I walked in and the Dr said to tell her my symptoms etc which I did. She then said "I can tell by looking at you that you don't have a thyroid problem"."
Great start I thought and rather odd as I'm clearly very overweight, have thinning eyebrows, a puffy face and skin so dry it's cracking but obviously those weren't the things she was looking for!
So I showed her my blue horizon results and she said "yes they are all in range". I tried to say that my TSH had gone from 3.06 in Oct to 3.83 in Jan and my Free T4 is only just in range as it's 12.6 (range 12-22) and she said "it's normal".
She then sent me for an ultrasound which showed a bulky thyroid and two nodules on one side, the Dr doing the scan was asking lots of questions about family history and I explained I have thyroid problems on both sides of the family. She said it didn't look like Hashimoto's but my thyroid was enlarged and it often went along with an underactive thyroid, although sometimes labs are in range but she also said it often runs in families.
I then went back to the Dr who basically said ultrasound normal, nodules are fine, asked where I got labs done and I told her, she then proceeded to slag off private blood test companies and said they are ""can be dodgy and unreliable" asked where I got Blue Horizon's details so I told her online, she then said to not pay any attention to thyroid websites as they weren't accurate unless it was Thyroid UK and did I realise that there are a couple of doctors who prescribe privately and are only doing so because they've been struck off by the NHS!! She then continued with what they are doing is not right as thyroid symptoms are very non specific!!! I found this all a bit odd as I hadn't even mentioned private Thyroid Dr's.
So she then sent me for blood tests as obviously she can trust her own, booked me in for 6 weeks and said I'll expect to be discharging you at that appt.
I realise that my labs are not out of range but they are also only just in range and even my own GP felt I was subclinical hypo.
I honestly don't know what to do now she's made me feel really stupid and I keep thinking why do other countries treat a TSH over 3 and low normal Free T4 levels if there's no benefit to it.
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Munchlet
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Ugh! How kind of her to use the consultation to expound her dodgy views on private labs, private doctors and thyroid sites. If she wants to lecture it's a pity she doesn't get a teaching job but lets all hope she doesn't try to lecture on thyroid!
Sorry you ended up with a doctor who doesn't get it that your low FT4 and high in range TSH are likely to be why you are symptomatic. I think you'll have to accept that you won't get a diagnosis and treatment on the NHS until TSH is over range or FT4 below range. You might find a private endocrinologist who will treat when TSH is >3.0.
Blimey! That's legally slander about Blue Horizon and private doctors. Ought to be sued. Next time record it. Might be worth getting Louise's list of doctors and endos with a clue. I would refuse to see her again and complain to her bosses that she makes staements that could involve the NHS in legal action. She can think what she likes but shouldn't inflict her own political views on patients.
What a touchy oversensitive b*tch. You need to kick ass a bit more if you see her again, which I hope you don't. This is an endo, yes ? Do send her details to LouiseRoberts so that she can be put on the 'bad hombres / mujers list'.
Unbefreakinlieveable. Chin up and forge on. You have TUK and HU behind you. Read up on your condition and you'll soon be the expert - she likely specialises in diabetes and you'll know more than she does about your condition. xx
Thank you for the replies, I just spoke to my husband and he was shocked said he couldn't believe she was so dismissive. Just looked her up and she's not even a Dr she's a nurse!! I am going to refuse to see her again, I've asked Louise for a list of private endo's/dr's and my husband has said we will pay private as it needs to get sorted. To be honest I suspect I've got other things going on as I've always suffered with IBS which is a lot worse lately and I expect there's some intolerances there so in a way it would be good to see someone who looks at the whole picture and can address any additional issues at the same time.
The other funny thing I forgot to add is she examined my thyroid and said "feels normal to me but I'll send you for an ultrasound". I did say I thought that was odd as two doctors at my surgery had said it felt enlarged to which she didn't reply and then low and behold the Dr doing the ultrasound said it was bulky and she could see two nodules!! It does make you wonder how much she knows about thyroids! She wasn't very nice, she was careful not to name companies/doctors and didn't refer to Blue Horizon direct or just said some of them can be dodgy and unreliable and then had a rant about the private doctors. I suspect she knows full well she could be held to account for some of her comments and chooses her words carefully!. I think I might go back to my original GP as well just to let her know how I felt and even discuss the possibility of starting a trial of something. She seemed a lot more receptive to the fact that I have a thyroid issue than this nurse did!!!
Thanks for the support, it never fails to amaze me how people who are meant to be helping you can be horrible at times.
You can still make a written complaint about her comments pointing out the 3 other medical staff including 2 doctors thought your test results were not good and thyroid was enlarged. Don't expect anything to happen though unless lot of other patients take it upon themselves to make complaints.
In regards to Blue Horizon - they use a lot of different labs depending on what the particular test is and where you live. I know one of my many tests was done at an NHS lab doing private work.
Why would she send you for an ultrasound if she said it felt normal...she sounds like she is giving out conflicting vibes. And how come you saw a nurse if you thought you were going to see a Dr?
Since the person you saw was a nurse rather than a doctor, she won't appear on the medical register at all, so I can't see why she was so high and mighty.
I can guess which two doctors she was referring to.
One, Dr Skinner, was never struck off, and he was exonerated every time other doctors complained about him. Patients never complained about him, they really liked him, it was only doctors who hated him for getting their problem patients better. Dr Skinner died in 2013.
The other one she's referring to is probably Dr P. He gets mentioned on here a lot and people are still seeing him privately. He voluntarily gave up his medical license and started practicing as a non-prescribing consultant on metabolic, thyroid, and adrenal problems. He has been suffering from increasing ill-health in recent years, but still sees patients when he can.
I did wonder if one of them could be Dr P but I have to say I've only ever read positive things about him and as you say as a nurse she really has no right to be so judgemental!! It's a shame that the NHS are so out of date with their treatment as I'm no expert but even sitting there today I honestly felt like I was as knowledgeable as her about the Thyroid and to say she could tell I didn't have a thyroid problem by looking at me is unreal. I guess the NHS can do away with all their blood tests as they just need her to cast her eye over everyone.
Dr P is a life saver. He gets endlessly mentioned because he gets good results. He puts most GP's to shame! He listens and treats the cause, not 'symptoms'. And as 'Humanbeing' it is other, so called Dr's, who cause these few brave people, who are willing to put their heads up above the parapet to stand up for us 'lost souls'. We owe them so much. `Unfortunately Dr S is no longer with us, and I believe he was making some headway for our cause. Dr P is not a young man and I fear he finds it hard to travel these days to his 'out clinics' around the country. There is a lady Dr that I have heard about, I'm not sure if she is in Wales or out that direction, a Dr S M? Again,I believe she has been hauled before the medical council on different occasions for 'doing her job'. I hope and pray that there are others coming up behind these lovely people, for all out sakes. My faith is this so called 'caring profession' is almost gone! I am holding onto the hope that there are some 'good' Dr's still out there, who's hands are tied by 'governing bodies' imposed procedures, that have to be followed, but who might just one day find some b*** and stand up for themselves and their ethics, and in so doing so, stand up for us. Good luck.
Your not the only one struggling with this, I now live in Scotland after living in the U.S for a while and the difference in thyroid care is enormous. Most GPs in the UK are totally anal and lack any medical expertise about this complex condition. I've worked in the NHS for years before moving to the U.S and since coming back I can tell you it's ended up like 3rd world healthcare and any autoimmune condition and thyroid care is a very low priority. I can't get proper medical management here also and I can't afford private tests and meds. My GP won't even refer me to an Endo. Specialist as he says I'm in range (???)... So like you , there are many of us having an uphill battle so rest assured, don't feel stupid.
So sorry to read this twinmommy it's so frustrating and must be even worse for you because you have experienced the difference in care and also having worked for the NHS and seeing that it's a low priority. I do fully appreciate that the NHS are incredibly stretched and they have to prioritise but from what I've read the Thyroid is actually responsible for a lot of other add on health problems and it does seem that in the long run they may be able to save money if they prescribed thyroid medication more often!
Your right! In the U.S they call thyroid disease the cornerstone for a journey of ill health and that's why it's taken a lot more seriously to prevent a myriad of other illnesses...Plus health insurance companies there want thyroid conditions sorted quickly to prevent further expense of other conditions caused by low maintained thyroid healthcare so push medics to deal with it. If British medics suffered from it, they'd have a whole new mind set especially trying to do their job feeling totally crap and as though your wading through thick treacle a considerable amount of the time.
Try telling him you want a second opinion - from a reliable endo - I could be wrong but I thought anyone would be entitled to a second opinion. If your levels are at the higher end of the range, and you have symptoms it might indicate that you have low adrenal function which may be inhibiting the 'uptake' of your hormones/meds.
I bet you didn't get the test first thing a.m. when your TSH would have been at its highest.
You cannot communicate with people who are not knowledgeable about their 'expertise' in whatever they decide take up as a profession. Nor people who are brainwashed that one thyroid hormone replacement will work for everyone. Believe untruths!!! Scientific research has shown that T3 added to T4 improve patients' wellbeing.
You can tell her that you have followed recommendation by NHS Choices for information about dysfunctions of the thyroid gland and also you are probably more au fait with how we actually feel if not on an optimum dose of whatever thyroid hormones we take.
No I didn't Shaws it was about 1pm so I did think that probably wasn't the best time but I also think my TSH could come out at 6 or 7 and she'd still brush it off, I bet you have to be over the 10 for her to even consider treatment and even then she'd probably just tell you it wasn't your thyroid!!
Yes, you are right about 'brushing off' as in the UK the awful guidelines of the BTA suggest 10 has to be reached for prescribing when newly diagnosed. While other civilised countries will prescribe when TSH is around 3+. Some doctors will prescribe if the TSH goes above the top of the range (which is around 5).
Once upon a time doctors used to give us a trial of NDT (natural dessicated thyroid hormones- the word natural only means it comes from pigs/cows) until we felt better and continued increasing until we were symptom-free. Now they are 'modern' it's all on blood test results and not patients disabling clinical symptoms.
I wonder what were the symptoms she was looking for? Sprouting two heads? You're not the stupid one here. You did your homework and she didn't like it. Are you not getting any thyroid treatment at all? Have you thought about self-medicating? You'll get much better advice from this forum than from the so-called 'expert' you saw.
To be honest Scazzoh I did wonder, obviously there must be some unknown symptoms of hypothyroidism that only she knows about and can see! I think as a last resort I would look at self medicating. Obviously I'd rather just find a doctor that is open to the idea that thyroid meds might help and maybe just let me do a trial and see how I get on.
If I was a betting woman I doubt she could name half a dozen clinical symptoms. You can tick yours off and send a copy saying that you have joined HU Thyroiduk.org.uk who are the NHS Choices for information about dysfunctions of the thyroid gland. and are finding support and advice from those who have gone through the rigmarole of trying to get a diagnosis.
Interestingly enough shaws I've looked up her profile and she specialises in diabetes!!! I think that says it all really. Why on earth is she diagnosing or not diagnosing thyroid conditions when her speciality is a completely different area of endocrinology!! Thank you so much for that advice I am not going to let this go I honestly think at least a trial of thyroid meds would be worth trying. At the moment my Free T3 is ok so I would probably do ok on a trial of T4 meds and hopefully it would resolve a lot of my problems. I love this site, when I came back from my appt I honestly thought I'd just put up with it and carry on but now after the responses I've received and the advice and support I'm determined to get this resolved Thank you
You will find that Endocrinology covers Diabetes and Thyroid and unfortunately the latter seems to be the least informed as they've been given directions by the BTA and follow them. Unfortunatley it doesn't improve our health. As I stated if people do well on levo they're not on this forum, so if she has treated 'successfully' (meaning the patients were fine on levo} she assumes that there's something else wrong with us. I have looked at the BTA and they have changed their guidelines, they no longer state (as far as I can see) that TSH is to be 10 but it certainly was in the past. Probably they don't like our forum as we kept mentioning their awful guidelines.
If we have a dysfunction of our thyroid gland, everything in our body is affected particularly brain and heart, so we have to take the 'bull by the horns' (so to speak) and make sure our body has what it needs when deficient.
Where doctors have been compassionate and concerned and used the method they were trained in as students, suffered because they treated patients as they were taught, signs/symptoms only. This is a link from a doctor who wasn't afraid to stand-out in the crown and tell the BTA they were wrong but he died of a stroke after appearing before the GMC about 7 times. This is an excerpt:
This book was written to draw attention of the medical profession to a major faux pas in the care of patients with hypothyroidism. This arises from the inexplicable refusal of the medical profession to recognise that patients can suffer from hypothyroidism when the thyroid chemistry is deemed to be ‘normal’ if the free thyroxine or the thyroid stimulating hormone lie between 95% reference intervals. There is a further problem that when a patient is diagnosed as hypothyroid many patients receive too low level of thyroid replacement through servile reliance on thyroid chemistry with (often) cavalier disregard of how the patient feels accompanied by an implicit and bizarre belief that a level of thyroid hormone is a better index of wellbeing than the patient’s own view of his/her wellbeing.
This situation has arisen from the mindless deification of ‘evidence-based medicine’ which usually means laboratory-based-medicine where one chooses the evidence which suits and ignores evidence which doesn’t suit. There is no evidence that the efficacy of thyroid replacement is better correlated with levels of thyroid chemistry than with the initial clinical picture nor clinical outcome and in a small pilot study the author has provided preliminary evidence of this assertion.
You were referred to see an Endo. You ended up with a specialist nurse (some it must be said are better than an Endo!) so your GP has not fulfilled his requirement to send you to an Endo. Go back and tell them you want to see an Endo - you have that right. Sticking a nurse into a clinic with knowledge of Diabetes is just to save money and to hell with patient care!
I am definitely going to go back to my GP serenfach firstly to tell her that the woman I saw was worse than useless but also because she actually said to me you certainly have the majority of symptoms of hypothyroidism. The main reason she referred me was because the NHS wouldn't allow her to do the Free T4, T3 tests because my TSH was still within their "normal" limits. I told her my previous Blue Horizon labs and she said "your Free T4 is only just in range and that's not ideal" So she seemed to know more about it than the so called nurse I saw yesterday! I really did feel like giving up yesterday but with all the support, help and information all the lovely people on this site have given me I'm now determined to get the help I need. Thank you
I wonder if she would have said all that if you had someone in the surgery with you? Maybe consider taking a sympathetic friend or relative with you another time?
Looking through your previous posts ....can not see any test results for vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells
If you can not get GP to do these tests, then like many of us, you can get them done privately
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