Hi all, I forgot to mention in my previous post yesterday about my endo referring me to ENT as I have the problems back of foods getting stuck in my throat again alongside other probs, I initally had the problems before my diagnosis of thyroid disease, hashi and according to endo graves, when I started carbi it seem to help in getting rid of it but now I find it has returned again, as you know I'm still on carbi 2.5 mgs every other day, even though in range I feel rubbish .my frees are bottom end and could this be contributing towards the way I feel, just wandering if anyone else has seen ENT and what was your out come😊? I did have barium swallow back in august 2017 whichvwas clear.
Anyone seen ENT to do with the thyroid? (swallo... - Thyroid UK
I saw one, long before I was diagnosed. I told him I had a permanant sore throat, a throaty cough, lost my voice frequently - often in mid-sentence, felt as if I had a golf ball stuck in my throat and had trouble swallowing. He stuck a tube up my nose and down my throat and told me there was nothing wrong with me. He obviously didn't know that they were classic symptoms of hypo, and that the thyroid was right next door to the eosophagus, and that it was probably swollen! And, neither did I, at that time, more's the pity.
Thanks gg, I have had one done around 2 years ago when I was suffering from a sore throat, I have a feeling this is to do with my thyroid being swollen too and my meds as you know my frees are still not nudging towards higher and, funny this started when my thyroid was diagnosed and then it improves, well we will see what they have to say, who would believe this butterfly shaped gland would cause alot of unpleasant things but after all it is the master gland.xx
Hi really fed up, my frees are more on the lower end of the scale than the higher end free 3 is 4 (2-5.5) and free 4 is 13 (9-23) I had swallowing problems when I was hyper too and when I was hypo in December, endo insists I stay on my current dose for another 2 months and then come off it altogether, I feel he has said this because ent appt will take around 2 months. So I'm stuck feeling like crap.😊
I had an endoscopy a few weeks ago because sometimes food gets stuck in my throat (can be very painful) Apparently everything is okay!!!!!
I see you had a over active thyroid 2 years ago, perhaps you need bloods done, my probs only started when I had thyroid disease.
I’m on 125mg, 150mg every other day. Sugar is high- ish. In diabetes meds also 😩
Same here R Michelle problems started when I got thyroid problem I'm getting breathless too had endoscopy done last year seen by ent twice even three times all normal but ultrasound s showing thyroiditis and both lobes are enlarged still answer is ur blood results are normal I'm fed up with this emailed the endo she called me back and I did ask her my reason to come back to u was my painful thyroid with ridiculous pain in my ear and same side head that's how she said that OK I will give u another appointment
Yes blood results may be normal but not optimol for you samy, im the same normal but my frees are still not high enough for me but endo wants me to stay on dose but i need to feel better so im going to every 3 days now instead of every other. I think having hashis does not help either, endo refused another ultrasound as he says nothing grows that fast since my last one in march, im not convinced though so im off to gp to request ultrasound instead. Its a nightmare isn't it samy as we spend most of our bloody lives at the medical practice!!😠
It is absolutely a nightmare I just been to my GP did ask her abt my last year cortisol level it was 169 range was between 170/...500 so I was low she goes oh it all depends on the endocrinology then she dogged into it and said oh lab did ask to do further testing I was like really after more than I year so I have no trust ...I was complaining and was keep going back to GP and when HD sent me for the ultrasound guess what I developed 10 mm noudle on it which I did not have in my previous scan so ask ur GP for as mother ultrasound
I will ask for another scan as i do not trust them either, nodules go up and down according to where your levels are and meds. I have several nodules but 4mm each, i think they shrink if meds are right, pain in the butt it all is, ive never had a cortisol test i must get this done. It does not shock ne about the medical profession being so slack with peoples health, we have to do our own chasing for things. X
My noudle is 10x10mm and bad thing is I'm not on any thyroid medication since October 2016 even I have graves disease and thyroiditis which GOd know which thyroiditis it it but this new endo believe it is hashimoto
When did you have bloods done last at what were your levels like samy?
In April this year through medichecks tsh was 2.27 I think t4 was 15 and t3 was 4.6 tpo antibodies were 32 and thyroglubin were 46 probably thus new endo checked tsh in august which was 1.48 and she checked grab antibodies which were 0.04 which I think were borderline did not get any ranges this time but u know the medichecks ranges but I. Getting terrible internal tremors getting hot quickly but feet are cold terrible headaches I have to eat to get my energy levels a bit back which is crap doctors don't understand how was ur appointment the recent o e?
Food hurts my throat it get tight sometimes hard to swallow hard food my vision is getting really bad his s ur pain like in ur thyroid and ear do u get it inner ear or outer ear pain mines gets really bad for few days and puts me really down but I do get it on daily basis
Sometimes it hurts to swalliw my cuppa too, i get pain in the inner ear stretching to jaw and sometimes a heaviness around the back of my neck too, used to think it was a virus but i surpose it could be a hasi flare too as my tpo was a whooping >900. I get the shakes too usually before the tight throat thing. My endo appt was a waste of time, just disagreed with everything he was saying and he kept harping on about the great tsh god, he liked the sound of his own voice, in a nutshell.....stay on carbi , wait for ent and then he will see me in 2 monrhs hopefully to discuss coming off it. Then
."next patient please"
Oh gosh that's how they are never came across anyone who agree to u that yes they are linked like u my ferritin which I brought up to 62 after supplementing as soonest I stopped supplementing it came down to 32 mine now even I feel like a wound inside my right lobe hate it when the doctors don't listen
Ooh don't start me on my ferritin!!its just one problem after another, hopwfully when i see GI in november they will do something about it- proves what a idiot gps are mine even said if you are celiac and once you start eating no gluten then it should not effect your vitamins and minerals.....what a load of dribble-ive not touched any gluten or soya in over a year and half now. Anyone knows that most celiacs have a absorption problem!😨
Couple of my friends they are celiac but still they do eat normal and feel normal bcs they don't have thyroid problem ....my GP did blood test for celiac but came back negative now I been referred back to GI again bcs of my burping and pain issue which all Started after thyroid problem and bcs none of the digestion medication or herbal remedies are working for me she said they won't work if they are not made for that problem she was talking abt PPI s which was a relief for me that at least she know s what she talking abt
Samy be very careful with ppi as they interfere with thyroid fuction, i spent a few months on omprazole as discontinued last year as they were making my thyroid worse, when you come off them the withdrawal symptons are horrendous with horrid pain and dizziness and excessive acid, i used them for for my hiatul hernia and reflux, they are good as they block all stomach acid but also react with other things, memory loss dementia, gps dish these addictive tablets out like smarties and they should only be used very short term, do some research on these ppis and see what you think, alot of people become addicted to them as coming off them is awful.
I cannot eat any gluten but if they are celiac tell them to be careful as the damage is inside the body (gut) even if you have no problems you are still doing damage, my gi specialist said that if you carry on eating gluten when you are celiac you are increasing your chances of having lymphona cancer and other quite nasty things, frightening thought i did not need to be told twice.
How are you feeling today samy, im not to bad but ectopic beats started last night so that kept me awake, im going to ask a strange question now...dont laugh😆, im sure i can feel my thyroid move around especially when i turn on my side at night, very unusual feeling, have you experienced this at all.xx
I'm not taking PPI only took them for two months then I stopped taking them myself bcs they were not helping ...since I have developed a goiter I feel it in my neck now and at night when I change my side I feel stretching pain another new think at first ultrasound only one side was enlarged now the other side too mildly enlarged ..how do u feel during the day I start feeling how do u explain lime my brain starts its like rushing and woozy agitated feeling which starts around 1 pm midday and stays there till 7/8 in the evening its like low sugar level and I have to eat proper meal to calm myself then like hot flushes so strange I don't understand it
Sorry already had goiter its the noudle now
Sorry I have heard ectopic beats how would u describe them I get that instant tremor and shaky at nights whilst sleeping but when I check my pulse sometimes it becomes fast sometimes normal
My ectopic beats were picked up on a heart monitor they are extra beats, they feel like a few heart beats at once, feel quick and i feel like my heart does a flip over, can be bit more breathless with them, ive been plagued by them since yesterday, cardio did not want to see me for more investigation but if they become really erractic to be referred back, i still get a few trembles and shakes too, 😕
Hey samy yoy need to get back on your iron tablets as you are very deficient like mine, symptons are. Shaking, palpitations, breathlessness, tremors, exhaustion, it can be very serious and put strain on your heart too. Get supplementing!! Your free 4 is just above mid range too that could do with lifting up, tsh good do with coming lower too perhaps ?
Yes u r right bcs when my ferritin level was 62 my shakiness has stopped but it has come back again no palpitations but breathy shaky internally anxious..my free t4 range was 12/22 so where I'm in the range what u think result was 15.1 and latest tsh was 1.48 done by endo
Can I ask u which one u taking to raise ur ferritin I was taking ferrous sulphate 200mg a day with 500mg chewable vitamin c
My ferritin us still dire samy as i got to ve referred niw, cannot take ferrous fumerate or ferrous sulphate as both made me very ill, i have ferrous gluconate tablets to take but im finishing off my bottle of floravital liquid first , thus agrees but it only maintains my iron where its at now at 23 and the starting range is 28. Im hopung gluconate tablets will raise it. If i was you go vack to your gp and get some more as you are lucky to ve able to tolerate them; no need for you to be feeling rough with that aswell.x
Ive nit felt great over a week now, at this minuete i feel slight jittery and breathy with muscle wealkness and few palps but still going out as it makes me feel better out socialising but come around 7-9pm i start to get that horrid tight throat and feel jittery again like anxciety but nothing to be anxious about....just this damn disease. I still try to be positive as i know ive had good times but whilst still stuck with carbi then its abit rubbish.x
Same here just different timing I try to do my kids school runs and meeting ppl there and going out too feel better same with me its not im anxious its that rush feeling in my head and body makes me feel like that I felt better on carbimazole for few weeks but as soonest my levels become low felt really bad that's y this new endo thinks that's bcs I had carbi for such a short time I might have graves and hashi bcs my ultrasound s keep showing thyroiditis and I had positive antibodies for graves disease ...ahhhh
Hiw long were you on carbi was it 6 months?
Rmichelle no was on carbimazole for only8/10 weeks
Bcs I was diagnosed at the end of may 2016 and in June I was put on carbimazole by mg GP then endo did the antibodies and ultrasound and in mid if September my GP stopped my carbi bcs I was becoming hypo and endo discharged me in start of December saying my blood results are normal even I was complaining abt pain and intermittent pain was started in the other lobe too but he said no nothing is there and now in June ultrasound showed my other lobe is enlarged too that's how bad they are I have no trust on them
Gp had no right in stopping your meds, they are not allowed to treat hypers, your endo does not sound good at all either samy. When i was hypo in december they titrated me down instead.☺
That's y when my other GP sent me for ultrasound in June this year and they found noudle my GP referred me to a different one she discharged me as well after doing bloods saying I will become hypo in future I emailed her back she called me and I did ask her that u discharged me without finding out y I'm getting this bad pains from the past two years she said OK I will see u again in end of November and will do further testing I'm just praying that she does send me an appointment that's what she said that I will get the appointment letter so I'm waiting
Oh my goodbess that has to be the shortage time ever!! Why did they just not reduce you down to a tiny amount, it does not make sense!! 14 months later im still on it and endo says no.x
That's what I was keep asking my endo gave him example if few other ppl who were on really small dose for 10 years but he wasn't convinced I even asked him to use the combo treatment thyroxine and carbi but answer was no and showed me my way out to the door I cried a lot bcs I was suffering bless this group and another one I got a lot help abt nutrition levels otherwise I was bed bound that's y now when they say normal I do t believe them ...that's the reason new endo convinced that its auto immune thyroiditis I have
I would still persist, you have a thyroud problem too?
Well this is an eye opener, I have throat problems, especially with swallowing and I never knew it could be connected to my thyroid. I often struggle to swallow food and when taking supplements always have to wash a lot of them down with plenty of water, even then they can get stuck and they seem to burn too. Do you also experience your throat closing completely if something hits it unexpectedly? I've had this happen for some years and it's very frightening as when it happens you can't breathe. I got globus a lot too, still do sometimes. I'm still waiting for an appointment with an Endo in Manchester, so far it's been 4 weeks and no sign of one.
Hello there yes my throat does close up, I cannot gargle water sometimes.....it's impossible it just comes straight out, when I've ate I drink plenty too, it seems connected to my nose aswell, I do not rate my endo ( I'm on my 3rd one) but he did say that thyroid disease causes many things digestive probs and swallowing...I've had ultrasound 2 times which confirmed modules and slight thickening but next step ent. I only had there probs over a year ago when diagnosed and took carbimazole which sorted that problem out but now I feel my levels are not right for me it's returned, do you get pain in the ears and jaw too? I have to eat carefully at moment and short of breath particularly after eating.
Endo appointments are a long wait, I waited 3 months for my first appt and then every 3 again for follow ups. 😊
Looks like i do not need to tell you about endos, just had a look at your bio.
Hi Espeegee, I have hashi's and achalasia of the esophagus. Weight dropped to 51k's, due to vomiting from food being stuck. Was sent to a speech therapist. The speech therapist had me swallow solid food, 9 pieces of tinned fruit,) with some radioactive liquid, so they could trace the food as it was swallowed. This xray can detect abnormalities with swallowing, just as a barium swallow can, only a better picture with actual food.
I don't get pain in my jaw or ears but both can be tender to the touch so I try not to touch them lol. I have plenty of shortness of breath though, not just with eating but any thing simple like bending over to pick something up. I had an ultrasound which showed some nodules but I was told that if you stopped a lot of people in the street they would have nodules too so they weren't a problem.
I disagreed with my endo on that discussion, majority of people to not have problems but what about the ones who do!! I will keep persisting, I also get breathless too bring meds are not good and I'm trying to raise my iron levels up from the ground after not being able to take tablets, I am looking at a of infusion at the moment. Good luck and don't give in!!
It's such a waiting game isn't it. I've finally found a GP in the practice who's happy to help but she's not that knowledgeable, I feel as though I'm telling her about the thyroid and quite honestly I'm a bit confused about what's what, there seems to be so many different aspects of thyroid malfunction and I'm just hoping that at some point I'll get sorted out. I'm finally seeing someone in gastro-enterology about my continued high ferritin but the reading I've done is suggesting that obesity can be responsible, I'm going to be a bit embarrassed if they tell me it's because I'm a fat lass 😄!
High ferritin can also be due to inflammation in the body, could it be that?
Endo will not even speak about immune diseases, i have told them countless times that immune diseases play a massive part in being symptomatic.....then the eye rolling begins and talking down to you like we are idiots.x😨
I saw ENT for swallowing issues....and that was a huge,huge mistake they misdiagnosed thyroid cancer.
Oh how awful, so it was not cancer right?
What are your thyroid blood test results showing? Do you need thyroxine now rather than carbi?
Its a long story, but was hyper with graves and hashis 14 months ago, im on titration doses of carbi 2.5mgs every other day but saw endo on tuesday and he refuses me to come off carbi yet, i have argued his decision as my frees are more to lower end of range free 4 is 13.00(9-23) free3 4(2.00-5.5) tsh 1.87(0.32-4.80) my argument is ive not budged at all on moving my frees up to higher end as thats where they should be in order for me to feel better, i feel carbi is keeping me ill now, he said he wants me on it for a further 2 months until i see ent at least because of relapsing....i was in range back in november last year but then fell to hypo so titration doses were implemented, if i come off it he will be bloody fuming so ive decided to lower again to every 3 days in hope it will raise my frees, i had these probs when i was first hyper and then when hypo, they do not give thyroxine they just lower carbi but i have hashis so i am eager to come of carbi, its very toxic. I do not understand whats the difference in coming off now than in another 2-3 months(you can still relapse)😨😕
I have seen ENT twice and been told all clear, scanned my lymph nodes at a different clinic too. since this started I have had a sore/ swolen throat, hoarse, gets worse around my period and sore left ear/behind ear. I had some swelling of the lymph node on left which ENT said was because it was on mastoid bone. all in all a waste of everyone's time.I think pollution and stress affect mine both of which I am working on
Thanks for info london81, mine gets worse around period too and more breathy, curse being a woman!! I think you are right about the stress thing though, i was really goid at handling stress before but now rhe slightest luttle bit of stress i can feel it swelling up, so peeths me off.☺
I went to see an ENT surgeon who made me wretch when he touched my neck as I had a larger goitre but he said if you have difficulty choking and swallowing then the op might be advised. Have you seen the ENT yet? If not then I would go to the hospital if you are still having all this trouble. Take care.
Ent appt coming up in next 6 weeks, i will see what they say, endo has discussed op if still having problems after coming off carbi. Its not all the time but around 3 times a week. I did see ent 2 years ago but all clear then.😊
Is this PMT every three weeks with added fluid retention? Six weeks is a long while but may be this is to do with your medication being too high?
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tests which came back with these results among others:
TSH: 0.445 (range 0.65-3.7)
Free T4: 16.2 (8