Hello, I'll start with a little bit of background about myself and what care I have received.
I'm 22 years old (male), I had my thyroid taken out just under 3 months ago due to papillary thyroid cancer. (I have not received radiotherapy). I was originally placed on 125mcg levothyroxine.
Since my surgery I have seen my surgeon once (I will be seeing him again next week), I complained about how tired I felt etc but he didn't want me to increase my medication because my levels we're close to the 'correct' range. I decided to ignore this and increased my medication to 150mcg.
I felt better for a few weeks but I am now feeling extremely fatigued again with other hypothyroid symptoms.
I was wondering how long it has taken people to find the correct levels for themselves. Also I am a little surprised that my surgeon who is an ENT doctor is still my primary point of care, is this normal as I imagine that I would be seeing an endocrinologist or even a thyroid specialist?
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ac212
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I have not had mine out but I am on 100 mg of levo. I wait until my levels have been low for a while then get bloods tested. But I got told off last time. It takes about 8 weeks to feel the difference when levels get increased x
Ac212, I was referred by my thyroid surgeon to endocrinology 6 months after completion thyroidectomy, and 3 months after RAI. NHS endocrinologist are primarily diabetes specialists, not thyroidologists. I didn't find mine at all helpful. Details are in healthunlocked.com/clutter
Get into the habit of asking for a printout of your thyroid results with the lab ref ranges or make notes of them yourself. "Close to the correct range" isn't good enough unless you feel well. Your results need to be optimal for you. If FT3 isn't included in your test results I recommend you order a private thyroid test from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin... Thyroidectomised patients can't always convert sufficient T3 from Levothyroxine and may need the addition of Liothyronine (T3) to ensure good levels of FT3 to feel well.
I also recommend you ask your surgeon or GP to test ferritin, vitamin D, B12 and folate which are commonly deficient/low in hypothyroid and thyroidectomised patients. Low/deficient levels can cause fatigue, musculoskeletal pain and fatigue very similar to hypothyroid symptoms.
Hello ac,
Sorry to hear about your op & ongoing health problems.
You have only been medicating on Levothyroxine less than 12 weeks. Clutter has already given good advice above but I wanted to say Levothyroxine initially takes up to 6 weeks to saturate the body (which only tolerates small increases well at any one time). I haven't had a thyroidectomy but was initially medicated on 100mcg and it took my body a further good few months to actually accept this hormone and utilise it properly making me feel very unwell meanwhile.
It is important to take your pill on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements.
Any deficiencies will require supplementing as optimal levels of nutrients & iron is required for good thyroid hormone synthesis. Many members including myself have found selenium to be very beneficial in aiding the conversion of T4-T3.
When having thyroid hormone levels blood tested, leaving 24 hours between last Levo dose and blood draw, and having the blood draw earliest in the morning whilst fasting (water only) will ensure TSH is at its highest.
I am not a medical professional and this information is being sent from me personally and not in my capacity as an Admin of Thyroid UK. It is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these recommendations.
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This following link explains the importance of vitamins and where they may be obtained. This forum is supported by the charity ThyroidUK. You do not have to join the charity to benefit from this forum but by doing so you will be supporting the charity and also entitled to various discounts when buying supplements, as detailed in the link below.
I have had full tt and further surgery to remove further nodules. I had mine removed as I had an enlarged goitre this was not cancerous. I was only about 20 when I had mine removed it is not a quick fix initially I was put on 125mcg from memory. You do have to give it time, your body also has to adjust to no longer having thyroid. I was always told to think of my thyroid as my bodies thermostat because it controls so many different hormones levels and these have to adjust. It took me a good 6/9 months to fully recover and get my levels to a manageable level. I have gone 20 years with my levels almost being the same and on the odd occasion having my thyroxine dosage raised then reduced, I had settled on 175mcg for the most. Until recently when bloods results became erratic I now take 250mcg.
Try taking your medication at night many doctors recommend taking it then, I have found taking it at night has helped. If you are taking other meds don't take them with you thyroxine as many meds prevent your thyroxine from absorbing properly and watch what you are eating as there are food out there that will also slow down the absorption.
Take a look at this fact sheet from the British Thyroid Foundation.
I had my thyroid removed for thyroid cancer, I didn't have RAI either (thank GOD!) and I also had graves and hashis. There's plenty of well intentioned advice here but my opinion is that someone without a thyroid is a totally different kettle of fish than someone who is naturally hypO - without RAI you need to be TSH suppressed FOR LIFE - that means giving you enough so that your TSH is zero, this usually requires T3. I also believe that thyroidectomized patients won't do well without some T3 in any case - either natural or synthetic, as you have no underlying function of your own. I was put on 125mcg levo after surgery and felt dreadful. There is an argument for seeing where your levels fall on this dose, and that will give you some leverage for arguing for dose changes, however at my first test I had plenty of T4 (in fact was T4 toxic, which was causing all kinds of jittery, fatigued symptoms) and I had no T3 - I was not converting. They put me on T4 +T3 combo and I still felt horrendous despite my numbers being 'in the normal range'. My body just didn't not like plastic, fisher price hormones!!
My ship started to turn on NDT.... but that's a long and involved story, I buy it and my cancer endo keeps an eye on me as she can't prescribe (and keep her job) but her conclusion was 'clever girl' when I told her what I'd done.
yes it's normal to see your surgeon, my surgeon was a German endo surgeon professor and he told me (sorry) that the reason so many TT patients do badly is because there are so many 'ENT idiots making a hash of it'. My personal view is you need to find a good specialist pronto. If you don't feel your doctor is your partner, then fire them and get another.
I'm now under the care of the Nuclear Medicine department of a large London teaching hospital with a specialist cancer endo, message me if you want to know where although she is retiring soon. I've stayed with her because I refused RAI but I had cancer ... she's great, and really, really understands my situation.
I'd also recommend the Yahoo! group 'thyroidless' - they really helped me as I was getting a lot of advice from the forums from people trying to help me, but as they'd not had a TT they didn't really 'get it' much as they tried.
Most TT patients I know only really get things turned around with NDT but you'll have to figure that out for yourself by doing lots of research. I agree that vits, minerals, iron etc are crucial. Living without a thyroid is a life long balancing act, it is possible to get well but it's hard work, and sad to say, you are going to have to do most of it yourself unless you are extremely lucky. My journey has included dealing with severe anaemia, deranged sex hormones (now normal on NDT), massive weight gain, unbelievable fatigue (I had a £100k a year job before I got sick, I could not work afterwards and the cure was worse than the disease!!), removing all my fillings (that hugely unblocked my conversion) and dealing with oxidative stress - it's taken me nearly five years but I'm nearly there now. I wasted a lot of time doing what I was told by doctors and not trusting myself. I also got into a pickle following standard advice for hyPO patients, not TT patients, there is - understandably - also a bit of an 'orthodoxy' with some of the thyroid forums, and you have to find what works for you.
Also just my personal opinion, but BTA advice is not worth the paper it is written on, stay away from them, they are just the puppets of the endocrinology orthodoxy, they also take funding from the drug companies making levo, and are buddy buddy with the doctors we all despise, so are not impartial. I learned the hard way with them, but personally I'd avoid them.
I agree with Clutter that the first step is taking control of your illness and your health, and insisting on copies of EVERYTHING they have on you, including backdated, get everything, and also ensure that all your letters are 'cc the patient' and start a file. Also start keeping a health diary, I use a page a day A4 diary and track everything, inc temps, pulse, BP, diet, supplements. And only change one thing at a time - that way if you get in a pickle, you can back track and figure out what did it. Diet is very important too ... A supportive GP would be good too, and again keep going until you find one.
What staging and type was your cancer, are they proposing RAI? If you are a stage one pap cancer, then it's probably not necessary - and they will monitor your Tg and TgAb as cancer markers. You should be seen three monthly for at least a year, then six monthly for a couple, then annually for about ten years (!!) and I'd advise getting your own tests if you can afford it, Blue Horizon are good ...
Sorry if that sounds a bit negative, but now is really the moment to put your hands on the steering wheel of your own care, you are YOUNG, you have your whole life ahead of you (say this A LOT to your doctors!!), it's important that you do not allow them to leave you feeling sh*tty and tired. But for now, I'd be compliant, and get educating yourself - then you can say 'I've done it your way and it doesn't work' - not for long, just long enough to help your argument. You might find some T3 (slow release or normal) is the key, or you might be like me and have a bigger hill to climb, and get on NDT, but it IS possible to get back to normal life.
Your reply is so helpful and refreshing. I do agree that life after total thyroidectomy is very different from life with hypothyroidism. My thyroidectomy was in 2002 in Greece. Following a long haul trying to get well on thyroxine, I did what you suggest and learned what I could about thyroid function and how that can be replaced after thyroidectomy. Thanks to the late Dr Skinner I take NDT, with all the extra bits that thyroxine alone doesn't give us, and also T3. I hope that ac212 gets a good start in leading a life as good as it can be.
Thanks! Funnily enough I've been in Greece all summer! Had a bit of a health renaissance here as the heat really seems to help with fatigue. I've met a lot of people here with thyroid issues too.
I've struggled quite a lot with concentration since this all started and I feel like I have almost just buried my head in the sand.
I did however look into treatment before I had the operations (1st was a diagnostic op) and I was really wanting to pursue NDT, but it hasn't seemed like an option in the UK so I'm really interested in how/where you obtained it.
I am seeing my surgeon next week so I will get all the information I can from him as I as seeing a specialist in Sheffield the following week. I have no idea why I wasn't referred to them at the start as Weston Park Hospital specialises in cancer and I would of had much more support.
Do you have any suggestions as to what I should say/ask at my next two appointments?
I really appreciate the help, I've just felt a little bit overwhelmed with everything.
I really understand feeling overwhelmed and finding concentration difficult, that's part of your illness, as is swimming against - at times - overwhelming feelings of apathy. I have a friend who had her thyroid out and her catch phrase for a while was 'I can't be bothered' - and in the end I really had to say 'that's your illness talking, and 'can't be bothered' will keep you sick' - it's very hard, and some days go better than others .... but we'll all cheer you on, but don't ever, ever give up! We have to be 'bothered' even when we feel like crawling under a duvet and sleeping for a million years.
I hear you on not really being told what's going on as well. My advice is write a list and sit there with a pen and paper, ticking things off and writing notes, if your concentrate is such that that's difficult, take a trusted person with you (one that won't be in awe to the 'specialist') who will take notes for you, even better if they or you interject and say things like 'sorry, how do you spell that?' .... this is YOUR BODY and YOUR LIFE, your doctor works FOR you, he or she does things with YOUR consent, they do not do things TO you, they do them FOR you. This is very, very important to understand and to feel confident about articulating. I had one very big show down with my (otherwise brilliant) endo surgeon who saw me for 18 months after surgery every three months. He was fab on vits, minerals, iron, sex hormones, diet, gut health, etc etc but would not contenance NDT. I did everything he asked of me for 18 months and was still feeling like death warmed up. He said (in a moment of stupidity) - your blood results are normal, it must be something else. That man had listened to me very, very carefully all the way through and that felt like a betrayal!!
I said, 'Forget the bloody results!! Imagine you'd never met me. And I walked in here five stone over weight, having lost most of my hair, with chronic constipation, fatigue, internal shaking, brain fog, swollen stomach, an inability to maintain iron homeostasis, sex hormone derangement, heavy periods, fatigue, water retention, blah blah blah. Why don't you use those highly sensitive medical instruments called your eyes and f**king ears! What would you say was wrong with me??????' and he said, well shouted, "HYPOTHYROIDISM!! But what the hell do you expect me to do about it???'
And from there, things got better, as I said, 'ah ha, now we are talking! The elephant in this room is NDT. I have done EVERYTHING you have asked of me and I'm still sick! The drugs don't work! I had a great career, and a life before this, I want to try NDT' (we were still shouting).
He said, 'I'd lose my job' and then I said, 'OK so now we are talking about what's best for you, I understand, but what about what's best for me?' and that's the moment when he conceded I could buy it on the internet, we'd 'pretend this conversation never happened' and he'd (and then his colleague after he emigrated) would continue to monitor me. And to be fair to the man, he shook my hand afterwards, and gave me a hug, as by that point, I could pull medical papers out of the hat, and talk with some knowledge about it.
The concern with NDT for TT patients is it might affect the Tg readings (cancer markers) as obviously pigs produce thyroglobulin. Patients who have this issue (I don't, my cancer markers have always been zero) is to take levo for two weeks prior to the tests and then go back on NDT - some of the American TT / ThyCa sites talk about this.
Sorry, I digress, for your next appointment I would want to know:
- what your TFTs are (and were) - so TSH, FT4, and FT3.
- antibodies - is ThyCa your only diagnosis or do you have autoimmune disease? So what are your TRab, TSI, TPO, Tg and TgAb readings? And if they haven't been tested, why not? (this is important to know partic if they are going to suggest RAI at any point) but will also help your argument for dosing - if you have TRab (TSH receptor) antibodies you are going to have a suppressed TSH even if you are HYPO, so they can disregard this. They should also be disregarding your TSH as you have had cancer, so FT4 and FT3 in particular are the stars of the show.
- If your FT3 is low in the range (needs to be high in the range) what do they propose to do about that? What's their view on T3?
- What are your iron (not just Hb, but full iron panel inc Ferritin) levels? Where are your B12, Vitamin D, Folate, electrolytes?
- Have they done a cortisol test, if so what was it?
- Have they tested your testosterone and sex hormones and if not why not?
- Is your doctor interested in your symptoms, write a big list, and get to know which ones are classic thyroid symptoms?
- What is their care plan for you? How often and by whom will you be seen? Will you have to do the barbaric testing where they take you off ALL drugs for six weeks before scanning you? (thank GOD I've never had to do this, sounds like living HELL).
- Will they ensure you are kept on the same brand of drugs (there is a wide variation between brands, up to 10mcg per 100mcg of T4) - this is very important for ThyCa patients, and they might have to intervene with your GP if they keep issuing with crappy generic.
- Will they help you work with your GP (to get full tests between appointments, a good endo will be writing to your GP to keep them in line as GPs are usually utterly rubbish at this stuff, they can do some of the tests above if your endo hasn't, or can help monitor your progress)
- And as before, your mantra should be 'I'm young, I have my whole life ahead of me, can we get our skates on!!'
I get my NDT from a trusted online pharmacy in the states, as do many patients, we can recommend this to you when the time comes. It's important not to rush onto NDT without having your 'ducks in a row' first, particularly iron, otherwise you will make yourself feel very unwell. Also the advice for TT patients getting on NDT is a little different and the starting dose is a little higher. Again we can hold your hand if you need it. However, you might be one of those lucky people who do fine on levo, or T4 + T3 and in many ways this would be your best option as then you'd be getting your drugs for free and not in a tricky situation with your doctor.
Meanwhile, eat very good food, nice and clean and natural, lots of water, and try to do a little bit of exercise ( a fifteen minute walk, a ten minute swim, a gentle yoga class), get on a good sleep rhythm, try not to use gadgets in or just before bed, and start your diary - even if you just took your temp and pulse every morning before you got out of bed, that'd help, and note down any major hiccups (e.g. ate banoffi pie, had heart palps afterwards, or walked the dog and then needed to sleep for four hours) ....
You are very welcome!! Glad it helps. It takes a while to understand thyroid hormones but once you've got it, that's it, you've learned it and you are on your way.
I don't always read this forum everyday (I've been in greece all summer, there's something about the heat that does wonders for my health -my advice is STAY WARM - sit in saunas, have an electric blanket, wear longjongs etc etc !!) so if you want to chat by all means send me a PM and I'll get an email alert, that way I won't miss anything.
And it's fantastic you are going to be organised when you see these specialists, but maybe don't get your hopes up to much, they are notorious for being completely incompetent!! Losing your thyroid is a very big deal (it will take you several years to truly understand quite what a BIG deal it is) and they - even the best of them - don't really understand it.
The good news is, there are ways to get better with or without doctors, and you are on a great forum of people who will encourage you no matter what.
sorry to hear you are feeling so tired and can relate to how you feel.
I had total thyroidectomy in 2008 and never felt the same since. However i have made great improvement recently after seeing a private consultant based in Crawley.
GPs work off our blood results only however we feel somewhat compromised. As long as our bloods are where they should be according to them there's nothing more they can do. As you have only recently undergone surgery it may take a while for your body to adjust and upping levo takes a while to accumulate in the blood.
Perhaps try reading 'stop the thyroid madness' this is where i did most of my research and after 6 years found out what my body was actually lacking and now feeling much better.
People who have had their thyroid removed need a full replacement dose of thyroid hormones. Normally doctors just prescribe Levothyroxine. The full replacement dose is usually calculated by looking at your weight. Also active people usually need a bit more than people like me who are chained to a desk all day. Now you say you are 22 years old and male. I have no idea how big you are but my experience of 22 year old males is that they are bigger than me (I am 5ft 3ins) and more active. I take 150mcg a day of Levothyroxine, so i would expect you to be taking more than that. Don't be fobbed off!!
I had my TT about 2.5 years ago. Lots of good advice from people here. I guess one thing to note is that 3 months is not a long time. Doctors work slowly and don't have the motivation to get us back on our feet. My surgeon took over a year to get my blood into range. Eventually I got into a situation where I was getting a full thyroid blood panel every 3 months when I saw her, the past 2 it's included FT3.
Since Xmas I've been seeing a private doctor from the ThyroidUK recommendedlist which you can get by emailing Louise Warville. I've improved a bit with him, but he's not prepared to set me up with NDT, so I've now got an appointment coming up with that doctor in Crawley who is probably the favourite of this forum.
I'm nowhere near being better or able to think about returning to work. But I am making slow improvements and getting energy to take care of myself at home.
Hi AC, If anyone gives you any argument whatsoever, consider ordering your own T3, T4 or NDT. Many people here are doing so, some even tell their doctors. It's unfortunate that treatment is often an uphill battle and you already have one...cancer.
Also look into IP6. I've been curious about it lately.
Hi ac, I havent got anything to add to Girl Scout's replies, just wanting to wish you a speedy journey back to health. At your age, you might have a better chance of finding an endo who is interested in actually curing you, rather than saying "Your blood tests are normal, now off you go." But bear in mind many doctors are clueless about thyroid problems, they might not offer you any hope of a cure, and you may well end up being forced, as I and many other members have been, to try anything that might help until we find the answers ourselves. This will require you to be sceptical, inquisitive, tenacious and dogged in your refusal to accept ill health.
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