papillary cancer, hashimotos & myeloma (blood cancer)

Hi janef123

Sorry you’ve found yourself in need of the this forum, but I’m sure you will get a lot of help and advice from the many people on here. I know I have. You’ve certainly not had an easy time of it. 

I know you say that you have a feeling all these things are linked in some way and I must confess I wish doctors would look at us as a whole person sometimes, they’re so busy treating one thing at a time that I think they miss the bigger picture.

I was sent to endocrinology to investigate my goitre, she didn’t tell me I had autoimmune thyroiditis. It wasn’t until my first appointment with my surgeon that he dropped that bombshell. I believe mine is related to my Coeliac Disease, which is also probably also linked to my recent diagnosis of Osteoporosis. 

I’m sorry to hear about you’re mum and dad, you have had so much to deal with,I think if you can manage the counselling, I would try, just even for you to have the chance to talk to someone. 

Sorry I’m not of much more help, but I just wanted to reply.

Be kind to yourself and take care 

All the best

Hey there Jane, 

Welcome to the forum, though I'm sorry you need to be here.

You've certainly got a few things going on just now don't you! That's a lot of mind space taken up as well as emotional energy. I'd personally say that the counselling should be pretty high on the priority list, as if you're mentally strong then you can deal with everything else. You need to be able to think clearly and logically to work out what's best for yourself, how to proceed if given options in your treatments, and to advocate for yourself when and where needed.

You say that everything could be linked medically, is it that you've googled and found a genetic mutation that could account for everything? If so, have you asked your GP to refer you to a geneticist to get that checked out? That way you'll know exactly what you're dealing with moving forwards, and if one thing might trigger another. If they aren't linked, and it's just bad luck you've got both, then with the little I know about thyroids and thyroid cancer, I can't see how it might trigger anything in the bone marrow. (Other than if you needed RAI) 

If an Endo ruled out hashimotos, who then said you did have it and how was that diagnosed? I guess I'm just wondering how you know which diagnosis is correct since you've had both a positive and a negative. 

Right now you've still got half of your thyroid, so this means there isn't a TSH level to aim for. You just need to be in the normal range, as you aren't going to be suppressed. So your GP should be able to manage that for you.

As for the boundary between ENT and Endocrinology, it's both huge and blurred in places. Endocrinology deals with your Endocrine systems which is composed up of: The pituitary gland, the hypothalamus, the thyroid, the thymus, the adrenal glands, the ovaries, the testicle, the pancreas, the kidneys, and I think a few other things. So they are body wide and are all glands, organs, etc that release hormones and such into the blood. ENT are ear, nose, and throat area only. So that's how they are very separate from one another. But where it becomes blurred is that the thyroid crosses into both departments. So you do get some ENT doctors who dabble into the endocrinology side of the thyroid, but I don't think there are any, or many, Endocrinologists who also do surgery.

So more often than not, ENT deal with the structure, lumps, and removing bits of the thyroid. Then Endocrinologists, or oncologists, deal with the managing of the thyroxine and levels once the whole thyroid is removed. If only half is removed, there's no medication to deal with or levels to manage beyond what a GP is used to dealing with. But when it comes to who deals with managing folks after diagnosis, it does vary from hospital to hospital and lump to lump. So it sounds like you don't need any intense followup regarding the cancer, so your GP will be fine. 

So to summarise.... 

Counselling is def a top priority. 

Ask your GP for a genetics referral.

If you've not had one yet, since 8 weeks after your hemi, ask your GP for a TFT - thyroid function test - to check where your levels are currently sitting at.

Hope that helps! 

Lass

Xx

Thank you for your replies. Thank you for taking so much time Lass.

The endocrinologist told me that he was certain I don't have Hashimotos without running any tests. ENT have now said it was found in the biopsy done after my hemithyroidectomy.

My concern about my myeloma and thyroid problems being related is because myeloma affects the immune system, in my case my rogue cells are IgG immunoglobulins.  I am in an unusual subgroup of myeloma patients, 80% have bone problems on diagnosis, and most others have frequent infections, neither apply to me, but my kidneys have been damaged and I'm anaemic. Rarely myeloma does present with autoimmune issues, including Hashimotos and Hashimotos can lead to hypothyroidism, which I've now got, and thyroid cancer, which I've had.....If these things are connected it may benefit me to go on an autoimmune calming diet. Such a diet will impact on my lifestyle as it is pretty restrictive so I want to explore whether it really is likely to be useful before telling my husband that I'm entering into yet another crackpot dietary regime!   I've had a basically healthy low sugar, gluten free, high fermented food diet since diagnosis, but I'd like an answer as to whether I need to do more. . I've been referred for genetic counseling by my oncologist I believe.

I know that the risks of my thyroid cancer returning are tiny but if it was triggered by Hashimotos, triggered by myeloma, I need to know and have it acknowledged so that if I have a recurrence of the thyroid problems I had last year when my myeloma inevitably returns, I need to be taken seriously, not to be told it's a psychological response or insignificant as happened this time.   I had to fight for every test, and argue for every procedure to do with the thyroid. No-one believed me.  This is so stressful, and stress in itself can make symptoms worse.

Jane

Heya Jane, 

Well, one thing I forgot to mention is that you should be given an ultrasound of your remaining half of your thyroid each year to check for recurrence. Thyroid cancer is one that likes to pop up again sometimes, so everyone is monitored for life after a diagnosis. Those of us who have had a total thyroidectomy are monitored via yearly blood tests, those who have only had half out should have yearly ultrasounds. I'm afraid you may need to fight for these each year, as they often forget and you slip through the cracks.

And yes, I'm afraid when it comes to thyroids there's a lot of waiting and a lot of fighting to get tests and to be believed. Nothing moves quickly in the world of thyroids and a lot of symptoms can be brushed aside and ignored. Especially if you have other medical issues that are more pressing or more exciting for a doctor to concentrate on. 

One thing to consider is that often Hashimotos symptoms etc will improve if your entire thyroid is removed. Do you know if there were any nodules at all on the other half? You could ask, if it was something you were interested in, what the benefits would be to removing your remaining half in regards to the Hashimotos. In regards to the thyroid cancer, it would def confirm there wasn't, or was, anymore areas of cancer. It might help you physically and mentally if it was removed, and as you're hypothyroid and so needing thyroxine anyway, it's not going to cost the NHS more in the long run or make you have to go onto tablets. So as I say, just something to have a think on.

How long ago do you think your oncologist referred you to genetics? Might be worth calling the genetics appointments line, your hospital switchboard should be able to put you through to them, to ask if they've received a referral and if you're in the appointment queue. If not, either chase the oncologist or ask the GP to refer you. 

As for fermented foods, love em! Lol. No harm in eating lots of them. Kefir smoothie in the morning, fermented tea leaves in my salads, kombucha to drink, gherkins and kimchi here and there. Lol

Lass

Xx