise classes. I said I couldn't move properly to exercise having put on another 2-3 stone doing nothing else differently. TSH this time was 3.5.
Decided to go private for blood tests. TSH this time 5.9 with high TPOab, low FT4 & FT3 and severe vit D deficiency, and low zinc. Went back to GP and upped to 100mcg levo plus vit D3 high dose. Retest in 6 weeks. Retest TSH now 4.9 no further action required according to locum (over the phone)!!! Although GP said they would try getting TSH down to under 1 no prescription given!! Did not have any fight, energy, lost interest in going to Drs. Had bought Armour thyroid a couple of months prior so thought I would add this to levo.
Built up gradually on Armour feeling better initially then worse but glad I stuck with it as feel much better now. Just need to get my dose/timings right and I think I may have cracked it. Fingers crossed!!! Still may switch completely to Armour but feeling not too bad at times so a bit scared of rocking the boat!!
So I currently take:
100mcg levo (from GP) taken around 7am.
plus 1/2 grain Armour at 11.30am
plus 3/4 grain Armour at 11.30pm
Total: 100mcg levo + 1.25 grains Armour
which equates bioactively to 181.25mcg levo based on T3 being 3x more potent than T4. Armour reckons on bottle that T3 is 4x more potent but I've based my calcs on what most people on here say and other sites (i.e.T3 is 3x the equiv. T4).
Since being on meds this is the first time that I still feel I'm improving each week rather than feeling a little better for 4-7 days and then going downhill.
Sorry for long post, but I thought I would elaborate slightly on dose changes
Edit: I've also been gluten free for coming up to 12 months (Oct 12th I think).
Does gluten free help? I'm eating bread now when I've not eaten it for years that's why I'm gaining I think!!!
My worry is that if they upped my levo to 50mcg that it would make me sick too because I've the weakest stomach ever!!! Paracetamol makes me sick. So I know that it's going to make me unwel, I won't take it then!!!
The private bloods are just so expensive though right?
I'm not sure whether the gluten free helps. I think when coupled with better thyroid hormone levels I (touch wood) don't seem as though my thyroid is as inflamed and the hyper swings are much less, if at all dare I say. This might be because my gland is largely destroyed now, I don't know. My antibody count has more than halved since going gluten free and upping my thyroid meds, but it could just be because the gland is getting less functional - again, I don't know!!
Do you have auto-immune Hashimoto's?
I tend to get tested privately every 3 months. The fingerprick test is around £89 and tests TSH, TT4, FT4, FT3, antibodies and some vits/minerals and includes private GP comments if results are out of range. If you go to the main thyroid uk website you can find details there about private testing. I've also done a test for £325 but tend to now use the fingerprick tests, as sometimes in past I've missed blood tests due to feeling too ill - how daft is that!!!!?? Whereas, the fingerprick test I do at home so I can now get a more representative picture of my levels for everyday life i.e. not sitting in house doing nothing for 2 days prior to going to docs just so I don't feel like shit when travelling there!!
If I feel I need a small increase I just increase and then wait until stable before testing as it could get quite expensive if you were to test all the time. I would test more frequently if I could.
It's crap isn't it that we're forced to try and fix ourselves!!! Not good!! Especially when most of us would rather spend that money on something else!!!
I try to see it as an investment into my future health and wellbeing ha ha . Once I (hopefully) am consistently well I will test and use the results as my benchmark for the future. Well that's the plan anyway.
I didn't read any of the referenced material but the article goes with what a lot of people complain about, that is, weight gain whilst taking levo only. Particularly when TSH is higher in the range. My TSH has only just gone below 1 for the first time so I might just start to lose some weight.
That was the intention. At least I now know I'm not talking to myself here.
If you are ravenous on 1200 calories, it just goes to show it's not enough. Losing weight isn't always a healthy sign, you know.
You need calories for every single thing you do. Getting up in the morning, washing, cooking breakfast, breathing, digesting... AND converting T4 to T3.
Admittedly, you Don't have enough T4 to convert. But you still need those calories. You are doing a very difficult job, trying to look after your daughter and your house and all the rest, whilst handicapped by low hormones. DON'T make it worse by starving yourself. Be kind to your body - it's doing its best - Don't punish it.
As you are hypo, you probably have low stomach acid, which is more than likely causing nutritional deficiencies. If you Don't even take in enough food, those deficiencies are going to get worse! EAT!
Yes, I do understand, despite the harsh words. You were fat as a child, and tormented for it. Same here! You were therefore - either deliberately or psycologically - taught that eating was a sin. Me too! Everywhere around me, everything was saying Don't Eat!!! You're fat, you Don't deserve to eat. You're a woman, you must look after your figure, Don't Eat! I married a man that reinforced that message. Every time I took a bite of anything, I was aware of his eyes on me, judging me. Disgust, was the subliminal message he was giving off - she's so fat yet she keeps on eating. So, what do you do? You stop eating. And you get fatter!!! But no-one will believe you!
Well, you know what? They've all got it wrong. The doctors, the media, the critics, they understand nothing about the way the human body works. So, all these poor little girls become anorexic... And you know what? They mostly end up with an under-active thyroid. And then they feel failures, because they were only doing what everybody wanted them to do, weren't they? : to stop eating! There's this Under-current idea that women shouldn't eat, shouldn't be seen eating, it's not sexy... Have you felt it? But they're all wrong!
We have to eat for so many reasons - good, wholesome food. But we've just grown so far away from nature as a society - we think we know better than Mother Nature! Well, we're wrong. We need to eat. All of us. Fat or thin or inbetween, If we Don't eat we'll fall ill and die. If we eat the wrong things we'll fall ill and die. We need to get back to nature and listen to our bodies - and our body's way of telling us to eat is HUNGER.
So, if you're hungry eat something, something good and nourishing. And forget about your weight for the moment. When you get your hormones straightened, everything will sort itself out. OK?
Being hungry can be also a sign of better digestion/improving health.
Your body is telling you something. But eat smart. Don't just eat everything. Give your body proper food.
Unfortunately, healing can cause weight gaining. It is very different from gaining weight because of illness. When healing your body does what it is programmed to do. Losing weight comes in the picture when you have healed enough. That simple.
Do not count calories. It might lead you wrong. You need at least 1200 to keep up.
Stay strong and let yourself heal
In order to be healthy one does not have to lose weight. . In order to lose weight one has to be healthy.
But yes it makes sense, basically yes, if I starve myself then I can lose 3-4lb in a week, but it's not sustainable so I end up putting it back on and more 😭😭😭 I just hope it doesn't take that long, I need to eat balanced good meals but I'd rather skip a meal and eat the junk I'm craving so bad!!!
Unfortunately for all of us the doctors think there is only one blood test which is important and that's the TSH. We, the sufferers, of course know differently.
It's the Free T3 which is the most important not just the T3. I must admit our head goes round with all this information we cannot always take it in. It's a gradual learning about the thyroid gland and how you respond to different medications 25mcg was far, far too low it would hardly be of benefit.
There's nothing to be scared of in taking T3 as it is the Active hormone needed in all of our cells. T4 has to convert to T3 but not if the T4 is too low in the first place.
We usually gain weight if hypo because our metabolism is so slow but with increases to take you to your optimum then you can then see about your weight gain.
Shaws your few posts have helped immensely! In your opinion do you think I am OK to keep raising my t3 meds because if I'm honest I can't see my doctor raising my levo x
Because you are relatively newly diagnosed, I would get a new blood test first - the earliest possible and fast (you can drink water). Leave about 24 hours between your last dose of thyroid hormones and the test. You might have to not take T3 for a few days as you really want a rise in your levothyroxine - 50mcg is usually a starting dose but because she said your borderline that's why she's given you a dose which is usually used for increments, i.e. you start at 50mcg then slowly raise about every six weeks by 25mcg until you feel much better. Not for her to stop at a dose because you are now in a range. Sometimes if our dose is too small it backfires.
Ideally you would want to be prescribed levothyroxine initially and then add in T3 if you still remained unwell. Most doctors wont prescribe T3 but I think things are changing slowly. Because you are hypothyroid all medications from now on are free because we have a serious illness if not treated properly.
Ask your GP to test your Free T3 as you are feeling quite unwell and it might be due to your FT3 being too low. She may know nothing about FT3. Some labs wont do anything else if the TSH is 'in range'.
If you don't want to stop the T3 and carry on as you are tell your GP you were so unwell and have had an improvement by adding T3 yourself (it is a prescription medication). You will have to judge what her reaction is.
I personally think T4/T3 together can have a positive effect on a patient rather than T4 only.
Some people cannot get better on levo so you have to give yourself time. Because it's take years for us to become unwell, it is a slow process and hopefully not too slow for you.
I've got bloods Monday but I do think I will have to order private tests because they didn't give me a t3 reading becàuse it was in range, as was my tsh! I will tell my doctor I'm taking it but I cannot get an appointment until 12 October!!!! And I made that appointment last week!!!
Just continue to take the dose of thyroid hormones as you are going to tell her and she'll know then why your blood test wont be what she might expect.
Yes I've taken all the info you e given ma about vitamins etc and written it down because I forget ha!! And I know I should eat when hungry but I'm not used to eating this much! 😁 I am really greatful
Well, I've just read you the riot act, above. But hopefully other people will benefit from it, too. Because you're not the only one afraid to eat. It happens all the time. And it's so sad. Life is grim enough, we ought to take every possible occassion to enjoy.
Well, there you go again! No. No exercising until your T3 is optimal.
Exercising uses up your T3, and you haven't got enough to begin with. So, what's going to happen if you use it all up exercising? It's going to mean that you Don't have any left for all the other stuff you have to do. And it's not going to make you lose weight! On the contrary, if it makes your T3 even lower, you're just going to put on even more weight.
You've got to forget everything you've ever learnt about... everything. You're starting a new life, with a new body, and you have to learn to live well with it. All the old stuff you learnt about losing weight, it just doesn't work anymore - actually, I doubt it ever really did.
So, just a little light walking to stop you rusting up. And eat well. Don't listen to those that tell you you have to exercise to be healthy. Sometimes that's the worst thing you can do. What you have to do to be healthy is optimise your T3. And when you've done that, you can find out what your new body needs and is capable of.
What? No. The right dose is when it's brought your T3 level up to optimal.
You start taking the T3 at a low dose. You gradually increase and increase it until your symptoms have gone. And then, when you test your FT3, it will probably up near the top of the range. You're never going to feel well with it down the bottom.
Yes, well, you're a long way off needing them, anyway.
But I seriously suggest you ask your doctor for a copy of your results (with ranges) for the time your FT3 was 'OK', because I'm pretty sure they were bottom of the range.
Then, you must go back and ask again. You can't let them get away with that.
I suspect they didn't actually test for it, and they're just trying to cover it up. But that's a very dangerous thing to do, because you will be suffering if the FT3 is too low. So, they must be made aware that that is not acceptable. If I were there with you, I'd do it for you! But I'm a long, long way away.
What exactly do you mean by 'the levo'? Do you mean the hormone T4? Or do you mean the tablet with it's fillers? Or do you mean the fact that you never actually took enough of it?
This article isn't about 'Levo'. It's about TSH. I've only skimmed through it, but I think I'm right in saying that nowhere does it say 'Levo makes you put on weight'. What it says is : keeping TSH too high - i.e. not taking enough Levo - makes you put on weight.
Now, I Don't know all your history, but I'm willing to bet that your TSH has always been too high. And THAT is what is making you put on weight. Not the Levo, not the T3, but the fact that you aren't taking enough of anything to activate your metabolism.
Seems to me that you are still rather vague about your disease, and you need to find a good basic book - or an on-line article - and start Learning from scratch. Just reading the odd article here and there without knowing the basics is just going to give you the wrong ideas. I can't think of any such book or article off hand - I've just got up - but if you post a new question, somebody will be able to point you in the right direction. Something like Breda Barnes book - it's rather old but still relevant. Otherwise you're just going to be floundering round in the dark scaring yourself.
Hey the NHS GP's are very reluctant to treat what they class as 'borderline' cases - my TSH was 4.1and T4 was 10.1 and one GP refused to treat me and said retest in 6 months even though I was symptomatic and nearly in tears, the 2nd GP had to be shown the thyroid uk chescklist of symptoms with my symptoms ticked and a paragraph from Dr Toft's book advising GP's to trial Levo in such cases before she would grudgingly agree to it - including giving me a lecture on it being against her better judgement and the risks of turning Hyper!
Yes, well, Natj is being treated, she just hasn't ever been given a high enough dose to make her well, as far as I can tell. But we haven't seen the full history...
Just shows how reluctant the NHS GP's are to give the patient enough meds to treat hypo patients who are borderline. They are obsessed with the fear of giving them too much and the patient becoming Hyper!
The medical profession's knowledge of of the problems we can have with - remaining undiagnosed due to the TSH - prescribing too low a dose of hormones - ignorant of clinical symptoms.
That's why we have to search the internet for help and advice because it is rarely forthcoming from those we EXPECT to be knowledgeable only to be let down when we finally find out they know less than we do.
Natj123, you've gone from 25mcg to the equivalent of 100mcg in 13 days and are probably overmedicated. The weight gain may be due to hypo symptoms lagging from before you started 25mcg, which was never likely to be very helpful, but overmedication can also cause puffiness and weight gain. thyroid.about.com/od/thyroi...
If you can delay the blood draw for a week and stop T3 now it should be long enough for TSH, FT4 and FT3 to reflect levels on 25mcg.
Iron anaemia may reduce absorption of thyroid meds. You should be careful to take iron tablets 4 hours away from thyroid meds as they bind to iron, further decreasing absorption.
A cortisol serum test will show cortisol levels at the time of testing and will confirm or rule out Addisons (low cortisol) and Cushings (high cortisol). There are no grey areas in between as far as NHS is concerned. Private saliva cortisol tests will show levels at 4 points during 24 hours and whether cortisol is unduly high or low at those points.
Natj, it depends want you want to achieve. If you want your GP to manage your condition you should stop T3 and give sufficient time for Levothyroxine to work when dose is optimal.
If you are stopping T3 in order to 'pass' the thyroid test to hide from your GP you are self medicating and intend resuming T3 after, I think it is a mistake, and the fluctuating hormone levels will make you feel unwell.
If you intend to self medicate dose increases should be gradual, every 6-8 weeks, to allow T3 to be absorbed and metabolise, and if GP isn't willing to order FT3 you should order private tests to monitor levels.
No, I'm not stopping to hide it from my doctor I will happily tell him I'm taking it, but to be honest I'm not sure I will tolerate a higher dose of levo, I took 2 the other night by mistake and I was sick, hot flushes and felt terrible for the following 24 hours!!
So if I get my t3 tested and its 'OK' should I not take any t3 tabs at all then
You should take levo when you awake with one glass of water and wait about an hour before eating. Food can interfere with the uptake. Also you can take some Vitamin C in the water which helps levo to convert to T3. One dose of levo today takes around 4 weeks to gradually diminish as it is long-lasting.
That's fine as many do take levo at bedtime. If you've had a 'fatty meal, you might have to leave about 2.5 hours as food takes longer to digest when we're hypo.
I've just read the link and that's all made sense!!!
What I'm going to do is stay where I am now and see how I am in another 3 weeks, by then my body should have caught up with the increases I made and I can re assess how I feel then, whilst working on upping my iron. And getting private tests done on other vitamins etc!
Nat, Do you mean you are continuing with 25mcg T3 and 25mcg T4?
If FT3 is at the top of range, or over range, you don't need T3, otherwise it's fine to take it. Take your T4+T3 after the blood draw.
You need to continue improving iron whatever thyroid hormone you take. Take each iron tablet with 500mg-1,000mg vitamin C as it improves absorption and minimises constipation, and take it 4 hours away from thyroid meds.
Natj, I find it difficult to believe FT3 is okay when FT4 is below range and TSH low. As T3 is improving symptoms it suggests your FT3 is far from okay.
Ok is not a result, it is an opinion given when a result is within range. FT3 3.1 and 6.8 are both within 3.1-6.8 range but you will probably feel dreadful at 3.1 and possibly marvellous >6.0.
Have you tried iron bisglycinate? Has high iron content but gentle on the gut. Something else you might consider is the Cambodian Iron Fish healthunlocked.com/thyroidu....
Interestingly it is also possible to have folate and b12 serum levels that are normal but be deficient in practice because mutations in your metholation pathway are preventing proper conversion to the bioavailable forms of these vitamins.
Only to say that if your vitamin levels in your blood work come back normal, but you still feel like poo, it is possible that can still be deficient. For example, folate as your blood work displays it has to be converted in your body to methylfolate before your body can actually use it for anything. If there is a problem in that path, say for instance you have an mthfr mutation, your body may not actually be able to convert enough to meet its needs. There are about 40 core mutations in the methylation pathway (including mthfr) that are implicated in diseases/deficiencies. So keep looking.
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Help with results
Query re NHS bloods v private what's missing? 
Help please!
Help with T4/T3 dosage please.
