After Thyroid gland removed

Hi I had my thyroid gland removed in February and I am having a hard time I have been feeling tired can't get anuff sleep an passing out to. And at night sleep 2 hour than up then hour later asleep agian and trying to do anything around the house is like I run out energy and eating once a day

Is there any thing I can take to help me feel better

21 Replies

  • What is the dose of thyroid replacement (Levo/NDT) that you are on? I too had a total thyroidectomy and I was started on a very high dose of Levo (150mcgs). That suited me fine but when that (high) dose was reduced I had many of the symptoms you are describing. A high dose does not matter too much just after your operation since it is preferable to suppress your TSH. This is so that any thyroid cells which may still be around do not sparing back into "action" especially if they are/were the cancerous ones.

    If you have them, it would be good to see your blood test results. Maybe you could post them (together with their units and ranges). With very limited information my first guess is that you are under medicated.

  • Demanding certain treatments from the NHS in the UK is unlikely to achieve anything other than annoying the doctor. NDT isn't licensed for treating hypothyroidism in the UK so doctors can't be forced to prescribe it. And as a general rule, doctors can't be forced to do anything if they don't believe it is in the best interests of the patient.

    I do realise, of course, that what the patient thinks is in their best interests and what the doctor believes is in the patient's best interests might be miles apart.

  • you don't pay for your thyroid replacement therapy in the UK .

  • no, we don't pay

  • Can you post what replacement hormone you are taking plus your most recent blood results with the ranges, the numbers in brackets. I had a TT in March 2014 and it took over a year before my GP was happy with blood levels. Unfortunately I still felt unwell and have gone on to self treat with additional t3 (liothyronine). It takes a minimum of 4-6 weeks after a dose change before the full effect is felt, it also helps if iron stores, selenium, vit b12 etc are in range as they help in the conversion of t4 ( levothyroxine), a storage hormone to t3 ( liothyronine) the active hormone.

    I am sorry you are still unwell and that many doctors are uneducated about thyroid issues. I know it is complicated but there are many excellent posts and knowledgeable people on this site who can help. I wish you well on your journey.

  • I thout you would have to have hormone treatment. See GP again. Hope things get better.

  • i had a total thyroidectomy in 2002, not because of cancer. It took many months to get my levels regulated...and I felt horrid. I was taking Synthoid as my thyroid replacement. I persuaded my doc to let me try desiccated thyroid hormone and I then began to feel much better. A lot of docs don't like using the desiccated hormone...but, I persuaded my doc to let me give it a try. Some docs have an issue about quality control with the desiccated hormone, which I think, after researching, is nonsense. It does take some time to get your levels under control no matter which replacement you are using. I like the fact that the desiccated hormone contains T3, so you are not relying on your body to convert T4 to T3 (as is done with synthetic replacement like Synthroid). Get back to your doc and tell him how you are feeling, Blood work is usually done every 6 weeks when your med is changed. Also research the thyroid and how it works (or doesn't). You will find good information on T4 and T3. I hope you start feeling better soon...

  • Sperry1965 May I ask what is desiccated thyroid hormone...thank you.

  • Hi there! Desiccated thyroid hormone is made from pig thyroids. I live in Canada and it comes under the name of Thyroid. In the US I know of Armour Thyroid. I had a very difficult time with the synthetic brands... that are more often than not prescribed. If you google desiccated thyroid hormone you will find lots of info. And, most people do very well on synthetic thyroid...I just had a difficult time. I really hope you find some relief soon. It is miserable when your thyroid levels are out of whack.

  • Some questions :

    1) Why did you have your thyroid removed?

    2) What thyroid hormone treatment are you taking, and at what dose?

    3) Have you had regular blood tests since your surgery to test whether or not you are taking an appropriate dose of your meds?

    4) Have you got copies of blood tests on your thyroid function from before and after surgery? If not, you need to ask your doctor/surgery for copies, including the reference ranges, and then you can post them on the forum for feedback from the members.

    5) Lots of people with thyroid problems (over or underactive) have low levels of essential minerals and vitamins. In people who are underactive there are problems absorbing nutrients from the diet. In people who are overactive there are problems because the body uses up nutrients too quickly thus causing a deficiency. Some of the most important nutrients are vitamin B12, vitamin D, folate and ferritin. If you can get these levels tested, with the reference ranges, and post those results we can help you with necessary supplements and dosage.

  • I was like this after my thyroid was removed. What replacement have they given you? They gave me levo and when I kept saying my symptoms were all still there, they said 'well it's nothing to do with your thyroid, because your bloods are all in range'! Now I know that to be rubbish, but I didnt then. Levo never really worked for me. 4 years after removal I went to see a private endo, who gave me a trial of Erfa thyroid and I got my life back! It really was that dramatic a difference. Everyone's different, but I wish I knew some of the stuff I learned a bit earlier!

  • Hi missmolly55...What is Erfa thyroid and can we get it here in Canada? Thank you.

  • Hi Lily. Erfa is natural dessicated thyroid hormone, taken from pigs. It is actually made in Canada. Armour thyroid is the same but made in the states. Good luck

  • It is actually made in Spain, to the best of my knowledge!

  • Mine levo and I have been fine up till 2 weeks ago

  • Hi Karen;

    Do you mind sharing the reason you had to have your thyroid removed, I had Papillary Carcinoma, but a friend had Medullary (although she was wrongly diagnosed and treated for Hurthle Cell Carcinoma. The post operative treatment and long-term care are not the same for all of these thyroid cancers. You may have had a different reason for having your thyroid removed and again treatments vary so knowing the reason for your surgery really would help to get the correct advice. :)

  • out of the replies Humanbean gives the same advice I would apart from have you tried changing when you take your levo . I found that taking in later in the day but not at bedtime suits me best . Also ask yourself if anything changed in your life in the last 3-4 weeks. like every hormone your thyroid hormones are affected by lots of things .

  • My thyroid levels where alittle high changed doese on my meds today

  • I had my thyroid gland removed Jan 15 and it has taken over a year to begin to feel more normal. In my case it was a question of making very slow adjustments to medication so patience was important. Keeping in touch with my doctor for regular blood tests and making changes slowly helped me. There seems to be no sudden cure. I hope you begin to feel better soon. All the best. X

  • You are at a start of a very long and life long journey. I had my thyroid removed in 2010 and I can share with you some of things I have learned to help you but everyone is different. I was angry if I am honest. Angry at getting poorly. Angry how I felt before and after my op too. But each problem I have faced I have tried to overcome so as cheesy as it sounds, staying focused on overcoming each does help. My gp surgery stopped providing a full range of blood tests that allowed me to monitor my own levels 2 years after removal - so every year I go private and I have an endocrinologist. If you have private medical insurance they may cover all this for you. The NHS is great but somewhat short sighted with the offering they have for thyroid conditions! Get yourself a medical exception card.......all your prescriptions now for anything will now be free!! See NHS not so bad. I take a high dose evening primrose capsule as since my op my boobs have become cysty and this keeps them under control, I take high dose vitamin to give me range of b vitamins to control heart palpitations (common since thyroid is key to metabolism and therefore heart function). I am on 200mcg monitored annually only established after trial error, giving a lot of blood etc. I have a constant feeling of fatigue but I make a point of making the most of everyday and giving in to it at night....I have planned early bed times during week. I monitor my sleep pattern through fit but so I can what rest I need to catch up on. Fatigue is still there.....lurking and annoys me! My skin changed too but found a great brand to deal with all those problems.....medik8. If you have a partner get them involved in understanding your condition....often people SEE no difference so they don't get why you may be lather fix etc. Cutting out sugar from my diet was the big one. Took a while but all the aches and pains I got following my op......went away. This I can't recommend enough. So....give any of that a try. I am not a doctor but these worked for me. Good luck and welcome to the club xx

  • It sounds like you've been on Levothyroxine, had the op approx 4 months ago, felt fine until 2 weeks ago, and had your dose reduced in the last few days?

    It's hard to say why you've been feeling bad recently. As many posters are saying, it can take a year or more to get your medication tuned after a thyroidectomy. I'm just past the 3 year mark and feel hopeful I'm now on the right track. I've had to resort to buying my own medicine as I now take a form of thyroid replacement not available on the NHS.

    But hopefully youwon't need to do that. About 80% of people do fine on the NHS protocol. The best practice is to have a blood test every 6 weeks, and adjust your dose. After the op, your body can coast for a good while on hormones stored in your body, and takes several weeks to adjust to any changes, so it's a slow process.

    Doctors are notoriously bad at interpreting blood tests, so it is always worth getting your own copy. Post your results on the forum and members will comment and help you learn how to interpret them.

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