Had 6 weeks of radiotherapy & chemo. Treatment finished sept 18. I’m still here thankfully but my thyroid has taken a battering from the radiation.
Im showing under active from bloods since a year ago and experiencing all the awful symptoms so they’ve finally started me on thyroxine 25mmg two weeks ago.
The problem is I’m not feeling better and I’ve ballooned in two weeks up 4kg. I assumed I’d loose weight and feel better - not gain and feel worse! Any advice appreciated as I’m really unhappy 😔
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Headandneck72
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Bloods should be retested 6-8 weeks after each dose increase in levothyroxine
Standard starter dose of levothyroxine is 50mcg levothyroxine, unless over 60 years old
You will probably need several increases upwards until on full replacement dose
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, when hypothyroid
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
I’m due to have my 2nd bloods this week but the doctors are only testing T4 - what bloods should I have to test my thyroid function and vitamin levels completely please? I am going to ask them to do these
For full Thyroid evaluation you need TSH, FT4 and FT3 (plus both TPO and TG thyroid antibodies) tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies or if been hypothyroid for several months
You are unlikely to have high thyroid antibodies, but it’s included in private testing testing bundles anyway
Ask GP to test vitamin levels or test privately
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
I've found it impossible to lose weight until my thyroid meds are right - and even then it's a real battle because your metabolism is shot. You are currently on a very low "starter" dose , because of your cancer, so you will need to be patient to get to the "right" level of meds [patience is one thing us hypos are extremely good at!] .
The blood tests SlowDragon has mentioned are really important to get done - but very often your GP won't do more than the absolute minimum - TSH, and if you're very lucky, freeT4, so you will see lots of posts here about private testing.
It's a very sad thing, particularly after all you've been through, that you will now need to be proactive about your thyroid care. It's barely covered in GP training (and the nutrient side not at all) and most endos are diabetes specialists, not thyroid experts - so for very many of us, this forum is a life-saver.
I do still have contact with my cancer team and there is a thyroid consultant that I spoke to at my most recent follow up appointment I might ask if I can have my next consultation with her. She must be at the top of her game and better for me than my GP with regards to this issue.
I had an idea this may happen to me after radiotherapy, I’m scared it’ll turn my thyroid nasty and I just don’t want to have to face any of that again, I feel so anxious all the time to be honest.
Great that you have a good endo on board - that could make all the difference
Please try not to feel anxious - instead feel very pleased with yourself that you have found this forum, where people are nice and kind and sympathetic - and also extremely helpful and knowledgeable. I wish I'd known about it years ago.
And once you do get onto the right level of meds, there's no reason why you shouldn't feel tip-top (although weight loss will always be harder for you). One other thing on that - don't do the diet shakes - they contain soy, which you shouldn't eat in any form as it impedes your levo from working. Also need to avoid any vitamins etc with iodine (mutli-vitamins are not a good idea anyway) or seaweed/kelp etc as too much iodine can be very dangerous.
Real food. Reasonable amount of protein. Minimal white carb. Lots of leafy veg.
You need a certain amount of calories for your T4 to convert to T3 so extreme dieting isn't a good idea. Instead, drop the refined sugar (and almost all the things you know you shouldn't have like crisps, cakes, booze etc - but allow yourself a tiny bit of treat now and then or it all gets too miserable.
Some people find the 5:2 works; some do paleo and keto; I do the intermittant fasting thing where you have all your calories in a limited time window - in my case between mid-day and 7pm and while I haven't lost weight on it eating "normally" in the window, weight has been stable which is half the battle, And the first cup of tea, just after mid-day, tastes amazing after a morning of only water And it's easy to make part of your life - in my case > 2 years
Wow you certainly know your stuff, so glad I stumbled on this forum. I felt lost but it’s better than the last forum I had to join so grateful....
I like the Keto diet it suits my pallet - I can’t eat much dry foods because of my previous treatment and lack of salivary glands due to being fried by radiotherapy!
Vegetables are my friend but I have read the cabbage and sprout types are a no no.
My weight has gone from 63 (57 when poorly) upto 69.5kg I cant get bigger I’ll be busting out of my clothes!
Hello I am also a head and neck cancer survivor. And yes my treatment has also messed up my thyroid. I have read your information with great interest and I have a couple of questions. Firstly, I am a vegetarian and I am only just getting back to my normal diet which includes tofu and soy. (Sadly I still can't eat most beans). Secondly I have lost a lot of weight, due to my treatment and it's after effects. Will I lose more now I'm on levothyroxine.
Hi there - so I finished my treatment 2.5 years ago and gained my weight back and some due to thyroid under activity- the thyroxine has not made me loose the weight yet but I’m not sure I’m on the correct dosage yet - I’ve just had a Hemi Thyroidectomy because of a nodule so it’s a bit more complicated- with regards to food I have to eat most things with a water wash down but I’m sure I’ve heard soy is not recommended for people with thyroid issues.
To be honest I’m not the best person to advise you as still learning about this complicated gland and it’s function etc
I suggest you start a new post because all the experts will see and give you amazing advice.
With the post HN cancer questions I’m also a member of the Macmillan community where I get amazing advice from people like us following RT treatment and food - I had a tube etc so know exactly what you’re going through
Look up SlowDragon [one of the admins] - she has done a number of replies to people recently about the various tests available and how much they cost. Sometimes there are discount available - either through the Thyroid UK site or for Medichecks on a Thursday.
And look up SeasideSusie 's recent replies to people on how best to do a home test. Good luck x
I cannot add to all the brilliant advice you have been given, but can say you will get there. It takes time as any changes to the dosage take weeks to show. That is the frustrating part, but get your blood results and come back for more advice. I have learned so much from the forum, and have slowly changed from being a salted slug to a racing snail.
You beat one horror, you can take this on and get better. Be kind to yourself and dont beat yourself up if you found you have gained a pound. Hug.
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