advise on thyroid cancer

[Cade83]

Hi everyone,

I’m just asking people that have had thyroid cancer, did symptoms come and go? I’m actually really worried. For about 3-4 years I’ve had random symptoms of, feeling like a have a lump in my throat when I swallow, sometimes feel like I find it harder to breath although I always put that down to bloating, sometimes a hoarse voice but I put this down to thyroid or just testosterone related to transition. I’d only get it for o can’t really remember at a guess a few weeks to a few months maybe and then it would all go. This came back sort of every year weirdly I think summer time. The last month though, I started getting serious lack of appetite, losing weight, stomach bloating, pains in various places in my stomach and the last 3-4 days have the lump in my throat feeling, feeling like I have mucus stuck in my throat, also sore and feeling tight in my neck as well, I get a lot of neck pain at the back but always put the down to degeneration but I had a cervical neck scan and only bones spurs were found on c5-c6. I’ve also had some weird symptom of shivering for no reason like I have a severe cold intolerance and this has been happening a lot the last month, but also weird twitching in my head and chest. I’ve also been getting pain in my upper back and chest and now worried if I have got thyroid cancer has it spread to my lungs but I have no cough. I do worry maybe it’s spread to my bowel somehow with the severe bloating after I eat and random pains in different parts of my bowel. Does any of this sound familiar to anyone that’s had thyroid cancer or is my health anxiety just doing a huge number on me?

TIA

[greygoose]

Are you saying that you've been diagnosed with cancer? Or are you just worried that you might have it?

Sounds more like under-medication, to me, causing low stomach acid and all the problems that go with it. What were your last blood test results like? According to your last post, you're only on a tiny dose of levo.

[Cade83 in reply to greygoose]

I’m worried I have cancer.

My last bloods were on 24th May

TSH 1.46 mIU/L

FT4/FT3 weren’t done due to not enough blood which is unhelpful

T4 132 nmol/L

TPOAB 104.4 kIU/L

TgAB 338.3 kIU/L

Although 21st March my TSH was 0.92 miu/L but this was likely taken later in the day as it was done my my gp.

My current dose is 87.5mcg.

[greygoose in reply to Cade83]

Well, you really can't tell much from the TSH alone. And the T4 is not much help, either. It's the FT4/3 that will tell you if you're under or over-medicated. But, you're only on a tiny dose, still, so pretty certain that most - if not all - of the symptoms you're experiencing are due to under-medication. When did you last have an increase in dose?

[Cade83]

Yeah I know it’s pretty useless without those results. Maybe I’ll get them done again to check.

I’ve been on 87.5mcg only the last 16 months.

[SlowDragon Administrator in reply to Cade83]

You were getting TSH, Ft4 and Ft3 tested via Thriva

Was that this test

Are you retesting.

Request increase in dose levothyroxine to 100mcg daily

Anxiety is extremely common hypothyroid symptom

request ultrasound scan of thyroid to put your mind at rest

[Cade83 in reply to SlowDragon]

Yes I was getting tested through Thriva have requested to get thyroid advanced profile done again so hopefully it gets sent out today but probably won’t get in until Saturday or Monday. So won’t find out until next week.

I have doctors tomorrow so I’ll request an ultrasound maybe also get a fecal test for blood as well.

I’ve just woke up and feel like I have a heavy chest and can’t quite get full breaths in but I guess it could be anxiety. My stomach is bloated as well I think so that probably don’t help but still have a tight lump feeling in my throat/neck.

[SlowDragon Administrator in reply to Cade83]

Lump in neck sensation very common with Hashimoto’s when not on high enough dose levothyroxine

Gut issues - bloating and acid reflux due to low stomach acid caused by not being on high enough dose levothyroxine

Tight chest often low iron/ferritin

Approx how much do you weigh in kilo

87.5mcg is low dose levothyroxine

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here 

cks.nice.org.uk/topics/hypo...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Remember to stop taking vitamin B complex 5-7 days before test

Instead taking separate folate and B12 to maintain levels during that week

[greygoose in reply to Cade83]

Well, your TSH is quite high for someone on thyroid hormone replacement, so I'm willing to bet you do need an increase in dose. Why is your dose so low?

[Cade83 in reply to greygoose]

Well my TSH was only 0.92 in March although it was probably done at the wrong time but I always thought below 2 was ok. I don’t know why I’m only on 87.5mcg and that was upping it myself. Otherwise I’d still be on 75mcg.

[greygoose in reply to Cade83]

Sounds like your doctor is not very knowledgeable about thyroid.

Below 2 is ok for someone with no thyroid problems (euthyroid) although it's more likely to be around 1. But hypos usually need it lower than that because they need more thyroid hormone than euthyroid people.

[Cade83 in reply to greygoose]

These days you’d be lucky to see the same dr twice. I will see how these tests go and if everything turns out fine I will probably try 100mcg to see where things go from there.

[greygoose in reply to Cade83]

I think that's a very good idea.

[Buddy195 Administrator]

Hi Cade83,

I would ask for a scan of your thyroid if your symptoms persist, just to put your mind at rest.

I know heightened anxiety is an ongoing symptom for you. My anxiety symptoms reduced significantly when thyroid medication & key vitamins became optimal. Starting HRT has also helped ease a more recent anxiety flare.

As a trans man, do you monitor your testosterone levels? I’m wondering if these may need adjusting to help ease your anxiety symptoms.

In the past, I’ve had CBT to help with ‘health anxiety’ flares and seeing a psychotherapist did help me find ways to alleviate symptoms (eg mindfulness, journaling, positive affirmations etc). Worrying about your heath can cause physical & mental anguish (I’ve been there!), so I’d definitely consider seeking support to see if this helps you too.

Sending you very best wishes 🦋

[Cade83 in reply to Buddy195]

Hi Buddy195,

Yeah I’ll ask tomorrow to put my mind at rest.

Yeah anxiety is a problem for me but it wasn’t until I had surgery last year that things started going downhill again and pretty gutted really. I really had a handle on it and was doing so well but these symptoms have really scared me.

I do have my testosterone monitored and they have just recently changed it which I need to question as instead of increasing the interval they want me to split the vial from 4ml to 3ml and it does say on the nebido information that it should never be split. As my trough testosterone levels was going up to 26.

I’ve had cbt for health anxiety before and normally I’m pretty good at rationalising stuff but at the moment this is kicking my butt.

Thanks for the support 🙂

[Ruby1]

I just wanted to mention that I get hay fever, and during that season, I can get odd things happen with my throat. I know this will sound ridiculous, but I don't eat baked beans during hay fever season as they can cause an issue with my throat and swallowing - I think they cause blood blisters in my throat. They're not a problem the rest of the time.

Lack of appetite and losing weight - I'd be tempted to visit my GP unless you think the anxiety is causing it?

It does sound like a small dose of levo that you're on. I'm around 52Kg and on more - 100 micrograms.

Good luck getting it all sorted and try not to worry as that won't help.

[Cade83 in reply to Ruby1]

I have always wondered if I have some kind of hayfever but I don’t get itching eyes, or running nose. I do seem to get weird throat symptoms though, sometimes I know some chocolate products can almost make me feel like I get an allergic reaction and I have a weird throat after and sometimes drinking some fizzy drinks can do the same but I hardly ever drink fizzy stuff. Interesting about the baked beans though.

I’ve mentioned about loss of appetite and weight loss and the gp was like well your going to lose weight if you have loss of appetite 🤷🏻‍♂️ yeah thanks but why have I had lack of appetite for over a month 🙄I mean it quite possibly could be stress related but the bloating I get after eating is crazy and I’m bloated before I start.

Wow ok that’s quite a bit considering you’re only 52kg. I’m 69kg so that’s interesting. Although my mum bless her is at a guess I’d say 80kg and she’s only just been out on 50mcg and I actually had to send her to a endocrinologist because her gp refused to increase even though she was getting symptoms.

Yeah worrying is definitely not helping but it’s not easy when you naturally worry a lot. Gone are the days I was in the Army and I’d just get on with it regardless.

[SlowDragon Administrator in reply to Cade83]

So at 69kilo you’re very likely not on high enough dose levothyroxine

69kg x 1.6mcg = 110mcg levothyroxine per day

Request increase to 100mcg daily

Which brand of levothyroxine are you taking

Do you always get same brand

Taking any other hormones well away from levothyroxine

[Cade83 in reply to SlowDragon]

It’s quite a possibility that I might not be on enough but I know last time I tried going on 100mcg my TSH went too low but that may of been about 4 years ago now. It would make sense though if I wasn’t on high enough dose that I’d get more bloating as I’m not as regular as I was but then my appetite has been rubbish.

My ferritin levels are normal range at 109 ug/L although my folate did drop last year from July it was 41 to September it was 17 however I did stop folate for a week before I had surgery at the beginning of September and the test was done 22nd September so it should have been back up by then I would have thought. Again Thriva didn’t do the test because there wasn’t enough blood. I’m getting fed up with them cause they keep doing that and I always make sure I fill to the lines or sometimes over.

I always get wockhardt brand and never change it to a different one ever.

My testosterone is every 13 weeks so it’s never really given the same time as its injection.

[SlowDragon Administrator in reply to Cade83]

 I tried going on 100mcg my TSH went too low

How low and what were Ft4 and Ft3

Do you have results from when on 100mcg previously?

The most important results are always Ft3 followed by Ft4 ….plus symptoms

Frequently when adequately treated TSH will drop very low or suppressed

All four vitamins need to be optimal

ALWAYS test thyroid levels early morning for highest TSH

Last dose levothyroxine 24 hours before test for lowest Ft4

[Cade83 in reply to SlowDragon]

Results from Thriva in November 2020 were

TSH 0.34 mIU/L range 0.27-4.3

FT4 16.6 pmol/L range 12-22

FT3 4.47 pmol/L range 3.1-6.8

But looking at my results from Thriva my results have been very up and down in all doses. I’ve always tried to keep all my vitamins in optimal ranges.

vitamin D 94 nmol/L range 50-250

B12 149 pmol/L range 37.5-188

Ferritin 109 ug/L range 30-150

Folate wasn’t done but my last one was 17 nmol/L range 8.83-45 but this is normally higher not sure if that’s changed as they kept not doing it because of not enough blood 🙄

I must have been told to drop between these tests

[SlowDragon Administrator in reply to Cade83]

FT4: 16.6 pmol/l (Range 12 - 22)

Ft4 only 46.00% through range

FT3: 4.47 pmol/l (Range 3.1 - 6.8)

Ft3 only 37.03% through range

helpful calculator for working out percentage through range

thyroid.dopiaza.org/

Most people when adequately treated will have Ft3 at least 50-60% through range and often Ft4 a little higher at 60-70% through range

[Cade83 in reply to SlowDragon]

So it doesn’t really matter about what happens to your TSH it’s more to do with FT3 and FT4?

[SlowDragon Administrator in reply to Cade83]

Correct

Unfortunately many medics don’t realise this and are incorrectly TSH obsessed

TSH not even below range in that test

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

NHS England Liothyronine guidelines July 2019

 

sps.nhs.uk/wp-content/uploa...

Page 9 

Test for Deficiency of any of the following: Vitamin B12, Folate,  Vitamin D, Iron

See page 13 

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

LEVO DOSE SHOULD NOT BE DETERMINED BY TSH

Diogenes/Toft paper:

bmcendocrdisord.biomedcentr...

healthunlocked.com/thyroidu...

The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:

Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis

February 2020 Journal of Clinical and Translational Endocrinology 19:100219

DOI: 10.1016/j.jcte.2020.100219

LicenseCC BY-NC-ND 4.0

Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich

LlINK TO PAPER: 

ncbi.nlm.nih.gov/pubmed/320...

sciencedirect.com/science/a...

T4 therapy

ncbi.nlm.nih.gov/labs/pmc/a...

In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.

[Ruby1 in reply to Cade83]

sorry for late reply, but I can see you’ve had lots of responses. Yes it sounds like your dose is on the low side. My TSH is always low and occasionally out of range (low), but they never change my dose and I’m quite happy with that.

[Brightness14]

I had my thyroid removed in 2015. My first symptom was the year before when I was walking up hill and suddenly couldn't breathe. The lump had moved and had shifted my trachea. My thyroid was scanned and I was booked in for the operation. My thyroid was still working perfectly. When the 4cm lump was removed and then tested it was found to have the smallest amount of cancer. I have been on thyroid medication ever since. I never had any cause before the walk and the Professor surgeon told me that the lump had been growing maybe for about 20 years.

[Brightness14]

I thought that your post asked for anyone that had thyroid cancer. I must have read it wrong, please disregard my answer, sorry.

[Cade83 in reply to Brightness14]

No you read it right, I was cause I wanted to know what others experienced when they had thyroid cancer. That’s crazy though that you didn’t even know and how scary that must have been for you. I’m glad it was found and removed. I’m surprised you never had any symptoms either.

[Brightness14 in reply to Cade83]

No symptoms as my thyroid was working perfectly. I don't have Hashimotos or gut problems either. Most people on here do. I was never scared either. I now have an Ear Tumour but still not worried. My mother lived to be 99 years old but had Colon cancer and breast cancer too. These were in her 70's. Mine happened when I was 69, so to old to worry.

[Cade83 in reply to Brightness14]

I really wish I had your mind set. I keep getting upset I’m that worried. I guess more so because I’ve literally just found my soul mate and my life is really turning around so I’m like 🤷🏻‍♂️ just as things start going right other things start going wrong. Hopefully it’s nothing and it is just a case I need to up my dose but I won’t be happy until I’ve had an ultrasound.

[Brightness14 in reply to Cade83]

The only time I have been upset was when I was 10 years old and told, not only that I was adopted but that I was purchased too. Nothing since has come close to it.

[Cade83 in reply to Brightness14]

Wow that must have been a huge shock and what an awful thing to say that you were purchased. I could imagine that must have had quite an impact.

[Brightness14 in reply to Cade83]

Yes it has in many different ways too.

[Didntexpectthis]

I had thyroid cancer I had no symptoms other than a small lump in my neck which I went to my gp about after 6 months. There are 4 different types but the most common types are slow growing.

You cannot tell from blood tests you need an ultra sound, I then had a fna to determine which type. Mine had spread to the lymph nodes in my neck.

I had a full thyroidectomy and neck dissection last year and have recovered well, as I had undiagnosed thyroiditis I could have the radio active iodine treatment ( that is generally a belt and braces).

You really need to speak to your GP.

Thyroid cancer can spread or reoccur and breast is the most common place but you cannot self diagnose an ultrasound will determine the likelihood.

Good luck.

[Cade83]

I do understand being under medicated can cause symptoms but my TSH is 1.46 which is still quite low. With my symptoms I’d expect it to be like 3. Or does it not always work like that I guess everyone is different.

[Brightness14]

I doesn't always work that way either. You should have a full thyroid plus vitamin and minerals test and report back on here for answers. You should post the ranges for people to be able to help you. In the meantime please try not to worry, thyroid problems are very odd.

For instance I took NDT thyroid s for over seven years in two doses. After lunch I always walked the dogs, anyway I started to have pains in my left ankle. This was before my second dose was due. I realised that my brain was out of kilter and because my low T3 my old ankle injury hurt. Very weird as my ankle was broken back in 1977 and had never hurt since.

[Cade83 in reply to Brightness14]

Yeah I’ve got another test kit coming to check what didn’t couple weeks ago. Yeah I normally post ranges but I was being lazy and desperate for answers.

That’s well bizarre. I’ll try not to worry but it’s extremely hard not too.

[Hsaw]

I had thyroid cancer, which must have gone undetected for months/years as it had time to spread to 51 of my lymph nodes. I had none of the symptoms you have described. In fact I had no symptoms at all really, apart from maybe a slightly hoarse voice occasionally but that may only be hindsight. As others have said get yourself an ultrasound scan for piece of mind.

[Didntexpectthis]

I should say they knew immediately from the ultrasound we me. For me mine felt like my lymph mode was enlarged like when you are unwell but it didn’t go down. I also had a CT scan once diagnosed following the fna and identification of the cancer, this was to check if it had spread to my lungs and chest. It hadn’t but I was allergic to the dye they use.

good luck

[Batty1]

Cade83 sorry you sound like your going through alot…. Everyone (me) who has had thyroid cancer probably experienced it very different some people have no symptoms and some people have symptoms but had no idea they had thyroid cancer (me) you should see Endocrinologist and explain your issues and see what he/she says and maybe have some thyroid labs done if you haven’t already.

Is it possible that one of your trans medications could be causing your issues with bloating and weight loss? Maybe extensive research of your medications might be in order.

[Cade83 in reply to Batty1]

It’s hard to get anyone to do anything. If I could I’d pay for an ultrasound of my thyroid but everywhere is miles away or you need a referral from your gp to see an endocrinologist unless you’re in London. It’s so frustrating, it’s crazy that you can’t get any test done anywhere if you pay for it. I have gp tomorrow and even if he does send me for a scan I’ll probably be waiting a couple weeks which means feeling like this for a couple weeks. My throat feels constantly dry and feels tight and I wasn’t too bad earlier but I feel like I can’t breath properly again. It’s driving me insane. I was tempted to go a&e but I don’t think they would do anything and waiting 9 hours to find that out just seems stupid.

[Batty1 in reply to Cade83]

I added to my post above are you taking any anxiety medication?

[Cade83 in reply to Batty1]

I was taking sertraline up until last July and decided to come off them as I was doing so well but also it was causing ectopic heart beats.

It’s possible testosterone could be causing a rift as it has been a bit high. However it’s not likely to cause these symptoms I don’t think.

[Batty1 in reply to Cade83]

Anxiety medication can mess with thyroid levels (had this happen to me) … I hope you can find a solution for your issues but don’t worry about thyroid cancer (right now) until you know for sure and even if you have it you will be fine … I have been walking around 2 years with thyroid cancer recurrences on both side of my neck … doctors don’t make fast moves when it comes to TC at least in my experience and I don’t fret over it.

[Cade83 in reply to Batty1]

I’m worried I have it and it’s been going on for years but I’m also worried now that I have bowel cancer because I’ve had recurring symptoms to do with bloating and obviously the lack of appetite and and weight loss but also pain I keep getting on the lower right side a lot of the time at the moment but I don’t think it’s appendix. I’m sure I’ve had the pain before but it would kinda go but this time it’s really not and with the symptoms it’s kind of scary. I know I’m my worst enemy coming to all these conclusions but when you think about these symptoms and they’ve been on and off for a few years you start to think hang on is something else going on here but I’ve never had the lack of appetite and weight loss before which is what’s freaking me out.

[Batty1 in reply to Cade83]

You should go see gastroenterologist for your bowel troubles and take care of this first…