Thyroid cancer

A place for people affected by thyroid cancer to support one another, ask questions, and share their experiences.

New results, looks like it's going in the right direction?

Lass
Posted by

Hey Guy,

Could you also please share your routine for taking them, as well as what and when food and drink happens?

Also, I have a baking thread over in the chat forum. Feel free to pop in and ask for cooking tips or recipes if you like.

Ta.

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Lynchmill
Posted by

Sure

calcichew - like sweets all day - usually one very first thing before coffee even

ranitedene - last thing at night (lets call it PM)

alphacalcidol - around breakfast / post coffee, depends on how rushed I am (AM)

levo' - PM

Pregabalin AM and PM

Propranalol AM and PM

Buscopan AM and PM

multivitamin AM

5HTTP AM

Vit B12 AM

Magnesium AM and PM currently (187mg each) running out of those and will have 1 x 350mg AM

last blood test TSH 0.45 Tg 3.7

Theres also a large element of cantbearsed in the cooking - when its just one, and im rubbish at it, why bother? Its XYZ chips peas/beans/broccoli for me. Tried making pies/stews etc, always bland or too much something. Ill stick to chopping thanks.

barbaral
Posted by

Interesting stuff Guy

First things first - you NEED to start tracking the FT4 - this is the thing that's making your heart race and causing you to need the beta blockers. I would guess you're probably up over 30. This really is important to fix with some urgency.

My old hairdresser wrecked his heart by taking illegally sourced thyroxine (above and beyond what his doc prescribed. He incorrectly thought it would keep him young and virile and give him the energy to keep up with the much younger women he was chasing. His FT4 topped 50 and he collapsed. This is a very extreme example but that stuff's dangerous.

There are some really easy wins on your tablet taking though.

You must NOT take calcium chews or alpha calcidol within FOUR HOURS of taking your thyroxine.  Not knowing what's in your multivit, that should probably also be delayed. I'm going to take a guess that magnesium is also one best kept away from the thyroxine. Are you self medicating with all these vitamin tabs or has your doctor advised? Just because you're eating poorly doesn't mean you necessarily need any of this over the counter stuff. 

So first thing in the morning take your thyroxine with a glass of water. Don't eat, don't have hot drinks for at least 30 minutes. Don't take any other tablets. I see you're taking at night - can I ask why? It's REALLY hard to have an empty stomach when you take a night and if your stomach's not empty the tablets don't work as well.

If you GP is disinterested, please ask your pharmacy if they can do you a medication review. They should be able to help you on what to take when and in what combination.

I don't think a guy your age should be taking so many tablets especially when some of them are counteracting the side-effects of others. If you were an 80 year old, I could imagine that cocktail might have built up but at the moment you must be a slave to the tablet dispenser.

To take 250 mcg and still only be suppressed at 0.45 suggests things really aren't working on the thyroxine front and most likely that's because of all the other stuff you're chucking into the mix. 

If you like chopping, how about some stir-fries - you can buy the sauces in pouches, no effort at all. Even my husband can crank out a good stir-fry.

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

barbaral
Posted by

One more thing to watch out for. If you're taking prescribed calcium and topping it up with OTC calcium, it's pretty easy to overdo it.

I had a colleague in the USA who LOVED a brand of chewy calcium tablets and ate them like sweeties - right up to the point that she had to pass a kidney stone because she's over-done the calcium to such a degree that it was depositing in her kidneys. PAINFUL stuff.

So if the doc didn't tell you to take the chews, please don't over do it.

Apparently Elvis thought that if one of anything was good, then two or three was even better - whether that was amphetamines or fried peanut butter and jam sandwiches, it didn't stop him dying on the loo well before his time should have been up.

So seriously, if there's anything on your list that the doc didn't approve, 'step away from the tablets'. It's really easy to overdo the tablets that seem to be innocuous and that you think will be fine because 'they wouldn't sell them in Boots if they were dangerous, would they?'

Sing like Elvis. Gyrate like Elvis. Don't pop pills like him!

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

Lynchmill
Posted by

I'm well aware of the danger of over doing the calcium I only take prescribed calcium approximately to the amount that the endocrinologist suggested and don't take any over the counter extra

I take a calcium tablet when I start feeling tingles in my fingers or toes or nose! I've had my calcium level tested fairly regularly and it's always on the mid to low range of normal

The magnesium is taken over the counter. Taking the magnesium immediately increased my energy levels andand reduced my tiredness

I asked my endo whether I should take levothyroxine in the morning or evening as there is some evidence to say evening is better he agreed that taking evening was better 

Lynchmill
Posted by

Free T4 as requested

barbaral
Posted by

This is very odd. Your FT4 is nice and low. If I saw that in combination with your TSH at 0.45 I would be increasing your dose. If you're getting heart problems at this level of FT4, then I don't think the thyroxine is the problem. Something else in that mix is messing with you. I don't know anybody on Beta blockers with FT4 'in range' like yours.

You are a bit of an enigma. 

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

Lass
Posted by

So much so in fact, I'm going to tag to see if she can see from your meds if there's a problem, or maybe suggest something you could raise with your GP for investigation.

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Lynchmill
Posted by

So you're saying it's not the thyroxine directly that is causing the palpitations but normally would be the free T4?

barbaral
Posted by

There's a sort of chemical see-saw.

As the TSH goes down, the FT4 'normally' goes up.

Palpitations etc tend to be a problem when the FT4 goes high 20s or over 30. Your FT4 is well within range, so the palpitations are probably caused by something else.

T4 is thyroxine - FT4 is how much thyroxine is floating around in your blood not getting converted to T3. Too much makes the heart race and can cause bone thinning over an extended time.

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

Lass
Posted by

Heya,

Yes and no.

When thyroxine is absorbed into the body it shows in your bloods as T4. When you've had a TT after thyroid cancer, they normally want to inhibit and suppress your TSH, as this is what tells remaining thyroid cells - cancerous or not - to multiply. So they usually try to get your TSH down to 0.1. Getting the TSH to 0.1, usually pushes your T4 up to over 20 - which for some labs is the max they want it to get to.

For some people though, it takes a higher dose of thyroxine to get your TSH to that 0.1, which in turn pushes your T4 higher. Back in March, I ended up hitting over 28 with my T4, and I started getting palpitations. So my dose was reduced, but also because my TSH was <0.05.

Your T4 is currently sitting under 15, and your TSH isn't suppressed. So any weird heart things you have going on wouldn't appear to be thyroxine related because your T4 isn't high enough to create that effect.

However, the fact you're on 250mg a day, and only sitting at a T4 of under 15 also indicates you aren't absorbing the thyroxine correctly. Now, whether that is because you have food in your stomach when you take it, or the calcium is being taken too close to it, or one of the other things is sticking to it and stopping it from being absorbed - is not something I can say with certainty.

But as Barbara said before, I think it could be that it's a combination of the above, and it might be time to go back to the drawing board with how you take your medication, as well as what medication you take. 

But hopefully Geri will have more to say on that one!

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Geri - Macmillan
Posted by

@lynchmill

Hi Guy and thank you @lass for tagging me in this post.

I’m sorry to hear that you’re having a problem with some difficult symptoms. You say that you have buzzing in the ears that’s keeping you awake. I know from previous posts that you were having palpitations, but your beta blockers have helped that.

One thing I always say to people who have new, worsening, or changing symptoms is; it can only be down to one of 3 things.

  1. Due to their cancer
  2. As a result of past or current treatment
  3. Or something unrelated to the cancer, either physical or psychological.

As your cancer has been successfully treated, then it’s unlikely to be number1.

Number 2; The thyroid related treatment you are having at present is levothyroxine and calcium supplements. I can’t find anything to suggest that either of them would cause this symptom.

So, it’s possible that it could be something related to your other medicines, either a side effect or an interaction. Equally it could be something physically unrelated to your thyroid cancer.

I too had a look at your medicines, and like your GP I used a couple of our database interaction checkers. There are various drugs (particularly cancer drugs) that I know interact with others. However, when someone is taking a lot of medicines, the databases are always more reliable than your memory.

I would like to revisit some of Barbara’s comments about being on a fairly high dose of levothyroxine. She’s right that for some people on that level of drug we may expect to see their T4 a bit higher and their TSH levels a bit lower (although this isn’t the case with everyone).

Having palpitations with your T4 in the middle to low range would be quite unusual, although again not completely unheard of. It sounds as if your beta blocker has helped this. She’s right that there is always the possibility that you may not be absorbing all your levothyroxine. Various things can cause this, like taking it within 4 hours of any calcium supplement. Also, it needs to be taken on a completely empty stomach. So, if you eat later in the evening this can be a challenge.

One thing I did do some reading up on was the 5-HTP that you are taking. 5-HTP is a plant form of a particular group of antidepressants known as SSRIs. Some SSRIs (particularly sertraline) are thought to reduce the effectiveness (or absorption) of levothyroxine. It’s quite safe to take levothyroxine and antidepressants together. However, some people may need an increase in their levothyroxine to achieve desired thyroid blood levels. We don’t have enough evidence to be really certain about this, as we don’t see this with all SSRIs.

The other thing we are aware of is that adding low levels of thyroid hormones to antidepressant therapy can increase the effectiveness of the antidepressant. The one thing we don’t know enough about is the unregulated 5-HTP that you are taking. It may be affecting your thyroid blood levels, or your levothyroxine may be increasing its action in your body. There is no way of knowing this. It might be worth considering a trial of regular SSRI, and keeping a close eye on your bloods? It’s certainly worth discussing it with your doctor, and asking for their views on it.

 

To go back to your problem of the buzzing in your ears, almost as if you’d drunk too much coffee? I’m really at a loss as to what may be causing this. It could be something related to your medication, or something completely unrelated.

Apologies that my very long answer hasn’t answered your original question, but may have given you some other things to think about.

The other thing that I always think is worth considering is the emotional impact of having cancer . This can affect your mood, and result in anxiety and depression. Anxiety and depression can in turn cause many physical symptoms even years later, regardless of what type of cancer or treatment you’ve had. Adjusting to life after cancer can often be more difficult than dealing with the diagnosis and treatment. Having a read through some of the posts from the life after cancer group might give you an appreciation of the problems people face.

I hope this is helpful

Kind regards

Geri

Thyroid Cancer Information Nurse

Lynchmill
Posted by

Thanks for the reply - long winded or not - its appreciated ;-)

So - upon advice - I am now taking the thyroxine for the last couple of days at wake-up time - 4 to 5 o clock. Get up / coffee time is 6 or 7.  I eat early-ish in the evening, but often have a glass of plonk or a G&T late in the evening. Very rarely would I late night snack. The rest of my medication statys the same, PM and AM.

I shall drop the 5HTP if it has any effect at all on what Im trying to sort out.

I am pretty sure it was / is the thyroxine, as A) the symptoms got worse with my last increase in thyroxine and B) if I dont take the blocker at night (nothing to do with the G&T honest guv), I wake up at 2 or 3 AM sweating with my heart pounding like I have run a marathon. Take said pile o' pills and half an hour later, heart slows (exactly as the recognised time for these) and sleep is sort of possible.

The 'buzzing' is minor - I am assuming its all related - it might not be - the heart rate of 110+ certainly isnt psychosomatic. The tense chest / needing deep breaths / being out of breath very easily was bad enough to be sent to the lung clinic, who found nothing wrong.

My Tg last measurement was 4.9 IIRC - so im not completely clear yet. for the record.

Emotional impact? Sure - and my divorce too :-(

ElleT
Posted by

I hate to say it (no, I really do!), but it may be the booze.

I'm basing this entirely on personal experience, but if I'm not in a great headspace, even a moderate glass of wine will have me awake with a POUNDING heart at crazy o'clock. The more stressed I am - because of a bad day at work, or because, say, I have stupid cancer - the more likely it is that I'll suffer a Nocturnal Cardiac Racehorse Incident.

It's a real downer because I do love a bit of plonk of an evening, but it's simply not worth it for the tapdancing ticker.

Lynchmill
Posted by

Latest Tg is 3.2 down from last result of 4.9 yay, out of the danger zone of 5 and 45yrs old (it was.my.45th last week)

I've cut back on the booze, it has helped mostly.