My records were not amended. : Hi all... - Thyroid UK

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My records were not amended.

Janine159 profile image
6 Replies

Hi all. Further to my.previous post where I had my thyroid review by phone with a gp.I haven't seen before. He was commenting on my cholesterol being high still I said yes but it will come down once my thyroid levels come down. I would rather not take statins until.I see what it's like after .

Thought that was the end of it. But then I look at my online records to see he has put that I have pure hyper cholesterolemia.. This freaked me out after looking it up.as it says genetic and runs in families. Greater risk heart attacks etc..and worried me as no-one in my family ever had heart problems .so why has he put this when loads of hypothyroidism patients have high cholesterol .none of this was discussed with me at the time I wrote to the surgery saying I wasn't happy about this and could they amend the records as misleading and I am not happy with that being there. I expected a call back as addressed it to the Practice Manager . I see nothing has been removed. I am unhappy that my walking mobility issues havent.been addressed so far as the Dr I first saw thought the mobility would get better once my thyroid levels were better. I am on 100 mcg at moment prob been on for a month so far . Have felt pretty rough with lower back pain numbness in my knee and tingling in my upper thigh . Walking has been very bad as my spine felt like slipping out it's a bit better now but still sore base spine. .I had put on weight around tummy abdomen feels like fluid . I thought the surgery would have to answer my complaint not just ignore it . I feel very uneasy about having my care now at this surgery as nothing has been shown in spine scan to show why I have problems walking . I contacted British thyroid association to ask about whether walking would be affected. After waiting two weeks I just had reply saying lots things can cause walking problems thyroid can cause cramps and muscle weakness . They aren't medically trained so can't say. Care is left to general practitioners you aren't referred usually unless hyperthyroid or have serious problems managing it. So that didn't really help. .I do get more advice from here and useful information. Thanks to everyone. X

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Janine159
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6 Replies
humanbean profile image
humanbean

What was your cholesterol and your triglycerides, and the reference ranges?

If your total cholesterol was over the range then doctors will often refer to patients having hypercholesterolemia, rather than just saying high cholesterol.

It would be worth finding out who the doctor was that you spoke to. He might be a Physician Associate. They aren't real doctors, in my opinion.

I haven't been to my GP surgery for quite a long time but have been seen at various times by doctors, paramedics, pharmacists, nurses, nurse practitioners, and possibly physician associates, but I'm not sure about that last one.

What I find annoying is that staff often don't wear name badges, rarely introduce themselves, and don't make it clear what position they hold.

Tina_Maria profile image
Tina_Maria in reply tohumanbean

There has been a lot of controversies regarding physician's associates, especially regarding patient safety and this has been looked at by the BMA.

In October, there has been a vote to phase out PA's and no new ones will be hired due to safety concerns.

bma.org.uk/bma-media-centre...

Insomania profile image
Insomania

It’s your data and under GDPR you have a right to inaccurate information being corrected. If it hasn’t been done, raise a formal stage 1 complaint with the GP surgery. So it’s clear, include a print out if you can and strike through the section you want removed, which were added retrospectively and not mentioned to you in the consult. It’s not ok.

I did this recently on a different matter but I got hold of the GPs referral and it was disgraceful. My complaint was dealt with well. The GP very apologetic, had found training to do to improve his practice. Genuinely could not fault the response.

Tina_Maria profile image
Tina_Maria

As humanbean has mentioned, if cholesterol levels are high in patients, it is often referred to as hypercholesterolaemia.

There are certain genetic conditions, that can pre-dispose a person to familial hypercholesterolaemia (FH). These are:

Low-density lipoprotein receptor gene (LDLR): The most common gene involved in familial hypercholesterolaemia - 93% of cases

Apolipoprotein B-100 gene (APOB) - 5% of FH cases

Proprotein convertase subtilisin/kexin type 9 (PCSK9) - 3% of FH cases

Apolipoprotein E4 (APO E4): involved in transport, use and production of cholesterol - most people are APO E3, but variants are APOE2 (with lower than average cholesterol levels) and the APO E4, which tend to have higher cholesterol levels.

So unless you have been specifically tested for any of these genes above and they have written familial hypercholesterolaemia, I would insist that they correct this.

The average total cholesterol in the UK is 5.7 mmol/l and cholesterol levels also rise with age.

Interestingly, a study from the Framingham cohort found that a drop of 1 mg/dL per year in cholesterol levels over the first 14 years was associated with an 11% increase in overall mortality and a 14% increase in cardiovascular disease (CVD) mortality over the following 18 years.

A U-shaped relationship has been found between total cholesterol (TC) levels and all-cause mortality. TC levels below 5.4 mmol/L are associated with a three-fold increased risk of all-cause mortality.

Janine159 profile image
Janine159

Hi thank you both for replies .my cholesterol has come down with my thyroid treatment. Just still outside reference range. 5.6 I think it was 6.8 I have only been on thyroxine since about may this year .as far as I am aware this Dr trains the junior Dr s they do have a lot of junior Drs training there and I changed to this surgery last November as my last gp.surgery was doing nothing about the walking or rest of my problems the Dr there said I wouldn't find out why unless I was I n a hospital bed then referred me to.a pain clinic but I hadn't got pain. Just could nt.walk literally overnight I was holding onto.walls furniture anything to get across the room . I rang the surgery and spoke Dr by phone who just advised seeing a physio. I decided I was fed up of fighting to be diagnosed . I had just had a operation where my hall stone has worked through to my bowel wall last March felt well after then ten weeks later this happened. . Tho I have signs arthritic changes knee left side and hip I haven't been told by Mri results they are anything other than borderline. No further action. Spine isn't showing anything remarkable they said .to account for problems left side tingling thigh and knee is numb but I walk small steps Don't trust my legs . The Dr put me on thyroid med and wouldn't go into why couldn't walk other than to say it might all come back once I get to right levels. I did address my letter to the Practice Manager. I can only assume hasn't dealt with it yet. May be ten days ago now. This Dr I spoke to didn't like me not taking statins. Laughed at the assumption my walking was thyroid related yet two Drs have told me it can happen one at the chest clinic said so too. Hard to know what's true as noone s checking further. I am not in pain arthritis I don't think aches a bit. Sudden sharp pain foot walking .plantar fasciitis in left heel. Since November too. Thank you for replies. Xxx

Janine159 profile image
Janine159

Hi no not in pain day or night. Just sudden sharp pain foot or in thigh if tried walk say ten steps night time I am struggling as have cough with mucus collecting throat . Also mentioned by few on here that may be thyroid related. Chest clinic referral showed lungs ok the Dr there said you need see ent if it doesn't clear with nasal spray I have had this for over 3 years now had nasal sprays anti histamines nothing helps just coughing at night .left thigh tingling and knee numb there's bit arthritis in knee as had a fall many years back nothing worse than borderline .legs feel tired if try walk need support stick and hubby .more as I lose footing suddenly. Never know when . Thank you for advice it helps to know . I did add in my letter than if pure hyper cholesteraemia is another medical word for high cholesterol that's ok but wasn't mentioned on any previous Drs notes why did he feel the need to put it . When I was starting on thyroxine I had to ask for the cholesterol to be checked after the first one was reviewed .as I wanted to know if it was coming down as I was treated . It wasn't put. On review in August .so I had to tell Dr I wanted it done .next review it was added on but if left to Drs it wouldn't even have been checked .Tho it's now pure hyper cholesterolemia . Wouldn't you think with thyroid mentioned being high they would keep an eye on it then ? Obviously not that bad because it wouldn't have been even noticed had I not wanted to avoid statins.asked them check it. They read the results and there's only me who asked to have it done. They wouldn't know otherwise. . I don't have much faith in my thyroid being regulated properly. This Dr was saying it was ok at 5.7 tsh. I said it ought to be under 1 surely not there yet. I don't think he likes patients knowing too much . I have been in thyroxine and thyronine before and was made ill so have had most symptoms . Don't accept all they say. . Thanks anyway. I don't know why no response yet from practice manager. Usually they ring or send message to say Dr will ring or triage. Nothing at all this time. I was hoping stay at this surgery but seeing diff dr every time and reviews from whoever is on duty. Not great really. X

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