Post "total" thyroidectomy 5 years still not feeling good Please help :((((((

Hi, can anyone please help, I am 5 years post total thyroidectomy with goitre removal due to under then over active thyroid ( I was under active got pregnant lost my child then went over active & got very ill ). I have struggled all these years with tiredness, fatigue, 15 kilos in weight gain :((((, chronic depression at times & generally feeling awful everyday. I am now taking 150mg thyroxine 5 days a week & 175mg at weekends, I go yo the gym 5 days a week & take up to 10 different vitamins ( after a lot of research to find low levels ) I diet & read every nutrictions advice for thyroid I have a lovely GP telling me my levels are fine every 6 months, please someone help I have to live like this forever. :((((((

13 Replies

  • No, you don't have to live like this forever, thankfully, but it can be an uphill climb. First of all I am sorry you lost your baby due to your thyroid gland causing problems. Second, I am sorry you've had to go on another five years with an ineffective medication for you. Levothyroxine works for many but they wont be asking questions on this forum because they seem to be well.

    First, always get a copy of your blood test results, with the ranges, (labs differ) for your own records and you can post if you have a query for comments.

    Always get your blood test for the thyroid gland as early as possible (TSH is highest then). Do NOT take levothyroxine before test, take afterwards. If you take levo at bedtime miss this dose and take after blood test and you can still take your dose at bedtime as usual.

    Get a new blood test and ask the GP for Vitamin B12, Vitamin D, iron, ferritin and folate.

    Taking Vitamin C (I take 1/4 teaspoon in powdered form) with levo as it helps conversion. This is a list of vitamins/minerals which also help.

    My personal opinion is that people whose thyroid gland has been removed should be prescribed a Natural Dessicated Thyroid Hormone which contains all the hormones our own thyroid would produce, i.e. T4, T3, T2, T1 and calcitonin (T2, and T1 might be quite tiny but they must have some reason to be there). GPs are wary of prescribing in case they get into trouble with authorities but some do.

    First ask your GP if he will add 20mcg of T3 for a reduced 50mcg of levothyroxine. This may help you a lot. Take supplements or medication 4 hours apart from levo as some things can interfere.

    Exercising too much if your are not on optimum (which makes you feel well) medication can reduce T3 which is the Active hormone we need to function fully. T4 should convert to sufficient but doesn't always.

    This is an archived site but there are lots of topics and info which you will find helpful. Dr Lowe died two years ago so some of the links within these topics may not work.

  • Thank you so much for your message I will most definitely be speaking to my GP further with this new information, I really really appreciate your help & advice, thank you.:)))

  • Welcome to the forum, Sineadkots.

    Do you have a printout of your recent thyroid results with the lab ref ranges (the figures in brackets after your results) that you can post as it will help members advise whether you are optimally medicated.

    If not, request a copy from your GP Receptionist. If she says no, ask the practice manager. Patients are entitled to see their test results within 40 days of testing under the Data Protection Act. There may be a £1/£2 nominal fee to cover the cost of printer ink and paper.

    Thyroidless patients don't always convert T4 to T3 well and if your FT4 is high but your FT3 low, you will benefit from the addition of Liothyronine (T3) to a reduced dosed of Levothyroxine (T4).

  • Thank you very much for your advice & help I will definetly get my results. & post. Them I never seen them & just rely on what the doctor tells me, I am struggling to also find advice for woman in the there's 30's with my condition as I am 37 and have had thyroid issues since I was 22 & have never pre or post surgery felt well I have high hopes for the future thank you :)))

  • Sinead, Doctor's idea of fine can be anywhere within the ref range which is very broad. Optimal for most people is TSH just above or below 1.0 in a range 0.4-5.0.

    Ask for the vitamin and mineral tests Shaws advised above as low levels and deficiencies can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms.

  • Thank you I will most certainly get all my results and get them back to the forum for further advice , I really appreciate all your help , thank you :)))))

  • For your friend -

    On the left-hand side column as well there is also a list of clinical symptoms to be ticked off and she should also ask her GP for the same blood tests recommended above.

  • without knowing what your


    Free R4

    Free T3



    are its hard to know

    my gut reaction is you need far more meds or just t3

    i suspect your GP is uneducated in after effects of Graves Disease and very old swedish research

  • What do you mean by this - "suspect your GP is uneducated in after effects of Graves Disease and very old swedish research" - do you mean that T4 only often isn't optimal or is there some after affects of Graves that i should know about. What's the very old swedish research?

  • Graves disease sensitises the body to very bigh levels of tnyfoid hormones thus when they then remove or destroy by RAI your thyroid you cannot ever sgain cope on so called "nofmal " levels and often hou need NDT not simply thyroxine or t3

    without knowinb your gest results as rewuested its hard to know whats going kn

  • Thanks for your post - I feel the same after having my TT last August - never felt like this before. Depression for no real reason is Awful! I've read that a low calcium level could be the reason for low moods so going to get mine checked - might be worth getting yours done? Also think that thyroid less patients can suffer with an anxiety disorder so might be worth talking to the Drs about that! Hope you feel better x

  • Thank you for your message very kind , I did A lot of my own research over past year as I felt like ending it all last year I felt so I'll :(( I trained myself with nutriction & vitamins related to my condition & it's has helped massively but I still feel something is not right hence I had 6 tubes of blood taken yesterday for whole new tests & will post my results as soon as I get them. Regarding food & vitamins, I suffer with gluten & dairy intolerances & I think most thyroid patients should avoid or reduce these foods & fill with lots of veg, proteins & some fruit this has helped me, I also now take about 10 different vitamins, all separate Not as a multi, I use b12, magnesium, vitamin D, K & Z, spirulina, green mix from Pukka, selenium, chromium, thyroid support, mutli bionta multi vitamin these are to name a few, felt so much better with a few weeks do if the medication is sorted I am hoping to feel normal soon, I hope this can help others who still have a gland to work with as I've been told it's difficult as I have no gland :))))

  • Hi there, I have seen my doctor today have come back with normal results , my T3 was 5.3 ( should be between 3.1 - 6.9) should a good level, all vitamins tested. All are very good. But the big news my GP told me Tyroxine does not work well for my body so weight gain & depression seem to be my future life, in the UK there is no other options for me :(((((

    Any help please ?????

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