I had half my thyroid out end of September last year as it was enlarged. I was assured all along (nearly 3 years) by ENT consultant that it was 'nothing nasty' but he decided during summer 2023 it needed to be removed when it was pushing my windpipe right across to the side of my throat.
Results came back as papillary cancer. ENT said that there is in all likelihood no cancer in my body now as it was in the thyroid. However I am having the other half of gland removed in two weeks time as a precaution and then radioactive iodine.
All blood tests for Thyroid hormone levels have been normal all along which I find odd as I feel like I have symptoms of hypothyroid.
I have been feeling awful for about 2 years - weak, breathless, exhausted, appetite decreased. Since the surgery I am constantly burping, even more breathless - I am breathless just from taking a bath. I hobble like I'm about 80 - I am a previously fit 65.
My appetite is really bad which people comment on as I have always been a big eater.
Has anyone else experienced anything similar?
Written by
Catmad63
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
Often when doctors tell us our blood results are normal they may be showing signs of thyroid disease.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
When we have thyroid issues we get low stomach acid which means we cannot absorb vitamins well from our food. Low vitamin levels give us extra symptoms.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
When you get thyroid blood tests its important to do the test at or around 9am when TSH is at its highest.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)?
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day.
Have your thyroid antibodies ever been tested? NHS only tests one type - TPO but privately you can also test Tg - thyroglobulin.
Thanks for replying. No I didn't know I could get my blood test results printed to refer to. I will look on my online patient access to have a look) I am due to have the other half of thyroid out on 22nd January so will see the consultant after the op. I am not one to ask questions as I have always thought 'They know best' and leave it to them. I will be put on thyroxine medication after the op of course.
When it comes to your thyroid health it's probably best that you learn to start asking questions. Get thise results printed off and ask for the vitamin tests from your GP. You may well already be suffering low vitamin levels and their symptoms already.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Thanks for the reply and all the information. I didn't know I could get my blood test results printed to refer to. I will look on my online patient access to have a look) I am due to have the other half of thyroid out on 22nd January so will see the consultant after the op. I am not one to ask questions as I have always thought 'They know best' and leave it to them. I will be put on thyroxine medication after the op of course.
I have always thought 'They know best' and leave it to them. I will be put on thyroxine medication after the op of course.
Hypothyroid management is at best scant …..TSH frequently all that’s tested (totally inadequate)
it will be down to you to get FULL thyroid tested correctly and regularly
And test and maintain OPTIMAL vitamin levels yourself
A normal working thyroid makes 80-90% Ft4 …..but crucially 10-20% Ft3
At least 10-20% of thyroid patients find they don’t do well on just levothyroxine (Ft4) …..but need addition of small dose of T3 alongside levothyroxine
It’s hard, but not quite as hard as 2-3 years ago, to get T3 prescribed.
Many members get T3 prescribed privately. A few of us have jumped through enough hoops to get T3 on NHS
Numbers are increasing on NHS…..as price of T3 has dropped
Great actionable advice above from our admins. Read every detail to get on your way to figuring it all out.
I just wanted to reply and let you know that yes, me and many others have experienced those symptoms !
I’m a 50 year old 3x marathon runner, used to hike every week, tons of energy, which turned into me saying “I feel like I’m 90 years old.” My friends would joke - oh, haha you’re just getting old! But I would say - no, SOMETHING is wrong. Weakness, exhaustion, zero appetite, breathless, and lots of others.
Let us know your new blood test results when you get them!
You have found a forum full of peers who have been in your shoes at some point. We are all so different and also completely the same in so many ways.
At first it’s so confusing and mysterious - the symptoms, what the blood tests mean, what to do. Over time there will some basics that emerge and will unlock your understanding of what is happening in your own body.
Begin with the advice from the admins above. All/most of us on this forum are knowledgeable and helpful, but when in doubt, you can take admins’ posts to the bank!
You will likely read these replies, read them again, and then come back to it and read them some more.
It looks like a lot, but it’s tackled just one step at a time.
So ask any and all questions any time you need to. Let us know what your bloods are when you get them!
I’m so sorry that you have to be subjected to repeat thyroid surgeries. I was sick for two years with similar symptoms. For the entire time my thyroid hormones were always in range. I suffered horrendous fatigue and breathlessness. Doctors just dismissed me, it was a lonely period of suffering because no one understood. The doctor finally did an ultrasound and needle biopsy was performed. That resulted in papillary cancer diagnosis on one lobe. I opted to have total thyroidectomy because I did not want to undergo operations. Seven years later and I’m still titrations my doses. I was 61 years old at the time but I felt like 90 years old. I know exactly what you’re going through. The extreme fatigue lifted after the operation but I’m left with lingering hypo symptoms. I’m much improved though. I think that once our thyroid is diseased, we never recover 100%.
I wish you a speedy recovery from your upcoming surgery. We’re fortunate to be members of this lovely forum to guide us on this life long journey. We’re all in it together!!!
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