I’ve post on here a few times, I had my thyroid removed in Nov 2016 and have since put on 2 stone (2 stone is from my weight before I had an overactive thyroid, as I did lose quite a lot). I did try going off thyroxin and sourcing my own meds but I got myself a bit worried being on something that is unlicensed in the UK plus I didn’t really feel much difference. I’m just wondering if anyone know if there are any foods I should be avoiding or should be having, or does this not play a part in it?
Thanks in advance
Jenna
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Jenna5
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Hi Jenna, Dave here..i had a full (2 surgeries).. eating healthy lots of veggies, green shakes ie. spinach kale avocado lemon..... good proteins, and fats..and eliminate sugars and try to avoid pop..and aspartame,.. it's tough but once in a groove you'll be better..also make sure you are waiting 1 full hour post dose before eating ( sounds like you are underdosed) if you are morning dosing..i was having coffee and the pharmacist stopped that.. and after 1 week..i feel a difference
I had TT in October and have been trying to keep my blood sugar balanced and support the adrenal glands as advised by a nutritionist. I’ve found Michael Moseley’s Blood Sugar Diet book really useful and have lost 10 pounds since January. Advice varies as many people who’ve had TT have additional issues. Might be worth talking to a good nutritionist or dietician?
I agree with clutter, it depends on your thyroid results, you can get yourself into a worse pickle restricting calories when your metabolism is already running slowly.
When you say you went off thyroxine, do you mean you tried NDT? I had TT and the only thing that helped me lose weight (and actually, that was the least of my troubles, I felt like death on levo and levo plus T3) was NDT. However you have to dose it properly, and often you can't dose it properly unless you have adequate levels of iron and B12 etc.
NDT is only not licenced because it predates licensing, it's what's called a 'grandfathered' drug. It's FDA approved and perfectly safe, legal and prescribable in the UK. it's also legal to buy your own.
So what medication are you taking, what dose, and what are you TFTs - TSH, FT4 and FT3.
Also, I had galloping graves, hashis, TED and cancer, I was ill for a long time, and my endo said 'NDT is the only thing that works in patients like you, we dont' really know why, it's to do with your autoimmunity' - this is my observation also.
I am four stone down from the worst of it post TT, and have a stone to go although weight loss has been a by product of getting and feeling better - I could have lived with being chubby on levo if I felt OK, truth is I felt utterly terrible. When I was on levo - even when on paper my blood results were 'perfect' I gained half a stone in a week doing slimming world!
Funnily enough my blood results now on NDT are IDENTICAL to what they were on levo but the change in me is like going from night to day, which kinda goes to show that blood results are not the whole story. I am convinced that NDT is far more effective for peripheral metabolism, which of course is not going to show up in your blood. Things that also helped - again on the recommendation of my endo - was deep tissue massage, infrared saunas and exercise (yoga, dont't go running marathons) to start tickling that peripheral metabolism back to life.
For me now, I eat a good diet, i avoid wheat and gluten, processed sugar, I don't eat processed junk, and I don't go mad on carbs (however I do not eat restricted carbs in the sense of keto or any insane carb restriction) but what seems to make me feel good is roughly what you'd eat on a Slimming World Red / Original day - plenty of veggies and fruit, good amount of protein, and a modest amount of carbs. Low fat makes me feel ill really quickly.
Anyway, in short, the point I am making is you need to fix your metabolism - what is actually going in your mouth is the last step of that. I've known TT patients really make themselves ill vastly restricting their diet, and over exercising when they are not well. I read something recently by Anthony Toft (the guy that got us into the pickle of these ridiculous guidelines in the first place) pretty much eating his hat, and saying patients were right, thyroid replacement is really inadequate and for that reason he would hesitate recommending ablation in any thyroid patient for that reason, I will try to find the link and you should print it out and give it to your doctor. Also if you are a Graves patient, docs should not be paying too much attention to your TSH, FT4 and FT3 should be used to judge your level of replacement.
"I am so concerned about the state of advice on the
management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine-131 or surgery in patients with Graves’ disease, irrespective of age or number of recurrences of hyperthyroidism. "
In other words, the treatment is so crap, he hestiates to recommend people get their thyroid removed. Show it to your doctor.
I just wish the NHS would do more to help us, it feels like a lost cause at the moment and we have to live with the consequences for the rest of our lives
Well we do if we sit around waiting for an endo to fix it for us, which they aren't going to do. Even the good ones know they can't. I think the trick is to use them for what they can do for us, and seek out answers they can't help us with. I think part of this whole process is to run aground on the reality of that for a bit, it's scary, it's not fair, it's deeply frustrating. I have patches, even now, when I feel acutely vulnerable. It's an appalling state of affairs.
Hi Girlscout2, I love your post, and your attitude
Weightgain was the least of your troubles - I often say a similar thing myself
I'm also a few steps behind but in a similar position with NDT (I hope). I haven't reached my optimal dose yet, but things feel like they're starting to come together. I've only just realised I've consistently lost a few pounds every time I've been weighed over the last 6 months or so.
No dieting has happened, and in fact a lot of naughtiness over Christmas that still hasn't been curtailed!
To the original poster, the most important thing is getting your dose right. Things like dieting can make things worse, as without enough thyroid hormone your body is really struggling to make use of the food you're eating to keep you going.
Hey, yes it's been slow and steady for me too. My hair has thickened up, my finger nails have stopped flaking off, water retention has pretty much gone (I had to have my rings cut off my fingers at the jewellers even when 'optimally euthyroid' on levo, haha, what utter tosh these people talk!), I now have regular bowel movements (no one can know the misery of one poo a week!), I have regrown my leg hair, arm hair, eyebrows and pubes, my stomach doesn't distend and gurgle like a grosteque pregnancy, I can think, the list goes on. In short, the absolutely only circumstances in which I'd put that garbage levothyroxine in my body again is if someone held a gun to my head, and even then my preference would be they pulled the trigger and put me out of my misery. I simply do not care what the guidelines say, or doctors say, I did what they said to the letter, the blood tests were perfect, and I felt like SHIT, I was a sobbing, miserable, fat and exhausted zombie. I take natural hormones, and got my life back (I still wobble if I don't look after myself). Placebo effect? I very much doubt it but who cares!
My exact experience and feelings word for word - couldn't have put it better myself. My hairdresser told me recently that 9 months ago she was at a loss as to what to do as I had so little hair left. Now have some layers! Also had a pube bald patch which is slowly recovering. Eyebrow pencil no longer required. Actually have a social life. Our former NHS treatment would be laughable if it wasn't so tragic!
Sorry to respond again... but I eat a lot now... try to be 80% super healthy as I am a former athlete..i achieve that goal most weeks... I find when I have the green shakes it really helps.. and upping proteins and fats helped too..i am suffering from damaged parathyroids..so taking the extra calcium and occasional Rocaltrol... that's the suckiest part
Hey sorry about the parathyroids. Glad you are doing better. I can't tolerate green drinks, I seem to react to things since I lost my thyroid, oxalates being one, they make me really buzzy. It's finding what works for us isn't it? But really glad you are feeling better, NDT was like my body breathing out a massive sigh of relief. I don't think I'll ever be the person I was before all this happened, but I'm OK and I truly went through a period when I felt so desperate as I just felt like the walking dead, I used to just sit and cry, not because I felt depressed, i was just in despair all the time, it just felt, as I repeatedly said to my doctor, like 'my body is unhappy'. Horrible, horrible place to be. Partic when they say 'we have no clinical answer to your problem' (ie the naughty girl refuses to get better on levothyroxine!). Sod that for a game of soldiers!
Hi, thank you for your response, it’s really informative. I think one of the main problems I have is that I live on the Isle of Man and we only have one Endo (who is both NHS & private doctor) here now who is very much “it’s your own fault your putting on weight, nothing to do with Levo. NDT is a load of crap, iron & B13 don’t effect your thyroid etc etc” I have read so much about NDT but then he scares me off taking it. I would love to see another Endo, I do pay for my own private health care but I would actually pay to see another Endo in the UK who is more knowledgeable, especially when it comes to all the different tests, NDT etc but I wouldn’t even know where to go/who to see. I’m just getting really sick of not getting anywhere with my Endo and I have no alternative at the moment.
I hear you. I avoid endos now, I see them for cancer monitoring, make the right noises, do my bloods and then basically suit myself. Current one now is a leading light of the BTA, I emailed her before I saw her (as she's the boss, previous endo kept telling me that she was not happy to hear I was on NDT) and said, please do not argue with me, I'll never mention it if you don't, I don't want a script, please just leave me alone. So far she's never mentioned it and neither have I
The endo that told me that NDT is the only thing that works also said 'I used to prescribe it extensively ten years ago, I'd lose my job if I did so now'. The state of care is appalling and I'd really recommend that you get to grips with your health yourself. Providing you don't send yourself hyper, and do your tests, I really wouldn't even bother telling your doctor.
My endo surgeon - the man that saved my life as he believed me, I'd been under the care of a very senior endo prior that and he truly nearly killed me - was a brilliant man, but he would not prescribe NDT. He was a wonderful, wonderful man but after two years on Levo and T3 with everything on paper looking tickety boo, and me continuing to feel like a fat knackered walking corpse - he turned to me and said 'you can't cheat physics'. I felt so betrayed we actually had a stand up argument in his office (with a waiting room full of patients, i was i there for an hour and a half). I knew he respected me, he listened to me, and he knew that I understood my illness. I basically said, forget the effing blood tests! if you had not met me, and I walked in here and said, I'm tired, foggy, fat, constipated, weak, losing my hair, miserable, bloated with water retention, can't sleep, can't work, have ringing in my ears etc etc what the F would you say was wrong with me????? He KNEW I was HYPO. He then shouted 'What do you expect me to do about it?!!! I will lose my job!!'.
So, I said, we are talking about what is best for you and not what is best for me. You are saying I am greedy and lazy! How dare you!
Here are the words that changed my life "I suppose you could buy NDT on the internet, I could continue to monitor you and we can pretend we did not have this conversation"
THAT is the state of endocrine care in the UK. He emigrated shortly after saying UK thyroid care was 'barbaric'. My next endo was the one who said 'NDT is the only thing that works in patients like you' but she also said she'd lose her job for saying it.
IMHO you cannot trust them to help you, use them for monitoring, smile sweetly when they ask if you are taking your meds, keep picking up your prescriptions and shove them in a cupboard, and just do your own thing. Caveat to all of that is YOU MUST learn how to do it properly, and take responsibility for your own health. I see a lot of patients who just want to get rescued, and cavalierly buy drugs on the internet, get in a pickle, go running back to the endo, further confirming endo's opinion that NDT is not safe and thyroid advocacy is a bunch of hysterics on the internet. I am almost as angry with those idiots, who make it immeasurably harder for the rest of us as I am with endos. The sad truth is NO ONE is coming to the rescue, this is it.
Happy news is, with a bit of effort to learn, and a bit of effort to maintain your health, you can recover.
When I did mention I was trying NDT to my Endo a few months ago he did say he would continue to monitor me but he could not give me any advice and he also did say that he thought I was being stupid and it won’t work. I think I may try NDT again and give it longer this time, I just got worried that if I ever got put into hospital for any reason, the doctors would not know anything about NDT and may be reluctant to giving certain meds in case it reacted, I just scared myself more than anything
Nothing to be scared of. I dont' tell hospital doctors, I just say T4 and T3 combination therapy which is true. One thing to note, starting off on NDT is different if you have no thyroid, many TT people get in a pickle as they start too low and stay on starting dose too long, as you may already know, going HYPO is no joke and beyond a certain point you can start to feel actually jittery and paradoxically HYPER (you're not, it just feels that way as your T3 crashes and your adrenals start to complain). This is when people start to panic. This is what I mean about being really clear you know what you are doing before you start. xx
Where would I start if I wanted to go on NDT again? I already have a supplier but I know you mentioned being really clear that I know what I’m doing, is there anything you can suggest to read to help me? Or Should I just get my bloods done and ask on here for advice to begin with and then learn from there? Thanks so much, your really helping 😊
I didn't tell my Endo about being on NDT until I knew it was starting to work and I knew I would stick with it. So I saw her two or three times without mentioning it.
Some members never tell their doctor. Occasionally there are threads asking the question and people pitch in with their approach.
Another fantastic post! Brilliant stories of encounters with Endos.
Very interesting. Mine is somewhat similar. She now knows I self medicate with NDT, and will occasionally mutter things about how Endocrinology needs a complete overhaul and that NDT is better. But she never said anything like that BEFORE I did the research myself!! In fact she warned me off NDT, saying if have to pay for it, and strongly implying it was no different. The synthetics.
It's shocking that these people have got the knowledge (a tiny bit!), but it's more than their jobs worth to make use of it.
But also agree with the overall point. No one can save you but yourself, and doctors will be no help. You must research beforehand, though, until you're an expert at blood tests and aware of how to approach it systematically.
I was too sick for proper research before I started self medicating, so I read the forums for about a year, reading the same advice over and over again, until it slowly started to sink in.
I think my Endo is of the older generation and will not read the newer research. It all gets very depressing when you can't fit in the clothes you have worn for years, and nobody understands except for people with thyroid issues. I was overactive and was at my Endo every month, as I was so sensitive to dose increases or decreases, the tiniest change in my dose would send me the other way. I've been crying in some appointments with him cause I just get so angry. It is now the same with Levo, I had to split my tablets so I was taking 137.5 a day, in October I was very slightly overactive but it was the best results for a long time so my Endo kept me on that dose, then I went last week and I was under-active so now he has put me on 150 a day and I know when I go back in May I will be overactive again but he just doesn't listen to me, he's had me on every dose you could think off and I'm always over medicated or under medicated, I have never been 'just right', and its getting really annoying now
We hear this occasionally on the forum, doctors that are see-sawing up and down forever!
I think the first thing you need to do is read your own blood tests. Make sure you get a copy next time, post them as a new thread, and listen to all the advice.
Get to the point where you have your own opinion and preference about which dose you prefer. Keep a record of all the doses you've already tried, blood results if possible, and what symptoms were like. Then refuse to return to a dose you didn't do well on!
Unfortunately you don't even know if Levo alone can suit you, if it's not dosed correctly. Many doctors seem terrible at it
When you say hyPER and hyPO you mean you feel that way or he's obsessing over blood tests? I'm in and out today but will write you a longer reply later. How do you FEEL? Apart from the weight gain, how are you doing? Energy, clarity of thought, fatigue, energy, tummy, hair, water retention etc?
He's obsessing over blood tests, I'm always outside of 'the range'. Currently I am quite tired, not much energy but that just feels normal now, my tummy is always bloated, I do sometimes feel like my brain is going fast than my mouth and my speech comes out jumbled, which I never use to do. My hair is fine, my skin is dry, especially forehead and my shins. I've been given so many different cream prescriptions for my shins but none work. Ever since I was diagnosed with overactive thyroid my shins have been dry and itchy, sometime they bleed, I thought when I had my thyroid removed that may have stopped but it hasn't, they were really itchy last night and I just couldn't resist a scratch any longer so they were bleeding again. I have to go to the hospital every 6 months and have my eyes checked, my last appointment was two weeks ago and my eyes are still slightly bulged but a lot better than they were, I have eye drops and night ointment for the dryness now so they feel more comfortable. I always feel like I have a complete mixture of symptoms from overactive and under-active but that doesn't make much sense.
Hey it makes perfect sense. So it sounds like your antibodies are still active. Graves antibodies attack the thyroid, the eye muscle tissue and the shins, weirdly. So you want to tamp down your autoimmune response. I had eye issues for a couple of years after surgery and had corrective eye surgery in 2015 (I had TT in late 2011). The ABSOLUTELY WORST thing for your eyes is being hyPO. So you need, when you swap meds, to make sure you don't go hypo. This means getting your ducks in a row before you start. Did they ever test your TRab, or did they assume from the eye involvement that you were positive for them? If they'll do them would be interested to know what your levels are. Tummy bloating might be relieved by taking some digestive enzymes and some apple cider vinegar capsules with your meals. Probiotics might also help. Managing stress, eating good healthy food (when you feel crap and tired it's very easy to fall into the habit of flogging yourself with stimulants - coffee, sugar, white flour etc, might be an idea to cut out wheat and gluten), getting enough rest, not using a phone or ipad in bed and being strict to turn off devices in the evening etc (sleep hygiene) will all help. Maybe a little bit of gentle exercise, walk to the shop and back, do a very very gentle yoga class, do some callanetics type stretching. If you like saunas, going for a steam and a gentle swim. That kind of thing. Emu oil (yes made from emus!) might help your shins and dry skin, it should have no smell but you can put a drop or two of aromatherapy oil in the bottle to give it a scent if you like.
As you know, the culprit with Graves is your immune system, the victim is your thyroid (eyes, and shins) - for me it all go a lot better when I got off levo as my body just felt so stressed trying to run on that stuff (not everyone does, many people do absolutely fine, I was NOT one of them!!) it was like putting cooking oil in a Ferrari.
However, this is all a process, it prob took me two years to turn this ship around, it's incredibly hard to be patient, but it does pay off in the end! x
Hi Jenna5 In terms of diet are you tracking your food in any way at the moment? With things such as a food diary or Myfitness pal? The reason I ask is I find that especially with Hypo you have to keep a very close track of the overall calories your consuming mainly because your body processes the energy from foods differently to someone with a fully functioning Thyroid.
Just as an example myself and my friend weigh exactly the same and we both have very different weight maintenance calories she can maintain her weight on about 300-400 calories more a day than I can due to having a fully functioning Thyroid. So for me it was very important to no.1 get my levels within range and then no.2 find my daily amount of calories I could eat consistently and maintain my weight. Basically give it 2 weeks at what you think your maintenance should be and weigh yourself daily first thing in the morning log your weight and after 2 weeks you can see if your weight is holding steady or increasing/decreasing. Once you find your maintenance calories you can gradually reduce them to kickstart fatloss.
I hope this make sense and if you have any questions just give me a shout I am more than happy to give you a hand if your not sure I have managed to consistently maintain my current weight this way and even reduce it when needed. It may not work for everyone but the driving factor here is going to be calories in versus calories out.
Ok, so after all of your really helpful comments I am going to try NDT again. Last time I was on Nature-Throid, should I try this one again? Also, I am going to ring my doctors to get blood test, from what I remember it wasn't just the Thyroid Function Test I required, does anyone have a list of what I should get tested? I remember also having a problem with getting my Vit D tested as they said my first test was within range so the lab refused to test again a couple of months later due to the expense....it never ends!
Yes naturethroid, I'll find you the guidance and post later. You need a full thyroid panel - TSH, FT4 and FT3, having a look at your graves antibodies won't hurt (that's eyes and shins still by the sounds of it) - those are called TSI, or TRab. Vit D, B12, ferritin (pref an entire iron panel), folate. Creatine will tell us if it's getting into your cells. If you still have antibodies, which is sounds like it does, then TSH is IRRELEVANT as TRab - otherwise known as TSH receptor antibodies, you guessed it, bind to the TSH receptors, suppressing the TSH, it tells us nothing about your levels of repleteness. Out of range T4 and no T3 tells us you are not converting.
More later. But I'd advise against starting on NDT if you are anaemic, all hell will break loose (been there, done that, nearly got carted off to the loony bin I was SO agitated!!).
See if you can get back copies of your results since you've been on levo as well.
Great, god I wish I had your knowledge on this but I suppose that will come with time. No, I am not anemic so that is good. Ok, I will get in touch with my Endo to get my latest results but he usually doesn't respond to me. I will book in for the tests now and hopefully will have them next week providing they aren't busy.
Sorry i didn't get back to you today, will do so in morning. You need ferritin up, but you might have to start without it totally optimal as levo is such crap that it can affect gut absorption and all those pathways you need working to get iron up. You might have to do a holding dose, or NDT with a bit of levo added until you can fix the usual suspects. More tomorrow. But yes, it's your blood, it's your data, law says you can have it. You don't even have to explain why. My favourite line is 'do I need a reason?'. Good luck, will post tmrw x
I checked in with my thyroidless group, just to double check that I've got the advice right. When you have no thyroid the advice for starting NDT is different. So for other people they recommend you come off levo, let it trickle out of your body and start on a tiny dose of NDT. That is not the case with thyroidless people.
So in a nutshell, first off test your co factors (iron, b12, vit d, folate etc). Assuming your iron is not in your boots, you'd start off thus:
Most start NDT at 1 to 2 grains. You can split this dose. So if starting on 1 grain you'd take 1/2 in the morning on empty stomach and half at about 5pm (with no coffee or food an hour either side)
Then, if adrenals and iron are optimal they increase by 1/2 grain every 2 to 4 weeks or as symptoms return. You are going to know pretty quickly if there's an underlying issue and you'll know when you need to go up. Good idea to buy a page a day diary and just log your symptoms. I'm not sure what I think about 'adrenal fatigue' - I know that cortisol can defo be an issue, but not sure I'm convinced adrenal cells get tired, that's like saying a man with low testosterone has 'testical fatigue'
Many people find sipping an adrenal cocktail all day does help whilst the body recalibrates, as the adrenals need T3. So 1/4 to 1/2 teaspoon of unprocessed sea salt, 1/4 to half a teaspoon of cream of tartar, half a cup of orange or lemon juice, shake it all up in a big water bottle (I use a 1.5 litre mineral water bottle) and just sip it all day.
When they get to 3 grains they hold for at least 4 weeks. Retest (with at least 16 hours between last dose and the blood draw) to see where they are and continue to increase if needed till symptoms are gone, and as you approach optimal you'd increase slower and lower, by 1/4 grain increments. If you increase and feel you've overshot, you'd drop back by quarter grain and that's your sweet spot. You can space the doses out further if you want. So some take on waking, about 4 or 5pm and then might take 1/4 grain in the evening. You'll find what works for you.
You are aiming for a Free T3 at or near the top of the range and Free T4 around mid range. So for me, I take 4.5 grains and my T3 is about 5.9 and my T4 is around 15 or 16. Funnily enough these were also my results on synthetic T4 and T3 combination, but as I said, something other than blood levels MUST be going on as I am a different person.
Now, you might run into trouble, say with low iron, or low B12 so then you'd need to decide whether to hang on on levo whilst you sort that out, or do a combo of levo and NDT, but the thing to bear in mind is NDT WORKS - so if you are having problems, it's NOT the drug, it's just the there's something you need to figure out. We can help you do that.
For me I inject hydroxy B12 - I'm currently on 1 per week but will drop back to one a month.
I take b vits (currently on swanson activated b vits, but had some problems tolerating folic acid when my iron tanked, again you might have to figure this out).
i have regular epsom salt / magnesium flakes baths and I use a magnesium spray (or you can take mag supplements, take 4 hours away from meds0.
If you are still menstruating, you are gonna need, in all likelihood, iron. bitter experience has taught me that the best iron is BlueBonnet chelated iron, it's hard to get now, but you can get a similar product 'Ferrochel iron' - made by both Swanson and I think Dr's Best.
I take a multi mineral (copper free for me), digestive enzymes and probiotics.
I still have to keep an eye on my electrolytes. I have learnt my symptoms that a fast skipping heartbeat and a sort of vibratey feeling and I need adrenal cocktail, a slow booming pulse is usually potassium and generally fixed by chugging some coconut oil for a couple of days.
The key is to LISTEN TO YOUR BODY and go for your blood tests - I think a lot of people get a bit star struck with some of the thyroid gurus online and take to heart the idea of everyone needing 3 - 5 grains. Not everyone does. Some thyroidless people do fine on 2 grains, others need six or 7. However, more is not always better, just go slowly, you just need to start on enough so that you don't tank, and then just allow your body to recalibrate to each dose increase.
It really does help, I think I will need guidance when I get my bloods back so will post them on this thread if you don’t mind. I think my Iron and Vit D has always been on the lower side but not enough for the Doctors to do anything about, so I will get some supplements in for them but I won’t take them until I get advise from here. A lady did once tell me that rather than taking Iron supplements she just had liver once a week and it pushed her up to optimal level, might have to get myself to Tesco’s! Thanks so much, I will post my bloods as soon as I have them.
Thanks again for all your help and time you have taken!
Yes ask away. You might find regular sunbeds help on the d as well, you can get something called a collatan sunbed (infrared as well as UV light) which is not only anti ageing (brucey bonus) but also boosts D. If not, your regular UV would be fine, one a week for a while would help. For me, cos my gut was such a mess, food sources of iron was not enough, it's a mystery, endo says 'some patients like you are just perpetually anaemic and we don't know why' - I've done the whole rounds of haemotologists, iron infusions etc etc, but as soon as my ferritin goes south of 50 I have hideous symptoms, and really heavy periods. This is why I'm diligent on iron supps, vit b12 and folate.
Just to add, if you are not currently taking supplements DO NOT chuck the kitchen sink at yourself in one go. You'd want to add one thing a week and keep a diary. Again I learnt this the hard way, I felt so desperately unwell I was just in such a hurry to get better. I'd have saved myself a huge amount of time and misery if I'd started low and slow on ALL OF IT. Keep a diary, log each change, that way if you get in a pickle, you can work out what did it. Your body needs to know what's coming and when, if we are always chopping and changing it never has a time to 'catch its breath' so to speak.
One final bit of advice, I try to live by this maxim 'when you hear the thunder of hooves, think horses not zebras' - I see so much panic, people doing really harsh restrictive diets, going on T3 only, taking cortisone etc on pretty spurious advice. The thing to hang onto is there is a totally logical explanation for everything, and it's probably staring you in the face. It's probably NOT some rare and weird affliction that requires drastic action. Once you've got your head around all this, it's actually totally logical common sense.
Ok great, I will raid the stationary cupboard in work and get a diary and in touch everything slowly and make sure I post on this forum to ensure I am getting the right advice rather than taking my doctor or endo’s word for it
They didn’t test my Trab, they just saw an improvement in the bulging when they took my thyroid out and left me to it, other than eye drops. I have asked for the Trab test so hopefully they will agree to it 🤞
Hey sorry just seen this. Are these results from when you were on 150? Been wondering how you were doing! I can only function with ferritin over 70, I'm best with it at 100. That is a RUBBISH B12 result, I only feel remotely human when mine is well over 1,000, I inject and have done for years. Vit D, go and have a few sunbeds What were your HYPO results? You are not overactive, were you off your meds for 16 hours before testing?
Remind me, you had graves right? Without seeing an up to date TRab I wouldn't worry too much about the TSH, if you still have graves antibodies (itchy shins and eye issues say you do) then TSH is irrelevant. T4 and T3 are OK. How are you feeling?
From STTM (I have a host of MTHFR going on, but I don't over complicate that, so dont worry about that yet):
SERUM IRON (also called just Iron or Total iron): In US ranges, women with adequate iron are ‘close to’ 110 (or 109, or 108, or 107, etc….); men who have plenty of iron are “close to” the upper 130’s, based on what we’ve seen on hundreds of lab results. In other ranges such as European or Australian, optimal appears to be the lower-to-mid 20s at the least for women and higher for men.
If you are considerably higher than optimal, you could have the MTHFR mutation which will need testing and treatment. The MTHFR mutation also drives the ferritin low with normal or high iron is many of us, we’ve noted. If all three iron labs are high (serum iron, % saturation, and ferritin, you may have the genetic hemochromatosis and you can ask your doctor for testing for that.
PERCENT % SATURATION of IRON: When iron is good, women tend to be “close to” 35%, or 34, or 33 (or .35, .34, .33 for Canadian ranges), we have discovered, and men go from 38% to 40-45%.
Notes: Measures your serum iron divided by your TIBC. Like all iron labs, you should be off all iron for at least 12 hours before testing to see how your supplementation is doing, or up to 5 days to see what your natural levels are. The latter may be best. NOTE: % Saturation can look falsely good or high if your TIBC is too low!!
TIBC (Total iron binding capacity): When iron is optimal as explained above, TIBC will tend to be in the low 300’s (with a range of 250 – 450) or for other ranges, about 1/4th above the bottom number in the range provided. Some have a TIBC in the upper 200’s consistently.
Notes: TIBC measures whether a protein called transferrin, produced by the liver, is enough to carry iron in the blood. Used to determine anemia or low body iron. If your result is high in the range and in the absence of chronic disease, you may be anemic. NOTE we do NOT treat the TIBC. We treat the iron and % Sat. The TIBC just gives us interesting information as explained.
FERRITIN: Optimally, females often are around 70-90 with ferritin (Janie’s is 80 or less when her iron is good), though getting up to the 50’s has been good, too, when iron and % sat are OPTIMAL. Men tend to be slightly above 100, such as 110 – 120.
Notes: Measures your levels of storage iron. NOTE THAT WE DO NOT TREAT the FERRITIN LEVEL. A mistake. We treat iron and % saturation and let ferritin follow in its own accord. But ferritin is interesting to watch, and can also point to INFLAMMATION.
If your ferritin is low along with inadequate/lower levels of iron and % saturation, that usually points to simply low iron, which is common with those on T4-only meds, or undiagnosed, or under-treated. But we do NOT treat that low ferritin. We treat the inadequate iron and % saturation, and over time, the ferritin moves up by itself if it’s too low.
If your ferritin is low with very good or high iron, plus a TIBC in the middle 300’s or higher, that usually points to having high heavy metals and an active MTHFR mutation.
If your ferritin is much higher along with less than optimal iron, it can point to INFLAMMATION, i.e. inflammation causes iron to be thrust into storage, and inflammation is common with certain thyroid patients for a variety of reasons. In less common cases, higher ferritin can be from liver disease, alcoholism, diabetes, asthma, or some types of cancer. But for most of us, it’s just about inflammation from hypothyroidism, or gluten issues, or unknown. So we need to lower the inflammation before taking iron supplements.
If ferritin is high along with a high % Sat and Serum iron, you may have hemochromatosis, an inherited condition. Time to get tested in working with your doctor.
By the way, we learned that we should be off all iron supplementation for at least 12 hours before testing to see what supplementation is doing for us, but 5 days to see your true iron levels.
Yes this is my levo 150 results which I have just had, although I did take my levo 12 hours before. My Endo is crap and hasn't sent my levo 125 results so hard to compare. Yes, I have graves. I feel like a have a little more energy but still not great, my dry skin is awful and itchy, it just seems to be getting worse. It used to be just my forehead and shins but now I have patches all over my arms too.
What can I take to boost my ferritin? Also, as my B12 is 'sufficent' I doubt the Dr's would give me a B12 injection, and I don't think I would be able to do it myself :(, is there any alternative?
I have Dr's Best Vit D supplements (2000iu) to take, should I begin taking 1 a day until I get tested next? I also have bought Vit C and K2, which I will add in gradually.
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Thyroid removed in July 17
RAI or having my thyroid removed
