How cancer has affected me.

Ohh yes, you are not alone my friend. I had tt a year ago and three months after first dose of rai which I handled ok and was back at work a month after that. In October last year was the second dose and ohh men was I ill, a lot of side effects and as you said my health is declining so I had to take time off from work to sort my health issues. I'm working again a few days ago because we can't live with only one income especially because my kid is autistic and I need to pay for her treatments as well.

My work environment is a bit toxic but the pay is good so I have no choice. So I understand you and know what are you going through.

Be kind to yourself. I don’t know when and what operation you had,  but it takes time for your energy levels to get back to normal. Are you leaving at least 30 minutes between taking you thyroxine and eating? You should take your thyroxine first thing in the morning and on an empty stomach. Any other medication should be taken later in the day.

Have you had your bloods checked since your operation? It could be that your thyroxine dose isn’t quite right which would effect energy levels. 

Take care x

Hi Ma8s, I understand how you’re feeling. I had hemithyroidectomy in Feb 19, Total Thyroidectomy in May 19 and RAI in September 19. I had a further scare in Dec 19, but thankfully my recent CT scan was clear. 

I have M.E. and have struggled to recover from both operations and the RAI. My health has declined and I have no energy and haven’t slept more than 5 hours a night in past 16 months. I am also almost in the underweight category and being referred to a dietitian. I was hoping to return to work last month and there are no signs of me being able to do so any time soon, which is stressful. This becomes very challenging from a financial perspective. 

Despite taking my Thyroxine first thing on an empty stomach, followed by calcium later in the day (I’ve been left with hypocalcemia), I am showing symptoms of an overactive thyroid, which my consultant is trying to regulate, but I’m currently feeling very poorly. 

Take Care xxx

Hi Lou45

regarding your hypocalcemia, were your parathyroids damaged during the op?

Also how about your vitamin d levels,  Vitamin D aids in the absorption of calcium,  so if your Vitamin D levels are low maybe thats why your calcium is low. 

If you decide to take Vitamin D tablets after speaking to your GP, there should be a minimum of 8 hour gap between levo and vitamin suppluments

Hi hop4best

My calcium levels have been very low since my second op 9 months ago, so my consultant thinks that my parathyroids have either been severely agitated or removed, but they want to continue to monitor things a little longer. I’ve been on 3000mg of Adcal-D3 and 1mcg of Alfacalcidol per day for 9 months now and make sure I take these around mid-afternoon and evening to ensure that they don’t interfere with my 125mcg of Levothyroxin, which I take first thing. The side effects have been awful and have impacted on my digestive system, causing a drastic weight loss. I’ve also been anaemic since November and taking Ferrous Sulfate for that too. 

I’m hoping that I won’t have to be on calcium meds for life and that the side effects subside soon. Have you experienced anything similar? X

Hi. Why is it that thyroxine and vitamins need separated? 

Hi Dibbles, Calcium supplements interfere with the absorption of thyroid hormone replacement medications such as Levothyroxine, so it’s best to take them at least 4 hours after taking Levothyroxine xx

Oh that's annoying we didn't know that. I'll make sure my husband separates his timings. Thank you. 

Heya

Sorry to hear that you're sturrling a bit financially at the moment. Are you aware that Macmillan do one off grants to people going through cancer? You just fill out a form and send it off to them, and if successful they will send you a cheque for up to £300. Just give them a call and ask them about it.

Also, have you asked them about any benefits you might be entitled to? If you've had to go off work sick and are no longer getting SSP then you are entitled to ESA. Def worth a call to speak to a benefits advisor to see if there's anything you can apply for!

Good luck!

Lou45

Just to note, youo say you're showing signs of hyperthyroidism 'despite' taking your meds first thing and calcium later. That's a good thing, as it means you're doing things right and are fully absorbing your thyroxine. So it's not despite, it's because. So keep on doing what you're doing so that they can get you on the right dose. Sadly, it can take a while to find and get spot on. Fingers crossed they get it right for you soon!

Hey Mrs! Lovely to see you around! Just to pick up on the 4 hours between vitamins and thyroxine, that's not quite true. It's 4 hours between thyroxine and Calcium, 6 hours between thyroxine and iron, and 1 hour between thyroxine and anything else.

Lou45

Sorry, you mention your digestive system but not what the impact is. Vitamin D is a bit of a bugger for some people and can cause diarrhea. Your doctor should be able to give you something to help slow down your digestive tract and advise on dietary changes to help stop that - if that's what's going on.

Shout if anyone has any questions! Good luck to you all, and I hope all issues clear up ASAP.

Lass

xx

Thanks so much for the advice Lass.

Thats so reassuring re the Levothyroxine and hopefully they’ll get the dose right soon . Re digestive issues, you’re spot on. This is one of the side effects of the Calcium drugs. It makes my stomach churn and I can’t face eating much because of this, so it’s causing drastic weight loss. I’ve just been referred to a dietitian, so fingers crossed it’ll be sorted out soon. I take my calcium 4-6 hours after my Levothyroxine and Ferrous Sulfate around 6-8 hours after that but have been anaemic for the past 5 months. Is this quite a normal side effect too? 

Thanks xxx