EndoSMACK: Just got my files from my twit GP ..oh... - Thyroid UK

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menothyro profile image
69 Replies

Just got my files from my twit GP ..oh wow hat they write behind your back ..nothing good. My Endo twit says my chance of Thryoid cancer is average..WTF???? I never knew that so I will rub it in her face literally ! I am so p****d off she tells me stop being so anxious blah blah but then I read notes from her to my GP now dismissed and my Ggyno no one ever told me that c**p ...ohhh just wait !!! GRRRRR

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menothyro profile image
menothyro
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69 Replies
Knotty profile image
Knotty

You say, "my chance of Thryoid cancer is average..WTF???? I never knew that".

I would not expect to be told my chance of any kind of cancer was average. I might well want to be told if it were higher than average and it might even be nice to know it was lower but having a statement that my chance is average doesn't really do anything for me.

Why are you so concerned to be told that your chance is average? Is she telling you you are being anxious because you expressed fear of thyroid cancer and therefore telling you that your chance was not greater than average would be reassurance? Maybe telling you not to be anxious about this was her expressing the same thing - that you shouldn't be anxious because your chance isn't something out of the ordinary but is average.

I think you may well be over-reacting.

menothyro profile image
menothyro in reply toKnotty

She had it in her notes.I was never told that! I had my medical files from my ex GP and was reading the notes back and forth when I saw that some of the ways they discuss a patient (me) is almost like the person is an inanimate object and not a human being with rights and feelings! And if I am overreacting in your opinion then you have a right to say that but I have a right to express how I feel and the way i have been treated also :)

It is a good idea to regularly review your files. My ignoramus nhs gp - who refused to prescribe ndt saying she knew too little about it - then went on to write a comment on my files (after i was on ndt sourced elsewhere) saying she thought my anxiety was caused by ndt. A comment she went and inserted off her own back

A comment without any scientific or medical basis - and she is least qualified to know. These NHS GPs are downright dangerous and unethical and dishonest. It is high time they were reigned it, but they keep being given more power. That is why they abuse their positions to the extent we now see

menothyro profile image
menothyro in reply to

Yes they write lovely commentaries about us do they not? Like we are crazy and we are in a sense because this disease drives us bonkers! :)

eeng profile image
eeng

Of course the average person has an extremely low chance of contracting thyroid cancer since it is not a very common disease. According to the cancer research website "Thyroid cancer is quite a rare cancer. Around 2,700 people are diagnosed in the UK each year. Less than 1 in every 100 cancers diagnosed in the UK is a thyroid cancer". 2700 per year out of 66million people is 0.004%. So that's the average cancer risk.

linnet2014 profile image
linnet2014

I feel your pain lol ! Been there with the useless GP and even worse Endo. My GP (ex) actually took me off a treatment regime because my blood work came back OK and I was well. I actually thought that was the point of medication !

I had moved from Ireland to the UK, ( had a superb Irish Endo ) my medication was discontinued and I became very sick again in just a few weeks - GP persisted to ignore the obvious. Eventually saw an Endo who was even worse - they did not even open my file. Was unbelievable !!!

carolr profile image
carolr in reply tolinnet2014

Linnet2004

I suggest you go back to Ireland for a little holiday and see your old doctors over there. Get something in writing perhaps.

Carol

menothyro profile image
menothyro in reply tolinnet2014

I agree with carolr pay them a visit and have you found a decent Doc yet, one who will listen to you and not look at you like you are a nutter ..lol ? Best wishes l2014 XX

linnet2014 profile image
linnet2014 in reply tomenothyro

Got a lovely GP now thankfully. Given up on NHS for my thyroid -I use L Carnitine, gluten free diet and very occasionally take a low dose of Carb for a few days ( I get it on repeat script from Ireland ) My GP knows what I am doing and checks my bloods whenever asked. Working really well and I am pretty much symptom free at last.

Meno, like Knotty says, if it was said that your risk was average, the Endo was probably meaning that the risk for you was no more and no less than for the majority of the population given your set of circumstances. So rather than being a negative thing for you, it at least tells you that it's the Endo's view you don't have a greater risk than normal of developing cancer.

menothyro profile image
menothyro in reply to

sorry not just about that but overall treatment by Endo and GP and I do not appreciate being written about negatively in their babble back and forth either !

Essybabe profile image
Essybabe

I'm not following....had the endo previously told you that you had a higher risk of thyroid cancer?

menothyro profile image
menothyro in reply toEssybabe

sorry for any misunderstanding Eb. I may have written something. I am unsure as I need another FNA had 2 alredy and were not very good or accurate I told the endo since I will be seeing a ENT to take it out why not biopsy it then but she has kept my appt for the 3rd FNA as there is a 20-30% chance of something being missed. I have read some women's stories of FNA's being negative or benign and then when they get the nodule removed and sent to pathology it comes back positive so we can never be too sure

Girlscout2 profile image
Girlscout2

What tests have they done? Do you have Graves disease, something about the way you write makes me think you might have? LOL. I had it too for a long time and I was really annoyed most of the time! Often with good reason, given the way doctors can be, but sometimes it came out all wrong and undermined me (given very few doctors actually understand thyroid disease properly)

I also had thyroid cancer .... they should test your antibodies, a high Tg and TgAb reading in the presence of OTHER signs and symptoms is a clue for thyroid cancer, in which case you'd be given a scan ....If they've already done this, this might explain the note in your file.

I too got my notes from my GP who is creative with his note taking to say the least - however some words and phrases are just 'doctor speak' and don't translate to into normal everyday speech - average risk for Thyca is probably doctor speak. Average risk is GOOD seeing as it's a cancer growing in incidence. HIGH risk would be bad, and if that was on your notes then I WOULD get angry.

Rebecca

in reply toGirlscout2

Glad to see you back on forum girlscout I panicked when you appeared to have left as your knowledge of Graves was very helpful to me x

Girlscout2 profile image
Girlscout2 in reply to

Ah thanks. I got a bit forum-ed out! Needed to take a break ... I just scan the digest report in the mornings when it arrives and have a little look-see. There seem to be way more people who have HYPER on this forum than the other forum that I also skim ...

x

menothyro profile image
menothyro in reply toGirlscout2

lol yes I prolly do have one or both as I was informed I am borderline bipolar..just kidding borderline hyper/hypo and I do write that way when upset anxious or angry which I am a lot these days and rightfully so in my eyes thanks GS :) X

Girlscout2 profile image
Girlscout2 in reply tomenothyro

LOL. Feeling a bit 'pouty' can also be a sign your adrenals are a bit sluggish ... might be worth looking into (and God knows this whole thyroid lark is enough to bugger up anyone's adrenals!) x

menothyro profile image
menothyro in reply toGirlscout2

GS2 Yes adrenals not doing well but Endo's usually slough that off if you bring it up lol. I am currently taking seriphos and on pregnegnolone or pregnelone cream(sorry not sure of the correct spelling) but this comes from an Integrative Medicine Dr. H listens and feels I have adrenal issues and is also looking at the whole of me not just one small part :)

Girlscout2 profile image
Girlscout2 in reply tomenothyro

That sounds good .... x

menothyro profile image
menothyro in reply toGirlscout2

:) X GS2

Mrs_Somerset profile image
Mrs_Somerset in reply toGirlscout2

Hi Girlscout,

Interesting your comment about thyroid antibodies.

I had asked my UK GP to do the test for the antibodies and he refused repeatedly, so I did them privately and came back very hgh - I gave the results to the GP and he told me htat it meant nothing and that they would not treat me any differently.

I had assumed it just meant I had Hashimotos.

We have never discussed Thyroid cancer, and I have never had an examination of my neck ( in 15 years!)

mind you - this is the same surgery who tried to prescribe antidepressants for slipped discs, and who ignored my B12 deficiency ( they ahd results showing I was deficient in 2011) for 3 years until I ended up in a wheelchair and did private tests.

I assume tht I would have distinct symptoms if I had thyroid cancer?

Girlscout2 profile image
Girlscout2 in reply toMrs_Somerset

Hey

I know, it's a nightmare. Did you have high TgAb antibodies? It depends, it's kind of taken all together, did you have high Tg also? And TgAb can be high in hashis, as can TPO. TRAB (or TSI) are only present in Graves (although about 60% of Graves patients have high TPO also). I had positive TPO, TgAb, TPO, Tg and TRAB (the latter are also called TSI) - so I Graves and Hashis = hashitoxicosis. The cancer, I think was suspected when the surgeon palpated my neck, and then I think they found it on an ultrasound and an uptake scan, but didn't tell me til post op after the histology report was in.

As I had such terrible T3 toxicity it's hard to say re symptoms but i had a tightness in my neck, if I look at photos now I look 'ill' - drawn and pinched and tired, you can see the shape of my thyroid sticking out (mine was small and shrivelled) and my neck was very sore with sort of stabbing pins and needles in my neck (which my endo ignored, my surgeon was my third (private) opinon and immediately moved me to his NHS emergency list ... so I think he knew very quickly I was seriously ill)

If you are worried, I'd get a second opinion .... but it's unlikely to be anything sinister.

I'm not sure that answered your question!

Rebecca

x

menothyro profile image
menothyro in reply toGirlscout2

gobsmacked no labs gtg get em..lol :)

Mrs_Somerset profile image
Mrs_Somerset in reply toGirlscout2

Hi,

Thank-you for sharing this info - it is very useful. I have had a few bad days, so apologies for the delay in replying.

I have a tightnessi n my neck/ thyroid, which every now and then throbs like it is trying to break free, and then it is a bit stabby, as though I have swallowed something prickly, but not really pins and needles so probably something else.

I look exhausted - but then I really am, just getting to the bathroom is an epic struggle - I am stuck in bed 99% of the day.

I have high TgAB and High TPOAB - that is what made me define it as Hashimotos - I had to do the test privately as my GP refused, saying it was pointless as even if I had antibodies he would not do anything about it, which I can understand from a levo perspective, but had he bothered testing me at all over the last 15 years, he could have dealt with the other Autoimmune diseases more quickly ( knowing they often go hand in hand - he should have been screening me)

My doc is not freindly so unless I am pretty sure, I tend not to ask him for anything anymore, as he usually says no anyway :-)

Girlscout2 profile image
Girlscout2 in reply toMrs_Somerset

I know of a very good German Endo in London (he's about to emigrate ) but he's working privately now before he leaves. He's a talented diagnositician. I don't know what your chances would be of getting into to see him before he leaves but if you want his details contact me privately. It'd cost about £250 for an hour or so, but if you are insured, he's covered - clinics used to be just on Thursday but as he's no longer working NHS there might be more slots. He is very skilled at diagnosing and he writes kick ass letters. He galvanised my GP instantly ....

You could email him a summary of your situation and take all your tests. He's sorted out a few people I know in terms of getting them the right diagnosis and getting them into the system for the right tests and treatment.

He's the guy who took one look at me and said, 'I don't know how you are still standing up' and this was after the endo I was under declared me in remission due to my blood tests (I was 53lb overweight and unable to move I was on so much carbimazole, but he'd missed the hashitoxicosis so I was spiking T3 about every four hours, that was hypO and hyPER at the same time and it was hell).

If you have pain in your neck and thyroid then in your shoes I'd be insisting on a referral - those high TgAb probably are just hashis, but high TgAb is also correlated with thyroid cancer (before you panic, remember, umbrellas don't make it rain!)

xx

menothyro profile image
menothyro in reply toMrs_Somerset

Mrs S

I get some of those same feelings in my right side where the 1.5cm toxic adenoma is not often but it feels weird and sorta scary also exhausted all the time but have chronic insomnia always trying new meds not liking being on 4 poisins but would never sleep otherwise and hard to function 99% of the time not a good quality of life to say the least :( :) x

Clutter profile image
Clutter in reply toMrs_Somerset

Mrs. S, if you have a goiter or nodule your GP should refer you for an ultrasound scan. Multinodular goiters are nearly always benign but single nodules can be cancerous although it is very rare still. Suspicious nodules will have fine needle aspiration biopsy to check for cancer cells.

My symptoms were almost certainly due to the swinging Hashimoto's but the tumour was compressing my windpipe making breathing and swallowing difficult. I didn't have pain or soreness but I couldn't stand a polo neck or scarf touching my throat. I still don't like my throat being touched. Maybe a 'ghost' thyroid gland? :-D

menothyro profile image
menothyro in reply toClutter

Clutter ??? Are you responding to my initial post as I am dazed and confused but alas that is every damn day! :0

menothyro profile image
menothyro in reply tomenothyro

PS I have symptoms that reflect cancer just so u and I know I want this HELL of a nodule out and prolly the other 3 under 1cm thankyou!

Clutter profile image
Clutter in reply tomenothyro

Menothyro, no I was reply to Mrs. Somerset's post. Have you had Fine Needle Aspirations on the nodule?

menothyro profile image
menothyro in reply toClutter

Clutter k np :) and yes to the FNA. I am due for a 3rd go Aug 28th as the first 2 were not very good the 1st ok the second was well a waste of time ..lol :)

menothyro profile image
menothyro in reply toGirlscout2

GS2 it was still was scary reading some stuff and she never ever actually said it to me in her notes to my ex GP some of the notes also make well me anyway fel dehumanized I am sure I am not the only one who feels that way :) CHEERS X

Anyone you consult has a right to make notes. Any professional person is also permitted to make a judgement on what was said and their interpretation of what occurred during the consultation. You may not concur with the assessment but this does not detract from a persons right to make it.

As to "average" relating to future thyroid cancer, I see nothing wrong with this. No person can tell you if you will get thyroid cancer or if you will not. The term average is excellent to me as it means that you have no aggravating conditions that would speed up thyroid cancer. You are like the rest of us. You can of course research your condition. I have a multi nodular goiter + auto immune thyroiditis (hashis). I have looked up many research documents and all indicate that thyroid cancer is unlikely but if it does occur it generally happens after 17 years following the diagnosis. In the meantime like the rest of the population, I could be diagnosed with another cancer unrelated to the thyroid.

I just wish sometimes that we all acknowledged that GPs are not endocronologists, nor gynaecologists, nor heart specialists etc etc and all their medical actions are prescribed. Sometimes we as patients can bring out the worst in GPs who after all are only trying to do a good job and are subject to bad days like the rest of us. I am of mature years and lived throughout the country and abroad so have consulted many GPs. I have never experienced some of the conflicts that some on this site have. Indeed many have been in conflict with several GPs. It must be awful but if I or anyone in my family were in this position, I would be gently telling them that they must improve their manner and attitude. If I felt attacked and disrespected, I would do my job professionally but would not go the extra mile. I would also be cross that a lay person believed that I was useless.

Girlscout2 profile image
Girlscout2 in reply to

Hey my GP tried to tell me I had bi polar as my 'thyroid results are normal' (in the presence of torrential symptoms), also my world class Professor Endo surgeon, was writing to my GP also disagreeing with him -he was quite firm in his letters! In the end I consulted a consultant psychiatrist to clear up the 'it's all in your head' line of enquiry ... the shrink backed me up 100% and the report was duly sent to the GP.

However, the psychiatrist did say, and it stuck with me, Rebecca you must remember you are a nightmare patient. I was a bit affronted but he explained:

You have a very complex endocrine disease that is beyond most doctor's understanding, you are articulate, you are assertive, you are intelligent, you do your homework, you turn up with academic papers .... GPs are people too, and most would be quaking in their boots if you walked through the door. Some of them are only in the job because they were trying to please their parents, or were trying to prove something, they have failings and blind spots just like everyone else.

Whilst I'm not defending incompetence AT ALL - and in this area of medicine it's rife - it did make me pause and consider that the GP was probably just a person too. Of course they have a lot of power, so they should have lots of oversight. They are also hamstrung by stupid guidelines that trickles down from the top.

My issue with my GP was, I was NEVER expecting him to be an endocrinologist, just to ADMIT he wasn't qualified to comment ....

My tuppence worth!

Rebecca

x

BexyLS profile image
BexyLS in reply toGirlscout2

This is what gets me. Why can't a GP just say. I don't know this area lets discover it together. But instead they just stand with whatever they learnt at med school. I heard somewhere and would love to get the info, that a huge amount of what they learnt in school becomes defunct in 5 years

menothyro profile image
menothyro in reply toBexyLS

Bexls It would not surprise me. I beleive they need to upgrade yearly! :)

Mrs_Somerset profile image
Mrs_Somerset in reply toGirlscout2

Hi Rebecca,

As Holby said, GP's are just people and have bad days. Also they are not specialists.

My issue is with their overwhelming God complex, where they take their bad days out on patients, and even though they are clearly not an expert in specialised fields, they act as though they are and deny patients the consultations with the experts and often ignore the advice of the experts ( as with your letter)

to assume that a doctor is always right and that therefore if there is a conflict it must be the patients fault is outmoded, and substantially incorrect.

It may have been applicable when women were simply cooks, cleaners and baby makers and did not have the right to have their own opinions or even be educated, when only the wealthy were permitted to read and write and education was for the privileged few, but these days that is not applicable and the opinion and feelings of any patient is as valid as that of the GP.

There are a number of doctors who openly admit their patients know far more about this condition than they do.

There are a number of good, confident yet empathetic GP's out there - who can admit when they do not know something, who continue to search for the reason someone is unwell when a test comes back negative rather than simply washing their hands of the patient and ignoring their symptoms, who are happy to refer and take on the advice of others, and who hold the wellbeing of their patients in higher regard than their desire to be on the golfcourse.

However these GP's appear to be few and far between, and the wholesale neglect of patients with a thyroid condition has been escalating for years. I know many people with the condition, some have only had it for a few years, some had had it for decades, and the quality of treatment and support received has declined exponentially over the years, and is now flaky at best, whilst the symptoms and treatment requirements vary a great deal proving a one size fits all approach does not work medically ( even if it is financially prudent)

patients need to educate themselves, through reading, Thyroid UK, forums like this, otherwise they will not receive the treatment they require if they rely on today's breed of NHS GPs

Girlscout2 profile image
Girlscout2 in reply toMrs_Somerset

I agree with all you say, plus they hold all the budgets now so don't want to refer out if they can help it. Consultants can't cross refer anymore either, the patient has to go back to the GP with a specialist recommendation and then get referred out again. My uncle has terminal cancer (what a joke his GP was, he was finally admitted via A&E as he daughter drove him in and insisted a consultant look at him - they ran some tests and in he was in hospital for three weeks, he had three litres (THREE LITRES) of fluid on his lungs which was crushing all his internal organs - GP had diagnosed IBS .. ) and has needed various other referrals relating to other things - hiatus hernia, cyst on kidney etc and it's such a laborious and unwieldy process, and you have to get the GP to agree that the referral is warranted.

I just replied to your other thread, but I've just had a thought, if the pain in your thyroid gets to worrying proportions and you can't get a referral, just go to A&E - explain the antibody situation, they'd probably check you out on the spot.

Girlscout2 profile image
Girlscout2 in reply toGirlscout2

Plus if you know anything about the funding points system (compare points for depression or cholesterol vs points for thyroid, each point is worth about £125!) you'll see why they resist the thyroid diagnosis x

Mrs_Somerset profile image
Mrs_Somerset in reply toGirlscout2

I know what you mean!!!

I came accross that little nugget recently and posted it on HU somewhere.

It explains why the GP's keep throwing antidepressants at patients like smarties! The number of people on all the forums here who have been told to take a few antidepressants and go away, rather than actually trying to find out what is wrong with them is sickening.

Girlscout2 profile image
Girlscout2 in reply toMrs_Somerset

It's terrible ... plus they get a monthly allowance of points for every month that someone is on antidepressants, they get no points for managing thyroid disease ...

menothyro profile image
menothyro in reply toGirlscout2

GS2

I am on 2 antidepressants now and 2 anxiety meds for my insomnia but I do not want to be I hate taking these drugs that I know are not good for me they are poison to the body and mind they rarely work and if they do get too used to them and change up a real not thrilling rollercoaster of a ride lol :) xx

Girlscout2 profile image
Girlscout2 in reply tomenothyro

I hear you, it's a horrible illness ... good luck to you. x

in reply to

I've just splat coffee over my keyboard!!! I'm another of mature years and never have I come across such unprofessional, disinterested and incompetent GPs as I do now. Oh, I forgot, the latest one was downright rude and officious.

It's informed patients they don't like. I will never ever trust a GP again.

menothyro profile image
menothyro in reply to

C_G Agreed! :) X

MrsQwerty profile image
MrsQwerty in reply to

I too am of the older generation and have lived elsewhere in the world but I am shocked that anyone would try and blame patients themselves for the arrogance and ignorance displayed by many NHS doctors. We might not be medically qualified but we often know much more than GPs do about our own condition. We know that GPs are not specialists but unlike most other western countries the NHS does not allow us direct access to specialist so we are at the mercy of the GPs.

10 years ago my husband nearly died from a pulmonary embolism because of an incompetent GP and hospital. Recently the same thing happened again, they insisted it was only pneumonia. It was a private GP who ran urgent evening blood tests and then turned up at midnight with a Heparin injection to dissolve the clots. When we then attended A&E despite my husband having breathing difficulties and chest pains it took an hour to see a triage nurse and 3 hours to see a doctor. If a pulmonary embolism is not caused by a DVT then NICE guidelines state that cancer screening must be done urgently to rule out cancer as a cause of the PE. 7 weeks late this has still not been done so my husband has to pay to have the CT scan and blood tests done privately.

Why should we respect doctors just because they have a professional qualification, respect must be earned. So many people one speaks to have horrendous stories to tell about the unprofessional, unkind and incompetent way they are treated by the medical profession. If doctors do not respect their patients and treat then with compassion then they can expect no respect in return.

menothyro profile image
menothyro in reply toMrsQwerty

Kudos Mrs Q I felt like I was being attacked because I expressed my feelings about my Endo..lol :) 4 u and a X

menothyro profile image
menothyro in reply toMrsQwerty

AMEN!

menothyro profile image
menothyro in reply to

Until you know what you are talking about maybe you should request more info :)

marram profile image
marram

I was on 150mcg of Levo for 23 years after a total thyroidectomy. I was working full-time (even had 2 jobs for a time) and was not perfect but not poorly enough to prompt me to complain.

On my 60th birthday I had to have a company medical as routine. I got a clean bill of health with cholesterol 4.7 and no risk factors for cardiocascular disease. I planned to continue working but my son moved 150 miles away and suggested buying a house for my husband and me to live in nearer to him.

So, I retired and moved, necessitating a change of GP.

Naturally, he wished to do a general check including TFTs. He told me I was in excellent health but was overmedicated. I was surprised and told him so, saying I felt no signs of overmedication. Nonethe less, he insisted on reducing my Levo from 150 to 100 - a third - in ONE step.

8 weeks later I started having TIAs, at least one or two a week. When I went to my GP (still very innocent) he checked my cholesterol. 9.7! So, of course, he put me on statins. Then he put me on aspirin because the statins did not stop the TIAs. Then he put me on PPIs because the aspirin was giving me stomach problems. Two years went by. I was disabled. I went on holiday with my family and spent the whole time watching them having fun. At that point I read that Statins can damage the muscles, also that they were contraindicated for hypothyroid people. So I stopped taking them and told him so. He was not happy because he said my pain and exhaustion was old age. My cholesterol had fallen to 6.4 but of course it rose immediately to 10.2! But he then told me that I was low-risk for heart problems anyway, so not to worry.

Fast forward 5 more years. I was now taking clopidogrel for blood thinning, PPIs for the stomach problems which were the result, Amitriptyline for pain, codeine for IBS, two kinds of asthma inhalers, plus being severely depressed - he tried to put me on anti-depressants but I refused and started investigating. I was still on 100mcg Levo and my 'numbers' were wonderful. All the same, he decided to have some investigations done to see what might have caused my TIAs - yes, 7 years later. Great sense of urgency. Not only that, but because of my persistent cough he had an x-ray done - and it revealed an enlarged heart. Apparently I also had a valve problem. 'Nothing major'. Plus the enlarged heart? - Well, that 'Doesn't matter'.

I started challenging that I was adequately medicated, and demanded an increase in my Levo. I became convinced that my problems were caused by the Levo reduction.

To cut a short story long (!!) I gave up on my GP and saw Dr BDP and am now taking T3-only. Guess what. My cholesterol is 6.2. My asthma is gone. My muscle pain is gone. My IBS is gone. I am not depressed.

My GP is angry with me, telling me that that 'charlatan' will kill me.

Forgive me if I appear to be in any way challenging him or lacking in respect, but he almost killed me.

And he failed to tell me for three years that the 'nothing major' valve problem was actually an Aortic Valve Stenosis. He failed to arrange a follow-up Echo-cardiogram which I should have been having every year.

I had to ask him every month for almost a year before he finally agreed to send me for the necessary follow-up, and I have now been told I am close to needing a valve replacement. And if I had not nagged him constantly for a year? how long before I would have known? If ever, until it was too late?

These are all matters for serious concern.

Peacefullbliss profile image
Peacefullbliss in reply tomarram

Very serious oversight Marram. But some would have us go back to the old days and not scrutinise the actions of doctors. I believe GPs and endos do not understand how to treat the thyroid. As long as they continue to separate out every issue and don't join the dots and bring it all back to the thyroid situations like yours with continue. Glad you got to the bottom of your issues.

marram profile image
marram in reply toPeacefullbliss

Thanks, Peaceful.

menothyro profile image
menothyro in reply toPeacefullbliss

Agreed :) pfb

menothyro profile image
menothyro in reply tomarram

Hi Marram :) As I stated before in a previous pos somewhere..lol be your own best healthcare advocate and PUSH! The Dr's need a shove sometimes and then you might have a voice and if not push elsewhere. It is your human right to have proper healthcare. I am glad you are doing ok that must have been scary ..FEAR mongering should be punishable by ? :) XX

menothyro profile image
menothyro in reply tomarram

WOW marram that is terrible so sorry for what you have been thru but not surprised Dr's like to hand you a scrip for one thing then the side effects cause another problem and so on and so on until you are on 5 or 6 meds maybe more ridiculous!!! I watched a show where a guy was on 9 meds and he juice fasted for 30 days and slowly was able to stop taking them by another 30 days almost completely off and now none at all he continues to do fasts but no that extreme and is in great health. I believe the documentary is called: Fat Sick and Nearly Dead a very interesting watch I would suggest just to see what he went through. I feel for you ! :) XX

oh i didnt know you could get these .ive just sacked my 3 endos as found a doctor who knows more than all 3 put together,they were all smarmy and im right and your wrong, so i would love to see mine as i know they all thought here comes miss know it all,how difficult is it to get them?

menothyro profile image
menothyro in reply to

Hi Natsue I was just handed my files from my GP 's office after I saw the RNP for my pap no fee which was good. maybe it was due to the fact that he (my GP) was leaving his practice for so called personal reasons, Funny, because I had complained about his attitude and arrogance a few weeks prior to getting a form letter stating he was on the way out . I was leaving anyway and still looking for a good GP. I am not sure what the process for you getting your records is but you are entitled to labs and reports if you request them. I got my files from my GP who was decent but retired and pd a little but no hassle in doing so. Just ask and see then let me know I would be interested to hear how that goes :) X

in reply tomenothyro

thanks for that, i do get my test results but they hate doing it..

linnet2014 profile image
linnet2014

Carol I have all my notes, my treatment records etc. I was still on a two month review as my condition was classed as unstable. My Irish endos view was that my only hope of long term health was surgery. This was because I was highly symptomatic on even slightly raised levels yet over responsive to carb. My T4 could go from 38 to 8 within a week on 10 mg Carb !! I was on a regime where I took 2.5 mg Carb every 3rd day. This left me ,100% well. However my new GP tested blood, said it was too end of normal and refused to refer or prescribe Carb! I have a new GP now but I self medicate and am at last very well.

Florence-Ann profile image
Florence-Ann in reply tolinnet2014

Hi Linnet - As a sufferer from an under active thyroid and someone who cannot tolerate any treatment, could you please explain your current treatment regime to me. Are you under-active or over? Is it because you are over-active that I have not heard of the meds you use to treat your condition? I am currently on just 1/4 grain of Armour which is much too low but is the only thing I can tolerate even in this small amount - though this still gives me unpleasant side effects.. I am currently just sitting back and letting everything roll over me because I do not have the energy to go back to my GP (yet again) to try and get some help. Would be very interested to hear from you. Thanks Flo.

carolr profile image
carolr

They don't look at difficult cases or so it seems to me I think I am correct in thinking. The same appears to even Chinese Medicine.

Each doctor takes a stand rightly or wrongly.

His lack of experience: leads patients

to be mislabeled and continue to be

Mislabeled..

They are too easily lead into negative

attributes of any patient. People say go back to you doctor or change your doctor. Once they start saying your psychiatric. They will do nothing for you persistence.

If as in my case I asked my private doctor to tell the NHS doctors to take a running jump. The private doctor can only refer me back to the

GP. The collective negative of the NHS doctors opinion can still reflect

On the way the GP treats you.

Or anyone else.

They can tell your family and friends you are mentally ill they can carry on doing that. Even with positive results... He just ignores those results and so can other doctors.

They can box you into a corner.

I haven't found a way out.

Yet!

menothyro profile image
menothyro in reply tocarolr

CR I believe you will as I feel you are a strong person and well keep on pushing and fighting for your health please never give up or give in. There has to be someone out there who will hear you and hear you loud and clear :) X

menothyro profile image
menothyro

GEEZ someone talks lowly to me and I cannot respond to that poster's reply it disappers WOW UNFAIR! They have a right to an opinion but that is about it I also have a right to oppose that idoicy!

What you are saying is that unless everyone agrees with you then their opinion is irrelevant. You are also rude and if you behave in such a manner with a GP then I am not surprised you have difficulties.

menothyro profile image
menothyro in reply to

Sorry you are way off base there Holby as I said you have a right to your opinion (s) just as we all do on here and if you read some other posts (their own experiences with their GP's and Endo's there is a few not just me that are unlucky and unhappy with the medical care they receive) are they guilty also cause there Dr's were shoddy? I was never rude to my GP more like the other way around !

I am here for support and to help too so if you think I am rude then so be it And again your opinion based on little knowledge of my situation and you are also rude too! EX: as far as my in a nutshell of a post. I am sorry you feel that about me but it appears you have been lucky with your Dr's unlike so many others on here. Kudos to you :) CHEERS!

jezebel69 profile image
jezebel69

If we cant express here where can we?? I have nothing but admiration for you - I'm way too scared to read my files lol The stupid GP who delivered my hypo diagnoses was surprised I was upset at the thought of lifelong meds and actually said 'Dont be silly - its very easily treated' ....15 years later and still not symptom free :/

tuesmum profile image
tuesmum

Hi everyone, I have read with great interest all your messages and am glad yet saddened too that I am not alone with all the "couldn't careless" attitudes that we as sufferers are shown at times. Recently due to having to have major surgeries my thyroid was tested by the hospital who faxed my go saying I had to have an increase in thyroxine. I had been several times to my gp in tears because I felt so unwell, but they wouldn't put my meds up, but the fax stated from my orthopaedics that no wonder I was feeling so unwell my levels were way too low, and with that my medds were adjusted. I still wassnt right even with a 25mg increase, so after my op I had some more tests and my iron and d3 were so low they put me on prescribed meds, which made me feel so great. Now I have been off of them for five or more weeks and I feel awful also they said I had to decrease my thyroid because it was too high according to their figures..... I pleaded with gp not to lower it as felt so well especially with vit d3 and iron but no, and am having to wait till Jan to have another blood test, and feel absolutely beyond awful. I have given up going in between bloods and saying how I feel, because it does not get me anywhere as they have to follow some guidelines. I also suffer with a rare bone condition and have been told that I now need a knee replacement and am convinced that because my vitamin d levels had gone below the guidelines my bones have worn very quickly. I had previously asked for vitamin d prescribed but it was on my fifth time of asking and telling about my pain in my joints which was so different from my regular pain and speaking to my cousin who works with older people, and saying about my unusual pain that I had tests. Why do we have to go in on our hands and knees begging to be helped! I am now just waiting for January to get here so I know where all my levels are. Unfortunately I have been in the medical system since age of three and am now 48, and have seen many drs who act like God and they do not have the right. But when you have been spoken to like you are a complete moron, its difficult to be assertive, but I do say too, please do not back down. I spoke to my anaethestist who worked in bariatrics, because I have put on 60 or more pounds, and that I had been told thyroxine, won't increase my weight, he told me that it was absolute rubbish! He too has seen thyroid sufferers be palmed off too many times to count and that I was not to let GPS fob me off..... I am sick of many drs saying oh thyroid is all sorted with a pill its no big deal!!!! Well it is a big deal and a pill does not sort out a thyroid. I urge everyone to make sure your vitamin D's iron calcium etc are all good.... I felt so well and now feel terrible. Please stand tall. Insist on seeing your notes because you CAN! You are within your rights, and if there is anything you see on them, that is detrimental to your character go and ask why...... We have a right to the correct treatment for illnesses, and a right to be treated with respect, just as we treat them with respect. I do have a gp who is great but is restricted in her guidelines. I have at times increased my thyroxine by myself but it then causes an increase in function and they don't get my actual reading with the prescribed dosage. Its good to read your questions and replies I have learnt so much. Happy Christmas and happy new year to all and here's hoping one day in the near future we will be taken seriously and respectfully. ;-)

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