Results

[Kareno77]

So I wrote a month ago after having been tested for a dodgy thyroid only to discover the TSH results were 3.5 and “normal” And was looking for answers and some reassurance, the last few weeks have been stressful, panic filled and the worst weeks ever after an ultrasound where “something” was found to multiple biopsies I finally got my results yesterday and it was as I guessed, Papillary thyroid cancer! I’ve now got to have the entire thyroid removed along with multiple lymph nodes in both sides of my neck. I had a camera down my nose to check my vocal chords and have now got to have a CAT scan before surgery, Covid test and self isolate for 3 days before surgery. It means levothyroxine for life and either short or long term calcium replacement. My surgeon / specialist is lovely and my mind has been eased since meeting him yesterday. I’m still not sleeping well hence writing this at 1:20 am! Think the stress and worry combined with a very sick thyroid has had a major impact on my body but now I can start healing. I will update again when I’ve had surgery and the radiotherapy. I guess for anyone going through this now and in the position I was in a month ago all I can say is this group have been a great support, they know their stuff and although the worst part so far has been the waiting, the dark thoughts, lack of sleep, horrendous lethargy, depression and fear of having cancer at the age of 42 for me being told it’s cancer has actually been a weight lifted off my shoulders, I’ve been unwell for months with lethargy and very low mood and put it down to my age, but in finding that enlarged 3 x 5 cm lymph node in my neck was the absolute start of this whole thing and all I can say is if there is any lymph node that doesn’t look or feel right GET IT CHECKED! I’ve left mine for sometime, probably because the coward in me knew what it was but please any unusual lumps that don’t go away, don’t hurt, a palpable mass please don’t leave it, mine is in the right side of my neck and sits above the right thyroid lobe (picture below) my neck has only recently changed to look like the below before all it was and I can describe was an small egg size lump, hard and not sore and my symptoms lethargy and depression (not the most common thyroid cancer symptoms like sore throat, unexplained hoarseness, difficultly swallowing and no initial painless lump in the front of my neck) and that’s the reason for this long post, sometimes we don’t get all the common symptoms or all of them and that’s why it’s so important if you’re feeling unwell see your GP. I never thought lethargy and depression would be cancer. So check your neck if it feels unusual just get it checked. My consultant also intimated that 3.5 TSH isn’t normal, and that’s a little minefield when you start researching it! I don’t fully understand the blood result side of things but again the guys on here have a fantastic understanding and will be able to give great advice. It is scary, but but there’s a good support network here and I’m grateful for the advice I’ve been given. Hopefully will update after the operation, take care x

[Anniegal]

Best of luck. Trust you will make good choices.

[Kareno77 in reply to Anniegal]

Thank you x

[shaws Administrator]

I'm really sorry that you've had severe symptoms as well as having your thyroid gland removed and wish you a swift recovery.

Also ensure that they will prescribe - at the very least - a combination of T4/T3. It's bad enough having a thyroid gland removed so ensure that you will be given a combination.

We used to get prescribed NDT (natural dessicated thyroid hormones) but - due to the awful withdrawal of it by those who should know better who withdrew NDT through False Statements, despite it being the only replacement hormone from 1892 onwards. It is made by pigs thyroid gland but saved patients' lives from then on, until Big Pharma saw a chance to increase profits and introduced levothyroxine, (T4 alone) which should convert to T4 but doesn't always improve one's symptoms or health.

Take thyroid hormone replacements (usually when we awake) with one full glass of water and wait an hour before eating. Food can interfere with the uptake.

Blood tests should always be at the very earliest, fasting (you can drink water) (and make the appointment weeks ahead). You should allow a gap of 24 hours between last dose of hormones and the test and take it afterwards.

Always get a print-out of your results - with the ranges -for your own records and if you have a query post them for comments. Ranges are important as labs differ in order and for members to comment upon them .

[Kareno77 in reply to shaws]

Thank you for your response and the information that’s really useful to know and very much appreciated x

[shaws Administrator in reply to Kareno77]

When we're first diagnosed we are flummoxed as it not as easy as other illnesses to understand.

I hope your doctor will be knowledgeable and understanding. If not, put any query onto a new post.

Thousands do fine on levothyroxine once it reaches an optimum dose. Dose is increased gradually until our TSH is 1 or lower (some GPs think 'somewhere' in the range is fine, but it isn't - the aim is 1 or lower). Many GPs might reduce your dose of levo to bring the TSH higher. Not good. TSH (thyroid stimulating hromone) is from the pituitary gland that tries to raise our thyroid gland to produce more thyroid hormones.

Ensure your B12, Vit D, iron, ferritin and folate are also optimum. Doctor should test them when you have your next thyroid hormonex tested.

[Kareno77 in reply to shaws]

Thank you, all this information helps and you’re so right it blindsides when you’re first diagnosed and you don’t know where to start looking for help and answers. My consultant is lovely, I did tell him some concerns about my blood pressure and iron etc and he put my mind at ease and said we will sort it all for you ☺️ I think at the moment it’s just coming to terms with it, he said he will keep me in until my levels are right and also my calcium needs to be closely monitored he basically said it could be 4 days, 2 weeks or longer but it will be sorted before you leave hospital. The radioactive iodine pill scares me a little, I’m not good at taking big pills and I can’t seem to find out how big it is So am a bit panicky that I won’t be able to swallow it 🙈 but I’m getting ready ordered herbal teas to ease nausea and ginger chews, lip balms, books etc. I’ll update with new posts as and when I have info but thank you for your comments xx

[Hay2016 in reply to Kareno77]

It’s paracetamol (caplet) sized, don’t worry about it at all. Xx

[Kareno77 in reply to Hay2016]

Ha! Thank you, that’s put my mind at rest 😊 xx