Need advice Please... Struggling with 6 months post surgery....my dr said its just the weather... but it really not

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In Febuary this year a massive lump appeared overnight, and after alot of tests they said do I want it out as they weren't 100% sure it was ok and I said yes as had a bad feeling. Had the operation 17th April, half my thyroid out with the massive lump....6 weeks later I get sat down and told it was palliary thyroid cancer.

Backstory stuff: ex left me a month after op in a not very nice way as found my recovery too much, family are not supportative and went on holiday the week of my operation cause they didnt think it would be a massive deal (offered my a taxi if needed), bestie at the time (ex friend now) didnt care...etc etc.

Since the op I have really struggled with fatigue and muscles aches and neck with shoulder pain....I was feeling better with myself swimming and keeping my nutrients up......but then a two months ago it started getting worse again....

  • muscles aches
  • neck pain (back) getting into my shoulders and causing headaches
  • fatigue and exhausion
  • muscle weakness
  • struggling to eat (from tiredness)
  • random numbness in my little finger going up my arm randomly on a daily basis
  • A numb/ slightly tingling on my hands fingers and lower arm 

.....spoke to my doctor...they did tests and even though some where just in the green zone they have said it was probably immune system picked up something or the time of year.

Fast forward to this week (I moved to Cambridge for 4 months to get away from family) and thought check into the Maggies cancer centre as was feeling a bit low....the radiologist there that gave me the tour and has thyroid cancer patients said everything I have been going through his patients are too and its not just the weather...I didnt get to ask everything I wanted to (will go back in the new year when they reopen as learn more in 20 minutes than the last 4 months)....I felt like I was going insane and now I just want to cry knowing Im not as I knew I was struggling in recovery.

1. Can anyone give me any info about these symptoms from what drs have said and how to manage?

2. I really want to go back to my doctors (ENT) and say I need support/help as struggling but they were so instant everything I was struggling with wasnt to do with them anymore(wondering if they just hadnt had any thryoid cancer patients before at this point)...what do I do?

  • I'm really sorry that your people let you down so badly when you needed them. What a shower of shits.

    I'm on the boob journey, so can't help but I've seen people post replies so your post gets bumped so I hope this gets the attention of someone who can help.

    Going to Maggies sounds like a great idea ... and I'm generally in favour of being a pain in the arse until people take me seriously / help me! Maybe just call the ENT and be unshakable until you get someone with answers?

    Edit to add ... had a little trawl through the forum and a lot of the symptoms you mentioned are on this post...

    community.macmillan.org.uk/.../thyroidectomy-post-op

  • Thank youPurple heart wishing you all the best for you boobs journey Purple heart will have a look at the post  Purple heart think I need to take the advise of being a pain in the arse to the ENT unfortunately too See no evil

  • How are your  calcium levels numbness and tingling can be low calcium. I had thyroidectomy 18 months ago and still on one  calcium  supplement. My pth has recovered but it's at the low end

  • The last blood test I had for calcium or anything was in September and it was mid range of normal. A few others like white or red blood call count I believe was super low end of normal. They havent Purple heartnt to do another since even though I tried to request it. They have just said its probably a viral infection or the weather....which it isn't. Might try and get some calcium supplements and see if tPurple hearty help thank you Purple heart

  • I was taken of supplements for 5 months then it went down so I was put back on them just recently seen endocrinologist and trying reduction now GP got to do me a blood test in 2 months so I guess maybe there could be a chance  your calcium gone down, GP should give you a calcium blood test based on the surgery you had. I had a total thyroidectomy due to thyroid cancer.

    • Thank you for sharing Purple heart I will try my doctors again with this information and see if I can push for one Purple heart glad your gp sounds like they are trying to sort it gor you Purple heart how long until you felt a difference with the calcium supplements? 
  • I was put straight on supplements straight after surgery so had no symptoms then but I've had twitching since about a month after surgery and a dodgy knee since surgery now it makes crackling noises everytime I bend it been sent to physiotherapy for this which is in January. I told endocrinologist about knee but says nothing to do with it, and not bothered about twitching, they just seem to go by blood results which are all at lower end. After going back on supplements did not take long for tingling fingers to go away.

  • Are your thyroid  levels ok

  • They were in September....but have spoken to the nurses today and thwy are going to talk to the ent dr about a full check up by the sounds of it Purple heart