hello everyone I am a 33 year old female, a year today I had my left side of my thyroid removed due to a cancerous nodule, follicular cancer to be precise, it wasn’t contained in the nodule and in June 2023 they removed my right side which left me without a thyroid- they started me on levothyroxine 125mg and calcium and vitimin d3 tablets in September that same year I had to have radioiodine as there were still cancerous cells lingering around- so here I am now in March, suffering from what I can only describe as extreme fatigue, muscle aches, weight gain, horse voice, no energy at all! I’ve had blood tests and I see my oncologist every couple of months but I just feel like I’m not living my life I’m just exsisting- I literally have no energy at all- I used to walk my dog several miles a day now struggle to do a mile, I’ve always been a little pocket rocket on the go constantly now I am ready for bed by 3pm as you can imagine this has effected my marriage life also- although hubby is supportive it’s almost an invisible illness as “I look fine” I suppose my questions are is anyone else in the same boat- does this all sound normal? Does anyone have any advice on what to do? I have been back to see my thyroid consultant since my surgery, I only see my consultant in oncology? Blood tests are sort of every couple of months but no mention of changing medication? I just don’t know if I’m being ignored or if this is the general aftercare?
Thankyou
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Lisalee123456
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Have you got some results (and ranges) to share ideally TSH, fT4 and fT3 also if you have any results for folate, ferritin, B12 and Vit D might give us some pointers
Please share blood test results and ranges as TiggerMe notes.
If you don’t have access to the full blood test reports, you are legally entitled to them and can request them.
But I just wanted to say that your experience is shared by many many people on this forum, and you are not alone. What you are feeling is (unfortunately) very usual but (fortunately) there are things you can do to feel better than you do now.
Thyroid issues are a long and winding road, but the collective wisdom of this board will help you understand why you are feeling the way you are, and start to take some control back in your treatment.
We are here for you to help with support and any questions!
Hi there, yes, I know exactly how you are feeling. I had RAI in 2019 due to Graves (hyperthyroidism) so have zero thyroid function now. I have pretty much slept my life away the last few years. I am only now starting to feel human again, all thanks to the lovely, knowledgeable people on here. I even went out for the evening last night and managed some gardening today - huge milestones for me. You need to request your test results, and keep a record of them going forward. Post your results on here and we can help you move forward.
As the others have pointed out we need more information re lab results before we can comment in any detail
Advisable to take vit K with vit D3...
Vitamin D and Vitamin K2 work synergistically with each other to ensure that calcium is directed out of the arteries and into the bones where it helps improve bone density.
Many of us test privately in order to obtain full labs
thankyou everyone for replying back to me I didn’t know if anyone would! My next blood test is due on the 22nd so will get results and then share! Thankyou so much!!!!
Thankyou I shall, I feel clueless about what I should and shouldn’t be doing I just turn up to where I’m supposed to be have the bloods done and come away- if I’m truthful I didn’t realise how much the thyroid effects everything before all of this! X
The thyroid is a major gland and responsible for full body synchronisation from your physical ability through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 said to be around 4 times more powerful than T4 - and the active hormone that runs the body.
T4 - Levothyroxine is a pro-hormone and needs to be converted in your body into T3 - the active hormone that runs the body -
and no thyroid hormone replacement works well until the core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.
Some people can get by on T4 monotherapy.
Others find that T4 seems to stop working as well as it once did and that by adding in a little T3 likely at a similar dose to that they had before they ' lost ' their thyroid - they feel better with T3/T4 hormonal balance restored.
Some can't tolerate T4 at all and need to take T3 only - Liothyronine.
Whilst others find their health restored better taking Natural Desiccated Thyroid which is derived from pig thyroids, dried and ground down into tablets referred to as grains, and contains all the same known hormones as that of the human thyroid gland.
It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH reading seen in isolation which may well be happening and why many forum members now run their own private blood tests and share the results on this forum where considered opinion is then offered and support and advice as to the next best steps back to better health.
It would be a good idea to register at your surgery for online access to your medical records and then you will be able to see, at your convenience, what has and hasn't been tested and we can talk you through anything that you do not understand.
You will likely be feeling overwhelmed with everything -
and it is a massive learning curve and a bit like having a jigsaw puzzle without a picture -
but slowly as you become better able to understand - the corner pieces of the puzzle become obvious - and you will start being able to self advocate and work your way back to better health and well being and be able to walk your dogs again and have your life back.
If you go into Thyroid UK - the charity who supports this forum - thyroiduk.org -
there is a page dedicated to Private blood test companies - where you can arrange the full thyroid panel to include the vitamins and minerals as detailed above -
usually called a ' full ' or ' ultra ' thyroid panel and consists of around 10/11 markers -
and between them Medichecks and Blue Horizon cover the country and can offer a nurse home visit - at a surcharge - if this suits you better to draw your blood and if you choose this option arrange the blood draw for the beginning of the week, say on a Monday or Tuesday as you'll then have the results through by the Friday.
The thyroid blood test should be an early morning draw, by 9.00am and you should fast overnight and just take in water - and do not take your T4 thyroid hormone replacement for that day until after the blood draw - so leaving around a 24 hour window from your last dose of Levothyroxine.
If taking any supplements leave these off for around a week before the blood test so we measure what your body is holding rather than that just ingested.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Which brand of levothyroxine are you taking for 100mcg and 25mcg
Many people find different brands of levothyroxine are not interchangeable
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, ESSENTIAL to test folate, ferritin and B12 at least annually
Test vitamin D twice year
IMPORTANT calcium and vitamin D supplements must be at least 4 hours away from levothyroxine
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
**update*** so after the worsest weekend I decided to go to a and e and demand blood tests as I knew something was wrong- turns out my tsh level was >100 I think it’s meant to be about 0.1, they’ve up my medication now to 175 a day gave me a drip of fluid as my kidneys was a bit battered- feeling reassured I wasn’t going crazy but now thinking how has this been missed?? Am waiting for a copy of my bloods will upload then!
So this reads as though you are not absorbing the T4 -
Just increasing your dose is likely not going to do much at all :
Levothyroxine is best taken well away from food and on an empty stomach and we should take it with water and wait around an hour before eating or drinking anything.
Whether you followed this protocol or not - to have a TSH of 100 - just says there is something wrong somewhere :
There is a liquid T4 if we find your issue is one of non absorption of the tablets.
Did the hospital run a Free T3 and Free T4 alongside this TSH so we can see what is going on and where the problem is - when will these other results come through ?
With my little eye spy glass I think I see a T4 at 3 - and under the range - which would be in keeping with a TSH at 100 :
What has been suggested as the next best step - a trial of liquid T4 ?
I can't see this print out too well -
Please start a new post with this update from 11 hours ago - as it is important and deserves more forum members than just me answering you tacked on down here on what is considered an ' answered ' post.
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