92 year old test results, cant understand why reduced dose, help please

My Mother who had primary hyper parathyroidism and high calcium levels has had her parathyroid level reduced to normal 5.85 (1.6-6.9) by naturopathic treatment and calcium reduced to 2.52, the endo wanted it to be below 2.5 but that has been done by naturopathy as well. My brother who has enduring power of attorney says naturopathy is voodoo had a call from a doctor at her surgery who suddenly said that her levothyroxine has to be reduced from 75mcg to 50mcg even though her results were on 5 Jan 2017 T4 15.1 (12-22), T3 4.5 (3.1-6.8) and TSH 0.01 (0.27-4.2) no significant abnormalities, no action required! Now my brother has taken away her 25mcg levo leaving Mum with only 50mcg and he is now interfering with her treatment and the doctor has put her onto cinacalcet and my brother is taking away all her supplements. She was on no other drugs, just supplements and levo. She had bradycardia and the hospital reported she had numerous collapses and falls which is incorrect she has had none at all, its all been recorded on reports wrongly and each letter interprets the information in a different way and elaborates on the previous letter. Its gone from one fall to numerous, its pathetic and now they are telling my brother she needs a pacemaker, at 92 and dementia! I have been told to not give Mum any meds or supplements. As I am hypo and was helped on this site onto NDT and reclaimed my life back he doesn't believe anything I say and says the doctors are always right. How can a doctor, who has never seen my Mum suddenly reduce her thyroid. Any ideas would be so much appreciated. Even a social worker rang me today, I am at my wits end, a pacemaker at 92 with vascular dementia and no physical problems, well didn't have before they reduce the levo! They even reported that I told them my father had dementia, I recorded the call and I didn't say anything of the sort. I told them she was seeing a naturopath and I was told to make an appointment with my GP if it didn't work and she would be re-referred. At least I recorded the conversation and played it back to check. A letter was sent out that I had refused Mum a pacemaker! My Mum has always consulted naturopath as did her Mother. I am following her teachings to me since I was a child.

19 Replies

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  • Is your mother sharp enough to direct her own treatment? Then she needs to revoke the Power of Attorney from the brother.

  • I'm not sure that a LPA (or EPA as it used to be known) can be revoked by the donor if mental capacity has been lost and the POA has been activated by the Court of Protection.

    They could be changed or revoked if the donor still had mental capacity and filled in documentation to the CofP to that effect. Maybe ring up the CofP for clarification?

  • I'm so sorry to hear this. My mum is 76 and her gp started messing about w her thyroid meds until her energy was very depleted. With the complications involved (your brother, dementia, power of attorney etc) it sounds awful for you and your mum. As Eddie83 says, it would be great if your mum could change the current arrangements.

    At the very least we all hope to exercise some influence over our own health care arrangements as long as we aren't harming ourselves or doing things that don't make good sense, so it would be empowering for your mum in the long run if she could continue to act on her own beliefs (ie naturopathy).

    Good luck to you.

  • No joint power of attorney? Or is it jointly and severally? Or your brother only? You have no say?

    Doctors can be overly cautious regarding Levo dose with elderly people, but really her results don't call for a reduction, they're obviously going by TSH alone. Her free Ts are too low and reducing her Levo will lower them even more causing more health problems including mental ones which will give more power to their diagnosis of dementia unfortunately.

    The incorrect reporting of what has been happening and what has been said is dreadful.

    What a horrible situation you are in :(

  • The symptoms your Mum is having may well be due to her hyperparathyroidism, the cause in primary hpth is an adenoma and although her pth and calcium levels may have reduced the adenoma is still there, levels also increase and decrease so the last test may have just been taken when they dipped. Symptoms of both hypothyroidism and hyperparathyroidism are very similar which complicates things, kidney and heart problems are common in hyperparathyroidism. The Cinacalcet works very well in keeping levels down, presumably they haven't advised surgery due to her age. Although her natural treatments may work for her they won't cure the parathyroid problem and ultimately this will probably cause further issues. Is she being seen by an Endocrinologist experienced in parathyroid disease ?

  • Thanks for allyour replies, luckily I managed to get an appointment with an NHS endo who is also inclined in the supplement and NDT field. Will let you all know what happens, but I agree that reducing the dose will cause more problems, glad to see that cinacalcet is good. I spoke to Mum tonight about it as she is quite competent and doesn't know she has dementia, I am sure they have to put a label on it when it is mainly her age. my bro has jointly or severaly with my Dad who sadly died in 2012 and my brother suddenly became vitriolic towards me. She was saying that she is quite capable of making her own mind up, she said she didn't have dementia or anything wrong. How nice to not worry about a diagnosis, would only make things worse with worry and stress, at the moment she is happy and carefree, or almost! So she is still able to make her own mind up and she also mentioned that she wants me to have all her things and not my brother, he has no children, is well off and I have her only two grandchildren and no other siblings. I am going to fight this, I have sat by for years now listening to his nonsense.

  • You must sure be so worried as I would be if they reduced my mother's essential medications.

    The doctor is wrong and probably reduced dose due to her TSH alone.

    We are in danger of doctors who adjust according to the TSH and your brother isn't helping your Mum at all. As he as Powerof Attorney he makes all the decisions re your mother instead of the family as a whole.

    thyroid-info.com/articles/d...

    Do the 'specialists' not know that bradycardia is a clinical symptom of hypothyroidism which means the patient needs more thyroid hormones.

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

  • Sending you and your mother love and hugs in waves, just breathe in and receive all the love and care from everyone. You will win this. You are not on your own. Print out all the info sent, highlight and hand to the NHS Endo and/or phone his/her secretary and ask if you can email the endo some info with reference to your mum's health and history and send the info with your professional comments and concerns. I wouldn't mention your brother or his power of attorney unless you have to. Don't mention disputes, stay professional and illustrate your indepth knowledge of your mum's thyroid health and obvious findings and results when meds changed. So clinically this is what happens when Levo is reduced. Stress, everyone is an individual and your concerns are that in your mum's particular case her response shows..... Remember you are not fighting the whole system, just fighting for your mum. You can pretend to be as amazed as any doctor that your mum does not fit the standard model of treatment - but prove she doesn't and so make it evident what understanding and treatment she needs. Good Luck, stay positive.

  • Thank you for all your helpful suggestions and support. I met my old school pals from 44 years ago tonight and I just burst into tears. I am going to record meeting with endo tomorrow, it gives me back up when they get the facts wrong, it gives me confidence when what I know I said is not twisted. Will post result tomorrow x

  • NEVER let your doctor reduce your meds based on blood tests alone. Demand a full examination first.

  • Just to clear up a few things about POA. It is given to an attorney - your brother and or you, by a donor in this case your mother in order to carry out her wishes, decisions as she would have wanted, as is her usual habit, when she is no longer capable of making that decision and it is on a per decision basis when mental capacity is lacking for that decision, not blanket coverage. Mental capacity is deemed to able to understand the question and remember the choices for the duration of the decision making process and it does not need to be for longer. The person needs to be able to understand the consequences of the decision. There are 2 types of POA now, so depends when it was taken out, Financial and health and welfare. Even if POA isn't in place health and social care services should ask family about treatment or services but POA is set in place to protect the donor in order that they choose someone who knows them well and what they would have wanted. With each decision health and social services should ask the client what they want when it becomes clear they cannot make the decision or the decision made clearly affects their health, welfare or financial safety then POA may be initiated in order to safeguard the donor. So if your mother always used a naturopath and had been having a certain treatment regime whilst she had capacity ie she made the choice, then it can be deemed this is her usual habit and any decision to the contrary made by an attorney, health or social services advisor may be challenged and the Court of Protection should back this challenge especially if her past wishes it can be documented, this is where a living will comes in handy. I hope this helps you or anyone else re POA

  • It is an enduring power of attorney and states in relation to all my property and affairs signed in 2001. There is a letter with it from the solicitor dated December 2014 saying that 'My brother, has told me that he is helping you with your day to day financial matters. He recalled that you set up a power of attorney many years ago to enable my brother to formally assist you with your financial matters should the need arise. If you have any questions regarding the power or its possible future use..........'

  • If it is an enduring power of attorney then it covers legal and financial affairs only and your brother has no legal standing on the health and welfare side. It would not be too late to get a health and welfare lasting power of attorney siting you as the attorney as long as your mother understands what she is signing and having a diagnosis of dementia would not exclude her from setting one up. Failing that I would suggest to her that she writes her wishes regarding her health and welfare in a letter so they are perfectly clear. It sounds as if the endocrinologist is switched on, and prepared to listen - brilliant. Accompanying her on as many doctor visits as possible will help should there be any difficulties in the future. Wish you and your mother well

  • PS just re read posts and if the POA was made in 2012 it is likely to be a Lasting Power of Attorney. Has this been registered at the Court of Protection? Because they are not necessarily registered until needed. And you need to make sure it is both types, it may only be the financial one in which case you or your brother cannot have final say on health and welfare decisions. On saying that health and social services should take into account yours and mother's usual wishes and can only overrule if decisions made raise safeguarding issue.

  • It has been a brilliant meeting with the endocrinologist and I recorded the meeting on my mobile so there is no argument. He also wrote it down and signed it. He said that the TSH was low because Mum was having T3 and that is normal. The T4 and T3 results were good and right in the middle of normal. He was very pleased with my Mum. Her parathyroid levels were back to normal, her calcium was still reducing and only just over normal and he was very pleased. I told him I stopped Cinacalcet as it states on the RX list that it can course heart rhythm abnormalities and bradycardia and after I received the cardiologists report I stopped it. He agreed totally with my decision. And, he was very impressed by how the naturopath had improved the results just with the use of homeopathy and nettle tea plus the supplements I always give my Mum. I am also to carry on as before with the supplements. He asked where I got the T3 from and I said I had to buy it in from abroad as she couldn't get it on the NHS or get it prescribed. He was quite happy and increased the thyroid back up to 75mcg and made excuses for the doctor reducing it by saying the TSH was below normal. I sent this all over to my brother and guess what, he still said that he must not have been looking at the latest results! Always has to say something. I have told him he will have to sort out the mess now. He just interfered. He is astonished that two doctors can give differing opinions, I am not nor probably anyone else on this site, we have learnt to do our own research. Had a good day and feeling upbeat now, I hope the doctors feel silly and learn that a trained endocrinologist is actually in favour of naturopathy.

  • Great stuff! So happy for you. Enjoy that your committment to your mum and her health and your knowledge has been proved right :)

  • Just a catch up, I have done a 'formal' letter to everyone involved stating everything that has gone on, it came to 6 pages, I took it over to my Mum for reading before I sent it off and dropped in to doctor. She said 'Why don't I sign it!' So she can still think intelligently and even I hadn't thought of that, so she signed all the letters. So pleased, should be the end of interference, I shall see. Thanks for all your help. I am also seeing a solicitor tomorrow re POA and letter of wishes. x

  • My brother has been very intimidating forbidding me giving Mum her normal supplements and not allowing me to increase her levo back up to her normal dose of 75mc despite visiting her private endo and he confirmed supplements and raise back to 75mcg. he became so vitiolic and accusing me saying I was playing a dangerous game. I even had a social worker ring me asking what I was doing. I was pushed into such a corner that on Thursday I took Mum to a solicitor and he revoked the poa and he is now the neutral poa. Mum was so with it after looking at a book in the waiting room of photos from the 50s. It seemed to brighten her up, not once did she repeat herself and filled out forms on her own. She told him she found my brother domineering and a bully. I burst into tears and just sobbed. I knew then I had done the right thing. But today he texted me saying he is taking me to court, I am a silly crazy woman, I will lose my children. Its very upsetting, I had no choice

  • Just a quick update, I have had to revoke the revocation of the POA. I was put in a corner and was told I would be taken to Court over it. It has been awful since the visit to the solicitor. We all had to see the doctor, after a very stressful and tiring morning and just some bread for lunch and no drink. Mum was very tired and confused after waiting 2 hours to see a cardiologist about a pacemaker at the busy hospital, 2 hours sitting looking at a blank white wall even sent me round the bend. Then rushed home, quick bit of food before rushing out again. The doctor asked her a few questions then said she was incapable of making decisions so Mum has now been registered and my brother will now be getting his POA returned. Because of this two doctors had to sign a form saying that they recommended fitting of a pacemaker and now Mum is on the waiting list at 92 years. I am not happy but there is nothing I can do. Because Mum's accounts are frozen I am paying for food out of my own money. The doctor asked my brother why Mum's care couldn't be shared, he replied that he had a full time job working for himself. He only visits for a couple of hours during the week and gives Mum cakes and a burger! So bad for dementia. So I am stuck again. The doctor didn't even test Mum, Mum admitted she has memory problems and that was it. I thought a test had to be done, it was all over in a few minutes. I asked about why the levo dose was lowered and she said they weren't experts and when the results came in the doctor just saw the TSH was low at 0.01 and lowered the levo despite Mum being under a private endocrinologist.

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