Today, I have an aching body,particularly my back ( have back problems), I am feeling colder than anyone else in my household ( if temperature is below 20°c,I am cold). Currently on 100mcg of Levothyroxine and no blood tests till August and if TSH is still "suppressed "at 0.01 as has been last two blood tests,they're going to reduce the levo again, which will surely make me feel even worse. Since when did doctors stop diagnosing patients on symptoms and making treatment decisions based solely on blood test results. It is a global thing or is it just in the UK? I am sick to death of these so called "experts" thinking they know everything, when in fact they appear to have very little or inaccurate knowledge of thyroid disease. Just want to know what people on here think.
Feeling cold and thoroughly fed up.: Today, I... - Thyroid UK
Feeling cold and thoroughly fed up.
sobs1962
I am sick to death of these so called "experts" thinking they know everything, when in fact they appear to have very little or inaccurate knowledge of thyroid disease.
Join the club! I did have an Advanced Nurse Practioner at our surgery who actually understood that a suppressed TSH can happen when you've been on Levo for 45 years and it's the FT4 and FT3 that are more important. My results used to get flagged to discuss with a doctor, I always asked for the ANP and he used to say "Hello SeasideSusie, it's time for our regular chat about your thyroid results. Your TSH is suppressed, your FT4 and FT3 are in range, I'm happy with that and I know that you're on top of your thyroid". Unfortunately he's now left and I'm stuck with GPs who are slaves to the TSH and refuse to discuss anything else. Most recent experience, when I went for something else, the doctor told me my problem was due to me taking too much Levo and I needed to reduce it by one third. I refused, he kept asking if I was going to reduce it, after the fifth polite refusal he walked out of the room and left me there! Not been back since.
Since when did doctors stop diagnosing patients on symptoms and making treatment decisions based solely on blood test results.
For quite some time, particularly I have found with the younger doctors. it's what they're taught - if your result is within range then there can't be anything wrong with you. Symptoms are ignored. Many times I have been told "I don't know what it is, come back in 2 weeks if it doesn't get any better". You go back and each time they say the same, I think they're hoping you'll get better on your own, give up with them, or shuffle off this mortal coil!
As for temperature, even when my results are optimal I am cold in the house if temperature is less than 21C, in the evening when watching TV it needs to be 22C - 22.5C and I have a fleece blanket over my legs.
Of particular concern at our surgery are the following:
* The fact that I have mentioned B12 deficiency to two people who have told me their symptoms and nothing was being done, they are both now on B12 injections - one had to go private to get a diagnosis.
* A friend's husband's symptoms, including sudden collapsing (even in the road) pointed to mini strokes and no end of GP and hospital appointments have helped him, until he saw sight of one letter which mentioned that an MRI of his brain a few years ago mentioned TIAs. He now uses a mobility scooter and I hope they get him sorted on some kind of medication before he has a stroke big enough to cause irreversible damage.
* My friend fell and thought she'd broken a bone in her foot, GP said it was gout and prescribed tablets for that, a few months later, after many repeat visits to surgery in constant pain she was referred to hospital, broken bones in foot confirmed but too late to do anything.
* A friend went numerous times to the surgery with pain, was diagnosed polymyalgia rheumatica, was on all sorts of strong painkillers including morphine. A new doctor looked at her list of medication, couldn't understand why she had half of them, sent her to a pain specialist, eventually found out she needed a hip replacement and the state of her hip was the worst the surgeon had ever seen. She went private for that.
* And the worst to date is a friend's husband had lost a considerable amount of weight over the last year, doctors couldn't find any reason, not sure if he was referred to hospital but GP was consulted many times, he had a heart attack last week and died, post mortem showed he was riddled with cancer.
I could go on, unfortunately.............
Maybe we're unlucky, I'm sure there are some exceptionally good doctors out there but we just don't have one of them 
It’s very sad and worrying that good GPs are becoming rare.I’ve always wondered, since reading posts here, about the right of patients to refuse a reduction in dosage. Do patients have that right? Tried to google it but only got as close as ‘ the right to be involved in your treatment ‘ or words to that effect. Is it a right or does it come down to a battle of wills?
(I know you’re in Wales. I’m in England.)
Bearo
My understanding is that the doctor-patient relationship is a "partnership" and agreement reached between them. In reality it's probably not like this for many patients. I don't know if they can remove you from their list if you refuse to change your dose.
The doctor I referred to above who wanted me to reduce my Levo by one third for a non-thyroid related problem, is typical - whatever I go for my thyroid seems to be brought up. A typical conversation with my nominated GP goes like this:
GP - your TSH is suppressed, you're overmedicated.
Me - yes, but my FT4 and FT3 are within range so I'm not overmedicated.
GP - your TSH is suppressed, you're overmedicated and need to reduce your dose.
Me - but TSH is not a thyroid hormone, it's signal from the pituitary, the FT4 and FT3 are the thyroid hormones and they are within range.
GP - your TSH is suppressed, you are overmedicated and you need to reduce your dose.
Me - an endo did that back in 2002 because he didn't like my suppressed TSH, he managed to get my TSH scrape just back into range by reducing my dose and my FT4 plummeted and my FT3 was at the very bottom limit of the range. He made me so ill I had to stop working in my own business and be looked after for 2 years by my husband.
GP - yes, you've told me that before.
Me - well I'm afraid I'm not going back there again.
The conversation never gets past that stage. I try to avoid that particular doctor now but if I do see her and she brings it up she ignores me wanting to discuss FT4 and FT3 so I ignore her when she says I need to reduce my dose of Levo.
I have yet to have a test since the ANP has left, but of course when I do have one I will get a call from the surgery to discuss my "abnormal results" with a GP and I have yet to see how it goes, I can guess, and because they're only doing phone consultations for most things now it's going to be even more difficult, I can cope with face to face but they tend to talk over you on the phone, it gives them power.
They are taught little about hypothyroidism, believe that all that matters is TSH, aren't interested in symptoms just numbers. It bruises their egos to have someone who might know and understand about their condition and want to discuss it, I think they see it as challenging them. The ANP was fine, he was willing to have a conversation about whatever you went to see him about if you wanted to rather than just dismiss you as a number on a screen. He is sorely missed.
Thanks for reply, I sincerely hope that I don't end up dead due to misdiagnosis or incompetency, but the current situation in the NHS was described by an out of hours doctor my husband saw last weekend as a "sickness in the system " and my poor husband has had severe pain and swelling in his left knee and calf since February and apart from the out of hours doctor has seen a vascular doctor who says his pain isn't being caused by his varicose veins but didn't know what it was. Has had 2 ultrasound scans to rule our DVT but is currently being treated for gout, thanks to the caring out of hours doctor. Our GP has never seen him face to face and has attempted to diagnose on the phone, absolute joke. I'm currently more worried about him than myself.
How is your iron levels? Freezing cold and aching body thats typical for low iron levels. When my iron is low Im under the blanket with hot wheat bag🙂
I honestly don't know,it's a long time since they were tested,but I genuinely believe it's all thyroid related as have had these symptoms since I was about 8 years old back in 1970 and was only diagnosed in 2002, so my thyroid is probably nearly completely dead, only time will tell but can't rely on doctors to do the right thing.
Strongly recommend you get FULL thyroid and vitamins tested now privately
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
Great and very valuable important information. Thank you. I feel that many thyroid patients are not aware how Important nutrients are to help make our thyroid meds work more Optimal. Dr's either don't know or not well informed about nutrients. This should be taught in medical academia . Thyroid meds and nutrients work in unison. Though Iron Calcium Vitamin D magnesium need to be taken 4 hours apart from thyroid meds.
Can agree. Cold constipated and crappy!!!
I'm like that with the temperature and when it's over 22 I'm too hot. Last tsh was 0.08 the consultant said to stay on 100mg for now. Levothyroxine hasn't really done much for me at all.
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