Thyroid cancer

Hi all this is my 1st ever blog. I've been in remission for 5yrs after total thyroidectomy and removal of 52 lymph nodes due to papillary cancer that had spread. I also have Crohn's disease and ankylosing spondilytis it's thought an immunosuppressant caused the cancer. After radioactive iodine treatment my tsh has to be fully suppressed. This has been the case until recently when levels have started to rise the answer to increase thyroxine meds. However my level has remained unchanged after 8wks of 275mcg I am now on 300mcg! I'm really tired all the time and very stressed that the cancer may return even though thyroglobulin remains unrecordable. My doctors say there's nothing to worry about but shouldn't I feel symptoms of being hyper rather than the hypo that I feel? If anyone has similar experience I'd love to hear.

11 Replies

  • Hi What a worry for you.Have you had TSH, T4 and free T3 tested? I suspect you may need a little less T4 and some T3 with it , It depends on the T4 and Free T3 test. The body, can suddenly top converting enough T4 into FT3. This is very common. I need my FT3 near the top of range, this is common.I hope that helps.

    Best wishes,


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  • Hi Jackie thanks so much for your reply I did think that maybe I am not converting as T4 results were 19.3 mid range I think and T3 was 4. I'm going to nag the ent's now as funnily enough they are not phoning me back! What a fantastic website I will stay in touch xx

  • Hi Yes most of us have to fight! Most people, including me, find they need T4 about top third of range ( I guess, without ranges) yours is a little high, and FT3 near the top of range, but not over. I hope you soon feel much better and can stop worrying .

    Best wishes,


  • ....sorry to hear you have had such a difficult time. I agree with Jackie about having the full blood test done and the idea of possibly adding some T3.

    As you probably know T3 is the most active of the thyroid hormones. The largest amount of T3 receptors are in the brain - where lots of T3 is needed and secondly the gut - the yards and yards of it ! I too have Crohns and was diagnosed with Hashimotos in 2005 at 57. For over 20 years I struggled with Crohns with lots of surgical interventions. Pleased to report that I am now much improved and a recent colonoscopy revealed low to medium lesions but almost perfect bloods and scans. ( liver, spleen, kidneys etc ) A complete mystery to the medics !!

    As a non medical person - who goes a lot on intuition - I truly believe that since I have been on T3 with BIG doses of B12 and D3 I have seen a great improvement. Remember that VitD is anti-inflammatory as well as all the other great things it does. It is a steroidal pre-hormone. Low D3 is seen in many serious and chronic conditions including TB and Crohns. ( I also had a TB gut ! )

    It would seem that as you have other auto-immune issues you may well have had auto-immune disease of the thyroid. I have read somewhere that for those of us with that condition there is a greater propensity to have conversion problems - converting T4 into the ACTIVE T3

    Most of the good things I have learnt are from the well informed people on this site. Yesterday I walked my dog for half an hour - played two sets of tennis and swam half a kilometre in my pool. OK so I am retired and living in Crete - but it is such an improvement on how life used to be.

    Please feel free to ask me for further information if you think it appropriate........

  • Thank you also so much for your info it's helped to reassure me. I had surgery for crohns too and have regular B12 but it was only a few months ago that I had bit d test levels were almost nil. I've been told to take multi vits but suspect this isn't enough? I shall get onto the hospital now I have idea what going on. Am very jealous Crete is beautiful, I have 2 horses and ride most days, sheer determination, not the same in our climate though! Thanks again.

  • ...take a look at for information on VitD - the levels and how to treat. There will not be enough in a Multivitamin. I take 5,000 iu's x 2. You would think that living in the sun we would be fine but both hubby and I were insufficient. Also the Vitamin D Council website is good. Take a look at the tags on the right of this page and search for VitD and you will be overwhelmed with advice. Who tested your D when it was almost NIL and what did they do ?

    There are some very good sprays around for both B12 and VitD. Take a look at too for information. Absorption of B12 takes place ina the terminal ileum and with Crohns the chances are that is where you problems will lie. Dissolving B12 under the tongue has helped me as I no longer have a terminal ileum !!

    Enjoy your horses - so good you can experience such lovely animals.

  • Hi again my vit d tested by my Gp at request of pain management clinic it was just a blood test and the Gp told me to take a multi vit. Obviously not sufficient considering what you take. Thanks for all your help. Am off to research about all this now can't beat a little knowledge.

  • I really feel that he did not serve you well. Now you more and can treat yourself. Please ask if you need any help....

  • Did you start taking multi vitamins around the time your TSH started to rise? If so is there calcium or iron in the multi vitamins? Both will stop you absorbing thyroxine as well as previously.

  • I too had thyroid papillary cancer,and thyroid removal (althought not in the lymph nodes). I am still not well but better being on T3, because I had a conversion problem.

    Maybe you too would do better with T3.

    Good luck!

  • hi lovely to be able to share with u as there not many of us out there who have had thyroid cancer. mine was in 2005 papillery cancer and full removel of thyroid , para thyroid and a few lymph glands. then radio active iodine. im on 250mg thyroxine. also have d3 , b12 and iron tablets. docs i think themseves dnt know how to help for the best. in alot of ways try and be positive and go with the ups and downs of it as we so lucky we still here..i love my kids and family and friends so much that i can put up with feeling like shit so i can spend another day with them , then the next and so on hopefully. as long as thyroglobulin is below 2 and your tsh is well surpressed below 20 then at least you know you still have a fighting chance. my doc told me he got another patient who had thyroid cancer over 25yrs ago and she still going strong !!! hugs to you x

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