Feeling so despondent!!

I got a call yesterday, asking me to go to a different hospital but was given no idea what for, other than to say it was to do with my thyroid problem. My recent ultrasound report was a bit over my head but basically seemed to outline that I have varying nodules, one of which would need an isotope scan to rule it out being sinister, so I thought it might be for that.

However, the doctor I saw, told me my only reason for seeing him today was to rule out me having cancer. He read the report of my last ultrasound and said he would line up a further ultrasound and fine needle biopsy. I asked about me having the isotope scan requested by my G.P. and he just shrugged and said I could have it if I wanted it but he didn't think I have cancer.

I then asked about the cause of me choking, as I assumed with several nodules showing on my scan, one of 18 x 11 mm , that would be the cause of me choking really badly every day. I was told my nodules are too small to cause choking and he thought I had globus something or other, caused by stress. I told him that was rubbish and asked what he suggested to help. His condescending reply was to cut my food up small, put more gravy on dinners and dunk biscuits in tea!!! I wanted to smack the man one. I know my body and know this choking and constant feeling of my throat being blocked is NOT stress. I asked him about the nodules being to do with possible Hashimoto's ,as suspected by my G.P. and he said it doesn't matter what name the thyroid problem has and that an endocrinologist is the one to discuss that with. Fair enough, I've already asked my G.P. for that referral but that last ultrasound report actually states 'no sign of Hashimoto's'.

I feel like I'm going round in circles. Why can I get no proper answers?

I now have to wait several weeks for this other ultrasound to rule out thyroid cancer, wait for an endocrinology appointment for who knows how long, I'm waiting on a coeliac test now too, to see if I have that as well as Type 1 Diabetes, Vitiligo and Alopecia Areata I already have and I still don't know what this latest thyroid thing is if it's not Hashimoto's.....even though the antibodies test came back at 380. I know some of you on here feel it is still Hashimoto's and I think I do too but I can't go on with this constant choking and no help. My husband has got me in to see a different E.N.T. doctor, privately, on Monday but I don't think I can face one more person telling me it's just anxiety or stress!!!

Excuse me while I have a five second scream................aaaaarrrrrggghhhhhhhh!!

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  • Chocoholic, radioactive thyroid scans are usually done to determine whether a nodule is 'hot' ie secreting hormone and causing hyperthyroidism. Ultrasound guided fine needle aspiration (FNA) is done to check whether a single suspicious nodule is benign or cancerous.

    18mm x 11mm nodule is small and unlikely to compress trachea and cause swallowing problems. Globus sensation is the feeling of having a lump in your throat most of the time and may be nothing to do with your thyroid gland. I used to feel as if I had a lump of apple stuck in my throat and I still experience it intermittently post thyroidectomy. It can feel worse swallowing saliva and can be temporarily relieved by drinking a few sips of liquid or eating solids. It used to be thought that it was a stress/psychological reaction but that was discounted some time ago.

    Elevated antibodies mean you have autoimmune thyroid disease (Hashimoto's). Doctors are more inclined to call it thyroiditis rather than Hashimoto's. The ultrasound report 'no sign of Hashimoto's' just means there is no visible sign of Hashimoto's damage ie coarsened texture of the thyroid gland or smaller than usual size (atrophied).

    I hope you have a better consultation with the ENT on Monday.

  • Thank you for your reply, Clutter. Do you think I'm wasting my time with seeing a different E.N.T. Doctor, then? I honestly don't know what to do for the best. My feeling of throat closing over just feels worse when I try and eat. I end up coughing/choking until I have tears running down my cheeks ( not crying, it just makes my eyes water) and I feel exhausted by the end of each episode.

  • Chocoholic, No I don't think you're wasting your time. Actual choking doesn't sound like Globus Sensation. Does it happen when you swallow fluids too?

  • No. I am okay with liquids. I have particular trouble choking on rough textured bread, cereals, rough textured biscuits, that sort of thing. I'm trying to stick to smooth textured foods like ice cream, home made soup, yogurt, lightly scrambled egg etc which I have no problem with. I do occasionally go into a coughing /choking fit out of the blue though. I was just reading a book the other day, when I had a real bad one.

  • Chocoholic, it almost sounds as though you aren't producing sufficient saliva to moisten your food. Try drinking diluted lemon juice before you eat to stimulate saliva and do mention it to the ENT.

  • Okay. Will do. Thank you for your advice, Clutter. Much appreciated.

  • When I was nursing and we had patients who had swallowing problems, they were advised to drink fizzy water during meal times. This may help you. Apparently the bubbles help. Clemmie

  • Thank you for your tip, Barrister.

  • chocoholic i am really sorry to hear about your distress. have you emailed louise warvill for names of suitable/sympathetic endos? I too have Hashimotos diagnosed only after I insisted on TPO test. Endo not interested in treating even though I complained of sensation of pressure in my throat and couldn't bear clothes or bedding near my neck. (Private scan showed severely atrophied thyroid, no nodules though.) I also have coughing fits totally out of the blue as though I have breathed in a spec of dust that has caught in my throat. For me it is reassuring to hear that someone lese has the same problem, that i am not turning into a hypo hypochondriac!

    I decided to go gluten free and it has helped reduce my antibodies. I also take selenium, Vit D B12 etc etc as recommended by so many on here and feel better for it. Do hope you get some answers.

  • Thank you for your reply,crimple. Yes, thanks, I got the list from Louise but would have to go to London to my nearest on the list and I don't feel up to doing that journey at the mo'. It sounds incredibly lazy but it's a struggle to get out of bed for just half a day now.

    My G.P. has referred me to an endo more locally and he does treat thyroid too, so I'm hoping he might help.

    I just hate it when doctors keep telling me it's all stress. The only thing making me stressed is medical people not taking me seriously about how I feel.

    Thank you for your understanding, crumple. It's good to talk to others in a similar position.

  • I have Hashimotos and get the feeling of pressure on my throat often, sometimes lasting for months at a time. I lived all these years and never felt anything like this, so i know it is the Hashi's. I also have no evidence of Thyroid damage from the Hashi's, but my Thyroid is small, but in the normal range. With all the hypo and hyper symptoms, choking, i thought my thyroid would be all chewed up! I can relate to what you are going through and being dismissed by doctors too.

  • Thanks faith63. I appreciate your input.

    It's amazing how many folk have this Hashimoto's. I used to think autoimmune conditions were rare but I don't think they are by what I read online.

    It's daft because we don't WANT any autoimmune condition. We just want the CORRECT diagnosis for whatever condition we have. I think that's why I am so frustrated right now. I'll deal with whatever is wrong but I just want to know.

  • I was just where you are a few months ago. It's quite a shock to the system isn't it at how on your own you are with it from a medical professional point of view.

    My dr was determined I was depressed, had CFS or FB and to add insult to injury he wanted to refer me to a rehabilitation Dr rather than an endo.

    I got advice here and ordered my vitamins and NDT but when he said that I knew it was down to me. I was not going to wait and see my health go down the drain as he told me they like to make the body work hard for as long as possible. Not when it's under attack by Hashimotos I wont.

    Good luck I too feel like I am being strangled all day. My nodule is 2.77cm.

  • Thank you Nickinnoo1 for your message. You do sound like me. I said to hubby yesterday I am not prepared to let my body destroy itself as I wept 'why will nobody understand this is not just stress?'

    I have had a ough night. Every time I try to put my head on the pillow, I felt like I was gagging and in the end moved to another bed in a spare room and sat upright with a v shaped pillow instead. Mind you, it sounded like a hurricane outside.

    Goodness it was windy!

  • Auto-immune thyroid condition is the MOST common of all thyroid issues. As is Auto-immune disease itself. There are over 250 AI conditions - as mentioned by Prof Yeheudi Schoenfeld in the on-line summit in 2013 - The Gluten Summit. He has a special clinic at The Mount Sinai Hospital in Israel - just for auto-immune issues. I think that is what is needed - specialists who can deal with the auto-immune part of peoples health. They say it all begins with gut health and healing...yes it's a long journey but possibly worth a try :-)

    I have Crohns and Hashimotos and went Gluten Free over a year ago after thinking I didn't have a problem. I have certainly noticed improvements in joint pain - inflammation and other small changes....

    I was a long time in denial I have to say :-)

  • Over 250? Wow. I thought there was just over eighty. I do wonder if there is something environmentally that is causing more autoimmune problems. Who knows how crop spraying, genetically modified crop production etc, might affect those with less strong immune systems. Probably best not to dwell on that.

  • ...again that boils down to a healthy gut and keeping the micro-biome balanced. Once the gut is leaky - Leaky Gut Syndrome - then the Immune system is alerted and problems arise as the anti-bodies attack wherever....

  • Absolutely agree Marz. I am about 6 weeks into gluten free with a slight relapse at Christmas but have already noticed I no longer look pregnant after meals, and the joint aches are definitely subsiding. If you cook from scratch it's not hard to do and there are plenty of choices for those times you don't feel like it.

  • I only had a screening for Coeliac last Monday, so shall await the results before I change my diet, just in case they want any follow up biopsy for that.

    Whatever the result, I think my mind is made up about trying gluten free as so many on here recommend it for autoimmune conditions. I just want coeliac ruled out first and read you need to still eat gluten whilst undergoing tests, which makes sense.

    I like cooking, so changing to gluten free certainly sounds do-able from a cooking point of view. At present the joy has gone out of eating anyway. Normally I enjoy my food. I have never been a smoker or drinker and consider myself an average healthy eater but I do enjoy my home baking.

  • I have Reinke's Odema voice box swollen, over Christmas I started to get a lot of problems swallowing like you so saw the doctor. He said down to acid and gave me Ranitidine 150 mg twice a day. Made all the difference, a lot of problems with swallowing are down to the throat and acid it causes. My sister has similar problems and is also on strong tabs for it. I feel so much better since taking them. I would suggest eating slowly and as you are doing soft foods chopped, I mash veg for instance. I hope everything turns out well for you but please get some tablets for acid indigestion even if from the chemist as a temp thing before you see your doctor and try not to stress make things worse. Have faith in your body a marvellous piece of machinery that will most of the time - hopefully sort itself out given time.

  • Thanks for the tip, JanW.

  • Well, the ENT guy I saw privately today was helpful and wants to do some more tests to find out why I'm choking on my food. He wants me to take a course of Omeprazole and I'm lined up for a barium videotape thing in the morning BUT I've just read prior to the thyroid isotope I am due any day, I should not have had any other sort of radioactive treatment for 4 weeks prior to it. (Today's doctor knew I was due the isotope)

    Can anyone just confirm that for me, please? If I get no replies tonight, I think I shall have to postpone the barium test first thing tomorrow, as I can't postpone the isotope any longer, as I have been off the Levothyroxine for nearly 4 weeks, waiting for this scan.

    It seems every damn thing I face, I have to query things that the so-called professionals overlook. I'm feeling too weary to keep doing this.

    Any advice, welcome. Thanks for reading.

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