Hi all, I posted about a week ago as I thought I’d developed a goitre. I’m not being treated for hypothyroidism and all doctors have told me my thyroid function is fine. However, I’ve always suspected my thyroid (TSH is hovering around 2.5-3 and T3 is nearly always low) as the cause of my multiple issues: multiple food intolerances, fatigues, aches and pains, inability to retain certain vitamins and minerals, unexplained mild CKD, high cholesterol plus other things.
I’m posting now to give an update and have a bit of a rant about GPs.....
I went to the GP earlier this week and told her I thought it was a goitre. She felt it and told me that it wasn’t connected to my thyroid so wasn’t a goitre and she didn’t need know what it was. She referred me for an urgent scan and blood tests. Anyway she then sat me down and asked me (in a super patronising way) ‘ so why is it you think it’s your thyroid?’. I explained and was told well your thyroid function is fine and there’s no link between thyroid and high cholesterol or thyroid and CKD. When I told her I’d read scientific papers showing links, she told me I should be careful what I read.....
In the same apt I also talked to her about my iron problems. I have low ferritin but high iron saturation so am not sure what to do about supplementation. She told me to stop taking iron until I become anaemic again. Marvellous, nothing like preventative medicine. Wait until you get ill before we do anything and suffer the symptoms....
Anyway I had my scan today and, guess what, I have a large thyroid nodule. Funny that!!
I’ve got to go back and see her to discuss this. I’m sort of looking forward to doing an ‘I told you so’ but I know my symptoms will still be dismissed. I am dismayed and frustrated! Thanks for letting me get this off my chest to other people who will understand
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I feel your situation, I wanna trust a gp because they’re all we’re got but it feels like they just don’t want us in there office. Then you have to wait another month to get an appointment which leads no where again
I've always wanted to try the "i'm not leaving ur office til u do something",but they'll probably just call police. And also would stop other people getting their appointments.
I share your sentiments about them calling the police, i’ve been tempted to do that several times due to frustration with their limited know about diseases.
I once said to GP(when I was in a very low point,after being dealt with by MH team-ignored then arrested!),who is now dealing with me,that if she done nothing for me that I will probably have walked out into traffic before I next see her,and that I can predict i'll be dead. Here response was ''are u threatening me''. I now just don't deal with MH team-cos their psychiatrist says I just 'lifestyle choice'(hypothyroid!) and anger(frustration of a crap MH team!)!
I hear you loud and clear. My goiter was so large when I was diagnosed that the endo was astonished my GP hadn’t seen it. It was actually a psychiatrist treating me for post partum depression who said - you have a goiter! You need a referral to an endo! Some of your symptoms are from the thyroid! Amazing!
I have no trust in most GPs when it comes to thyroid. They just don’t know. Good luck with the next visit.
I've been told that sometimes when people sectioned that they do thyroid tests,but bet it's not done a lot of the time. Apparently people with Schizophrenia have high Cortisol levels-in their case,bet it's never checked. Mental health teams are too quick with the prescribe depo injections and out u go!
I’d love a referral to an endo! I’ll see the doctor for a follow up apt soon and see if I can persuade her but I have a feeling my TSH will still be below threshold and they’ll tell me that my thyroid function is ‘fine’!
So true. My friend was ill for several years, doctors were unable to figure out what was wrong with her. It was her dentist that discovered her goitre. She ended up with papillary carcinoma that invaded her lymph nodes.
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.
Politely, but firmly, request that GP tests Thyroid antibodies, vitamin D, folate and B12
Maybe time to see another GP in your practice! I had a very interesting chat with my GP as I am having trouble getting diagnosed at the moment and my last 2 blood test results have been 4.52 and latterly 4.13 ( which they say is normal). I actually said - what is normal about a TSH of over 4? Unfortunately their hands are tied to what the NHS dictates - and it is a postcode lottery as some areas will monitor you at a level of 4 and above - where I am the cut off is 4.5 - so I am now classed as normal! However I am getting a private blood test done next week to check everything including antibodies etc (as SlowDragon suggested) and my GP has said he will do all he can to help if this shows anything. He also said he was having trouble getting further tests done on people who already have diagnosed with thyroid issues - seems TSH is all that can be done here!
I hope that now you will be taken seriously and you get the treatment you need. In some ways I think it's kind of satisfying to think that you are proving you know more about your body than the GP does!
Go for your blood test as early in the morning as possible as I've heard that's when TSH is at its highest (it flutuates during the day). If on thyroid meds, don't take them that morning until after the blood test.
I absolutely understand your frustrations with thyroid and doctors. Even the endos I went to all played off every hypo symptom to some other unknown cause. I saved myself by learning from this website and some good books. After three years post thyroidectomy I'm finally feeling almost symptom free. There's a lot to learn and understandoh, but don't let the doctors convince you you're losing your mind and you're a hypochondriac.
The patient does know more than GPs eventually due to appointments similar to your own experience. That's how many on this forum recover their health, despite hypothyroidism, and being kept within a TSH which is in 'range'.
On this forum we've learned far more than the majority of Endocrinologists and doctors. Once upon a time all of them knew clinical symptoms and we got a trial of NDT. If we improved we were hypo and stayed on this product. Nowadays it is all dependent upon a TSH result, considering it is from the pituitary gland and not the thyroid gland symptoms might be more informative.
My sister had a lump on her neck. Went to see GP and Endocrinologist. They both said she had no Endocrine issues. Her antibodies were sky high in the 1000’s. She changed her Dr to an ear nose and throat specialist. They did a fine needle aspiration... she had thyroid cancer!! It was removed within 2 weeks after months and months battle with GP.
I had to go to see me GP 5 times before they’d test my blood for thyroid issues. They kept saying I had depression. I knew that was rubbish. I was so ill. My TSH came back as 39!! (0.35-5.56). Then I fought for 12 years as still very poorly on Levothyroxine alone. Now after 12 years I have T3. I went privately for T3.
If you mention PALS when you next see your GP you may get a different attitude from her. Even if you don’t intend to go to PALS just mentioning it makes them sit up and listen.
I had a similar experience with thyroid cancer, and I've wondered if it's the pattern for all serious illness.
I saw three or more doctors with my goitre, each time one step up the ladder. All told me that it was definitely nothing but they'd send me up for the next level of testing just as a formality. Then on the day I was diagnosed yet again my appointment was with a Junior medic. When she saw my notes she started to panic and ran out of the room to bring in a consultant.
I do find it quite chilling how so many doctors told me that absolutely nothing was wrong. Not even "Its very probably fine", but completely definite. One even started talking to me about how I might have it removed as a cosmetic procedure, "It's a choice of whether you want an ugly lump or an ugly scar". A very strange sentence, not even a mention that one of those variations means taking thyroid hormone every day!
Sometimes I do believe that doctors are definitely not what the general public they should be.....intelligent!
If you think about most patients wouldn’t challenge what a Dr says. Drs can hide behind that and lots just get away with diagnosing crap.
I’m of an opinion now that I will challenge anything I believe to be in a grey area or need proper clarification. After the past year or more I’ve had I’ll always challenge now and research myself. I’ve been misdiagnosed for 12 years and if it wasn’t for my own intelligence and inquisitive mind I’d still be very ill. If it wasn’t for this forum and the people on here also being equally inquisitive and intelligent we’d all be much worse off with our health for sure.
If things get tricky just mention PALS, even if you don’t intend to use it, It’ll make a difference to their full attention of your condition for sure.
I’ve heard so many stories of medical misdiagnosis and down right negligence it’s really scary.
I agree. The biggest thing I notice is that the role of a doctor in real life is completely different from what we imagine a doctor's role is.
I thought they would try to get people better, but I think really they just want to do their little treatment specialism that they are supposed to do. And then they don't actually mind if you feel better, they only mind whether they've completed their little piece.
Yes definitely. I do believe they are not trained properly in thyroid issues. Mine doesn’t know anything about T3 or T4. He openly admitted this to me and said I had actually taught him a few valuable lessons for his other patients. He didn’t know either there is a DIO2 gene test. I gave him a copy of my positive result.
Scary going forward with any other illness’s we may encounter.
And the possibility of thyroid cancer that isn't treated (in which case a scar is the least of your worries!) Note that thyroid cancer is curable if caught early enough.
Oooohh, my GP felt my neck and said there was nothing wrong either. When I described the way it sometimes felt like a scarf was tied tight around my neck and on occasion I had gone hoarse, he told me they were panic attacks!! (Turns out I had nodules too), but unfortunately for me, he refused to entertain a thyroid problem and I was diagnosed with ME for 6 years!
Ive had the same with my dr but male..changed to a female
No goiter but low ferririn (although in their range low side). Put me on statins rather than higher my dose of Levo because my Tsh levels were good didnt think that my FT3/4 had anything to do with it even though also low in range and refused to believe that low thyroid levels caused cholestral levels to raise. After great advice from here i went armed with printed reports some from NHS website. Funnily enough iron tablets, trial of higher Levo dose for 3 months trial lower statins for 1 month then none for 2 months then more blood tests to check cholestral again 🤞 it works as i made such a fuss lol 🤣
Wish Drs understood more about thyroid problems and how it can make you feel absolutly pants. Also give you more info instead of saying oh you have hypo/hyper here take these tablets and leave you floundering and feeling crap. Thank god i found this site, its taken me a while to absorb some of the info being a newbie but getting there.
Nodules don't develop for no reason. ... Your nodule will improve, or resolve, if you are properly treated for hypothyroid. ... At least that was my experience, and my nodule was quite large. ... Try not to get too upset with your GP. She was trained to think as she does. .... Ask around of friends and neighbors and see if you can find another GP that may be more educated on thyroid issues. ... The best to you.
I was worried about an impending visit to my GP over issues to do with my thyroid and adrenals. Worried I would alienate her and spoil a previously helpful relationship as she is tied to blood result guidelines.
I was given some very good advice on here that confrontation doesn't get us what we want/need as they will just get defensive. Rather, to get her on side. In my case I have adrenal function tests that are abnormal, taken privately, but rather than worrying about whether she will take the test seriously to show her the tests and say that I was adding info to the comprehensive tests she is doing; clearly something is wrong 'but I don't know what' and could she order the NHS tests for adrenal function.
If you can see another GP that may or may not sort out a way forward, or you could try the 'it must have been difficult to locate and scans are more sensitive'...
But your GP will now have to refer you to a specialist for proper assessment of the module probably with a biopsy
That was a turning point for me - had persistent cough and tiredness etc which prompted a scan and discovery of a nodule; and then I had to have half my thyroid out - mercifully the module was not malignant but histology showed clear evidence of Hashimotos disease even though my TSH and T4 were so called normal ( though clearly not normal for me!). One problem is that thyroid function often only gets tested once there are symptoms so there is no baseline for the individual as to what is healthy for them. I was ‘lucky’ because I had a well
Woman test when I turned 50 and 60 and both showed significantly better levels of TSH and T 4 than preoperative levels three years later .
One tip - the surgeon - if it gets to that point and you need the module removing - will probably know nothing about thyroid function as such. So ask to speak to an endocrinologist who does - when it comes to supporting the remaining thyroid ( or compensating for its removal)
Then all your GP has to donos follow their instructions
I was undiagnosed for 15 years even though they tested my tsh every year and it was rarely under 3.5. I was told I had arthritis and the menopause! 4 years on I self medicate and I have no pain or symptoms apart from those of getting older (I'm not as energetic as I used to be lol). I no longer have any trust in the medical profession where I live. I know it would be great to have a good Dr but what can you do?
Having been fobbed off by GPs for 5 years until I’ve now had to make a complaint if medical negligence, I understand how you feel.
Drs here, especially GPs , have very little interest in investigating health problems. Tell them you smoke, drink or eat too much and advice will come pouring out of them, it’s as if they’re robots specially programmed. Anything else, they’re not really interested. I’ve lost all faith in NHS doctors.
I think we should all be taught anatomy & physiology in school and understand how our bodies function.
I told my GP I was having discomfort/pain in the caecum area of abdomen, she replied " You can't have pain in the caecum, it's on the left of the abdomen"! - The caecum is the lower end of large bowel, near the appendix.
I have also had GP issues regarding underactive thyroid function, but have had private consultations with much better understanding and treatment.
I only relate this as most people know their bodies better than many GPs, so don't be fobbed off if you know something is not right with your body. Good luck
We listen because we have been trained from early childhood to follow orders. But really GPs are just people who studied particular subjects in school and college and then forgot most of it - just like the rest of us.
Most of them are hopeless. Keep banging on about how hard they work, give me a break, a hard days work would kill them. Arrogant and lazy. Go to see them with a nail in your foot, they just want to give you a pain killer, try pulling the <deleted > nail out. They're not Doctors really, their triage examiners who pass us onto the real Docs if they find something which is obviously amiss, and even then they miss what's staring them in the face.
Whingeing the other month about the talk of having to publish their salaries, why shouldn't we know what they're being paid, they don't earn it.
To all of you who replied to me, thank you so much! I’m actually quite overwhelmed by the number of replies I’ve had! It’s sad that so many people can relate but I will take on board a lot of the advice. I’ll always be calm and polite with my doctors, not confrontational. I am going to give this doctor a chance because I’ve never seen her before and she may be ok now she knows what the lump is. I wouldn’t particularly want to try another doctor yet as I’ve seen multiple in the same surgery (you don’t get to choose who you see unless you want to wait months) and they’ve all been the same, they’ve all told me my thyroid is fine unfortunately. I’ve seen a gastroenterologist, a rheumatologist, a hand surgeon and maybe one other I can’t remember because of various symptoms I’ve had. All of them have also been similar, I’ve always listed my symptoms and suggested there may be one cause to be told ‘No, nothing’s linked’, and every test they’ve ever done in their particular field has always come up negative. I will continue in my search for a diagnosis, I’m hoping I’m one step nearer now and I’ll let everyone know of progress when I’m a bit clearer. Thanks again everyone!
First step is to get FULL Thyroid and vitamin testing
Just testing TsH and FT4 is completely inadequate
Essential to test BOTH TPO and TG thyroid antibodies, FT3 and all FOUR relevant vitamins
Very important to do any thyroid test as early as possible in morning and before eating breakfast or having tea or coffee. Just water to keep hydrated
Vast majority of patients have to get FULL testing privately.
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get BOTH TPO and TG thyroid antibodies tested at least once .
Come back with new post once you get results and ranges
That’s brilliant thanks. My gp has ordered a thyroid test but it’ll just be TSH so I’d already decided to wait till Thursday and get the full medichecks one when it’s on offer. I’ve had antibodies tested before and they’ve come back negative (about 2 or 3 years ago) but I know you’ve told me before that there are a significant number of hashimotos sufferer’s who don’t test positive for antibodies, maybe now I’ve got the nodule things will be different though. I’ve recently had the vitamins and minerals tested as I already supplement and monitor them, so I may skip that this time. Folic acid, active vitamin b and vitamin d are all optimal. My only problem is iron, I’ve had to stop supplementing iron as, even though my ferritin is still fairly near the bottom of the range, my iron saturation is above range. I’m still foxed about that and the GP wasn’t any help with that.
I have a multi-nodular goitre and my Doctor is supposed to monitor me every two years for any changes. Unfortunately my goitre is because I have graves' disease or hashimoto's I don't know which because doctors have not decided on either. I go through periods of over activity and under activity - but at the moment I am in remission and feel fine. However a month ago I was admitted to hospital with a suspected heart attack which was in fact my thyroid dumping too much thyroxine into my blood stream. I think you need to have regular blood tests to check your thyroid levels and if your doctor doesn't do this pay for private blood tests like a lot of members on this site have to. I am seriously considering writing to my local MP to bring to her attention the dire treatment thyroid patients get here not just in my town but the whole country. People with diabetes are monitored better than us - yes I know diabetes is life threatening but so is untreated thyroid disease - anyway I have had my rant now!
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