Help advice needed

Hi all, I have written here before about my poor Mum who has been on the rollercoaster thyroid journey like many. I am at a loss as to what to do next. I had private tests done which show she is low on T3 2.9 pmol/L (range of 3.1-6.8) I have tried seeing a private endo (who was a total waste of space and did not address any thyroid issues - only dished out advice on nerve painkillers) I called the NHS doc yest desperate for help as my Mum is burning from top to bottom, has developed involuntary jerky movements with her limbs and is very confused and obsessed with a situation (blames herself as to why she is like this). I am literally crying out for help but no-one will help us. I am giving her B12 supplements and extra calcium and am awaiting T3 which should arrive any day. I am nervous about giving it to her but I feel I have no choice. All the Drs want to do is label her with dementia. we have been to a&e twice in two weeks and each time they have been useless (oh apart from getting onto the dementia route within two days) Does anyone have any other ideas? Do you think I am in denial that my Mums problems are to do with T3? I am doubting myself now. You have all been really supportive and I am sorry to have to keep coming back to ask the same things but I am so desperate to get my mum back.

It is appalling they endos are playing roulette with peoples lives. Not once have they done blood tests or further evaluation of their own - just go by the GPs TSH / T4 - I have the evidence that she's not getting enough T3 (horizon tests) but they brush it off as not relevant and tell me the results vary during the day... well they aren't going to vary that much are they. Surely as doctors they should be looking at why this T3 is low. They make the situation worse by pushing us away without so much as looking into things. If I had some evidence that the T3 is not the cause I would leave it alone and look elsewhere. She is due to see a psychologist on Wednesday (privately of course as NHS still haven't come back with a date). I wonder what he will do and if anything can be done if the hormones aren't right. Should I contact PALS?-help help help!

10 Replies

  • Hi jcoops. What a lovely daughter you are! Makes me want to cry to hear of the way your mother is being treated. She is definitely hypo with such a low T3. What dose of Levo is she on? When the T3 arrives start her very, very slowly as it is a powerful medication. It is four to five times the value of Levo. Cut up the tablets and start with a quarter for a few days and gradually increase to half and so on, over a period of several weeks. Are you planning to keep her on Levo too or T3 only regime? Check her temperature now, before you start, because it is a good guide of whether she is improving. You will probably find it goes up about two hours after a dose and gradually goes down a little. It should never go over normal. If it does, wait until it drops and then take the next dose. it may be that her temp is already normal but somehow I doubt it.

    Has her iron and ferritin been checked because if it is low in range, she will have trouble dealing with the T3 and may get extra symptoms. Keep it low, until you have a result. Ferritn should be over 70. If it is low, start her on iron supplements. All of this should be checked by your GP and they should give supplemends if needed.

    Why is she seeing a psychologist? T3 is very good for depression if that is the reason.

    I do hope it arrives soon and she improves quickly . Keep us posted.

  • Hi,

    I have tead your post and can empathise with your concren over your mums health. Can i ask if she is been treated for an underactive thyroid or is the doctor saying that she is in range?

    The other thing i wanted to mention is that my eldest brother was having symptoms of dementia, he had a brain mri which showed some dying of the cells. He was told that it was due to the antibodies caused by diabetes.

    Its very difficult to say that low thyroid is causing all the symptoms as many diseases cause this. Has your mum had any other tests for the limb jerking o her other symtoms?

  • I have had terrible problems with nerve pain and muscle pain and stiffness from time to time and in my opinion, for me, it is all down to low T3. My T3 is still in range but low in range and I can really feel the effects so I dread to think how anyone below range is feeling! My pains all disappeared within two weeks of upping my T3 dose each time. My doctor doesn't believe me because my TSH is low but my symptoms correlate with my T3 blood test results and the doses of T3 that I am taking so I can't see that it can be anything else.

    Good luck with your mother. I would do the same thing.

  • Thank you for replying. My Mums TSH and T4 levels have been difficult to manage for a long while - she had RAI in 2010 and pretty much from then they have been altering the T4 up and down. She was once put down to 75 which had an immediate effect - the endo was amazed. Recently she has been on 150 then this was reduced to 125 and last week with the private endo to 100. A couple of months ago her readings were (tsh 8.07) (T421.8) and the following reading the TSH was 14 - this is when the NHS endo put her up to 150. she has had intense burning in her lower back for over a year and we have had lots of extensive tests MRI and CT spect which is 3d - it shows numerous fractures since visiting a chiro and other old age changes but not anything which would cause pain.

    She is seeing psychologist as she is in a bad state of mind (depressed and OCD about blaming herself - pain for a year and the T3 deficit I think. Well thats my hunch. Thank you all.

  • is she definitely low on calcium? If not, adding calcium can block magnesium as they need to be in balance and make things worse. More people are deficient in magnesium than in calcium. T3 should help, but start really low.

  • also don't forget about zinc. I began taking it about a month ago and feel much better.

  • Me too!

  • loved the drug muggers post you put up. I wish i had known about it sooner. i just found out that magnesium counteracts the constipating effects of calcium supplements. WHY don't gp's tell us this stuff????

  • Because they don't know! lol They consider vits and mins to be unimportant. The only time I got any of mine tested without nagging was when I saw a neurologist about 10 years ago. She tested everything! So much so that the lab complained the were running out of vials and I wasn't pumping out enough blood! lol Anyway, everthing came back low.

    Since then I've had terrible trouble getting vit and min tests. My last doctor would only test B12 (serum) and ferritin (no serum iron). And that grudgingly. He couldn't understand why I wanted to know.

    Yes, where these things are concerned, we have to be our own advocates.

    Hugs, Grey

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