Thyroid cancer

[Sabriine7]

Hello I’m new here. I’ve been diagnosed with thyroid cancer, had my TT and rai treatment all in 4 months. I’m 24 years old, dealing with cancer is getter harder and harder, im so moody, I’m losing all my friends for no reason and I’m always tired and starting to loose my hair. Can anyone tell me what I can do to make all of that better please ?

[Essdeebee]

First of all, have a hug. People assume that because it's curable we go back to how we were previously. If only! Has you MDT got you on Levo thyroxine now? If so, how long since they adjusted your dose? If it's longer than 6 weeks, ask your GP for blood tests, including all the thyroid tests, not just TSH.

On a different note, have you asked at your hospital if MacMillan complementary therapies are available? I was fortunate at mine, I had reflexology and it really helped the recovery from surgry and RAI.

[Sabriine7 in reply to Essdeebee]

Thank you ! Yes I’m on levo but we’re still testing the right dose, I take 125 now and I feel like it’s not the right one at all ! I cant change it because it’s only been 4 weeks..

[ilytotoro]

Hi there hope you're ok

Im 24 also and was diagnosed with thyroid cancer 3 years ago.

I've had my thyoid removed and the RI treatment also so I understand how rubbish it makes you feel afterwards.

Im not sure if you're taking levothyroxine? but if you are, once you've found the correct dose for you it helps a lot with low mood and hair loss, also ive found adding a multivitamin helps.

I would recommend asking a DR to check your vitamin D levels as i know they can get a little messed up after thyroid removal.

Hope this helps a little and feel free to Dm me anytime if you want to talk

[humanbean in reply to ilytotoro]

As well as vitamin D it is worth getting calcium levels tested as well. Sometimes the parathyroid glands are damaged or lost as a result of having the thyroid removed and this affects the way the body handles calcium. Levels of vitamin D and calcium are related to each other as well, even when the thyroid isn't directly involved.

Edit : Just noticed Nanaedake got there before me.

[Nanaedake]

Hi, I'm sorry to hear you had thyroid cancer and treatment. It does take time to recover, how lon ago did you have the thyroidectomy?

The treatment you've had as well as the anaesthetic for surgery will have knocked your system.

The first thing I would do is ask your GP to run a general health check with blood tests to include vitamin D, B12, folate and ferritin.

Good vitamin D levels will aid recovery and some anaesthetic can neutralise your B12 stores. Low iron stores will not aid recovery.

You could take vitamin C and its best in a food form. Some tablets contain vitamin C from food sources.

Did you lose parathyroid glands and do your blood tests include checking calcium levels?

Get a copy of your blood test results along with the lab ranges to find out what has been tested.

You may be able to register online to view blood test results with your GP. If not then ask reception for a print out and make sure to insist it contains the lab ranges.

To get a copy of results from the hospital ask at next apt or ring consultant's secretary to ask for a copy.

What does your follow up treatment include? Does your TSH need to be kept suppressed and what kind of levothyroxine or thyroid hormone are you prescribed?

Thyroid hormones are not all the same and you need to find one that suits you and stick to it. Look on the packet to find out what type you've been issued with.

When you have your vitamin results, post them on the forum for good advice. Dr's often say they are fine when anywhere in NHS range but coasting along the bottom isn't optimal. They all work together with thyroid hormone so you need good levels to function well.

[Sabriine7 in reply to Nanaedake]

Hello, thank you for all the advices ! I’ve had the TT on March 18th and rai on May 20th, so it’s not that long.

I don’t take any vitamins, I’m only taking levo and we’re still testing the dose (I’m not at 125)

They took all my thyroid out, and I still have cancer so my TSH needs to be below 0.1.

[Nanaedake in reply to Sabriine7]

A suppressed TSH can make you feel unwell, in my experience, although it's not supposed to. Hopefully when your body adjusts to the dose you will feel alright. I think that possibly if vitamin levels are low you might feel the impact more.

The fact you're having problems with hair growth suggests you need vitamin levels testing. Low ferritin or low iron levels can contribute to the problem. Do you have any other coexisting conditions that you know of and were your TPO antibodies raised before thyroidectomy?

Raised TPO is related to autoimmune thyroid disease.

The reason it's worth knowing whether you had autoimmune thyroid disease in addition to cancer is that autoimmune diseases can coexist.

First thing to do, get copies of blood tests, post them here, people will help you understand them. Then people will suggest what other things you could ask your GP to test. Once you get a clearer picture you can investigate remaining symptoms and exclude any other coexisting condition or deficiency.

[Greekchick]

Hi Sabriine,

I’m so sorry you are having such a rough time. A TT alone is rough , much less cancer.

Do you have your recent thyroid blood work available that you can post? TSH, T4, T3 and Tg as well as antibody tests for Hashimotos and Graves with ranges would be very helpful. You do not say if you had an autoimmune disease along with the cancer, as some of our members here do. Some of the symptoms and feelings you are experiencing suggest you may not be receiving enough of the replacement hormone levothyroxine. How much are you currently taking?

I will ask SeasideSusie or SlowDragon to post their very helpful list of tests to post here so the experts on this forum can weigh in to see how we can help you.

I’m sending you all good thoughts today and a huge hug. You will feel better soon - this is a long process and there is hope at the end of the tunnel. Hang in there. 🤗

[Fruitandnutcase]

You’ve had lots of good advice especially from Nanaedake, I’m not sure I can add much more other than my sister in law was around your age when she discovered a little lump on her throat. She had a new baby - that baby is now 46 - and was breast feeding and her doctor, thinking it was most likely to be a cyst, left her until she had finished feeding the baby before sending her off to have it checked out.

Needless to say it was malignant and she went through all of what you’ve probably been through.

She was studying maths with the OU and put her books into plastic bags and took them into hospital with her hospital. She finished her OU course, brought up two little girls then went to teacher training college and taught full time for many years until she retired.

She has always been incredibly active and sporty, she swims, mountain bikes, climbs and hill walks, goes camping and sailing. Obviously like you she felt dreadful at times but she came out the other side with a very good life.

It’s not surprising you feel tired, you've had a massive shock to your system, first of all discovering you had cancer, I can’t even begin to imagine what a shock that must have been for you, then the operation and treatment etc. That’s hard to deal with

I’m sorry about your friends - that sucks. Perhaps they just don’t know what to say - or maybe they don’t realise that cancer isn’t catching. Whatever their reasons it’s just not what you need is it.

Get your vitamins etc checked out and make sure they are all optimal. Make sure you are on the correct amount of thyroxine to keep you well. Try and get lots of rest and good food and most of all be kind to yourself.

((Big hugs))

[Nanaedake]

I sympathise with you on losing friends. My 'friends' couldn't cope either. I have to say I was very miserable for a long time. In the end I gave up on trying to keep my friends and felt better for letting go. I've slowly built a few new friendships and joined a yoga class where I don't have to interact with people if I don't feel up to it. It's very tiring trying to control and monitor your moods so it's important to rebuild your life in a different kind of way that allows you to be free from monitoring your emotions all the time.

On the upside, I now have a full active life and work full time. I find I have to manage my energy levels take daily exercise, be rigorous about a good diet, take regular supplements (not a multivitamin) of the items I need, ensure I stick to the levothyroxine that suits me and get enough rest and sleep.

You'll get there eventually and have a good life.

[Fruitandnutcase in reply to Nanaedake]

Very similar for me with Graves although in my case I got a bit intolerant and things that had niggled but that I had put up with quietly for years from one particular friend without saying anything suddenly irritated (Graves does that to you) the daylights our of me so I was the one who let go and drifted off, unfortunately I lost other people in my circle at the same time.

Like you I have gradually found some new hobbies and through them new friends.

[SilverAvocado]

Sabriine7, probably a lot of the reason you're feeling rubbish is being on the wrong dose of thyroid hormone. Once our thyroids are gone we're completely dependent on those little pills to run our whole body. Every cell and organ needs thyroid hormone to make energy, and when we don't have enough we're like an electronic toy running out of batteries.

Not just any dose of thyoid hormone will do, it needs to be tailored to us personally by retesting and adjusting every 6 weeks or so.

Nearly a year after my TT for thyroid cancer I was told by an oncologist that she reckons it takes a year or more to get well afterwards. Though it may feel like a long time, 4 months is a very short time in the recovery process, even if things go very smoothly it will take several months to get settled on thyroid hormone and feel better. Will you have any RAI scans to follow up, or have they finished the cancer treatment? I had two follow up scans after my RAI, and I didn't feel they really worried about my hormone dose until all that was finished, so I was kept quite ill the whole time.

I always advise people in your position that you are really inside the chaos portion of the illness. All you can do is hang on by your finger tips, do whatever it takes to feel a little better and keep your head above water and cope. Don't expect anything of yourself or try to fit in too much with the normal world. You may not be able to do things like work, socialise, stay up late, do chores or help others as you used to, or even get dressed and look presentable, etc, etc. Be very kind and gentle to yourself, rest as much as you can, ask help from friends and family as much as you can, and make sure others realise you're still very sick - this can be difficult, I also lost a lot of friends and family over my illness.

[Hidden]

After a TT for a benign multinodular goitre which was later fllled by RAI, I was home and going out shopping before the stitches were taken out. I felt great for a couple of months and then hypo symptoms appeared and started worsening gradually. My dose of levo was increased until it was obviously excessive, then reduced until too little. Never found a dose that seemed to fix my symptoms for more than a few days or weeks. If this is what you experience then you will probably find that a switch to NDT will give you at least stability in your health and at best (very best!) a complete cure.

The problem being that your chances of getting it off the NHS are very remote indeed. Recommend you read up about NDT on articles on the forum.

[Hidden]

When you say you still have cancer..is that by your thyroglobulin number?

[Hidden]

Hope your medication is helping. Coconut oil which has lauric acid may induce cancer cell death.A study in the Journal Cancer research at University of Adelaide can kill over 90 percent of cancer cells in two days of treatment. It can help your immune system with viruses and bacteria and contains vitamin E. thyroidnation.com gives 7 natural cures for thyroid nodules including coconut oil. I spread it on oatmeal biscuits and you should have about 2 tablespoons a day. Citrus fruits, bamboo shoots tea or banboo tea'plus food rich in iodine such as fish meat and milk and reducing sugar intake may help.

stopcancer.health/diet-and-...

Certain foods may affect the thyroid such as gluten which is in many grains semolina couscous to name a few.

Know how you feel as have had skin cancer and finding immune support is hard to find on NHS. K2 Vitamin is used for certain types of leukaemia and with vitamin d can help your bone marrow production of healthy blood cells. Supplements might be needed but it is available in high levels in parsley and kiwi fruit goose and beef liver late.

Take care.

[Hidden]

Can understand your reluctance to believe information concerning foods which may help some. The fact is that T cell therapy where certain rogue cells can be targeted has been known about for 20 years but with bio drugs and technology we cannot access them. Hope you feel better soon.