Headaches and Nausea after TTH and RAI

Hello
I don't think there's any particularly strong indication that this is linked to life without a thyroid or a reaction to medication, but I would always recommend you raise this with your GP and bring it up at your next appointment with your thyroid specialist. 
There are many things that can cause headaches that aren't thyroid related and it's important to try to find out what's causing your problems. 

Hi Barbara

Thanks so much for taking time to respond.. I probably should have mentioned that all of my parathyroid glands were removed during the second operation and this has left me with hypoparathyroidism. I have had dramatic weight loss since my first operation and can no longer sleep for more than 5 hours per night. These headaches started immediately after the FNA and have continued weekly over the past 2 years or so. My specialist thought it might be the early menopause and hormonal headaches, but I have been taking medication for this for 3 months and the headaches are not subsiding. I don’t feel particularly stressed either (albeit I’ve had worry about not being able to work over the past couple of years), but I’ve ruled out stress and tension headaches. I’m at a bit of a loss. I’ll raise it with my consultant again and will hopefully turn a corner soon. Thanks for your help xx

Hi Lou

Yes, that extra info may be relevant. I'm not familiar with the side effects of hypoparathyroidism but I can imagine that anything that disturbs your calcium uptake like that could well be having other impacts.
You say you lost a lot of weight after surgery and that you can't sleep. Do you have particularly high Free T4 levels on your blood tests? Do you know if you are perhaps over-suppressed on TSH (if your TSH is below, say, 0.1). I'm wondering if all of this could be linked to taking too much thyroxine. But without the blood numbers, I'm only guessing. High FT4 would definitely have the potential to interfere with your sleep. Do you ever get palpitations or a racing heart?

Hi Barbara

It’s sitting at 23 (if that makes sense). I’m struggling to understand the numbers. My levothyroxine was reduced to 75 mcg in January and at that time my TSH was around 0.1. My consultant decided to leave it for around 6 months to see how I managed on the 75mcg, but I’m feeling worse than ever. I’m hoping to see her again next month. Yes, I have regular palpitations and my pulse is usually around 100 or over when I track it on my FitBit. I also feel faint most days, with very little energy. Thanks! X

23 for FT4 isn't wildly high (I've been over 30 and seldom got as low as yours) and 0.1 is not wildly low either. So potentially this isn't anything obvious with the thyroxine.

Have you ever been tested for Vitamin D or B12? Those are two things that often fall out of normal and can cause a host of odd problems. I would suspect you should be getting Vit D to go with your Calcium due to the parathyroid issue, so I'm doubting that would have been able to go off target.

I'm at a bit of a loss for what to suggest next. Does your doc do you a full blood scan (in the words of Casualty, FBCs, U&Es, etc)? Something sounds like it's not what it should be but the thyroxine might not be the culprit.

Sorry to not be more useful. 

Thanks so much for your help Barbara. There’s a lot of head scratching going on at the moment. I’m on Adcal-D3 and Alfacalcidol and take additional Vit D every day, but my calcium’s still low. My red blood count is also low, so I’m taking iron for that. Hopefully, we’ll be able to get to the bottom of the severe headaches and nausea soon. Fingers crossed! Take care xxx

Hi Barbara

I hope you’re well.

I’m just  looking for advice following my appointment with my consultant this morning. She said my TSH has increased from 0.01 to 0.22. Is this anything to be concerned about? She’s decided to test my TG annually, so won’t be testing this until December (when they’ll also do my ultrasound scan).

Thanks for your help.

Louise

Hello again, lovely to hear from you.

Your TSH value depends only on how much Thyroxine you take and how you take it. It can go up or down with weight gain or loss, if you're not giving it a good 30-60 mins before eating or drinking, or even potentially if you're taking other medication. The important thing to know is that IT DOESN'T CHANGE BECAUSE THE CANCER IS COMING BACK. 

I hope that's a reassurance. 

Typically, the docs are looking for the first few years to keep you at TSH around 0.1 and some might say that 0.22 is a wee bit high so early on, but conversely (especially with your headaches and palpitations) TSH of 0.01 was possibly way too low.

Did the doc ask you to change your dose? Many of us end up fine-tuning with different doses on different days (I do 125 6 days a week and one day at 100 which the doc finds bizarre but keeps prescribing for me) as any change of 25mcg or more per day every day will most likely send you back to over-suppressed. 

I suggest taking your lead from the doc. If she's happy to leave you at 0.22, then go with it.

Tg testing annually? She must think you are very low risk at this stage. I was doing it every 6 months during my first few years. Indeed, I probably still do around 2x per year even now - but I arrange all my own blood tests and the GP surgery just go along with what I ask for. I probably could or should drop to once per year as I'm coming up for 11 years post-surgery but I am a bit of a control freak. 

How are your headaches?

Were any other things on your blood tests at all 'odd'?

Thanks so much for getting back to me Barbara and for reassuring me about the increase in TSH.

As my weight is still so low (6st12lb and BMI of 17.6) and I’m still only averaging 5 hours sleep per night (2 years post surgery and RAI), I’ve been advised to reduce my Thyroxine to 75 one day and 50 the next to see if that helps to slow things down. I take it first thing and then wait an hour before eating and drinking. I then wait another 4 hours before taking my calcium medication for the Hypoparathyroidism.

As I’m only 2 years post op and RAI, I was surprised that my consultant was happy with my TSH being 0.22 so early on, but I’m happy to go with this. I was surprised to hear that patients are moved to annual TG testing so soon. I also have an annual scan due to complications with  antibodies.

My headaches and nausea haven’t improved and I’m now being referred for a CT scan. I’m now wondering if it could be nerve or tissue damage caused during either operation or both. Perhaps a pinched nerve. It just seems too coincidental that I haven’t experienced this type of pain before and that it began at the same time as surgery. My head and neck have felt very tense and tight over the past 2 years. I just put it down to my body healing from surgery.

My blood tests were: TSH:0.22; T4: 23 and Iron levels: 116 (which is slightly on the low side).

Thanks for all your help, Barbara.

Take care

Lou x

My goodness, there's not much of you, is there? The world goes on incessantly about people being overweight, but I should imagine there are plenty of concerns about being underweight. I prescribe chocolate and lots of chips - although probably the choc wouldn't help with the headaches but it might be fun to find out (just in case any moderators are about to delete my post, I hope it's clear I'm not serious).

You are doing everything right with your tablet regime - you'd be surprised how few people do get good advice on that after surgery. We've had people chasing their tablets down with a bucket of tea and a loaf of toast. 

I hope the CT scan gives you some answers. You could well be right that something in your neck area isn't as it should be as a result of the neck disection. It's not unusual for those to cause mid-term issues of stiffness or pain. Once they have the results of that, you could ask to see a physio - perhaps somebody can get your neck loosened up and help relieve some of the problems.

Blood tests look good. The TSH may well go up next time now the doc has slightly reduced your dose, so don't be surprised if that happens.