New here. Other thyroid cancer people? - Thyroid UK

Thyroid UK
108,083 members125,423 posts

New here. Other thyroid cancer people?

Lulla
Lulla

Hi - just joined this group and looking forward to learning.

I was diagnosed with thyroid cancer in 2013.

I see there is another group specifically for Thyroid under Health Unlocked, which I have also joined, but it does not seem to be active.

Just wondered whether everyone is on here together.

thank you

24 Replies
oldestnewest
Lulla
Lulla
in reply to Lora7again

Hi - thank you for the link - I’ll check it out :-)

The Facebook group Thyroid Cancer Sisters is good. American, but they are far more advanced in America than we are re thyroid cancer. But yes, we are on here too, so hello! For me, I just see my current issues as being the same as a Graves person after a TT.

Lulla
Lulla
in reply to JaneyJaney

Thank you very much. And hello to you too. Yes I’m on thyroid cancer sisters. Very useful. I have recently moved back to the Uk so my care will change quite a bit under the NHS. I have lots of questions that I’m about to bore everyone with.

Another group I joined a long time ago is thyroid cancer on INSPIRE. They have a thyroid group too if anyone on here wants to check it out.

Interesting to hear about the graves aspect. I’ll try to find out more about that. Anything to help me work out how to feel better is welcome. :-)

JaneyJaney
JaneyJaney
in reply to Lulla

Hey, well I just meant re Graves people, that I don’t have a thyroid and neither do they, so we have a lot of similar issues. Apart from we need a suppressed TSH, although it seems many people without a thyroid feel better suppressed. Don’t expect great care from NHS. The issue with a rare cancer in the U.K. is there is little care or knowledge. I read world’s ninth most diagnosed cancer and only 18the in U.K. I asked my thyroid oncologist about my DI02 gene test, she’d never heard of the gene and says no one needs T3!!

shaws
shawsAdministrator
in reply to JaneyJaney

Well, you're oncologist is very wrong but they will not prescribe T3 any more in the UK unless an Endocrinologist does but the majority wont. Neither will they prescribe NDT (natural dessicated thyroid hormones) the very original used since 1892 and without blood tests but, very unfortunately, in order to get it withdrawn (it helped many due to it being made from animals' thyroid glands) they made False Statements:--

drlowe.com/thyroidscience/C...

The scientist/researcher who wrote the above link and who was also one of TUK's Advisers wrote to them re the abovebut despite two yearly reminders, he died but did not get any response.

I have my thyroid gland. I have taken levothyroxine (far more unwell than with a TSH which was 100 - diagnosed myself). I have also tried NDT but found that T3 suited my body best but now source my own.

JaneyJaney
JaneyJaney
in reply to shaws

Hi, funny thing is, I probably feel worse on T3. I sometimes wonder if some people that feel worse post TT on Levo, need a dose adjustment and time to get used to not having a thyroid. Totally agree some people need T3 though. T3 has made me put on weight and I have a low pulse. Weird. Cam think better but now very tired on T3.

I’m not sure why, but some NHS hospitals will give T3 to thyroid cancer patients, but not Graves people post TT. Not sure why this is? Maybe as we need a suppressed TSH? Seems wrong to me.

Lulla
Lulla
in reply to JaneyJaney

I believe that one scenario is if people cannot convertT4 to T3. That's when they can benefit from taking T3 alongside T4 but of course the exact doses have to be found by trial and error. Mind you, that goes for levo too.

I still have not got my head around the various levels of labs that can make us feel better of worse. And even learning all about that is not much use if doctors don't test FT3/FT4 and even Reverse T3/4

Being all different we also need to go through our own trial and error, if we are lucky to find and endo or doctor who is interested in how we feel.

shaws
shawsAdministrator
in reply to JaneyJaney

I believe some people (as things are never explained to us by the medical professionals) think that 20mcg (or 25mcg) of T4 has the same effect of 25mcg of T3, but they may be unaware that T4 = is inactive and has to convert to T3 and 25mcg of T3 is equal (approx) to 100mcg of levothyroxine..

T3 , being the Active Hormone is required in our millions of T3 receptor cells has to enter all of our T3 receptor cells - brain/heart need the most:-

That's why increases are very gradual when adding either T4 or taking T3 alone.

JaneyJaney
JaneyJaney
in reply to shaws

Hi, I think of you are non converter, it’s a finger in the air job as to how much T4 equates to T3. We can’t really say it’s four times the strength, if you were taken 20mcg T4 and not converting, then 5mcg T3 would be more. We are all so different. That’s the thyroid nightmare I think.

shaws
shawsAdministrator
in reply to JaneyJaney

Of course we cannot be precise as we are all different and our bodies aren't completely identical but we can only state the 'average'.

When we were treated without blood tests the emphasise was all upon relief of clinical symptoms. Doctors were aware of all of them and treated 'symptoms' rather than numbers onblood tests which vary throughout the day by increasing slowly NDT.

Gcart
Gcart
in reply to shaws

I was an inpatient just recently and asked the pharmacist who came round each day if they used / knew about T3

She denied it somewhat , but then disclosed that they did in certain cases (not explained which cases)

Apparently the hospital has to apply for ‘special funding’ to prescribe!

shaws
shawsAdministrator
in reply to Gcart

The 'funding' is due to the sky high prices charged to the NHS by the pharma companies. ( perfect excuse).

We used to get it prescribed and it was very much cheaper. NDT was also prescribed but withdrawn. The latter was due to False Statements being made about NDT by the professional association despite its proven success since 1892 and saved lives - no blood tests but patients' symptoms alone.

Before that hypo patients died.

I believe that thousands of people on levothyroxine remain unwell or have unpleasant symptoms and some might have had to give up work - if they were able to carry on.

They also may not have connection to the internet to ask questions etc.

We often get phrases like 'brain fatigue' etc where it is difficult to judge what you're supposed to do next.

I often wonder if these guidelines are made by people who have absolutely no personal knowledge of symptomatic hypothyroidism - after all, we - the patients - are not mechanical machines that need some oil 'here or there'. We definitely need T3 in our millions of T3 receptor cells (either converted from levo or by liothyronine or NDT).

I would like to know the cost of 'additional prescriptions' given to try to ease remaining symptoms and of consultations that may not be necessary if we're on hormones that enable us to recover our health.

Lulla
Lulla
in reply to JaneyJaney

yes it's easy to forget that thyroid cancer is classed as one of the less well known ones. However I had heard it was the fastest growing. It's probably just being diagnosed more often.

Being without a thyroid at all, whether due to cancer or graves or any other condition that requires thyrodectomy or ablation makes things more complicated I understand (like we don't necessarily feel hyper if we take a lot of T4? not sure) and of course with thyroid cancer as you say we need to keep TSH suppressed for a number of years. I'm 7 years in and I think it's after 10 years for me, that I will look at reducing the amount of suppression - maybe less if things continue to be ok.

Anyway that's me started my new UK levothyroxine and the chemist has given me tablets of different brands (with slightly different ingredients). Not sure how I'm supposed to work out which is which if any of them don't agree with me.

JaneyJaney
JaneyJaney
in reply to Lulla

Yeah pharmacists don’t get it or care when it comes to brands sadly. I do wonder about thyroid cancer and mobile phones, it’s the cancer most linked to childhood exposure to radiation. Young girls with mobile phones is not good. Someone mention Chernobyl for mine. I definitely think chemicals and plastics is an issue. I thought the plastics thing was left field until there was a proper news story recently saying don’t use plastic cooking utensils over a certain temperature and the chemical disrupt hormones. I’m not sure about more diagnosis on scans, I had an MRI and the growths never even recorded as incidentals! Apparently because they never grow into cancer, but I’m the living proof that isn’t true!

Gcart
Gcart
in reply to JaneyJaney

Hi JJ. Are you saying there was a finding on MRI that wasn’t acting on only to actually be cancer of the thyroid ?

JaneyJaney
JaneyJaney
in reply to Gcart

I asked to have an old MRI looked at again and it showed several growths on my thyroid. I also had hashis it transpired, but they were never written on the report as an incidental despite symptoms. I was never offered a follow up. As it’s a slow growing cancer, I suspect there were cancer cells. When I found a lump myself it was in lymph nodes.

Gcart
Gcart
in reply to JaneyJaney

So u didn’t know you had Hashi ?

How would that show after TT?

SlowDragon
SlowDragonAdministrator

Welcome to the forum

You will see this is an extremely active forum with over 105,000 members

First step is to get FULL thyroid and vitamin testing

After total thyroidectomy on thyroid hormone replacement of any king, still likely to have low vitamin levels

Difficult/impossible to get GP to test Ft3

Presumably your endocrinologist wants TSH kept low ?

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common,

Ask GP to test vitamin levels - ALWAYS get actual results and ranges

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Lulla
Lulla
in reply to SlowDragon

Sorry just seen. Thank you so much for all the information. Especially for the links for private testing. I think I will definitely definitely need this. Thanks again!!

It's very sad that T3 can be difficult to get prescribed as I'm sure it can help the people who don't do well on T4 alone. At my first appointment in the UK my consultant told me there had been a petition by patients to have T3 prescribed but it was turned down. And that was that.

Of course T3 does not suit everybody, as possibly is the case with NDT, for various reasons and for lots of excuses.

The problem in my view is that doctors just don't have the time, and sometime the experience to follow a patient and adjust meds over time until an idea dose is found.

I would love to try NDT

Lora7again
Lora7again
in reply to Lulla

If you can afford it why don't you order some from abroad? I purchased Thyroid S from Thailand about 2 years ago because my GP refused to give me Levothyroxine because my TSH was in range even though my T4 and T3 were low.

Lulla
Lulla
in reply to Lora7again

Thank you, it’s an idea. I have bought t4 over the counter from overseas for 5 years so I could stay with the same brand. As of today I have switched to NHS levo and will look out for any changes.

Until now, being in the care of a top medical centre I did not feel like deviating from the guidelines. But now that I’m back in the Uk and only getting annual bloodwork as ongoing checks ( a big difference from before) I could pursue different options

Thanks

JaneyJaney
JaneyJaney
in reply to Lulla

Yeah, I’m not sure T3 is for me at all. I blame this on a lack of patient care. Not spending proper time with me when I was on T4, or helping me with T3 dosing sufficiently.

You may also like...