UPDATE New Endo/ Labs

[Batty1]

Hi everyone

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)

[greygoose]

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!

[Batty1 in reply to greygoose]

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.

[greygoose in reply to Batty1]

OK, well, I hope it all works out for you.

[Batty1 in reply to greygoose]

Fingers crossed! I'm so tired of dealing with thyroid disease.

[ShelWhitt in reply to Batty1]

Can I join your club?

[asiatic]

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 !

[ShelWhitt in reply to asiatic]

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.!

[Marz in reply to ShelWhitt]

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 ?

[ShelWhitt in reply to Marz]

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.

[Batty1 in reply to ShelWhitt]

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.

[ShelWhitt in reply to Batty1]

You are absolutely right. Trouble is, being right doesn't always hack it these days.

[asiatic in reply to ShelWhitt]

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.

[ShelWhitt in reply to asiatic]

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!

[greygoose]

You can refuse. They can't take your blood by force.

[Batty1]

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.

[helvella]

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.

[ShelWhitt in reply to helvella]

Pity we don't live in an ideal world! I don't see evidence of logic, common, sense, or amazing IT systems. I think it is more the luck of the draw!

[Batty1 in reply to ShelWhitt]

No such thing as ideal world and all systems have flaws.

[helvella]

Although posted in response to your reply on the thread, it was meant as a general point.

If the endocrinologists are not going to do that, which seems pretty much a foregone conclusion, perhaps patients could try to achieve it themselves?

[helvella]

More a help for anyone following, I hope.

[ShelWhitt]

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!

[Batty1 in reply to ShelWhitt]

Hi Shelwhitt, John Hopkins is in the US and it’s taking me 3 years of hell to get to John Hopkins. Does your GP give you thyroid test?

[ShelWhitt in reply to Batty1]

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.

Watch this space.

[ShelWhitt]

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!

[ShelWhitt]

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!

[ShelWhitt]

I know that feeling well!

[ShelWhitt]

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.