Cysts, Increase of Levo and Iron

Morning all. I'm just back from my specialist who is now putting me back in the care of my GP's. He's increasing my dose to 150mcg of levothyroxine (starting dose 2 weeks ago was 100mcg) as he wasn't happy with my levels (sorry, was too tired to check what they were). I am iron deficient and he said the GP's will sort that with some stronger stuff than my over the counter supplements.

My ultrasound scan should a few abnormalities including a few 2-3mm cysts but he said they aren't cancerous. My throat has been horrifically uncomfortable/painful and he said this should go away and to continue taking ibuprofen (been on it for a lifetime it seems). He said they shouldn't get larger.

Any recommendations on helping the cysts go down/away?

Also, can I demand that the GP sort my B12? I am "within range" but after everyone's help and advice it is clear we need more.

Thanks all. Any other hints/tips would be great!

7 Replies

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  • Hi Pennyrose,

    I remember we had quite a long exchange about B12 in a previous question, and I am still enraged on your behalf that your doc hasn't sorted this. You were clinically deficient, you were given the loading dose, and then your treatment was stopped. The only reason to stop treatment of a B12 deficiency as far as I'm aware is if they have categorically established that it was dietary related - are you a vegetarian or vegan?

    I'm giving you a new link here from NICE:

    cks.nice.org.uk/anaemia-b12...

    Please print this off and ask your doctor why the NICE guidelines are being ignored in your case. The wording is very specific that the treatment needs to be FOR LIFE if deficiency is not of dietary origin. Whatever your serum B12 level is now is irrelevant, you've already been given injections so why were they stopped?

    I'll add in here again the Patient UK article:

    patient.co.uk/doctor/Pernic...

    Which very clearly states:

    "It should be remembered that serum B12 is not always an accurate reflection of deficiency at a cellular level.[24] It is perhaps for this reason that some patients become symptomatic if the frequency of their injections is reduced, despite having normal serum B12 levels."

    Your treatment wasn't reduced, it was stopped! Please don't let them get away with this.

    H x

  • Sorry, realised the NICE link doesn't work very well. On the left hand side you need to click on

    Scenario: Management =>

    Treatment for B12 Deficiency =>

    Also just noticed if you click on

    Monitoring =>

    It says "Ongoing monitoring of people being treated with vitamin B12 or folic acid is generally considered unnecessary (unless a lack of compliance with folate treatment is suspected, or anaemia recurs)."

    BASICALLY, DOCTORS NEED TO STOP USING THE SERUM B12 TEST AS A MEANS OF MONITORING PATIENTS. IT IS NOT IN THE GUIDELINES TO DO THIS, ANYWHERE.

  • You have been absolutely wonderful since I've joined!! I don't eat meat/fish but have a pretty good diet and have always ensured I get more than enough protein/iron/bvits and supplemented when I got sick last year. What is odd is 10 years ago when I was a meat eater I was always anaemic as I didn't eat much in the way of eggs/ pulses! But I digress.

    Meeting the GP on Thursday... Fingers crossed! X

  • OK, your doctor might argue it's dietary as you are a vegetarian. However, my understanding is that it's mostly vegans who would have this problem through diet alone. B12 is very bioavailable in dairy products, so if you've always eaten dairy you should have been getting some B12. I don't think it's very bioavailable in eggs however. Might be worth some further research?

    Good luck next week, H x

  • Thanks so much! I must say when I stopped eating meat 5/6 years ago I was a bit useless because i didn't really eat cheese or much in the way of eggs! Over the past few years I've been so savvy about what I eat (ok, with the exception of chocolate...can't live without it!!). Last year when I first got sick I started taking ferroglobin, a b-12 heavy liquid. Even with this the b12 kept coming back low. My body is strange!! X

  • Hi Did you have a biopsy for the cysts? Only way with any cyst to know what they are.Cysts do not "disappear" even if proved benign , usually are, but only a biopsy shows that, then you just live with them., where ever they are.

    Best wishes,

    Jackie

  • Thanks jackie- nope no biopsy! He just said I didn't have cancer...so he can't tell just by looking? Are they a bit small to be biopsied? He said they were 2-3mm. I asked what to do with pain but I really hope it goes soon! Feels like someone is strangling me! Plus it's a bit embarrassing when my voice goes hoarse, I sound like my voice is breaking :/ x

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