Hi there previous to my earlier post today i have been thinking after my disasterous appointments at my current hospital with 2 different endo's i have been looking to into getting re-referred to another hospital which would be the one above, did look into the private thyroid clinic but have decided i dont want to throw my cash in that direction just yet as i want to give nhs another go, please can anyone tell me who they have seen who is good or someone not to waste my time on, i have already had the list sent from dionne fulcher but could not see anything apart from hospitals too far away.xx 😊
Anyone been to the queen elizabeth hospital in ... - Thyroid UK
Anyone been to the queen elizabeth hospital in birmingham for nhs endo appointment ?- reviews good or bad
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Rmichelle
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Do you think it might be worth persevering with the Endo's you've got at the moment? I'm not sure you'll find Birmingham any better although I've not been there and you're right, there's nothing West Country on Thyroid UK's list.
There's an excerpt here that might help to make a bit of sense out of your diagnosis. I've been searching for something that explained in a bit more plain language about the connection between Hashimotos and Graves disease and hyperthyroidism because it seems very confusing.
I can't post the link as there is a medical image in the text that may contravene guidelines on the forum but you can search for the text yourself. It's posted by Thyroid Disease Manager Website and the article is called Hashimotos Thyroiditis updated July 17, 2017.
'We suggest that Hashimoto’s thyroiditis, primary myxedema, and Graves’ disease are different expressions of a basically similar autoimmune process, and that the clinical appearance reflects the spectrum of the immune response in the particular patient. This response may include cytotoxic antibodies, stimulatory antibodies, blocking antibodies, or cell mediated immunity. Thyrotoxicosis is viewed as an expression of the effect of circulating thyroid stimulatory antibodies. Hashimoto’s thyroiditis is predominantly the clinical expression of cell mediated immunity leading to destruction of thyroid cells, which in its severest form produces thyroid failure and idiopathic myxedema.'
In other words, it sounds like they are saying that both Hashimotos and Graves are opposite ends of the same spectrum and both are caused by a similar autoimmune response. So the autoimmune process might appear in one person as Graves and in another person as Hashimotos. A question you could ask is, do some people have appearances of both and if so, how does a doctor make a conclusive diagnosis and treatment decisions?
It would help to have your diagnosis and biochemical findings explained clearly so that you can make informed decisions along with your doctors. It doesn't help if they roll their eyes and write unhelpful things, I know. but If they don't have the time to explain things fully then they need to write it down and give you time to consider and learn so that you can come to joint decisions.
Your Endo said the tests for Graves were unreliable but I wonder what he meant? In the ATA guidelines it says some patients with Graves symptoms don't have the TRAB antibodies present. Is that what he meant?
You could ask him what guidelines he is following so that you can read up on them, learn, understand and discuss knowledgeably. At the end of the day, guidelines are not a set of rules but a set of suggestions based on research and decisions need to be individualised so his expertise and experience is useful for you if you can find a way to work together.
If you read the ATA guidelines for Hyperthyroidism, it seems like your treatment might be following along those lines? If so, then you will notice that the recommendation is to take a certain amount of carbimazole or similar medication for subclinical hyperthyroidism. If you read that bit, you can discuss it more knowledgeably with him.
Hi there again, thankyou for your advice and i do try to take in all peoples experiences and knowledge, i eeally like what you said about how do they decide on what treatment to give you when you have both graves and hashis, i have alteady compuled a new set of questions ready for feb/march app and i have markwd that one down, he does know that i have hashis and o remwmber my 1st endo stating no need to do a tsi test has everybody who comes in with hyper has graves! As i daid at that time i have hashis but he was not interested and told me i was getting too techinical and going off the subject of being hyper!! He was very rude. I will not be changing quite just yet as i have another thyroid scan booked there in 2 weeks time, so i need to get that out of way yet, i have sort of made up my mind about transferring as it has come recommended by hubbys boss, its a university hospital i believe. I just feel that the endos at wolverhampton are very much full of their own sense of importance and are not interested in how you feel and cant even read levels properly, especially thinking that my tsh was fantastic at 5.48!!and telling me im still hyper? Thats when she pulled in another endo to fight her cause as she relised she was losing the battle so really i have seen 3 endos who know jot, one of them even said hecwoyldnt bother scanning me as he could feel no nodules- when gp could and the scan shows well defined nodules, im afraid i have list all confidence in them and think i would be wasting train fare and taxi fare on them, just wondering how many endos we have to go through until we find a good one.xx😨
Hi Rmichelle, I have Graves’ disease and was diagnosed with the Trab antibody test. Previously my endo checked TPO antibodies which were negative then proceeded to the Trab antibodies which were 12.9, positive. I just can’t understand why neither of your endos won’t do the Trab test for you at least you would know for definite what you have! I really feel for you.
Yes its a real pain in the @ss, i have been confirmed with hashis with tpo antibodies test and via ultrasound but if i had a pound for every time i have asked about test for graves iti is a big fat NO. I give up,i personally dont think i do, i have been hyper but now i am hypo and on low carbi dose of 2.5mgs which is awful at the moment, endo days i have graves as im hyper but im not hyper any longer-they couldnt even read blood levels correctly and im ready for a changenof hospitals now as ive had it with there.xx
Well, I agree you need someone you can work with and they have made a real hash of your care. Let us know how Birmingham goes. It is a teaching Hosp. And at least you can go shopping afterwards!! I hope they can do the TSI test or TRAB test. You will get better expertise than a regional hospital but who knows what they will be like.
Yes i will let everyone know when i go-good or bad. Yes i can flash the plastic in selfridges.xx
From a hormone point of view they are excellent at QE Birmingham. They are the experts in pituitary conditions. I have met <doctor name> & her specialist Endo nurses at a conference & the care & help they offer to patients is second to none! I would go there if I lived nearer.
Rmichelle in reply to
Thankyou so much, i am pulling towards birmingham and think it cant be any worsecthan the small team at <local hospital> as most of them are diabetes specialists.😊
No your info is great and its good to see the bad bits aswell as i know what to expect, i cannot see me staying at wolves it just dies not inspire confidence-did you say its a teaching hospital? Staying at wolves till scan done again and then i shall get rereferred-already enquired and it is a 3 month wait-no more than follow up appointments with wolves really-i live in shropshire and in this area it is a 6 to 7 month wait.😊
As with all endo's you have to know your info. Be prepared for a civilised battle, and smile a lot so they don't take it personally. The last time I saw Endo at QE hospital, I went armed with 6 print outs of info I knew she would argue about - ready to slam her down.
They call it a research & teaching hospital but that's a complete joke. The heads of endo teams are still in the dark ages. Good luck
just to give you all heads up, its against the board rules to name and discuss individual doctors in this way, perhaps edit or delete the posts and then put it in private chat, the posting guide is in the pinned posts on the right , a quick read will help keep you on the right path, this is the paragraph re: doctors etc
"do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only."
helvellaAdministratorThyroid UK
There have been repeated mentions of doctor names on this thread. I am, therefore, going to close the thread to replies.
26. Do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only.
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