Hi,My mum is 80. For the last year and a half her Gp has reduced her medication from 100mg to 75mg and then 50mg.
My mum is now falling asleep and tired, she lacks energy and is very achey. She has Copd and osteoporosis as well as underactive thyroid.
I asked her to get a copy of her last couple of years of blood tests and guess what, from the levels not one time was she over medicated. Her Tsh that her gp likes to dose by has been in range constantly and the last 2 blood tests showed she was undermedicated. This last one the Tsh was 5 and the level should be below 3.98.
Her Gp has said he'll test again in 6 weeks.
I'm sure it's because she's old and doesn't question him and I've told her I'll go with her next time.
But can anyone give me links to why they should up her dose and the damage it will cause keeping her undermedicated.
I'm sure I've read it's bad for heart and can make osteoporosis worse but I need to find links to print out. Or if I can send in a complaint and who to.
Any help or advice will be greatly appreciated. Thanks.
Written by
locky8
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An adult patient who… suffers from no mental incapacity has an absolute right to choose whether to consent to medical treatment… This right of choice is not limited to decisions which others might regard as sensible. It exists notwithstanding that the reasons for making the choice are rational, irrational, unknown or even non-existent.
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
ALSO to be found on page two of NG145 This particular statement is extremely important. You have a say as a family member but even more so if you have organised health and welfare POA (power of attorney) If you haven't get it sorted quick and your mother of course has ultimate final say.
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
It seems that although the consensus in practice is for caution initiating treatment (potential cardiac issues seem to be a concern) and slightly lower dosing, medics still keep within range for TSH. They may allow TSH to be a little higher in range than for younger adults on replacement medication but there seems no rationale for allowing TSH to go above range.
(I know we here don't agree with dosing by TSH, but that's a whole other argument to have with under educated GPs! If you can prove them wrong on their own territory, so much easier.)
Fantastic advice in the thread but just to add, there is the option to ask to see a different GP. This one seems fixated on reducing her dose but (as I have found) not all doctors are.
It used to be more helpful than it is now. The source for the table beneath the graph has been put behind a paywall but for years it was freely avaialble. But at least the table is helpful, showing median TSH in healthy people with healthy thyroids for both men and women and for different ages.
The idea that people need higher levels of TSH (and thus will probably have low Free T4 and low Free T3 with that higher TSH) as they get older has never been convincing as far as I'm concerned.
tattybogle has a load of links on the subject of TSH :
I can't add to the advice given already on this page, and I don't know what your financial situation is, but I got tested privately for t3, t4, tsh and maybe vitamins/minerals (I have my own consultant, but in case you can't find one I've put the name of a popular testing place in a different comment because admin may think I'm advertising it) Then go to the gp forearmed. If he persists in his lunacy please change GP's and ask for a referral. Best of luck. xxx
You might find some useful bits to mark up, re how in older adults reduced T3 is associated with increased mortality. Gulp! Might give GP pause for thought.
Hi Locky8, I prompted my GP to respond by being clear that I would hold her responsible for the consequences of keeping me undermedicated and therefore ill. I tried to find a gentle way to put it but as that didn't evoke a helpful response in the end I put it in a letter. Hope you don't need to do this but sometimes having a back-up plan changes our attitude in consultation and creates a situation in which there is a genuine wish to work together to reach a good conclusion. Good luck
I want to do this too. Many years ago I was involved in a ‘class action’. It took twenty years to sort out, so I am not at all convinced even threatening the bu..ers will get us anywhere. I am attempting to learn to strategically outwit them. I hope. Myxoedema would be rare on a death certificate I think. Hypothyroidism unlikely. They will bury their mistakes. I think of my paltry levo only prescription, at best, is only keeping the wolf from the door. It’s not actually making me well, in any shape or form. However, since increasing my D3 (not T3) rather a lot has made a now noticeable difference - I think. Well - would be definitely an overstatement. Just awaiting test results to help confirm or deny.
Hi arTistapple. Light hearted comment - I wasn't thinking of waiting until after dying before holding the doctor responsible!! Seriously though, the comment, not said as a threat but more as "you are forcing my hand by declining to support me in getting the help I need so I have to point out that ... " Having worked in a teaching hospital I am aware that GPs are responsible for our mental health as well as physical, and it doesn't hurt to remind them of that. I do feel sorry for you not being well, I am not either, but an awful lot better than I was. What I find now is that I am contented bumbling along in my little life until brought face to face with others. I think it's a good day if I get up around 8 am, walk the dog and cook something for myself to eat at supper time, which I can't do after about 2 pm as too weary. If I'm with other people and see how effortlessly they manage so much in a day it makes me sad, compassionate for myself. Do you find the same? That you have to compare with how you were, for you on less D3, rather than comparing with others? Btw, one GP I briefly had about 10 years ago encouraged those of us with fatigue to try vitamin D as she had seen someone completely recover on it. Is it vitamin D you are taking? Bye for now
It may be lighthearted and that’s good but it’s very near the truth too. I have had contact with two ‘experts’ recently from different fields in the NHS and so far I am pleasantly surprised. A feeling there is still some life left in the NHS yet. I was wondering if the ‘black hole’ is mainly in the GP component. Pearce and his endos and guidelines (and with their incredibly reductive thinking) have taken some of the pressure off GPs but it’s encouraged the GPs ignorance of thyroid issues - perhaps? I think I might be being kind. Maybe it’s turned out to be one of those situations with ‘unintended consequences’. Instead (because endos wanted the power but now don’t want the workload) we are abandoned altogether.
I find it difficult to be content but I am appreciative of being slightly better.
Yes I do feel sad and envious of other people being able to do things. However having spent so much time in front of the TV for years, I think I might have a skewed measure of what real people are able to do/achieve.
Yes Vit D. Yes there is some speculation about Vit D deficiency being a cause of hypothyroidism in some cases. I think that was on the Grassroots website.
You could ask the GP why they felt the need to reduce the dose when the TSH clearly showed an increase was needed. Then you now have the ammo to counter any arguement she may come up with!
Of the thousands of posts on here, so many are about being under dosed. It seems almost deliberate. What are the medical profession trying to achieve? I know they are fixated on TSH but they should not allow it to rise like this!
I hope you get some joy from the GP, and your Mum improves. I hate how they write us oldies off!
Thank you. I think it's exactly that. They do write off the older generation. My mum doesn't question Gp decisions like I do. She always says well I'll ask the doctor first if I suggest a supplement. The VitaminD they prescribed wasn't even the amount in the government guidelines recommended for post menopausal ladies. I said she needed more. But she said she'd see what doctor said. 6 months later her vitamin D is very low again and she has increased the dose. 😔
Thank you everyone for all your comments ,I really appreciate your help.I have a day off tomorrow so I'm going to print them all out and show my Mum. Then draft a good enail.Hopefully we'll get her dose increased ASAP.
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