I posted on here a few days ago about being admitted to hospital with toxic thiyroid storm..I'm still in 7 days now..and are seeing an endo today ten miles away in another hospital I'm getting transport but feel total exhausted..anyway its the only way he will see me...great!!! Apparently he is developing a plan for me as the thiyroid Meds do not agree with me and ad of the weekend they found that they have affected my stomach and bowl pretty bad to the point where I now need a bowl scan..just want to know what I should be asking this endo on my app...I only found out last night I was going so not much time to reply to me..sorry....
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birkie
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Suspect he will suggest radioactive iodine to destroy part of your thyroid, or thyroidectomy, surgical removal. The first option will probably make you underactive and the second definitely will, this means you would require levothyroxine, replacement hormone for life. There are problems being underactive, hypothyroid, it is not as easy as just taking a tablet a day, but I appreciate that at present your life is unbearable and you are at significant risk of permanent harm from your overactive thyroid.
It is probably too short notice to take someone with you, but ask the endocrinologist to write down all the options so you can think about things, try not to let him force you into an instant decision. I wish you well.
But I can't have either procedures as yet my levels t3 t4 will not allow me to have any thing like that done as I cannot tolerate the anti thiyroid drugs so my levels are to dangerous they say I can go in to thiyroid Storm..so that's what's puzzling me what plan can he be thinking because it's to do with my intolerance to the anti thiyroid drugs and iv been on them all..😢😢😢😢
That's awful you've had a Thyroid Storm - it must have been horrendous.
You have my sympathy and hope the Endo can resolve your problem as you've been very unwell due to your thyroid gland giving excessive hormones.
I am glad that cjrsquared has given such a good response.
This section if from the following link:
"Doctors typically prescribe a medication called levothyroxine, a synthetic form of thyroid hormone replacement. However, some people with hypothyroidism have difficulty tolerating or absorbing the traditional medication, in which case your doctor might consider prescribing a more "pure" levothyroxine formulation available in a gelatin capsule. It may offer advantages over traditional tablets, especially if you have certain gastrointestinal (GI) issues.
If you have an allergic reaction to the fillers/binders in thyroid hormones maybe he could prescribe an NDT (natural dessicated thyroid hormones) which used to be prescribed by the NHS and may still be able to be prescribed. NDT is made from animals' thyroid glands and was the original replacement since 1892 and from then on people recovered. Being from animals might be more conducive to us than a synthetic hormone i.e. levothyroxine.
I have seen the endo who quite frankly acted like he was some god...sorry but that's the impression I got..first he did not belive the anti thiyroid Meds were giving me the sickness/vomiting sheer stomach pain and intestinal pain..swelling and irritation..that was his first mistake. Then going threw my past endo app in March 2004 I was diagnosed with overactiveparathyroid glands...diagnosed after 6-7 wks of my Gp saying I had a kidney infection without taking any urine.he asked me how my operation went..confused I said what op..the op on yr parathyroid glands I told him I was not offered either an op or even a scan my endo and GP just did the usual 4-6 weeks bloods until they were returned to normal levels..he called me a liar he said that could not happen with overactive parathyroid glands..well it did with me for god sake it's in my records...to which he said we'll iv not had a chance to read that yet..so I told him to shut up then..maby i should not have said that but no way was he calling me a liar..I then said sir if I had had an operation my parathyroid glands it would be in my records..their is not...I did have this condition because I saw an endo about it..and my treatment was as I said 4-6 weeks bloods work nothing more..anyway he was not pleased with my thourgh questioning of him..I'm chuffed..up shot is I'm having an uptake scan to find out why I have gone overactive in my opinion a bit late..but at least it's moving in the right direction.
It is disgraceful that when things go wrong that it is all blamed on the patient. You've had some journey I wouldn't like anyone to experience at the hands of experts.
They forget that they are supposed to be the educated people - experts in all things endocrine - but for many on this forum, we've found the opposite. Even doctors have no clue about clinical symptoms any more (I found that out thanks to a First Aider who came to my aid before I was diagnosed). Many other doctors/specialists didn't diagnose me despite lots of symptoms. We are relying on them to at least give us a proper diagnosis as it used to be done in the past by the doctor knowing clinical symptoms and giving us a trial of NDT (natural dessicated thyroid hormones) that saved people's lives, without blood tests.
Blood tests may give a clue (if the proper ones are taken - not one took mine) but symptoms, I think are far superior especially when we are starting doses and then increases stopped because the TSH has reached a level but they don't know that the aim of a TSH of 1 or lower if we've been diagnosed.
We can be dismissed if things don't go to their plan and we're not believed but you should copy and paste the above information onto your profile so that members can read your past history in future.
No wonder that the majority on this forum are angry because we are not medical professionals - even the first aider knew more than all of those I saw and some of which were paid for the wrong diagnosis - even an op.
I have to say I felt I knew more than the endo did from my time on here reading the story's..I'm afraid I gave him a really hard time,,I wanted questions answered so as I could understand them,,I was on the ball with thiyroid levels ect I did have a lot of info about my condition.,,,.in the end as I said he has arranged for an uptake scan and I'm pleased to say I go this Friday 10.40🤗
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