Blood tests showing I should be Hyper but feeling very Hypo

Hi, I'm sorry you're feeling so rough and I can't suggest anything helpful but just needed to let you know your GP should not alter your thyroxine. People with tc are pretty much all meant to be on high thyroxine doses to suppress their thyroid stimulating hormone. Please get on to your oncology team asap. 

There's a big cross-over between the symptoms of hyper and hypo thyroidism. That's why the only way you can know where your bloods are is by having blood tests. It would be way too easy to make assumptions and then give too much or too little thyroxine.

One common problem with people who've had thyroid cancer is low Vit D. I won't say the two things are connected but there does seem to be correlation. Please consider asking your GP to include Vit D in your blood tests if you have aching bones and muscles. 

Hi there, I’m so sorry you have felt so Terrible, I have been very similar I had a full thyroid removal in September 2019. It’s taken until recently to get my dose of medication right, it’s been a nite mare feeling so rubbish, and thought I’d feel this way forever but  I was sent for more tests and had a MRI scan as I was also having many falls and felt it was only a matter of time until I ended up really hurting myself. It turns out my B12 was so really so I’m now on injections for that, and just in the process of finding out wether I need calcium now too. 

it was the GP that referred me for the MRI as they thought my symptoms could have been a brain tumour, luckily that’s all come back clear. 
Most of the symptoms have now stopped for me, but I do still feel the cold and I’m really struggling with constipation. 

I just kept going back to the GP as I knew I didn’t feel right and others had stated they didn’t feel like I did, I haven’t seen   The specialist since I was told it was thyroid cancer so my point of call had to be the GP it has been so difficult to get in touch with the specialist and get an appointment to see him. 

Not sure if this is any help

Take care of yourself x

Yes, I should have said, if it's not Vit D, it's often Vit B12 - I just don't have any experience of that one, myself.

Hi, thanks so much for replying.

I’m going to contact my team today.

Thanks, yes the blood tests show the levels are high, but based on the symptoms I told my Oncologist she said if it was the medication I’d be feeling the opposite.

I’ll ask about the Vitamin D. I do/had prior to TC diagnosis been taking a supplement but perhaps the dose isn’t high enough.

Definitely of help, thank you! I’ll ask them about the B12.

I had hypocalcemia post surgery and that did make me feel terrible too, they put me on calcium supplements which did really help.

You too and I hope you get all the help you need.

All the best x

Morning 

I was looking through the chat room feeling very frustrated and upset too.  When I read your post I felt as though I had written it myself.  I had my thyroid out in January this year and RAI June.  I have all your symptoms and feel horrible my body not functioning my latest bloods TSH 0.02 and T4 22.4.  I feel like they think it's all in my head.  I feel my consultants rang for me is not what I can function properly on.  

My oncology nurse who is lovely suggested I speak with my gp about antidepressants.  I really do not think they would help at all

Did you have any further help. 

PF

Hello

Certainly not alone. Before my RAI last week my tsh was below 0.1 and the oncologist reduced my levothyroxine dose from 175mg to 150mg. My energy levels were pretty low and particularly in the evenings I felt very cold both symptoms I thought being more related to hypo. I am hoping that as I have only been on levothyroxine for 8 weeks things will settle down. All the best for your recovery.

Thankyou so much for your support.  My oncology nurse just rang me there. I'm on 125mg at the moment and my tsh is 0.02 now which is good but I'm not feeling good at all.  Shes going to speak with my consultant.  I hope your RAI went well.  You get side effects from that too.  I had quite a few for weeks I found it very hard on my body.  It's not an easy journey we thyroid cancer patients find ourselves on.  It's pretty tough. 

Thankyou again. 

Take care of yourself too