How do you deal with GP's?: I not long ago posted... - Thyroid UK

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How do you deal with GP's?

korkykat profile image
34 Replies

I not long ago posted a question and had some very helpful replies, thank you, but I want to know, how do you make GP's listen to you? I know it's a catch 22 question but I am almost suicidal I feel so bad. Gp's won't listen. And on paper I can see why they say this. Give pills- results improve. Tell them I can't function despite their results. No help. 'U r within normal range'. I am seriously at end of my tether. Don't think can go on like this. Sorry for sounding dramatic but other than this community don't know anyone who understands. Sound like a raving loony I know but I'm an intelligent, educated woman who feels stupid now and just doesn't know where to go/what to do. Thank you

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korkykat
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34 Replies

Write a formal letter of complaint to the Practice Manager, list all your symptoms and how the GPs have been ignoring you. Perhaps mention that you think they don't have any knowledge of thyroid disease. That should make them jump.

We all understand how you feel but action is needed. I resorted to formal complaints after being diagnosed as depressed, took 4 years to get a diagnosis. Now have lodged a complaint with the GMC and am not ruling out going the legal route.

Basically you have to take control of your health, read up as much as you can and go the private route if you're able.

merissa profile image
merissa in reply to

Hey cinnamon girl, you still battling then, 4 years, I'm in the same boat you, it's a absolute disrace to say the least, I hope you get some joy. Xx

in reply tomerissa

Hello merissa. Yes, still fighting. Now that I've more energy, strongly worded letters have been composed. It's unforgivable how I was left untreated.

How is your battle going? Health improved at all?

merissa profile image
merissa in reply to

Hey hun, same as you!!! I feel the same as you in terms of letters and polite confrontation, I have other issues going on, which makes it difficult to get a diagnoses, having said that I been told that my blood test ant antibodies are suggestive of hashi,s. I've been treated the same and it stinks. I have give up really, no matter what I do, whether it's letters, proof, or whatever still no joy. Patients are making there adrenals crash even more with the constant battle , when the patient finally has joys getting prescriptive meds or reffered on to a endocronologist, there is a further battle. I have started to help myself. Endocronologist have limited ,muted knowledge when it comes to hashimotos and graves hence other issues in the mix, as you know they waddle in there own canoes. Gynacologist seems to be a good route as they have knowledge in hormone imbalances. As thyroid or autoimmunity effects all the bodily functions, patients should undergo a multidisciplinary approach, but that is costly!!! I will have my day, where I will write to the powers at be that diagnosed me with depression and fybromyalgia. I really getting to the point my symptoms make me angry and anger gives me strength. Lol good luck Jun, glad to see you are taking action, obtw, we shouldn't be treated with scant disregard. Xx

in reply tomerissa

Oh dear merissa, that's tough when you've loads of things going on. Your comment about being angry sounds familiar so make sure you use that to your best advantage. Look after yourself.

merissa profile image
merissa in reply to

Thanks and yourkindself. X

shaws profile image
shawsAdministrator

Do you have a copy of your latest blood test results, with the ranges and post so that members will comment. If not, ask for one to be done and don't take meds on the morning of the test, which you should have as early as possible.

Fruitandnutcase profile image
Fruitandnutcase

While you are doing the things that the others have suggested you can also tell them that you may be 'within range' as they see it but the range is ridiculously wide and that you are clearly not at your optimal point within the range otherwise you would feel well. Have you ever felt good and if so what were your blood results then?

Duchy82 profile image
Duchy82

Its a tricky one im quite lucky i have a very compassionate gp who listens and is open to the thought of a wide range so there is play in how much levo you can take and base it on symptoms.

I believe the suggestion of making a formal complaint would be a last resort as it could damage your already fragile relationship with your gp beyond repair.

You could ask them to humour you and allow you to go up a small amount say 25mcg and that way you could show it will not dramatically increase your tsh and may help with symptoms. I did this several times but like i said my gp was willing to treat on symptoms but it does mean i have to stay within the normal range she did get a little panicky when my tsh was below range and my t4 was over range.

I have always found I'm more succesful if i put my suggestions forward instead of insisting on what i want and i will challenge them if i disagree. For example before my diagnosis my gp went funny about giving me my repeat prescription for the pill as i was obese i had an increase risk of blood cloths i countered that argument with the fact that pregnancy also increases risk of blood cloths. Now obesity never gets mentioned any more not sure if its because of that counter argument or the fact i got diagnosed hypo not that long after :)

I suppose its the coming across like you know your stuff and making it an active discussion about your health in which they don't feel threatened, they have an ego you need to stroke once in a while ;)

korkykat profile image
korkykat in reply toDuchy82

Thank you, and everyone else for your replies. Much appreciated. I will take on board all that has been said. I don't feel in a position to formally complain yet. After all not long since my diagnosis. Just can't understand this 'normal range' nonsense. We are all individuals aren't we? Felt so bad tonight, and low after GP visit cos no help forthcoming, even said goodbye to my dogs. Love them to bits, really couldn't leave them, but just felt can't go on like this. Just want to feel 'normal' again and, well, even functioning would be a good start. It feels like they have given me the levothyroxine, my test results show it's working, so they say job done. Yet my body doesn't feel like that. Everyone on here amazes me with their tenacity. You have all made me feel like I should go back and fight but at the mo, just don't have the strength or the energy. Bless you all though x

Duchy82 profile image
Duchy82 in reply tokorkykat

How long has it been since your diagnosis? Give it time, the longer you have been walking around undiagnosed the longer it can take it took around 1.5-2yrs for me to get right.

Get yourself a good multivit in the mean time and maybe go back to your gp in a month or so with some notes on what you need to know from them and in the meantime read as much info on hypothyroidism on the thyroid uk website and get support from everyone on here if you are struggling, good luck and a big hug!

korkykat profile image
korkykat in reply toDuchy82

Thank you. You are very kind. I was finally diagnosed in October last year. My wardrobe can cater for quite a few sizes now as have been up and down for a few years. I think 7 at least. Didn't get what was going on with me. Thought was peri menopausal. How wrong. I will go back in a month as two months, GP's suggestion, too long to wait. Think you are right re doctor's and their ego's tho. Need careful handling. R u doing ok? X

Duchy82 profile image
Duchy82 in reply tokorkykat

Yes thank you I'm doing fine. I've been back to normal for quite a while now its been nearly 4 years since i was diagnosed and its well managed mainly as the gp lets me manage my levo myself as i said before my gp is really good letting me control how much to take within reason though.

Sc23 profile image
Sc23

I feel your pain, my gp had me on the wrong meds for 10 years. Eventually I asked them to refer the to a private endocrinologist , but she referred me to an Nhs one, I should have been on t3 and t4. Unfortunately like you I am still unwell. I have recently been diagnosed with fibromyalgia, but I am still not convinced . I have now been unable to work for the past few months and now worrying about my future.

korkykat profile image
korkykat in reply toSc23

Hi there! I'm not sure I can contribute much, but wanted to say thanks for your reply and that I feel for you. This thyroid business is truly awful. Who would have thought a little gland could cause so much distress? And more to the point, why do GP's not get this? All I can say, as what the very fine members on this site have said to me, keep fighting, use this site to sound off, get help, whatever you need. I can tell you not to worry, but we all do. Only thing I would say is worry seems to make everything, symptom wise, worse. Breathe! Yeah sounds like crap but someone told me that and sometimes it helps. Deep breaths. And go with it. I can't take it away, wish I could, but I'm here if you need to talk. Xx

Sc23 profile image
Sc23 in reply tokorkykat

Thanks. X

korkykat profile image
korkykat in reply toSc23

Sometimes, or most times for me at least of late, we are all we got!. But everyone on here seems to want to help. And I think, though we all different, we all understand. Take care. Xx

Vickiti profile image
Vickiti

Get those blood test results and when they tell you are within the normal range remember this .... 6 feet is well within the normal range for height - but I am 5 foot 2 and 6 feet would never be normal for me!

korkykat profile image
korkykat in reply toVickiti

Ha ha! Very witty observation but spot on. According to GP's I was 'normal, when I was hyper and now am 'normal' when hypo. Thing is, they never tested me when I was truly 'normal' for me. Cos I wasn't ill then obviously! Catch 22. Xx

RosamundG profile image
RosamundG

I gave up on my GP years ago when she just kept raising my thyroxine dose as my blood levels got lower. Bit the bullet and decided I'd do without something than continue feeling unwell so I went to see Dr. Georges Mouton a private doctor who practices at the Hale Clinic and I've never looked back. I still have some symptoms -- stubborn weight, feel the cold, dry skin and the occasional bout of depression -- but I've got lots of energy, my hair looks great and most importantly he gave me back my joie de vivre and for that I am extremely grateful to him.

in reply toRosamundG

Wonderful news!

Kindly elaborate on the change of treatment and how this has impact the great results that you have been experiencing i.e. are you now on lower dose? additional supps? diet? many thanks

Tarry profile image
Tarry

I printed out the symptom tick list from Thyroid UK and wrote a letter explaining how my life had changed, what I was able to do and now couldn't. I stayed away from the emotional side of things as from reading this website I realised some GPs put it down to depression. I handed the letter in at reception and at the same time made an appointment a week later to discuss. Within 24 hours I'd received a phone call and was listened to and prescribed levo with further blood tests. Sometimes it's easier to stay objective in writing.

in reply toTarry

Great result, well done.

They don't care and never will. The NHS has a system in place that rewards failure and that will not change. You have to use your last ounce of strength to help yourself by self medicating. I did this around the end of 2012 and i can tell you now that if i had not, i would have lost my job, my home ,everything.

Do not waste any more time or energy on fighting the system

Is there another GP that you can go to in the practice preferably young and still keen? I first went to the Head Doctor. Useless. By fluke i saw a younger GP when i went to discuss blood test results one day. He was brilliant. I only see this GP now. He has since told me the only training he had on the endocrine system that included thyroid was half a day. Can you believe that?

Perhaps you should approach this by saying "I feel absolutely awful. I need your help, this is not me. I know there could be lots of different reasons why I feel bad and i can see it can be difficult to make a diagnosis. I am trying to help myself Then say you have been on Health Unlocked. That usually scares them. Could I possibly be trialled for thyroxine?" They seem to prefer it when you make suggestions and ask their advice rather than go in all guns blazing and I will tell you attitude.

I never mentioned the previous doctor to the new one and he did not mention her to me.

Can I also suggest a book called Managing Depression with Cognitive Behaviour Therapy For Dummies. I hate the word depression. Lots of ailments can be shoved under the "depression" umbrella and I am not for one minute suggesting you have depression although it was said to me and antidepressants offered. This book is more about cognitive behaviour and rebalancing your life. It's not a huge read about 180 pages of quite large print and you can skip sections. It's not heavy going and does not bombard you with gobbledygook. I found it interesting and practical.

Good luck

I think switching GP may be the way to go. Unfortunately that is time consuming, exhausting and if you don't move you'll eventually run out of options. Have you done anything to change your lifestyle to reduce inflammation and feel better that way? I'm not denying I'll eventually need meds (in fact, I just started T4 again for the third time) but I pushed back my need for medication for 1,5 year by going gluten-free, and I'm also on a low-carb high-fat paleo type diet which is naturally anti-inflammatory. If you haven't read much on this topic I highly recommend Chris Kresser's blog

I totally sympathise. I've just been diagnosed with anxiety since my worst problem is erratic heartbeat and chest tightness. Other symptoms include over-tiredness, carpal tunnel, arthritis, dizziness to the point when I fall to the ground and almost pass out, very dry skin, always cold and so on! My thyroid tests always come back normal and I'm expected to carry on regardless. I've been prescribed beta-blockers and they'd like to give me antidepressants too, but I'm not depressed, simply fed up to the back teeth of all these symptoms and being treated like a hypochondriac. All I want is to be the person I was! I hope you have better luck in getting a diagnosis than me. X

waveylines profile image
waveylines in reply to

It's a truly tricky one -dealing with GP who do not listen.....even the GMC say so!!!!

I have to say i have found that enrolling for me has worked better than being confrontational -they are a very 'proud' profession and very few GP's like to be told.

I take info ( I know they hate it but hey if they don't know what do they expect) and give a brief synopsis before handing over -I got the little book called I think All about hypothyroidism by Dr Toft -and show them the pages about some people needing high supplementation with suppressed TSH (Dr Toft is/.was Head of the endocrinology society for specialists....) so that can make then think a little.

Failing all of this ( and by then they are seeing you as bit of a problem they can't resolve -no GP likes that ) i asked them to refer me to a private specialist of my choosing which by then they leaped upon -anything to shut me up. And of course i was lucky that they would take the word of the specialist and feel that the specialist was cariying the can if it all went wrong....no liability for them ( important!!).

You may consider moving practice to get the meds you want but you might have to pay for them privately for a while to show them they are safe -you are not going to have a massive adverse response to them.

Lastly you will probably have to prove it is cheaper to treat you then not. This is the argument that you stack up on ls the additional meds that they are having to prescribe: antidepressants, pain killers, blood pressure tablets, laxatives, water retention tablets etc....as opposed to thyroid treatment Essentially if you can prove it is cheaper to treat you with what you need then not, they are much more likely to bite and follow up -money is all after all!! sadly!

Also ensure you get everything on record -ie your requests -polite but not frequent letters stating that you want the letter placed on your medical records is always a worry for GP's -as it is in writing -if they don't act and you have good cause for them to do so then they can't deny down the road when you become further ill. Letter need to be done carefully because if possible you really don't want to rile your GP but get him/her on your side.

What a long saga I know -I do wish it would change for everyone -as it ruins peoples health quite unnecessarily. I really wish you every success -persevere but always be polite and engaging -much more difficult to turn you away.....or say nasty things about you if you do move GP practice....

Good luck. xx

in reply towaveylines

Yes, I understand what you are saying but I will not kowtow, they're paid very handsomely to do a job and if they don't want patients to get better then they're clearly in the wrong job.

My former GP's ego was bruised when I politely disagreed with his dustbin diagnosis of depression and stated that I believed it to be hypothyroidism.

waveylines profile image
waveylines in reply to

I completely agree with you Cinnamon -their ignorance is at the expense of our health......and we suffer as a consequence. Unfortunately we still need them for prescriptions and referrals & that is why I keep them on board -certainly not for their expertise -sadly. The trouble is that in their eyes we are 'better' or 'fine' or we have an incurable condition like CFS which lets them of the hook for everything as far as I can see.

I learnt from bitter experience over a number of years with rapidly declining health to gen my self up and become very knowledgeable on hypothyroidism. There are some excellent books out there. -knowledge is indeed power -and also it is my health and I didn't want the low level of training that doctors receive on the thyroid to interfere any longer with maximizing my health. As others have i have ended up with private treatment and paying for my meds -though in recent years managed to get the meds on the NHS. I know it is all wrong and they should know and the ridiculous guidelines for diagnosis should change but until they do I feel I have to protect myself from the effects on me, my body, of their ignorance.

A recent example was I went to the GP due to a slipped disc in my back which was really painful. The GP was pleased I had arranged to visit to privately see a McTimmoney Chiropractor and offered me pain relief which I accepted as my normal measures weren't working. When I got home and checked the drug online -it clearly stated that it was contra indicated for hypothyroidism.....this was on the manufacturers leaflet and in the guidelines for patients ( which was absent from my pack of meds). Really disgusting -I didn't take them as i didn't want to mess up my hard won health over my hypothyroidism. Shoddy I agree and it continues to confirm my feeling that I have to check out simply everything that i am told/given by a GP.....the world has indeed changed.

So you have all my sympathy and I understand your frustration and anger.. I hope you find a way forward out of this intolerable situation. Don't give in -keep strong.

Tiggertighe profile image
Tiggertighe

Hi korkykat

I know exactly how you feel - frustrating isn't it?

Being assertive and knowledgeable didn't get me anywhere with my GPs.

Being humble and respectful didn't get me anywhere with my GPs.

Being upset, desperate and at the end of my tether didn't get me anywhere with my GPs.

Trying to discuss my many symptoms didn't work - my GPs had an 'explanation' for them all. I would have laughed at them if I wasn't so miserable.

All I was offered for my symptoms, fluctuating TSH and raging antibodies was a 'trial' of thyroxine 25 mcg.

That was 2 years ago and when I said that my symptoms were no better I was 'allowed' an increase of 25 mcg every other day because 'any more and we would definitely be over treating you'. I was refused a referral to an endocrinologist as there 'was no need'. I was refused more blood tests as there 'was no need'.

I considered making a formal complaint to the practice manager about one of the GPs in particular who treated me with contempt and reduced me to tears of frustration several times. However, like many others who have replied to you, I knew it would not help me and that I had to be responsible for my own health. I was not just going to 'fade away' like many others probably have had to.

Like you, I am an intelligent, educated woman with a professional medical background. I did my own research on line, reading books and learning from this forum. I also listened to my body and reflected on my health over the last 10 years (since my diagnosis of fibromyalgia). It all fell into place and I made my own diagnosis.

I did a few private blood tests to confirm this, monitored my pulse and body temperature throughout the day and, because I suspected a degree of adrenal fatigue, made an appointment with Dr P. He confirmed everything I 'knew' and I am now working towards getting better - without the NHS. And yes, I buy my own meds.

We are all different and I don't feel I can give you advice but I hope you find out as much information about this illness as you can, don't accept your GP's concept of 'normal' and take matters into your own hands if you have to.

Take care of yourself and stay determined :) xx

halifaxlass profile image
halifaxlass

After several very frustrating years of trying to get my GP to 'listen' to me I asked on this site if anyone knew a good consultant in my area as I know our local chap is rubbish from a friends experience. Two members gave me the same name, I went back to my GP, said this teatment isn't working & I want a referral. As the consultant is out of my area he tried to put me off but I stuck to my guns, got my referral & 2 years on have finally been diagnosed with deficient HGH so now waiting for an appointment in Manchester to hopefully have this treated & with a bit of luck will finally see an improvement in my health. This has been a very long road but I'm so glad I got stroppy with my GP, he means well but knows jack about thyroid. 'Give em thyroxin & problem solved' seems to be the attitude of many medics but sadly that isn't the case for so many people. Personally I'd do the same again but without any hesitation another time !!

Hope you find your answer soon,

Cath x

stockman27 profile image
stockman27

sorry, this is not going to help . Your GP will just look at your TSH, that is it for the NHS. If you TSH is low, then they will give t4 and if its low they will test for hyperthyroid. Its really simple, that is it for the NHS. You have to go to an endo if you want any more tests and to get there you have to have something wrong with your TSH. If you want to get more tests you have to pay for it your self. As for Natural Thyriod, unless you have a very, very , very understanding GP you aint going to get it. As for T3, I believe its the RCP rules you have to see a endo and that is a very controversial way forward and again you have to have a very very understanding Endo. Sorry to to black but that is the way it is. If you do find a dr that is good and will treat you, I bet the RCP have tried to get him or her struck off.

Good luck and I mean good luck

John C

jaijai96 profile image
jaijai96 in reply tostockman27

My GP has prescribed T3 at my request, now my health is improving and I am getting my "spark" back. Thank God!

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