When I last wrote, I'd had a biopsy on a lump that had grown on my remaining lobe. and been told that I had a calcified lump with suspicious cells, was Thy3 ... I was also told that my case would be discussed at the next MDT meeting. Well that didn't happen, doc was away...nor did it happen at the next month's meeting as he was in theatre. So 2 months later, I am told that I can just go on the waiting list for surgery - currently running at 3 months. I am not happy to say the least, and feel that I have been treated shabbily. I said I wanted to see him in clinic, and have plenty to say ... but every time I go to write something down my mind goes blank. I've been worried sick for the last 2 months, and my family even more so.
What would you think are relevant questions to ask - I mean as well as telling him how I feel, which I don't need to write down!
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Stellabella
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I cant give advice on your exact experience BUT did find when I was waiting for kidney surgery that I was suddenly speeded up the list and taken in as an emergency.
Unbeknown to me my hubby had been calling them asking for cancellation appts - it was only when I was admitted that he and the specialist's secretary let me know this had happened. Just as well, as they said I would have been a touch and go emergency with hours had I not been taken in when I was.
Wonder if someone could be your advocate? Just a thought it sounds as though you're being messed around much too much.
I have just had thyroid surgery 5 weeks ago (total thyroidectomy). I was given the run around quite a bit but my husband was very supportive and kept ringing the surgeon's secretary to chase things along otherwise I'd probably still be waiting. Pester power definitely works as does having someone in your corner.
My mind always went blank, and to be honest I don't know what questions you should ask. I found my surgeon very unapproachable, even at my post surgery follow up. The only thing I can suggest is writing things down as they come to you then take it with you (I should have followed my own advice). The problem is that it is all routine to the doctors, they forget that we worry and don't understand what is going on.
mmm thats not good, questions, you need to write a letter and express you are not happy then give your reasons why and ask what they are going to do about it, make your letter positive but forthright, the post you written above sounds good to me, infact you have put it across in a good way, just needs changing a little. Have you got a letter to say your case would be reviewed at the next meeting? if so add that to your letter.
Hi That is quite dreadful, try seeing a different GP in the practice. Write etc as advised above. In the mean time have you had your calcium bloods done?, it is the corrected calcium that matters. Are you on D, ? If calcium out of range ( above) you must immediately stop vit D tablets, make sure your Potassium and sodium ( U`s and E`s, kidney function ), Potassium not too high in range and magnesium. These are all electrolytes and must be always in range, no matter what. Also have you had the PTH checked? blood test, calcium, Parathyroid and vit D, if all high must be done together and AM,,then you need a nuclear scan of the PTH, large hospital.
I hope that helps, above all you need to see an endo.
Sadly Jackie, this isn't a GP but the consultant at our main hospital. I've written down what I want to say but I am quaking.
I feel like it has been dismissed like a tooth extraction after making me worry sick for two months.
It was him that said he had to take it to an MDT as it was too important not to, now he's missed the last two, he seems to be trying to make light of it.
Hi That is ridiculous, Send an e mail letter to his secretary, for him, then you can be sure that he receives it.Other wise, I find the pompous ones never read letters! Also always have copies of letters from him to the GP and bloods + ranges, vital. If still no satisfactory out come, be sure to research who is best to see, Hospital sites, google the names and look them up on private hospital sites, and Louise has a list.thyroiduk.org.uk/tuk/te Then ask for a new referral from the GP to who ever you think will help you. I have found, never to stay with any consultant that I feel is not right, for what ever reason. Your body, needs looking after!
I have just read your later post. Make sure you have a free T3 test, even if you have to pay for it. Did you have the nodule on the thyroid biopsied by a specialist radiologist, you should have? Also have you had a nuclear test for parathyroid ( PTH). If not, then you first need an AM test for PTH, calcium and vit D, must all 3 be done together. If high you must have a nuclear scan, large hospital. I suspect the FT3 is low. When I started treatment, years ago, FT3 always tested and I had treatment because of that ( no T3 then). I now know it was Hashimoto , no known then, I have an enlarged thyroid and nodules and an out PTH. Too ill with other things to have the biopsy, but that is very unusual When the thyroid is operated on, a little bit is always left. You only want it done, after a needle biopsy.
I have always had 'normal range' results, at every yearly blood test MOT.
Late in 2010 I found a lump in my neck and had a scan which showed a very large sub-sternal nodule which was subsequently removed with the left lobe and isthmus in Dec 2011.
Last year I felt a small hard lump low down in the centre of my neck. I was sent for a scan and they did an FNA at the same time. When I went for the results, I was told that there was a 12mm 'cyst' with an area of calcification, and some suspicious cells, classified as 'thy3'. That was when I was told it would go to MDT and that was when I started to worry.
2 MDT's have been missed - granted one was unavoidable - and it will now be discussed at the next one. He will re-look at the cytology of my previous nodule and compare it with this, so I hope that after the next meeting there will be a definite plan of action, but he will most likely remove the rest of my thyroid now.
And after all this my bloods are all still 'normal' - but I've only ever had TSH and T4 done, and nothing else!
Hi That is why I wondered about the blood tests. it always was TSH, T4 and free T3 that were done, I was only HYPO on low T3 to start with. Now it is cost cutting. often the GP will do it if you pay, about £10, or there is a site where you can get them all.tyroiduk,og,uk/tuk/te. i use Blue Horizon, there or main site. If you quote TUK 10 it costs £61. Results and all important ranges e mailed to you. Make sure you have always had and have the blood tests and ranges all different) from the GP etc, ask the receptionist. often the Docs "It is in range" , mean not glaringly out of range. Very good consultants treat the person with blood tests.
Thanks for your answers - they all helped me feel a bit more confident about saying my piece.
Well I have seen the consultant, and a lot was said ... but that outcome is still the same as it was in January - my case will be discussed at the next MDT (2 weeks) and I will most likely be offered surgery to remover the rest of the thyroid complete with suspect nodule. His secretary will ring to offer me a date, He can't give me any idea how long a wait that will be.
That is almost exactly how it was left in January,
As an aside, my last bloods were totally normal - that is, the TSH and T4, I asked about T3 but was told they only do that if indicated by the T4. So my question about why my thyroid is showing 'normal' when it is obviously intent on destroying itself wasn't answered. Maybe there is no answer ... and if it is all coming out maybe he feels no need to try and explain it?
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