Thyroid removed in July 17

Hi

My name isSharonand I am 47 years old. I had a thyroidectamy in July after struggling with an over active thyroid, large goitre and abnormal cells for 5 years. I saw my surgeon last week and was told it was a very difficult op over 6 hrs long and that my thyroid was very inflamed. Somehow I expected to feel normal again after my ok but he'll no not a chance! I actually said to my surgeon - I wish I had never had the op and her reply was- Sharon if you hadn't it would have killed you!!!

They cannot get my T3 or T4 levels correct and tbh I was told I am very symptomatic with numerous symptoms. I constantly feel tired - slept for 3 hrs today, I am snappy, I burst into tears for no reason, my hair is falling out and i have gained over a stone in weight, despite joining slimming world I havent lost an ounce. My partner is very supportive of my illness but tbh I just want to feel normal again and feel like a woman and to start looking weight. Can anyone offer any advice please? I am on 125 lexothryoxin and iron tablets.

Thanks

Sharon

8 Replies

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  • Well, my first advice would be to leave Slimming World! It's a very unbalanced diet, based on low/no-fat, and that is just unhealthy. The body needs fat and it need cholesterol. And nothing is going to make you lose weight until your T3 is optimal.

    Secondly, would to get hold of your blood test results. You need to know exactly what was tested, and exactly what the results were. It sounds to me as if your doctors are dosing by TSH, and if that's the case, they will never get your levels correct.

    Thirdly, I would say get your vit D, vit B12, folate and ferritin tested. It's not just about hormones. Your nutrients need to be optimal for your body to be able to use the hormone you're giving it.

    And, when you've got all those results, we'll be better able to see what's going on. :)

  • Sharon260170 The sad truth is that most endos and GPs don't know how to treat thyroid patients to bring them to optimal health.

    First of all, do you have your latest thyroid results? If so post them, with their reference ranges, for members to comment.

    If you've had the following tested, again post the results with reference ranges for comment, these all need to be optimal (not just in range) for thyroid hormone to work properly:

    Vit D

    B12

    Folate

    Ferritin

    I assume that because you're on iron tablets that ferritin might have been tested. What was the result? Did you also have an iron panel and full blood count?

    In case you don't know, each iron tablet should be taken with 1000mg Vit C to aid absorption and help prevent constipation. Iron should be taken four hours away from thyroid meds as it affects it's absorption. It should also be taken two hours away from other meds and supplements.

    Levo should be taken on an empty stomach, one hour before or two hours after food.

    When having a thyroid blood test, always book the very first appointment of the morning, fast overnight (you can have water), and leave Levo off for 24 hours. This gives the highest possible TSH which is what is needed when looking for an increase in dose or to avoid a reduction.

  • I am sorry you've had to had a TT. It's bad enough if we've got some function left in thryoid gland.

    My personal opinion, having a thyroid gland, is that everyone should be given T3 added to T4. Several new research teams have shown that a combination of T3/T4 is preferable for many people.

    There are so many on this forum as the 'modern' method of diagnosing/medicating doesn't suit us. So it is a matter of reading, learning, asking questions as all the doctors know is to diagnose upon where the TSH falls. If it is 'somewhere' in the range they will say we're on a normal dose but our TSH has to be 1 or lower. Also our B12, Vit D, iron, ferritin and folate also have to be taken.

    Always take levothyroxine with one full glass of water and wait about an hour before eating. Take supplements well away from levothyroxine. I take mine at lunchtimes. Always get a print-out of the blood results with the ranges for your own records and you can post if you have a query.

    Levothyroxine is T4. It has to convert to T3. T3 is the active hormone required in all of our receptor cells in order for us to function normally.

    I hope you feel better soon. Doctors don't realise what it feels like to have hypothyroidism plus they don't know any clinical symptoms which can be very disabling. All should be relieved when on an optimum of hormones.

    thyroiduk.org.uk/tuk/about_...

  • theres several reasons

    1) blood tests must be early morning and fasting and no thyroid meds in previous 24 hours

    2) its vital that ferritin,folate,b12,vitd3 are all tested and restored to halfway in their ranges

    3) some patients after TT need far higher leveks than doctors understand simply because their bodies were so highly sensitised by the high levels in Graves

    4) some post TT patients only get well by taking Natural Dessicated Thyroid because it contains t1 t2 t3 t4 and calcitonin

  • Thanks for the info, can I just take the natural dessicated thyroid? Or do I need my encro's permission ?

  • As NDT is a prescription medication, an Endocrinologist or doctor would have to prescribe. They may not, as false rumours (if you are in the UK) abound about NDT.

    It can be sourced from elsewhere. You'd have to put up another post asking for a private message to be sent to you of where to source from a reputable company.

    You can also source T3 (as above) as many also get well with T4/T3. i.e. the doctor prescribes levothyroxine and the patient supplies her own T3.

  • Hi,

    people who have no thyroid will usually need to be given T3 as well as thyroxine. a percentage of the T3 your body needs comes directly from the thyroid gland, so if you don't have one then you can't convert enough from the thyroxine alone.Also did you have it removed due to hashimoto's? If so then you will also have a problem with the conversion.

    I would ask for a referral to an endochrinologist, they can prescribe T3. Probably best to go down that route first before trying to self medicate with NDT.

  • The thyroid gland produces natural T3 and natural T4 AND ALSO several other hormones. For anybody who still has a thyroid, the synthetic T4 (levothyroxine or whatever) may very well suffice. For those without a thyroid at all, synthetic T4 does not usually work properly because, I have good reason to believe, none of the extra hormones are being produced. I do not know why my body needs them, all I know is that without them I feel absolutely rotten and after starting on NDT, which DOES contain them, I feel relatively well again.

    In my opinion it is a criminal action to prevent anybody without a thyroid from being prescribed NDT as a matter of course, even simply to establish whether taking it produces an improvement in health to the patient.

    My experience is very similar to what you have been through except that the first few months after the TT, whilst of levo, was much less distressing than what you seem to be experiencing.

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