I was diagnosed with hyperthyroidism in September last year..was given the usual Meds carbimazole first to which I had a bad reaction and was hospitalized..doc and en do had a consultation then endo told doc to prescribe ptu I was really ill on them to but GP insisted I take them after a month I was bedridden and vomiting every day I could not keep the Meds down ..eventually because the Meds were not in my system to work i went in to thiyroid storm..I never saw a endo from September to Dec I was eventually taken to hospital and given 8 ptu tablets to bring down my levels..these were the tablets that put me in hospital in the first place..and after they stuffed 8 more in my system I again vomited and had server upper quadrant pain after a scan it showed server inflammation of my stomach and bowls..they stoped the Meds immediately and after 6 days I was recovering they insisted I try again with the anti thiyroid Meds..I totally refused all my inflammation went my stomach felt so much better and I was able to eat again..and still the endo scratched his head..then told me I prob had inflammatory bowl disease maby lymphoma....he was totally wrong my camera exam showed nothing of the sort...yes how do these people get paid..I was on tender hooks for over 2 weeks waiting on the camera scan...I saw him Tuesday this week and conveyed the results to him stating I do not have lymphoma or inflammatory bowl disease...he calmly said that's not my field I'm a endocronolgyst I beg to differ...
Endos and doctors need more training in thyroid... - Thyroid UK
What’s needed by medics is more humility, and more attention to what the patient says. It’s possible they would then learn more. I wish you a good recovery.
Oh my goodness I agree completely!!! I'm so sorry to hear what a hard time you've had. I had a somewhat related experience of an endo claiming that they knew for certain that my thyroid had damaged my heart n my heart would stop. I was terrified n when I managed to see a cardiologist 5 months later I was told it was bullshit, that my heart was extremely healthy n that the problem the endo suspected didn't even work like that.
But even other areas aside they barely know thyroid. They don't understand autoimmunity at all!! Which must be such a high percentage of thyroid cases!!! It begs belief honestly!!?
Look up Elainemoore.com n read her stuff about natural anti thyroid and acetyl l carnitine for storm. I hope you feel better soon!!
when the Drs finally realised I was hyperthyroid years ago I was told before for years I had just severe anxiety I guess as my hands were so shaky thats what they thought i had and was given many anxiety tablets lorazepam that made me completely nuts then valium then I had a thyroid storm for them to notice I was actuaklly dangerously Hyper,, I agree their needs to be a lot more training given both end of the scale Hyper and Hypo as we seem to get treated badly with both.......
When it was discovered I was in hospital the 1st form of treatment i got was lugols iodine, and Proprananol ,but had an allergic reaction to the luguls iodine,,,,, I was then on Carbimazole which I was always being sick on it but they gave me an anti sickness tablet Stemitol to stop me being sick that worked with me
They whipped my thyroid or part of it out very quickly quickly, i'm not sure why! Its not all that clear to me I was in teens,,
I was never told it was anti bodies so never given chance to try and go into remission, which I feel very bitter about now as Gps left my TSh around 3-4 which I never was able to get pregnant, I also felt very ill after thyroidectomy and all symptoms were I was depressed when i was really Hypo... then on meds for hypo in 40s too late to have children but felt even worse on them , I am only now at the age of 55 which is 35 years later getting better treatment and have a better GP who is helping me get better..
They told me they never suspected that I was hyper when I was in teens as was normally people in 40s that get it
I looked like a walking advert for hyperthyroid my eyes were out on stalks shaky very pale I think from thinking back I had hyper since i was around twelve as never had to wear a coat in the winter , I also worked as a nurse in a medical ward and not one nurse or Doctor noticed that I was very hyper ,, I had a goitre as well,, so shows Drs do not know much on thyroid ,, they get not much training my GP admitted it the other day , he is very good with it thank god ,, but because the ignorance on Thyroid Hyper and Hypo I had a really bad and unhealthy life with zero quality and zero energy
They could try you one methamazole which is the active drug of methamazole Im sure they should be able to get it if needed , its all thats used in the US, they dont use the pro drug Carbimazloe which has to be activated in the liver to convert to active drug
Maybe you could ask on here in seperate post a list of good Sympathetic Endos in the areas you would like to travel to,, some one will give you the email to get the list sent to you in that post These Endos will work with you to get you into remission if they can and dont threaten you with Radio Active Iodine or surgery ,,, I think they are from Hypo patients mainly But a friend of mine got a Endo from list she's hyper and she went to see him and said his attitude was much better than her normal Endo who was pressurising her to have RAI,, she went into remission not long after seeing him xx
Good luck with all and get a 2nd opinion with a sympathetic Endo its worth doing xx
P>S , I would get all your vitamins checked out haing Low Vitamin D is well known to go with Hyperthyroid,, check Vitamin D , B12 , Folate, and ferritin , Iron panal, magnesium zinc copper and selenium if you can from the Endo,, , try cutting Lactose from diet, gluten, alcohol,, do a bit at time so you know which one triggers the hyper off,,
If you had a recent upset that could of triggered it off, so try not to get stessed , do some form or relaxation, yoga is good or do something you enjoy and if something is going to stress you right out, dont do it as you need to stay as calm as you can to go into remission xx
let us know how everything goes xx
I'm having my thiyroid removed soon I'm graves..I've been hyper for over 3 years but GP never took notice until it was to late I had thiyroid storm was in hospital for 9 days..I cannot take anti thiyroid meds as Im very ill on them that's why my thiyroid is being removed I know I will become hypo when it's removed but to be honest I've gone through hell this past 3 years..bedridden no energy..even day it feels like I've ran a marathon sweating. shaking fast bowls.itching till I bleed..I'm hoping this stops after my op..crossing everything. .
Totally agree. I think they may dish out carbimazole like candy. I am paranoid about my blood levels.
Both Graves' disease and Hashimoto's are extremely closely linked to gut issues, especially H pylori
This previous post says you had h pylori and other gut issues
Absolutely essential to get vitamin D, folate, ferritin and B12 tested
Low vitamins are extremely common
Vitamins need to be OPTIMAL, not low in range
Always get actual results and ranges
Essential to also get all Thyroid antibodies tested. TSI or TRab antibodies tested for Graves and very high TPO or TG thyroid antibodies for Hashimoto's. Mildly raised TPO or TG antibodies can be due to Graves
Link about antibodies and Hashimoto's
You need to know exactly what has been tested and equally important what hasn't been tested yet
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Usually Only endocrinologist can order TSI or TRab antibodies tested
Private testing for suspected Graves - TSI or TRab antibodies
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal
Read up as much as possible about gut and thyroid disease
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first before trying strictly gluten free diet
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Not sure about more training but they certainly need better training.
Many years ago before automatic projection were the norm I've shown slides in Thyroid lectures, I've done illustrations for thyroid related papers little knowing then that I was going to marry a man working on thyroid research and be diagnosed, eventually, as hypothyroid! Medicine is a long intense course and not all get there and yes some subjects get more lecture time than others and often lectures are given from people working in the department, many being science based rather than medics. But back then lectures were not compulsory though you would struggle with exams if you missed many, practical classes were and I assume because staff like myself spent s lot of time getting them ready. The second year of being undergraduates they were also told to go to the clinical lectures but I feel the thinking behind that was it wasn't fair to bring in a patient with problems if the turn out was poor so again I attended a few of those if I did a spot check on attendance. They then when over to the more hospital based subjects, lots more lab work looking at cultures on agar plates, histology quite a long list before they then metvmore patients etc. So when they left us the should have been familiar on how the thyroid worked but the more relevant work would be covered by clinicians and Ward rounds. Now I don't know what the thyroid person would tell them but I do suspect that because not many thyroid patients end up on a ward that knowledge is not as good as it might be. I once asked on here how many have had a student observer in an appointment with an Endo and although some did many didn't and I've never experienced it myself. Our thyroid knowledge has improved a lot thanks to everyone connected to this forum and things are now looked at and commented on that were not even concidered a few years ago it even though we can get the advice I suspect doctors with say it's rubbish orcmay even go as far to forbid us to do it! My own GP has gone from telling me not to take vitamins etc ( I still carried on without her knowing) to now asking what do I need testing!
To go back 30+ years to my diagnoses. They say you have to live with a person to understand them. Well when married we lived in a flat, ok as we were both out all day and with family at weekends but we married in January so very cold and a little damp so we started to look for ore own home and moved in May time. Often we would travel home together and the first thing I would do was turn up the central heating which was often too high for my husband. So eventually as other symptoms appears my husband took me to the doctors to be told he didn't know what he was talking about!
Eventually we went to see another doctor who I hadn't seen professionally before because he only worked part time and sent the rest of the week with students in the Anatomy department which was next to were I worked. So two reasons not a good idea to see him but we made an appointment. My readings had been highest but not enough to convince anyone as I was (sigh) quite skinny! So it was great that he actually listened to my husband and was happy to give me medication. He also said he had just had the same diagnosis and admitted his knowledge wasscanty and could my husband left. No 10 minute appointments then plus I think we were the last so the two of them talked at length and we both started on NDT! He eventually left the surgery and set up in private practice but between them I got a good grounding. A strike in Canada took me into Levo and to be fair it kept me very well for a long long time but started failing me so back on NDT. I've always though the scientists have a far better grasp on what is happening but sadly I also realise that treatment will be very slow to change on the clinical side with our future doctors. The increase in cost has been a real blow to many of us as adding T3 was getting more common. So a set back we could have done without and I'm still cross that the NHS didn't pick up on what was happening earlier. Thyroid Uk are fighting our corner for which we are very grateful so we must keep up the fight for wellness on many levels. If we can more easily aquire things and prove the effectiveness then the attitude of clinicians will surely have to change over time.
Yes. The costs for T3 have become insane. I can still order 50 twenty-mcg tabs of T3 made in India for ~$30, when they are selling 100 five-mcg tabs for $109 on one Canadian web site, but on a US discount drug website, you can get a coupon for 100 twenty five-mcg tabs for $37.70, with the estimated retail price ranging from $119 to $127. Of course, whether or not the store will honor the coupon you print is up in the air.
I was on carbimazole but endo at the time thought might get better result with ptu. I took just one tablet and spent the next ten days vomiting and diarrhoea - both yellow. Absolutely due to just one tablet. I said at the doctors what a terrible drug it was and was told many people benefit from it. All I can say is that these folk must be in a strong place to start with. I have now got my carbimazole down to 10mg after ten years and know my body so well - finally feeling good about myself. I think that's what it is all about, not letting the consultant tell you what you are going to do, being able to tell the consultant how you feel and them listening. Seems to me that all the endos I have met tend to specialise in diabetes!
I can tell you both those drugs are poison.. my system would not take them especially the PTU my Gp insisted I take it eventho I was vomiting had server upper quadrant pain ad server runs..and felt like I was dying...then I was rushed to hospital because of the medication...then they gave me 8 ptu in a&e then 8 the next day the most i was prescribed was 2 a day..well I was so ill they rushed me down for a scan on my stomach and bowls which showed server inflammation and a thickening of the bowl I kept saying it's the PTU. It took over 3 days for them to belive me then they took me off them.....idiots..
That's awfully, sorry you had such a terrible time, that really is AC shocking story.
These are the kind of doctors we need and are beginning to surface. You had a terrible experience handled because these people are not trained for what we have.
I've watched many of these interviews but they are ending today. All impressive.
My endo didn't even know the symptoms of an overactive thiyroid l told him all myour symptoms..shaking.sweating.fatigue. fast bowls.server itching..he dismissed them as being anything to do with hyperthyroidism....well he got a mouthful of me I told him to look on the NHS website it's all their every symptom my bloods came bk as hyperthyroidism..graves...I have no time for idiots I found him very rude how do they get away with it...
The thing is this.. there is nothing wrong with the thyroid.. it is the immune system that is attacking the thyroid. From my experience too the tablet carbimazole is immediately dished out to all patients without looking to the root problem the cause of the issue why is the immune attacking the thyroid. I feel the Endo consultants or doctors are too relaxed in their own knowledge without finding out the cause. The reason for this it is not part of their work knowledge.. their job is to give Carbimazole and be done with it. What Carbimazole does is mask the symptoms it is not a cure. I wish you well.
Yes that was my thinking I have graves so why don't they sort the immune problem out instead of fiddling with the thyroid 😡 My only option is having my thyroid removed 😡
I have Grave's disease too. It was diagnosed around December time 2018. My choice is not to take any tablets at all I have refused because my symptoms are zero. However I have antibodies I am not worried. Having your thyroid removed in my opinion it is not a good choice unless you are suffering terribly. By removing the thyroid anyone who undergoes this procedure will be on tablets for the rest of their life
Unfortuntly for me my symptoms are awfull I'm bedridden most days as the fatique and I'm exhausted I sweat all the time my shaking is bad and I scratch myself to the point of bleeding I have skin whelts where I have scratched I have bold patches in my hair and my nails are thin and break all the time my bowls are fast and iv lost about 2 stone in weight and are still loosing my life at the moment is hell..my mother had under active thyroid and took the meds for that she was much better so I'm hoping it works for me as this is hell..😭😭😭😭😭😭
Yes i follow Mary Shoman after Drs. Even endocrinologist did not offer anything but synthroid. Mary said most only have an overview of thyroid but do not know even what latest range should be...had to research on my own now nationwide shortsge of Natur-throid!!
I think you have grounds for a complaint of malpractice.