Newly diagnosed Thyroid Cancer but have felt as though have had an under active thyroid for last 10 months

[Ard1]

Dear friends,

This is my first post so apologies if I’m not clear.

I’m a 43 year old female who’s just been diagnosed with thyroid cancer and am waiting for 2nd fna and MRI results before I’m given a surgery date. I’ve been back and forth to my GP for 10 months until finally a locum DR physically checked my throat as I was swollen and having irregular swallowing problems. My actual reasons for visiting the Dr were because my bones hurt and I’m permanently exhausted, my skin which used to be oily and spotty is now dry and cracked to the point my eyelids are permanently split open. I’ve also put on a stone and a half in weight. My lymph nodes are swollen in my neck and sometimes painfully swollen in my armpits and groin. My face is puffy and my belly bloated and today on a very warm day I’m freezing cold.

The last 10 months I’ve been tested for various things including menopause, lupus and allergies. Since December I’ve been told that a positive cat allergy test accounted for my symptoms and getting rid of my 2 cats would solve them. Every visit to the GP since has made me feel like a mad hypochondriac until the locum found the lump and hey presto I’m diagnosed with thyroid cancer. However my consultant has also ignored my symptoms and said my tsh comes back ‘normal’. Im worried that after surgery I will be given medicine that will get me back to my tsh pre surgery and not what is normal for me. What can I do? I can’t go on living this exhausted life?

[Nanaedake]

Could you post your latest thyroid test results along with laboratory ranges? Then people can make helpful comments.

Usually, after thyroid cancer treatment you will be on a higher than normal dose of levothyroxine. The usual complaint of people with thyroid disease (without cancer) is that their dose is not high enough. This is unlikely to be a problem for you.

Make sure the doctor checks vitamin D levels. They are very often low in people with thyroid cancer and can cause bone/joint pain. There is some research to say that recovery from thyroidectomy is quicker if vitamin D levels are good.

Cancer and Vitamin D deficiency and supplementation for thyroid surgery

vitamindcouncil.org/low-vit...

onclive.com/conference-cove...

[Ard1 in reply to Nanaedake]

Thank you so much for your advice I don’t have print outs of my tests but will get them printed off and check my vitamin D. I feel so uneducated about this and unfortunately I’ve not had a good experience with my GP. I think some research and a change of GP is on the cards. X

[Nanaedake in reply to Ard1]

Well, it takes time to read up on all these things, we can't be experts when we start out with a new diagnosis. There are lots of people on here who can help with their experiences. Most GP's never see a case of thyroid cancer, there are only about 2000 people diagnosed with it in the UK each year. You could also contact Butterfly Thyroid Cancer Trust for more information. They don't have a forum like this so stick around here too.

[Ard1 in reply to Nanaedake]

Thank you you’ve been so helpful, I will make a start tomorrow with asking for my test results.

[Olivia80]

Hi, I was diagnosed with papillary thyroid cancer in 2016. My specialist wants my TSH suppressed to minimise any chance of cancer returning and I’ve had to have a bit of a fight with the GP about my blood results.

I got loooooooads of help from here, make sure you get print outs of all your blood tests and get tested for vitamins d, calcium, b12, b complex, magnesium. I feel really good when all of those and my T4 are at the max of their “normal” range.

It is a bit of a journey to get it right, but stick with it, and be persistent. If your GP doesn’t take you seriously, see a different one. Your body is also very good at telling you things aren’t right - my hair falls out if I take more or less thyroxine than I’m on 👍🏼

Good luck x

[Ard1 in reply to Olivia80]

Thank you so much for replying l, I really need the education. I seem to get told I’m in the ‘normal’ range for everything so getting the print outs is a great starting point. I hope you’re well now X

[Ard1 in reply to Ard1]

Thank you so much for your advice and support it’s so appreciated x

[Boohbette17]

Hello Ard1 , I just read your post and although I don't have knowledge regarding thyroid cancer ( I have Hashimotos) I hope you feel better soon ❤️& would like to suggest you try boosting your body with good bountiful vegetables, no wheat gluten no dairy . I learned of functional medicine & the impact our food has on us regardless what medical condition .

My first step was regarding hormones. check this out😊 & hugs🌸🤗

saragottfriedmd.com/what-to...

[Ard1 in reply to Boohbette17]

Thank you so much for your advice and hugs they go a long way x

[Nanaedake in reply to Ard1]

Be careful about cutting out dairy unless you are dairy intolerant. When we've had thyroid cancer, we might have lost or damaged parathyroid glands and we need a good supply of calcium. Although we can get calcium from leafy greens and bony fish, the calcium in vegetables is not as easily absorbed and our bodies might struggle without parathyroids and enough calcitonin etc. I don't know from the scientific and research point of view what the facts are but it's common sense to check it out with your doctor, research and read about it before making changes.

My own opinion is that going gluten free is not harmful as we probably all eat far too many carbs.

[Boohbette17 in reply to Ard1]

aw, you're welcome! apologies for the delay ...

Another hug & feel better soon my dear!😊🌈

[Hidden]

I had my thyroid removed in Oct 2015 before this I had no problems that you describe.

Anyway after I was given Levo which didn't agree with me I then joined this site and

started to ask questions. I now self medicate with NDT and also take Vitamins D plus other vitamins. You can get all the help you require on here just follow the brilliant advice.

Good Luck

[Ard1 in reply to Hidden]

Thank you so much for your advice and support it goes a long way x

[Vxxxx]

Hi thyroid patient advocacy UK tpauk forum helped me so much I am now on ndt and I am in charge of how much I take I go by symptoms. Get a second opinion re treatment plan xx

[Ard1 in reply to Vxxxx]

I am currently thinking about a second opinion re future treatment. Thank you for your advice x

[Vxxxx in reply to Ard1]

That's ok. I buy my own hormones and self medicate with the help of tpauk. Life's too short to let someone else tell you how you feel.

[Hidden]

I would say find a caring and compassionate GP who will support and guide you through this, they will give you time and be able to reassure you and answer your questions and liase with your consultant if necessary.

It’s a big shock when you get this diagnosis but you will be fine, I know as I’m a long term survivor.

Look after yourself and allow your body time for r&r after your op.

Take care. x

[Ard1 in reply to Hidden]

Thank you it’s all a little bewildering when the GP isn’t supportive. I’ll definitely take your advice x

[Gcart]

Me too thyroid cancer 2 yrs ago TT then. Was TOLD thyroid blood levels normal . Like u many many symptoms . This is the best advice I have received here, now I am much better than I was

Docs are clueless. Read and ask here good luck

[Ard1 in reply to Gcart]

Thank you I’m learning that people who’ve been through this are probably best placed to advise me. Thank you for your message x

[JMTS]

Dear Ard1

I was just reading your posting - and will be thinking of you through your journey. I am absolutely horrified with the posting of some of my dear friends on this website whom I have never met - but I feel as if I have as I have been going through exactly the same as them for over 40 years and it wasn't until I took some copies of your postings to my GP to read that he decided to put up the levels of my Thyroxine. I smiled to myself when he said that. - There isn't enough education apparently with Doctors about the Thyroid. I don't blame the GP's I blame the system and it is time that there was something done about it. Surely there are lawyers or solicitors in the UK that will take a case on with no win no fee as I am sure if all of you did something about it things would change. Until you do that nothing will change.