Symptoms of not enough thyroxin

Hi, my husband has thyroid cancer. He's had his thyroid removed and has had radioactive iodine treatment. When he stopped taking the thyroxin before the treatment, he felt better than he had since the thyroid removal. This convinced him he didn't need thyroxin after the treatment, so he refused to take it. Within a couple of weeks, his health had went down hill, so he reluctantly started taking a small dose - 50mg, then 100mg. He is now really constipated, but more worryingly, he can't pee either. Does anyone know if this is normal? He is sleeping really badly, in bouts of 1-2 hours only. Any help/advice will be greatly received as I am totally out of my depth here and we are getting now support at all from his GP, Consultant or anyone.

18 Replies

  • He obviously needs a higher dose of Levo or some T3 would help. Would his endo prescribe some? People without thyroids definitely do better on either NDT, (natural dessicated thyroid) or the combination of T4 and T3. It is just a case of finding a willing Endo. I assume he used T3 at some point in his treatment, so he will be familiar with it? He also needs to have a thyroid blood test to see exactly where his levels are. Ask your GP to do these and post results here for advice. Whatever he does, he must not stop taking replacement thyroid hormone of some kind.

  • Hi Hennerton, firstly, thank you so much for taking the time to reply to us, it means so much. He has now upped his levo to 150mg as of today and he is going to go to A&E today re not being able to pee. His endo (I assume you mean cancer consultant) is hopeless. He sent a prescription through to his GP for just 50mg of levo, and then it was just 2 weeks supply! At no time has he been offered T3 by the consultant or GP, so it's something we are going to try to get onto asap. He has only had 1 blood test (and that was because we asked for it) after the radioiodine treatment and the only result we were given was "2.8", whatever that means. He saw his GP yesterday, told him how crap he was feeling and the doctor didn't ask him anything nor offer any advice. When my husband said "do you think I should be taking more levo", the GP's response was "I suppose so" and that was that - no offer of blood tests, nothing. We really are at our wits end, so the advice that we have already had from you guys is wonderful - uplifting, even. We'll try to get the pee sorted and then move on from there and at least we know what we have to ask for now. Thank you, thank you, thank you. Mandy

  • You have had some really helpful replies, so I hope things will get better soon.

    I think you should ask your GP for an urgent referral to an Endo, as the cancer consultant is unlikely to prescribe T3 and your GP sounds hopeless. I imagined your husband would already have been treated with it and would be familiar with it but I had thyroidectomy for Graves, not cancer, so cannot be sure. Whatever, he is now in the same position of needing the best replacement for what he has lost and T3 added to T4 has certainly helped me a lot.

    Good luck at A&E and with the rest of the 'journey'.

  • Many thanks again, but can you just clarify what an Endo is? We haven't heard this term before.

  • This is short for Endocrinologist and these consultants should know everything there is to know about thyroid issues. Sadly they do not but they are the best we have, if we want to be prescribed T3, as most GPs cannot do it. Ask your GP to refer you to someone with thyroid knowledge, not just diabetes, which is what most seem to specialise in. I am amazed that you have not seen someone already and would suggest that you lean heavily on your GP for this help. Failing that could you see someone privately? Louise Warvill on this site can send you a list of helpful doctors, both private and NHS. I think you just send her a private message (but I have not done it myself.). Someone else could confirm this or Louise may see this thread.

  • Endocrinologist - the 'specialist' in the NHS for hormone disorders, of which thyroid hormone disorders are quite common.

  • How terrible and what a worry for you in particular and also for your husband. I think you have to go to the A&E regarding 'pee'. He has to go, no doubt about that.Get that sorted and then look at his thyroid medication.

    Hypothyroidism causes everything inour bodies to slow down, pulse rate, heart, digestion, and constipation is another. That's why levothyroxine is a necessity for life as well as to try to keep our metabolism 'normal'.

    What you have to do after A&E is see your GP to have a Full Thyroid Function Test for your husband, that is TSH, T4, T3, Free T4, Free T3 also B12, Vit D, iron, ferritin and folate. Your GP may be reluctant to do all of these tests but demand (may not make a difference as most only look at the TSH for a diagnosis rather than questioning the patient about clinical symptoms which are the most important. You can always get these done privately and Blue Horizon has a special offer for us in December.

    Make the appointment for the blood test as early as possible, not taking levothyroxine before the test but afterwards. If your husband has to have breakfast before the blood test, you must leave a gap of 2 hours between breakfast and levo plus 2 hours afterwards so nothing interferes with the uptake. Supplements/other medications should be taken 4 hours apart.

    Get a print-out of the blood test results from the surgery and make sure the ranges are stated (these figures are in brackets) and post on a new question for members to comment.

    It is dangerous not to take thyroid hormones when you have no thyroid gland. In any case, I think your husband should also have T3 prescribed as well as levo as some of us don't convert T4 efficiently to T3 which is the active hormone which drives our metabolism.

    P.S. for constipation try 1/2 fresh lemon juice in water followed by a couple of fresh fruit about 1/2 hour before taking breakfast.

    When you take levo in the morning, you should leave around 1 hour before breakfast.

  • Thank you so much for all the above. He saw his GP yesterday and got absolutely nowhere. The GP didn't say a thing, just prescribed more levo. He didn't ask about any symptoms, or how he was feeling. We only have one blood test result, done at the hospital about mid December (only because we asked for it to be done) and that said his thyroxin level was 2.8, whatever that means. I have read all your comments to my husband and he is going to go to A&E shortly. He is going to start taking 150mg of levo immediately. His consultant is equally disinterested. At no time has anyone actually talked to Justin about how he is feeling, and we are just about at our wits end. So, I cannot thank you enough for your answer above, just to know someone is actually listening, and then helping, means so much. As you said, we will deal with this peeing issue first and then start screaming from the rafters with his GP & Consultant, when we can actually get an appointment to see them. Thank you so much, Mandy

  • Most of the members on this site are on it because of the ineffectual teatment and the guidelines of the British Thyroid Association who refuse to acknowledge that many patients don't recover their health on levothyroxine alone. None of the replies made to you are from people who are not medically qualified (as far as I know) just have had experiences such as your husband has just discovered but some of us have found a way through the maze, particularly by a 'do it yourself' approach which I never, ever would have thought that a situation could arise in the NHS. Some private doctors don't know much about it either.

    The few doctors who treat patients according to symptoms have been brought in front of the GMC for doing as they were taught as medical students.

    Your husband's 2.8 is high for someone on replacement thyroid hormones and the aim should be towards 1 or even lower. The problem is that neither Endocrinologist or doctors (who used to be trained in clinical symptoms before the blood tests were introduced) can only be called ignorant. They only look at a computer print-out and thus diagnose i.e. 2.8 may be in the 'normal range' but they forget we are not 'normal' having a dysfunction of the thyroid gland for which treatment should be sufficient to give us good health regardless of the blood tests as the patient would soon know if they were taking too much.

    Your husband's treatment is not unusual and I will send you a private message.

    We have had to read and learn as much as possible and I find it amazing that whenever they remove a thyroid gland, for whatever reason, it is never explained to the patient what they may come up against healthwise and are or less have to find out themselves. Of course, a cancerous thyroid gland must be removed but I think more than levothyroxine (levo) is needed. For instance our thyroid gland produces T4, T3, T2, T1 and calcitonin. We are only provided levo which should (?) convert to sufficient T3 (the active hormone which every Receptor Cell in our body requires. T4 is inactive. So the least minimum for (I believe) no thyroid gland is T4/T3.

    I hope everything turns out fine for your husband.

  • I understood that t3 was the treatment of choice for post thyroid cancer patients

    RAI may well have damaged all the t4 to t3 conversion sites in the body especially the liver

  • Mandy, was your husband on Liothyronine (T3) prior to his RAI treatment? He may feel better on a combination of Levothyroxine (T4) and T3. I couldn't tolerate T4 only but am doing ok on T4+T3.

    6/8 weeks after any dose change your husband's thyroid levels should be checked. Post the results with the lab ref ranges (the figures in brackets after the results) and members will advise. It's very difficult to interpret results without the ranges as they vary across the country.

  • Mandy & Justin, I hope all goes/went well at A&E.

    Please be assured that, despite many GPs' attitude, thyroid hormone replacement is essential (especially with no thyroid), we just cannot function without it - why would we have free prescriptions for life otherwise? There are over 21,000 members here who have joined to find out information, ask questions and gain support - so you're not on your own. Jane :D

  • You've had great advice and I can add nothing more to that - but thought you might be interested it's common for people to feel lots better - at first, anyway - when they stop taking Levothyroxine. Something unexpected seems to happen. I'm sure I've read here before that abrupt decreases in medication prompts more conversion of T4 to T3 (the active form of thyroid hormone). Unfortunately it doesn't last more than a couple of weeks and people then go downhill very quickly, as it seems your husband did.

  • Dear Peacock63,

    I am sorry to hear about your ineffectual doctors treating your husband. I have also had a TT and RAI this year. I was on t3 (liothyronine) after the TT before the RAI. I am now on 150mcg levothyroxine daily which I take an hour before food in the morning. I was still very fatigued despite 'optimal' blood results of TSH but due to the experts on this forum I was able to persuade my GP to check ferritin, folate, vit b12 and vit D. I was in the the low range of normal for all of these and since supplementing them I have felt much better. I paid to have private blood tests to check my levels of free t3 and free t4 (which had previously been low normal despite suppressed TSH) and they have increased. I think you need to persuade your GP to regularly monitor your husbands TSH which should be kept suppressed for some years to help prevent reoccurrence of the cancer. Check out the guidelines from the British thyroid association who state that TSH should be suppressed for a minimum of 9-12 months and then be reassessed. It might be worth quoting this to your GP to remind him/her of their responsibility.

    I wish you well on the journey to well being. It is hard to reconcile that with no thyroid we would eventually die without any replacement of hormones so please encourage your husband to investigate all the alternatives until he finds the right one for himself. He will need to recognise that Gp's don't know much about endocrine glands in general so he will have to take responsibility for his own wellbeing.

    Good luck


  • Shocking treatment or lack if it. I hope things get sorted at A&E then get the thyroid sorted-your GP sounds useless. Is there another doctor in the practice you can see? Might be worth a try.

  • I have sent you a PM x

  • Hi Peacock63,

    I too have (follicular variant of papillary) thyroid cancer and had the right thyroid lobe removed but didn't need RAI. My initial reaction after the removal was that I was feeling a lot better but a couple of weeks post surgery and I started to go downhill. I was becoming seriously hypothyroid and was started on 75mcg of Levothyroxine. I wasn't improving and so was referred to an endocrinologist who has been monitoring my doses and gradually increased my Levo so that I was on 175mcg and 150mcg on alternative days. My symptoms were not improving and so he started me on Levo and T3 combination and after 6 months of this regime he started me on Armour thyroid. I've felt better on this but not 100% because he started me on such a low dose. One of the symptoms of hypothyroidism is constipation and I've had this ever since my half of thyroid was removed and it did improve once I started on the Armour so, perhaps your hubby should be on Armour. I always felt that I had a conversion from T4 to T3 problem long before my thyroid cancer was discovered because I developed diabetes 5 years before my cancer was found but I had all the symptoms of thyroid cancer which my GP disregarded as chest infections and laryngitis.

    If you need more help you're welcome to PM me and I'll do my best to help. Try not to worry because it can take along time to get the medication dosage right. It's nearly 2 years since my cancer was removed and I'm not back to my old self, and might never be, but I'm not on the full dosage of meds for my thyroid plus other problems have surfaced that need treating too!

    Good luck and take.

    TT xx.

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