Please help

My Mum uses this web site as she has an underactive thyroid. I am at my wits end as to how I can procede with her so I thought I'd ask the experts (i.e. people who have the disease!). My Mum had her Armour thyroid stopped 4 years ago because her hormone levels were too high. Since then she has refused to take any orthodox medication. She is currently very ill with heart failure and the doctors have given her less than a year to live but she is convinced that the medicines they want her to take (statins, betablockers, ramipril and an anticoagulant) will kill her. She blames all her symptoms on her unmedicated thyroid problem and refuses to believe that there is anything wrong with her heart (she has had 2 heart attacks and discharged herself from hospital without treatment). Her doctor will not prescribe her armour or anything except levothyroxane. I have offered to pay for private treatment but she always says she will go in 'a couple of weeks' but this never happens. If someone can't get through to her soon it will be to late, is it possible that she is right and that her symptoms could be reversed by the correct thyroid medication or are the doctors right that she has heart failure and she is going to die without treatment. When ever I try to talk to her she tells me about people on here who have had amazing recoveries after getting the correct thyroid medication and that she will be fine. I am, however, totally frantic that I might lose my Mum for no reason other that a fear of conventional medicine.

18 Replies

  • Why was your mother's Armour thyroid reduced and not stopped altogether? Of course she is right that being untreated opens her up to the possibility of many diseases, heart problems being well documented. Why is she not rushing to take up your offer of private treatment? If she has had enough of arrogant doctors and haven't we all, you could buy Armour from USA. If you send me a PM I will send you the details. It will take about 2 weeks to arrive and I honestly think it is something you could and should do very quickly for her. Was she perfectly well before Armour was stopped? If so, she must remember those days and try to get them back, before it is too late. Obviously I cannot know how bad her heart problems are but starting again on Armour is her best chance.

  • Would you take coventional medicines along side the serrapeptase if a doctor told you too?

  • I understand what you mean, I'm border line hypothyroid but the doctors won't do anything because I don't fit their standards, I was also misdiagnosed with asthma when I actually had pneumonia and I almost died (I could go on like this for a while) but I am scared for you because what you are saying is exactly what my mother used to say. She was an expert in alternative medicines, she read all the magazines, books and scientific papers and selected her medicines carefully, including serrapeptase (which didn't work for her, as is proved by the stroke, 2 heart attacks, a DVT and a pulmonary embolism that she experienced whilst taking it). The problem started like that but because the alternative she chose didn't work she ended up with brain damage. Now she is incapable of making rational decisions (because she trusted and alternative that lied about it's efficacy) and my brilliant beautiful mother is a shell of the woman she was. Please treat all medicines (alternative or not) with caution and make sure you can monitor for yourself weather they are working or not e.g. if you are taking serrapeptase for heart problems how can you be sure it is doing it's job? I'm sorry if I'm lecturing but I'm currently watching my Mum die from heart disese/failure that she got by taking serrapeptase instead of anything else and I'm scared that you will end up the same.

  • She wasn't deficient in anything, she paid for regular tests of blood, saliva, hair and urine whilst she was attempting to treat herself. She ate an increadibly healthy diet and took a whole host of nutrients as well. It is totally true that she is fed up with mainstream doctors, because they have messed her around and misdiagnosed her (and her family) and is uninterested in their views, that is why she started trying to treat herself and now she is paying for it with her life. As I say my Mum was a brilliant woman and I trusted her when she said it would work. I don't want to stop you taking serrapeptase, it's just that in my experience that particular alternative doesn't work. Let me make this clear, her illness is not a reaction to serrapeptase. Her illness is caused by not treating her high blood pressure, occasionally not treating her diabetes, not treating her high cholesterol and refusing to take an anticoagulan. All of these things have happened over the years because she found an alternative that worked. If it worked she stuck with it, if it didn't she tried something else, even if that meant conventional medicine. Then, after stoping her insulin on the advice of an G.P./alternative doctor (who has since been struck off by the GMC) she had her stroke. After that all conventional medicine was evil. Her logic disapeared. My concern is that because the things serrapeptase says it treats are impossible to monitor people think that it works and they only find out it doesn't the way my mother has, when they are irreverasbly damaged. My mum can't walk, dress, wash or cook unaided and is only just managing to use the toilet, it won't be long now until even that little dignity is stripped from her. I understand that you are probably not interested in what I have to say, looking back, even if I had tried I don't think I could have talked my mum out of it, she was so sure she was right, but now I know a little more I also can't just pass by and let someone make this decision without being aware of this story. Sorry for taking up your time. M

  • She has tried almost every alternative medicine in the book, more than I can name, and she believes that they will make her better but she just keeps getting worse. She has been taking serrapeptase and CoQ10 for sevaral years along with countless others like thryocomplex etc. The doctors had to stop her armour completely because she refused to reduce her dose (she said she felt fine but the doctors said that her levels were so high she was at great risk of a heart attack).

    As to why she keeps putting off my offer of private treatment I think it's because she doesn't trust me. She keeps telling me that I'm part of the mainstream and that I 'try to force her' to take regular medicine (I have NEVER done this to her, nor would I ever). The last time I got help for her was just after her 1st heart attack (she is now so ill she can't get help herself because she is so ill, confused and tired) I got a list of doctors from this website and called one of them. I was very upset because she had just discharged herself from hospital without treatment so I told the receptionist what had happened and asked to speak to the doctor immediately. The doctor couldn't have been kinder. He told my Mum that he would be happy to prescribe her armour or erfa but that that right then she had to let the doctors at the hospital treat her to prevent damage to her heart. He might as well have been speaking a foreign language because all she heard was 'let the doctors treat you' and she immediately refused to listen to him. When I asked her the next day if she was sure she wouldn't go back to the hospital even after what he had said she acused me of getting a normal doctor to try to trick her into taking conventional medicine. Consequently when ever I suggest trying to get help she just 'puts it off'. I don't want to buy her armour over the internet because I'm scared that if she has it she will take too much of it like she did last time. I don't want to be responsible for supplying her with drugs that could kill her. I have no idea what to do next.

  • Your Mum could well be right but it is really hard to know

    Do you know what dosage she was taking of Armour because if her doctors were simply going on TSH they are likely to have been very very wrong as on Armout TSH can be undetectable but they mistake this for overtreatment

    You could get armour or its equivalent online and monitor her taking them but only with very very low doses and increase very very very gradually ......its hard to know whether it will be good or bad given her current state though

  • You poor thing - it seems that you are between a rock and a hard place. As RFU said if they were basing their assumptions on TSH levels this may not have shown the true picture. I do not have enough knowledge to suggest anything else, except to send my love and thoughts and hope for a better outcome. XXXXXXXXX

  • She was ill before the armour from the doctor was stoppped. She stopped taking her insulin for her diabetes because an alternative doctor told her that she could try it and see what happened. This resulted in a stroke (not surprisingly) and she was lucky to recover so well. I know that she is taking some armour that she got over the internet before she became really ill but I'm not sure how much. She won't talk to me about her medication and when I ask her she lies to me sometimes then comes clean later. Since the stroke she gets confused easily and I'm not confident about her ability to take her medication correctly (I'm always picking up tablets that she's dropped without noticing) and she sometimes takes her tablets too often because she forgets that she's already had them. She prepares her tablets herself every morning and I don't touch them because when she has a bad day and has to ask me for help she watches me like a hawk, which is really upsetting because she obviously doesn't trust me at all. All I want is for her to realise that without the conventional medicine along side the armour she will die but she just keeps insisting that there's nothing wrong with her apart from the fact that she hasn't got her thyroid medication right. It's been 4 years and now she is so ill. Is she right? Or is she going to die?

  • Given the furthur info i suspect your mother has vascular dementia as a result of her stroke

    and this creates her paranoia and quite honestly i think its far too late to interfere

    i went through similar with my Mother and no amount of talking to her will help the condition varies so much from day to day and they are very clever at covering up etc

    you just need to let her get on with it and detach yourself from the situation because otherwise you might get the blame if she overdoses

    you have all my sympathy because i know just how difficult the kind of situation your dealing with can be

  • I was also about to say that it is her worsening condition that makes clear thinking impossible for her. Some very good advice here, why not buy the armour or another NDT, here's a link giving details of all NDT's, and as a previous poster said all available online.

  • She's a;ready taking armour that you buy over the internet. I suspect she does have some degree of vascular dementia but she has no diagnosis because she won't let a doctor in the house.

  • This is really, really difficult. I would not advise buying Armour for her as if something happened you could face a manslaughter charge. I don't like to be so hard or negative but there's no point in risking two people's lives. As for her mistrust of conventional medicine Armour is truly conventional and has been for many decades. A lot of this is due to the bad attitude of many endocrinologists over many years.

    It's really difficult to know to what extent your mother's cardiac problems has been due to inappropriate / insufficient thyroid medication or maybe too much. One would need to know her full history and signs and symptoms. In any event what has happened has happened, we now have to deal with the present. In which case there is the difficult task of dealing with her cardiac problems and getting good thyroid care. I'm really not sure how this can be done.

    As regards her distress re conventional medicine no doubt previous thyroid care plays a part but also some of it is irrational. Whether this is due to her stroke, just aging or insufficient thyroid treatment is anyones guess.

    The problem is that even if untreated hypothyroidism has played a part in her cardiac problem an elderly person or someone who has cardiac problems has to tred carefully with thyroid hormone. The best approach would be to take cardiac medication as advised and have the Armour with the dosage based on close monitoring of her response, signs and symptoms rather than blood tests. The prime problem we patients have is that many doctors just look at the blood tests and not the patient, they don't care about symptoms. I feel this solution would be the best way forward and it is consistent with the view of most of us patients.

  • I didn't realise it was illegal for me to get her armour if she overdosed herself accidentally. I just didn 't want to buy it because I didn't want to take the chance of making her worse. I am going to try again to get her to see a doctor from here. Hopefully they can get her to understand what she needs because I can't. I don't think her problems are curable anymore but hopefully they can stop her from deteriorating so quickly. (She has gone from an independent woman to someone who needs 24/7 care in under a year). She is moving in with me in a couple of months once we've bought a new house (with a downstairs bathroom) and had it made disabled friendly. Maybe she can be convinced to take the medication and live out her time in comfort instead of the hell that she is going through at the moment.

  • No, its not illegal for you to buy prescription meds for someone in your household. If she takes too much it would be of her own volition.. The section of legislation you need is the medicines act 1968, sections 7 and 13. Have you read the book by Diana Holmes... Tears behind closed doors? A bit religious for me, but you really ought to have a look.....

    Dr mark Starr writes in his book hypothyroidism type II, about heart problems an lack of thyroid. I fear your mother is or react and if she is hypothyroid, statins are not a great idea..

    Xx. G

  • It's not illegal to get Armour for her, just that people do get heart attacks and those that irrationally oppose Armour might seek to exploit the situation. I think the best solution is to find a doctor that will prescribe the Armour, monitor her thyroid condition and hopefully take the advice of her cardiac doctors. This would be the ideal situation, even if the Armour on an incremental basis was started a few weeks before the cardiac medicine. It may be that lack of thyroid hormone is affecting her mental state. This does happen, without sufficient thyroid hormone I am very irritable.

    Previously Amour has been demonstrated to be superior to levothyroxine in your mother's case so I think it is unreasonable to waste time messing about with levothyroxine. I take levothyroxine and do fine on it, I'm not against levothyroxine for those who do well on it.

  • I believe your Mother is correct. She felt awful on levothyroxine (as I did) and when you find a thyroid hormone replacement which makes you feel well, why would you want to go back to one which does nothing for you.

    The problem is that the guidelines of the British Thyroid Association make false statements about natural dessicated thyroid hormones (Armour, etc). Armour contains all the hormones we cannot now produce from our own thyroid and it is more synergystic to the human body than generic levothyroxine. They also state that only levothyroxine can be prescribed.

    Levothyroxine also has had many more recalls due to inconsistencies.

    I can fully understand your Mother refusing anything other than Armour as I felt worse on levothyroxine than before I was diagnosed and had many more clinical symptoms. I wont take levo again - ever.

    I am not sure if your Mother's health can be restored but it is worth a try. If you post another question asking where Armour can be obtained, someone will send you a private message if you want to go down the self-medicating route. Some Endocrinologists might prescribe Armour but they are few and far between.

    There is also a list of private doctors who may prescribe and if you email there may be one near you.

    This was sent to the British Thyroid Association and the Royal College of Physicians and ignored despite 3 requests from Dr Lowe who has since died.

  • You have had many replies and your head must be spinning but this is an excerpt from Dr Lowe who was against adjusting medication according to the TSH alone. He said it had a bad effect on our metabolism. I now believe Dr Toft has changed slightly his viewpoint on the TSH.

    This is an excerpt:-

    A study by Fraser,[44] for example, showed that the TSH and free T4 tests—which Guttler uses—are in fact highly fallible. Fraser studied patients on T4-replacement. Of 108 patients who were free from hypothyroid symptoms—and any signs of overstimulation—53 (49%) had TSH levels below the lower end of the reference range. This was a TSH level that thyroid specialists such as Dr. Anthony Toft have falsely designated a "thyrotoxic" level.[47,p.91]

    The endocrinology specialty has intimidated most conventional doctors into accepting without question Toft’s false designation. As a result, most doctors would have had Fraser’s patients—who were free from hypothyroid symptoms but had low TSH levels—reduce their T4 dosages. Of course, this would have raised the patients’ TSH levels. And most likely, it would have caused them to begin suffering again from hypothyroid symptoms.

    Most conventional doctors also accept without question dogmatic pronouncements, such as Guttler’s, that patients cannot have hypothyroid symptoms when their TSH levels are "normal." Because of this, conventional doctors would blame the new hypothyroid symptoms of Fraser’s patients on mysterious new diseases, like "fibromyalgia" (see Addendum 1) and "chronic fatigue syndrome."[23][24][25]

    Refer to answer dated April 5, 2009

  • Maybe if a very low dose of Armour is physically presented to her she may take it (need to start low if off medication). Love xxx

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