Feeling drained

Hi Guys,

I had thyroid cancer in '13 and this was successful removed (left side only) all has been great, until a few weeks ago. The normal stuff as many of you suffer, tiredness, aches, weight gain, but not the coldness in fact I'm the opposite I'm boiling hot all the time (Obviously this could be menopausal 55yrs of age) THE TSH came back all ok 1.63 and I've just had my free T4 14.5 and T3 1.77 Dr said all is fine...am I depressed??!!! I'm being sent to the Health Assessment Unit at the hospital cause she's at a loss (in fairness shes a great Dr and very understanding) to see if they can find out whats going on. I really can't see the point to be honest coz it will be more bloods and stupid questions. Has anybody else been in a similar boat?? Thank you all :-)

16 Replies

  • Hi. I had same op, same side 2014. Some symptoms-mainly heavy periods and depression at mo. You might want to find out what your FT4 results were pre-op. I know my Ft4 has dropped by abt 2 points and FT3 bottom of range. Am not even mid range for both. My TSH has also increased from 0.66 to 2.17-I would be treated in the US-think they treat at 2.7. I plan to highlight my previous and current results and the changes in levels which means they are no longer normal for me as an individual-the range is then irrelevant. It simply does not make sense to say that even though your FT4 was prev 16-17 it is ok now that your 14! In his book understanding thyroid disorders Dr Toft states that in a healthy individual T 4 stays the same throughout life, so surely drops in levels indicate something is wrong, esp if matched with raised TSH. We really need to challenge endos and gps more than this-their responses are obv not scientific. I really think that media attention might be the only thing that works, ie a large worldwide demonstration abt the plight of thyroid patients. Unless we actively do something, nothing will change in our lifetimes.

  • Hi Salsa,

    Thank you for that. I feel like its all in my head!!. I found a pre op blood test but, it looks like I never had a T3/T4 test and the TSH was "normal". The reason being is because the stupid Dr back then said I was fine and yes according to that Dr it was in my head!! Needless to say a letter of complaint was written. It was actually my husband who demanded for me to see a Specialist, and hey presto papillary thyroid carcinoma. Since putting the tread online, I've now got an appointment with my Specialist next week. He's actually very good, so we will see :-)

  • Try and get copies of results-request them-your entitled to them by law-they shd have tested your FT4 before surgery. Did they try and remove your whole thyroid? They told me I had cancer when I didn't have it and tried to persuade me to have whole thyroid removed so am currently suing them via a Solicitor. The whole attitude is so incredibly dangerous and irresponsible. They need to be called to account-peoples lifes are being ruined. Good luck with your specialist and if he is anywhere nr the midlands can u let me know!

  • OMG Salsa thats terrible to hear.

    I only had the left side removed. At least the Specialst was amenable to that. Just pre-op I said I didn't want the whole thyroid out if there was nothing wrong with the right side.

    No I'm in Ireland I'm afraid and I will let you know what he says

  • I've actually found details of an old blood test from 2005, 8 years before my op and the TSH is 0.70 ...its actually doubled and some. But I guess this would happen with half a thyroid, unless anybody knows any differently??

  • Have you got the ranges for those results - that T3 result in particular is hard to read without the range. Are you on thyroxine? If so, how much? Did you take your thyroxine on the day of the blood test?

  • Hi Jazzw, no I'm on not medication at all. The T3 (Total) was 1.77 but range was 1.3 - 3.1 so Dr said its "normal" I'm very confused and tired :-(

  • I thought that t3 looked low. Is not as low as I thought without without the the teenage, but you want want to be in in the to 75% of the range. So there is definitely room for improvement.

  • It's in normal range, but less than halfway up the range. I think it's telling that you've found that old TSH result of 0.7 - your thyroid was obviously running harder back then, so you're now feeling the deficit, so to speak.

    But - it may not be your thyroid per se - it might be that your ferritin, Vit B12 or Vit D levels (or all 3!) aren't where they should be. Have you had any of those tested?

  • Ferritin is 45 range 13-150. Vit B12 311 range 191-663 Theres no Vit D

  • Yes - well, ferritin should ideally be at least 70 for effective T4 to T3 conversion - so taking iron would almost certainly help.

    And that B12 is on the low side. Ideally it should be over 500. It would be worth getting a good methylcobalamin (B12) supplement. I'd lay money on your vit D being low in range. Might be worth asking for it to be tested - as it would be good to be sure you have no parathyroid issues.

  • Jazzw you're an angel thank you so much. I might get some dleep tonight without worrying. ((Big Hugs))

  • Hi Pipasawrus! I'm quite similar to your situation, I had my thyroid removed in 2013. In my case they removed the second half a few weeks later, so I am definitely on Thyroid replacement for life.

    But I was was also obviously unwell during the few weeks gap while I only had half a thyroid. I was told my results were 'normal', but I had some some of of the worst symptoms I've ever had. Could hardly lift my head off the pillow to eat some of of the time!

    It It looks like from your results above there is is some obvious low hanging fruit to fix. Your TSH is to high, and Free T3 is too low - so you clearly need some some thyroid replacement. It's great that you found that old blood test - that is gold dust, means you've got a clear meaningful goal of of where to get back to. It also looks like several of your key vitamins need sorting, too. Most of of these should be well well over halfway through their ranges. So this means all your problems are likely explained by these simple issues!

    The next question, is how will you get the treatment you you need. This bit is more difficult, because you will likely find your doctors know very little about how to treat you. You've been lucky to get all these detailed tests, but the doctors who ordered them obviously don't know how to interpret them. For vitamins, they will likely do absolutely nothing. But you can do a search on on this forum for each one, and find tons of excellent advice on what levels to aim for, and exactly which supplements to take - there are often little complexities like taking tablets under the tongue.

    For the thyroxine, if you go in with all these numbers very clear - particularly particularly the old blood test - you may maybe able to argue for a trial on the thyroxine obviously need. They will probably give you levothyroxine, which which is definitely worth a try, and and start you on low dose which may need increasing. Make sure you get an appointment for another blood test in 6-12 weeks.

    If If you are not offered thyroxine, you have two choices. Carry on researching here, until you are confident to buy your own over the Internet. OR email Louise Warvill at Thyroiduk for the list of recommended doctors, mainly private, and attempt to get yourself referred, or pay yourself to see one.

    Personally I have been given treatment by my original consultant, but eventually my blood all seem normal, but I'm still stuck in bed. So I have gone private to a fatigue expert, and and am now having adrenal treatments. These are giving me a lot of improvement, but if it doesn't doesn't get get my fully better, there are other things to try next. So there is a long path of things to try out, there is a lot of hope that you will see big improvements!

  • Goodness Silver Advcado, you are going through thw wringer!! but thank you so much for sharing.

    I think I will go down the vit road first...more to buy eh!! lol I know its not going to kick in straight the way but I hope to see a slight improvement before I see the Specialist and then maybe the "hardcore" stuff lol.

    I think one of the worse thing and I guess is the same for you, is the feeling tired, and because you can't actually phycially see anything wrong it makes it even more difficult, but its good to know theres people on here to give you a boost, help and even a smiley face

    Thanks again :-)

  • Yes, it's easy to think think all all in in your imagination even when you're quite seriously unwell!

    I suppose i have been through the wringer ;) One thing about that, though, is it does make you feel very grateful as you start to come out the other side. Very good luck to you :)

  • Aww thank you Silver Avocado..will keep you posted. Keep me posted too please :-)

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