I finally went to see new Endo at John Hopkins Hospital who (Only specializes in thyroid disease and thyroid cancer) for my second opinion about possible thyroid cancer recurrence from a November Radioactive iodine scan. Good news he is confident that reoccurence is probably not happening but it's certainly something that needs to be looked when I come for my 6 month visits (All most heard angels singing) It was a very different experience for me from my military Endo who says your great see you in a year, no plan of checking for recurrence,no nothing.
My biggest "sigh of relief" came when I asked him about my TSH being really low I asked him how he would react to it (He asked me how do you FEEL on your current 100mcg synthyroid and 10mcg cytomel) I said I feel fine better then I have in 3 years and he said then I HAVE NO ISSUE with you TSH being low since your on cytomel and this is typical and NOT A BIG DEAL .....WHATTTT! I asked him really you wouldn't try to bully me into a medication reduction by telling me I'm going to die of Heart disease and have crumbling bones because my TSH is to low ....He giggled NO I don't only treat by blood test I go by how you feel and give small adjustments if you feel like you need it...wow! My husband sat in on the meeting and he made a 6 month follow-up with neck ultrasound this has NEVER happened at the military hospital I had to battle for neck ultrasound.
Anyway he did do labs before I left the hospital but he did NOT do FT3 ONLY did FT4, TSH and T3 and sadly this blood test was at 12:30 in the afternoon and I took my meds at 10am .........So I still think my levels are still too low considering my labs dont look much different from when I do the labs without meds and test early in the morning.
12:30 afternoon test with meds at 10:00am (100mg synthyroid and 10mg cytomel)
TSH: 0.27 (0.50-4.50)
T3: 1.42 (0.80 - 2.0)
FT4: 1.6 (0.8 - 1.8)
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Batty1
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That is wonderful news you must be so pleased. If only we had more Doctors like him here in the UK. It is a pity about the blood test because I think your TSH might have been higher if it had been first thing in the morning. That is what happened when I had mine tested last week on the afternoon when admitted to hospital. The Monday result said my TSH was 0.27 but when I did my own private test last Friday morning my TSH was 0.37. Is there any chance you can re-schedule a blood test for first thing in the morning?
I was no expecting a blood test on this visit since it was just a consult or I would have skipped my meds and took them after appt which was at 10:30am.
Did you not try explaining to him that it was the wrong time to do bloods: low TSH, having taken hormone, etc.? You could have asked to have them done at a more convenient time, no? Then, you would really have an idea of how much he knows about thyroid!
Sometimes we have no choice my Endocrinologist always had his clinics on an afternoon so my blood was always taken then. It showed my TSH was 9 which he said was normal! The idiot! I dread to think how many other people he is giving bad treatment to because it has been about 9 years since I walked out of his clinic when he offered me counseling.
A week before any appointment with an endo I make a morning appointment at my GP's for the nurse to do bloods. I tell her the endo will want to see the full thyroid panel. No one has ever questioned this ..........so far !
This was years ago before I knew what I know now about Graves' disease. I blindly let my Endocrinologist treat me but when he told me I needed counseling because he had over dosed me on PTU something snapped inside me and I walked out on him never to return. I have learnt a lot over the years by reading up on thyroid disease and from Elaine Moore's site in the US. A lot of kind ladies in the UK and US have helped and advised me .... Doctors and the NHS have never helped me and I have lost confidence in them.
How do you people manage to get to see an endo. or get bloods done on request from the nurse, let alone which tests you want,My doc said I don't need to see an endo. when I asked. I have never seen one in over 30 years. I don't think she was happy but I am now arranging to go privately and she has written me a letter. (I haven't read it so, goodness knows what she has put in it!) Bit of a long process though as I have to get blood results from surgery (when they condescend to let me have them, then get my own bloods done to compare, and then get results they don't have , privately, and then..... make appt., to see endo, who may or may not be a thyroid specialist? Where is John Hopkins Hospital, might consider that if it is within striking distance of South Yorkshire.!
I am afraid it is in America not here. I cannot believe you have never seen a Endocrinologist in 30 years. You can read your referral letter if you want because you are allowed to see all your medical records and results it is the law
Yes, I did check, afterwards, sorry. I suppose I ought to have realised, not having heard of it. Believe me, the NHS is not all it is cracked up to be.I have less faith in it every day. Shortages of doctors, nurses, drugs, waiting times for appointment and ambulances, it is literally woeful. The thoughts of having to go in hospital is scary. Since I began researching about my thyroid, even information I have gathered on herer egarding endos. is not good. So not a lot of hope, but no choice but to carry on carrying on!
Yes. But even that is complicated. Was diagnosed hypothyroid approx . 35 years ago and up until last couple of years has been steady, in so far as was checked annually and was pretty much stable, hardly adjusting medication, then for last two years it has been all over the place and I have been tested approx. ever 6 weeks and constantly slightly changed dosage. It is now lowest it has ever been, and I feel worse than I ever had. ???thyroid or fibromylgia or possibly something else, who knows. Have never been given results, and to be honest never thought to ask, just accepted what doc. said. I am now extremely concerned that something could have been missed, although my doc. is still saying my bloods are OK.
Gently remind Receptionists they are breaking the law if they do not give you YOUR results with ranges.
If you ring them tomorrow they should at least be able to produce your most recent results or ask for the last fewThyroid Test results for collection when you go with hubby on Tuesday 😘 What are they hiding ?
I did that to one receptionist and she started to lose her temper and actually banged her hand on the desk. I then complained about her to my Doctor and he personally printed my results off and handed them to me. I don't understand why they think they are so important?! They are just clerical officers and have no knowledge of how to treat patients medically. I have been a A & E receptionist and would never be that presumptuous.
I am with you, but am not good at banging the drum. I have never liked confrontation, and in any case I know the 'staff' would all support each other. As for asking the doctor, I would be lucky to get to see her for another 3 or 4 weeks, taking into account school holidays. It is all true what you say. I worked in the NHS in the early sixties in admin./secretarial and it was a totally different ball game then. We were brought up differently in any case. Polite, respect, your elders, the customer is always right! Those days are long gone!
One of the receptionists at my practice is clinically obese she cannot even walk very far and I do wonder if any of the Doctors have said anything to her. Everytime I visit I get asked by the login screen whether I smoke or not. I usually say yes sometimes and no other times because I know they using the information for statistics.
Know what you mean. I recall a couple of years ago attending hospital and having to beweighed and measured and was told I was obese. Can't recall weight, but was around 10 stone. The nurse was at least 15 stone, never batted an eyelid. Don't know how I kept my mouth shut!
Ha ha the nurse who took my bloods when I was at the hospital a couple of weeks ago was massive. I thought how does she manage to care for patients with all that weight? I then tried to see if she had an enlarged thyroid but I could not see it under all the double chins. Also I don't think 10 stone is overweight I am 9 stone 12 and size 10 now. I was overweight because of inactivity for over 2 years.
I don't know that they are hiding anything. I think it is more a case of showing who is in control. Unless they are genuinely so busy! whatever the case, it is difficult to confront them, when you are expecting them to provide a service, particularly when you have already had one showdown. They only have to decline nicely and tell you to come back later, and there is not a lot you can do. But I will ask again. If not forthcoming, on Tuesday; when I am in again on Friday"! Thanks. Marz.
How long does it take to look up a patient and verify it’s them and print a piece of paper 2- 3 minutes 5 tops?
This has nothing to do will upbringing or age or being busy this has everything to do with bad management and lazy employees and no accountability to the patients, I deal with this in the military health system.
I think my circumstances differ from you. I have Graves and guidelines advise I should be overseen by an Endo. The GPs in the practice freely admit to not knowing about the disease and so don't interfere with any requests made for blood tests.
I think everything now is a case of cutting wherever. Shortages of staff, means shortages of appointments, means longer waiting lists and more selective referrals, if you can get one at all. I would like to bet thyroids are at the back of the queue, as there aren't enough specialists. It is unfortunate if you happen to belong to that category!
I suspect that, in many cases, it would make far more sense for a blood test to be done a day or two before an endocrinology appointment.
Perhaps the endo could liaise with GP surgery so that you, as patient, can arrange a suitable time for blood draw? (Obviously, should alll happen easily enough with our amazing IT systems.)
Thus having the results all ready for the appointment.
I have no intention of seeing a Endocrinologist again because of my experience with the last one who treated me. If there was someone like Dr Gordon Skinner about I would definitely see them but that is not going to happen now he is no longer with us. This just my own opinion and it is up to me what treatment I take to treat my Graves' because not one Doctor in the NHS has helped me so far.
So sorry Lora. Just picked this up. It is an absolute nightmare trying to sort your own medical problems out. I have literally been at it 40 years, and still have no answers. All the time getting steadily worse. How on earth do you manage to treat your own Graves, and have you been successful? Best wishes.
I haven't really .... I have self treated with Thyroid S to support my thyroid when my levels were too low but my TSH was still in range. I try to eat healthily and avoid coffee, coke and processed food. I am on my second remission and still don't know why it happened. I did force myself to go on a sunny holiday with my family in June of last year which did something because I then had a thyroid storm the end of July. You can read my story on my profile page and see what threads I have started.
Hey GG, I couldn't go back it takes over 2 hours to get their and the next time I will go I will get a lab request and do them local... I didn't get the impression that he cared much about labs as long as I said I felt fine and he said he is willing to give small adjustments to meds if I feel like I need it. I didn't explain anything I wasn't expecting bloodwork.
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I JUST DONT UNDERSTAND
New labs. 
Private labs showing high levels need advice 
New endo and more questions
