My poor Mum is suffering :-(

Hi just when I get myself on an even track my poor Mum now suffering under an uneducated GP :-(. She has been hypothyroid for 20 odd years needing high dose Thyroxine. Over past few years her amount has been dropped entirely by blood tests from 200 mcg to now 125 mcg. She was severely hypo on initial diagnosis and always felt well on high doses. Now according to bloods and words of GP "your bloods are exactly where I want them to be". I armed my Dad with Dr S book and list of symptoms from this site as he is worried sick about her declining health as am I. GP put list under her notes without a glance and told them they can't blame everything on Thyroid wtf !!!!. She is clearly Hypo:- no energy or motivation,weight gain,thinning hair,facial swelling,cholesterol dangerously climbing,dreadful aches and pains she can hardly walk and has gone from a fit 75 year old to an old woman. He is doing X-rays and renal bloods. How do I persuade him to up her meds before she ends up with heart attack or stroke ?. Any links I could print off re- Levo prescribing would be great as my Dad all ready for battle. She is too precious and it breaks my heart to see her fail due to NHS incompetence. She told GP how she felt but as usual the bloods were the diagnostic tool. How he can't see what is clearly in front of me scares me to death. Thanks guys I really need your help :-(

27 Replies

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  • There are so many places you could go for supportive information and this is a good place to start. There is a small book written by Dr Anthony Toft on behalf the British Medical Association. So your GP should sit up and take note of the contents as he/she is in the same club !!. It's under 5 pounds.

    Check out the name Shaws - in the directory at the top of the page - and you will see many links to very valuable places of information on a variety of topics relating to under-medication.

    Glad your Mum has such good support in you.....when my Mum was struggling I knew so very little about the effects of thyroid illness....and now it's too late......

  • Change your GP, get a second opinion or demand to be referred to a consultant - it's your right under NHS rules. I know exactly how your mum feels as I am the same. My GP has referred me to a consultant as he cannot do any more as bloods now normal. Good Luck.

  • You are totally right to be worried about your mum theres nothing worse than seeing a loved one suffer and feeling helpless.

    The first thing younneed to do is what the other person suggested call your practice manager at the doctors tell he you are not happy with the doctor and you want to see another gp.

    Now and this is the important bit get her to send your mum on referral to a specialist an endocrinologist who will take different tests and get her on the right medication.She needs a specialist docor as gps know a little about everything but specilaists know everything about their own subject.

    Tell them that she has sever memory loss which is a symptom of hypo but play on it saying she is a danger to herself as her memory is so bad and you are worried she might leave the cooker on or something,believe me they are not allowed to ignore something like this they will have to wake up and smell the roses.the other thing to do is to TAKE YOUR MUM OFF GLUTEN,if her hypothroid is because of autoimmune problems which is when the immune system attacks the thyroid gland thinking its an invader then she needs to stop eating gluten because the gluten sets the autoimmune system off first then the thyroid gets attacked.

    This could be why shes had to have her meds taken up and up cos shes still on gluten.So thats my advice write to the or call the practice nurse and get her a new doctor then insist the new doctor sends her to a specialst called an endocronologist ,and whilst you are waiting for all that to happen take her off gluten .x

  • Have just read in your reply about gluten. My endo tested me for coeliac disease and said I was fine, but I think I feel far more ill when i eat bread. Can you have a gluten intolerance without being coeliac?

  • yes gluten intolerance is completely different from coeliac .It easy to find out google the words pulse testing .You take your pulse before you eat gluten then ten minutes later take it again.If it has risen then its intolerance

  • thanks, MissT - I'm going to do cut it out - but what do you do for sandwiches when you want something to east quickly? And I'm going to have a go at the pulse test you write about below.

  • you can buy gluten free bread from sainsbburys just go to the free from section its full of bread cookies anything you want its about 10 perc more expensive but you will find such a difference they even do gluten free icecream.and pizza hut do gluten free pizzas its more and more common

  • google the gluten-thyroid connection

    this will explain all ,the slightest bit of gluten will stay in your system for six months .

    im 60 perc better sinse avoiding gluten and when i do i get imflammation in joints headaches pain naseau and bloating aswell as weight gain that wont shift...yes its gluten i now even have gluten free tomato ketchup bread gravy mixes gluten free cakes gluten free whatever i can find its all at your supermarket .good luck x

  • Brilliant, thank you.

  • Yes you can. I have an intolerance to gluten as proved by the YorkTest. If you feel ill when you eat bread that's a big sign. Try keeping off Gluten completely (not easy!) but it's worth it to see how you feel.

  • Hi, I am so sorry to hear that your Mum has a GP who goes by the book so to speak. Yes her blood tests may be coming back at normal levels and he may be happy that they are where they should be. Mine were the same but when I was complaining of aches and tiredness etc. my GP realised that I actually function better at a slightly higher level, this being perfectly ok to do. Your Mum is most probably the same, she needs a slightly higher dose to make her feel better in herself. If her normal GP doesn't agree to look into this I would definitely look for a second opinion. I wouldn't personally mess with special diets etc at this stage but first make sure she is on the right level of medication for her personally. I hope you can get the right help for your Mum x

  • avoding gluten is NOT messing with a special diet as you put it .gluten has no nutrition infact its the opposite its stops nutrients so please think again by saying to her dont mess...with diets .i strongly advice her to avoid gluten i have attended 4 seminars all about thyroid and gluten ,the reason she probably cant walk is bacause of the inflammatory response from gluten

  • I was simply saying that it might be best to try adjusting her levo dose to see if the improvement happens without adjusting her diet. Sorry for the casual phrasing but I don't think there was quite the need for your response as I didn't mean any offence by my reply missthyroid. I am not knocking that a gluten free diet may help, just saying that sometimes it's best to try one thing at a time otherwise we don't know which has worked. We're all allowed an opinion and it's people like you who usually stop me from going on forums like this. None of us know all the answers so no single opinion should be taken into account without listening to others.

  • I know how you feel!! My poor aunt has been 'borderline' for the last 10 years and is suffering terribly but as her bloods are not wildly out of range she is being ignored. She has osteoporosis that could have been helped if she was on thyroxine and I see the symptoms of hypothyroid every time I visit her, appalling.

  • Can I just ask -how long was she on her high dose of thyroxine? If in he medical records it shows that she was not complaining of symptoms at a higher dose and she was maintained good health at that level for a significant periods of time then i would write a formal letter to the practise stating her dissatisfaction and asking her original dose to be reinstated. Ask them for a written explanation as to why they feel her health is better on a low dose given that (list symptoms and signs that have come into play since they reduced her dose).

    State you wish that the letter be put on her records -this is very important Doctors do not like written letters especially ones that state that a patient was well before they messed with medication for a chronic condition. Give them a defined time period ot reply to the letter. I don't know if there is more than one GP in her practise but if so there maybe a more educated one willing to re look. Either way it is on her record and they know that if anything happens they will be liable. Sorry to say you do have to be this strong to get a change of heart....

    In the meantime i would look around her area to see if their is a more sympathetic surgery that would take her on and treat her more effectively. I did this and it made a big difference. In your letter quote the research that Shaw's talks about and also Thyroid UK have a good pack on this.

    I would also get the list from Thyroid UK of the 'good' specialists, armed and ready so that if your letter produces no joy then you can demand to be referred -you are entitled to be referred to one of your choosing. She may choose to see a private consultant. This is what I did and I have ounfd that the GP's are a lot happier at prescribing and trating when they ahve a specilaist recommending treatment -lets them off the hook of liability!

    Really hope this helps and I wish you every sucess. xx

  • What a brilliant reply

  • That is such good advice waveylines.

    You must not give up on your Mum Shona. I watched mine suffer tremendously but I was so ignorant then and I couldn't help her. Her life was ruined by a "god doctor" and every time I see him I have the most intense wish to scream at him and tell him he killed my mother and made her life a misery. Does no good of course but if only I had known then what I know now. Fight for her as hard as you can and don't give in to a doctors ignorance. Push it as far as you can. Get the facts together and go for it. You will get so much backing and help from people on this list. Do it for all those poor women who have suffered in the past. perhaps, just perhaps, by complaining about this doctor you will have saved many others going through the same thing.

  • I heartily agree with all the above. I had the same experience and have been completely healthy for years on a higher dose of levo than blood tests would indicate. I was fortunate to eventually find a good lady GP who listened and realised that my cholesterol, blood pressure and heart problems all improved dramatically on the higher dose after I increased it gradually on the recommendation of Dr. Skinner. I did, however feel it important to reassure her that I would take full responsibility for remaining on this dose, as it was outside the medical guidelines.

  • Really interesting reading these responses, my doctor refuses to put me back up to 125mg after reducing it to 100 because the blood results were okay, I know I am not well, I have developed sensory peripheral neuropathy and can barely walk and now is spreading to my arms. I find it difficult to argue with the doctor. I have ordered the book by Dr Anthony Tuft and hopefully that might change her mind. Doctors only seem to be interested in test results.

  • Nomumma -have you checked your b12 levels?

  • Thank you all for your supportive comments,means a lot. Has anyone got info I could print off to send to GP re:- T4 medicating with symptoms and that high T4 poses no threat to health if no hyper signs. Also anything on joint pains and rising cholesterol relating to low thyroid output. Thanks,Shona xx

  • this press release shows a lower tsh is ok.......

    endocrinology.org/press/pre...

    G

  • We should not have our meds reduced due to our TSH, it should be adjusted according to our clinical symptoms but many of the medical personnel appear oblivious of this.

    When your dose is too low for you personally - (two quotes follow) this is what happens:-

    January 25, 2002

    1

    If the goal of a doctor is metabolic health for his patient, he has no scientific basis for adjusting her thyroid hormone dose by her TSH level. If the doctor is going to make the imprudent choice of treating the patient with T4 (rather than T3 or a T3/T4 combination), he should be aware of the relevant physiology and treat her on the basis of it. Otherwise, he's likely to ruin her health, as your doctor appears to be doing to yours.

    If the doctor is going to make the imprudent choice of treating the patient with T4 (rather than T3 or a T3/T4 combination), he should be aware of the relevant physiology and treat her on the basis of it. Otherwise, he's likely to ruin her health, as your doctor appears to be doing to yours.

    The TSH level is not well synchronized with the tissue metabolic rate. (Probably most doctors falsely assume that studies have shown that the TSH and metabolic rate are synchronized. But despite my diligently searching for years for such studies, I’ve yet to find them.) Adjusting the T4 dose by the TSH level is like adjusting the speed of your car by a speedometer that's out of synchrony with the actual speed of the car. Adjusting the speed of a car by an out-of-sync speedometer, of course, will get the driver into trouble—either with other drivers who'll object to the car traveling too slowly, or with a police officer who'll object to the car going too fast. And adjusting the thyroid hormone dose by the TSH level gets most patients in trouble—almost always because their tissue metabolism is so slow that they are sick.

    2 Some researchers have reported that as little as 0.145 mg (145 mcg) of T4 suppresses TSH secretion.[2] It takes little cognizance in clinical practice to realize that this dose rarely is enough to keep a patient's metabolism normal. And rarely is this dose enough to free a patient from symptoms of abnormally slow metabolism. If patients are going to have normal tissue metabolism and good metabolic health while using T4, most of them must take a dose that suppresses the TSH level. It’s this fact that mainstream doctors need to come to understand, if they’re going to stop keeping their hypothyroid patients ill.

    web.archive.org/web/2010112...

  • I know EXACTLY how you feel - and more to the point, how your mum feels. I was very very fortunate to have Dr Toft as my consultant when I was first diagnosed and he made me feel I was NOT a neurotic or menopausal woman. Since he retired and I was discharged from hospital care, all the GPs in my surgery could not care less - the blood count is within the "accepted range" (not even had a blood test in 2 years!) - I have asked for another referral to the hospital bu thtey just ask "why" - and tell me to go on anti depressants!! I have exactly the same symptoms as your mum.

  • I agree that Dr Toft is the best, because it is published by the BMA and the Family Doctor Association. Page 88 tells the doctor exactly where her TSH should be.

    I have had exactly the same experience, meds dropped from 150 to 100 and feeling really ill, Cholesterol 9.7 from 4.7 and he would NOT listen until I took the Dr Toft book in, and showed him where I had highlighted page 88 - TSH should be below 1, maybe even as low as 0.2 but definitely below 1.

    It says it in black and white. AND, in red, it says 'blood tests should not be interpreted in isolation and correct medical care will also depend on bareful assessment of symptoms and clinical examination'. Oh, yes!

  • It should read 'careful' assessment! Careful being the important word LOL!

  • I am 54 years old and had partial thyroid op in 1982,was overactive.since then i have been on thyroxine 50mg to start with.Over the years have gone up to 200mg but now 100mg.This lower dose has been determined by a blood test but feel really bad.You get to know your own body and know what works for you,i feel tired, lethargic bones aches feeling low in mood.Dont have the energy to do anything.Ihave a 14 year old and dont want her to see her mum like an old woman.Iknow i have so much more to give in my life just need the energy to get going again. There must be so many other people that struggle and feel that life should be so much better !

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