Hi,
Just wondering if anyone else suffers from thryoid pain. As well as this, I seem to get it in my lower chest/upper abdomen, around the sternum..as if it's trapped wind.
What do you do when you have the pain? What have specialists recommended? This is getting worse despite going gluten and soy free.
Thanks.
P.s scan showed enlarged right thyroid, but getting my pain in the left. I'm looking at going paleo to help symptoms.
Hello Michaela,
Have you been diagnosed with a substernal thyroid or does the pain radiate down from the neck to your chest? Do you have trouble breathing? Is the thyroid painful when you touch it or is it just painful?
When you say your scan shows enlarged thyroid, is it what they call diffused or do you have any nodules? Is your neck swollen?
Sorry for all these questions but I am trying to understand your problem to see if I can help you. All the best.
Hi, my Dr hasn't actually told me the results just the woman doing the scan said it's typical hashimotos and not that big, she's seen bigger. I do sometimes have difficulty breathing, it's beginning to feel like a have an intermittent chest infection..very odd. It can be just painful, and when it's touched it's uncomfortable..as if someone's lightly strangling me..which sounds terrible I know. Pain can radiate down from thryoid to chest, mostly in thyroid. Neck used to show an obvious goitre, but since been on a forever changing dose of levo, it's done down I believe.
Thanks
Is it possible to get a copy of your scan report?
I've looked online and apparently not. I will be asking when I see gp again. Sick of this.
I feel you. It will be helpful to know the results to know why you feel that way. Sending you best wishes and post when you have news.
Thank you so much. As soon as I feel like things might be getting better..ish, here comes another horrible thing. I know were all going through it, I just wish it was simple!
The problem with thyroid - it’s never simple - as I have discovered and continue to discover ... but this forum is a great place for us to learn from each other. I hope you feel better soon.
It's been a great help. Thank you. I'm at the Drs on 10fh July so I'll comment then.
When you do, please post latest thyroid bloods including your Hashimotos antibodies. I just noticed your earlier posts about Hashis.
Hi, I definitely will..I might go soon to drs actually, it's still hurting.
Dr reluctant to recheck tpo antibodies but I convinced him aha. Said thryoid scan showed enlarged thryoid on the right, as well as being more vascular. Left is ok, it's not sitting too low etc.
Glad you did! Let’s see how the tests work out.
Aye. I'll be so upset if my tpo antibodies have increased...gluten and soy best be worth it. Just say it's swollen so I'm on ibroprofin, which I'm not a fan of taking.
In the UK we have a legal right to see our scans and test results. I'm not sure how you go about getting a copy of the scan though - have you rung the hospital where it was done? You might have to ask for an "Enhanced disclosure" or something like that. But you do have a right to it
Hi, ye I use system online to obtain my results but scan isn't on there unfortunately.
My doctor's doesn't have online access results, and I don't know about copies of a scan, though you should be allowed to see it somehow. I have heard of enhanced access, or is that just for blood tests? Maybe if you rang the hospital?
I had an ECG recently and had to take it to show the doctor, but the envelope was left open so I took a sneaky photo of it first! Don't understand much of it, but did find out that the pulse rate and list of other levels written at the top were within normal limits, so that was good.
It was my GP surgery which did the scan 
My ECG wasn't normal, although it was sinus tachy I had some T wave changes...makes sense now. This was before I was 'diagnosed'.
You know a lot more than me in that case! I still can't remember what a T-wave is, except of course that waves of precise electrical activity pass through the heart with every beat.
Well if it was done at the surgery they should allow you to see it! If they say they can't, ask why not because it's your legal right to be able to access your medical records if you want. You may have to fill in forms or something but it is your right.
I'll get a report or something at some point
Aye, I'm a registered ODP within the NHS but it doesn't mean they listen to you! You have anxiety and depression..oh really? With a TSH of 26! Started off years ago collapsing, recovered...then a couple of years ago my heart was an issue, then felt faint a lot, then my eyes...after looking at my bloods, I've been ill for years which is why I think I'm struggling now..if it was sorted years ago, I think I wouldn't be as bad now! I'm angry about it, and I know I shouldn't be..but, I think since it ruined our wedding day and had to cancel our honeymoon and affected my career, I think I'm allowed to be. You think you're ontop of it then heres another thing. People go " once you're on medication you'll be fine"..don't have a clue!
Before you rush off to a specialist. Just try taking a little more thyroid/levo/ndt. Your pituitary gland is wacking your thyroid gland with thyroid stimulating hormone sayimg make more T3/T4 you lazy gland. But the poor old thyroid is shattered and can't do it. It's waving the white flag and hurting. The pain will radiate up or down you neck, into your ear etc. The chest will be just sore intercostal joints from not enough thyroid too - very common. Surprised you dont have sore finger or toe joints too.
J
Hi, so I was on 100mcg on levo, then A&E reduced it to 75 following me not being able to breathe properly and this pain. Dr put it up to 87.5 the other day (tsh 4.4) and the pain started again. It's worse now though :S it feels like I have a pressure there and as if I have a chest/throat infection. Then there's the pain I got last night which wasn't pleasant.
Thanks.
Levo makes some peoples breathless. Google "levothyroxine and breathlessness". I know you are stuck in the NHS but I'd be trying some privately sourced NDT
87.5mcg isn't a high dose
Bloods should be retested 6-8 weeks after each dose increase
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
TSH should be under 2. Most Hashimoto's patients need TSH under 1
FT4 at least in top third of range and FT3 at least half way in range
When were vitamin levels last tested?
Sounds like you may need addition of small dose of T3 once you get Levothyroxine high enough and all four vitamins optimal
I have a similar problem like a bubble stuck in my chest. I raise my arms over my head and take slow deep breaths. This seems to relieve it.
Ye, I sometimes feel like a bubbles in my throat..but it's like an agitating ache into my chest right now as well as pressure on thryoid.
Have they found out what it is?
Thanks.
Hi Micheala,
I have the same sensation of bubbles in my throat too, since being diagnosed with a underactive thyroid I have never felt so ill, I can't seem to walk far without getting breathless.
I have tried various dosages of levothyroxine, I am now on 75g, still feeling awful, although I haven't got my heart pounding so much.
I have tried stopping Levo altogether, has I felt so ill, I felt better for it, until I had 2 GPs ring me up to tell me I must start taking them straight away... has my TSH level in April was 42.5.
I dont know much about underactive thyroid, but this forum is excellent.
Hope things start to get better soon.
Hi, bless you. I'm finding my dose constantly changes and although I can tell when I'm hypo, this pain is new. Started taking b1 with co enzyme Q10 to help with energy..but ye my heart still messed around, head feels off, I feel spaced out when hypo, pains everywhere, gut issues...the list goes on..and yet so many people tell me that I should be fine.. ugh... I'm struggling with my career and life in general...I have good and bad days, but I'm never normal.
Thanks and same to you.
I have never felt so ill in my life, I work in theatres too, I find I cannot run around like I did, not to mention the various shift patterns and on calls ridiculous. I haven't got the energy to do anything too strenuous now.
Yes everyone says it will settle down, I had my diagnosis in November still struggling..
Good luck...I have another blood test on Friday, so see how it goes this time since levo was reduced..
Takecare
There's an awful lot of people in theatre with autoimmune issues :S worrying. I was kind of diagnosed last year, April time.. except I was told by endocrinology that I was fine and needed antidepressants! So I've put in a complaint to PALS. I ended up crying in occy health the other day..I said I can't do calls and standbys, it makes everything worse. I reduced my hours but I'm just ugh..it's hard isn't it. I'm very bitter, very..various Drs have ignored my tsh and the fact I have tpo antibodies. I've gone gluten and soy free, got myself a water filter..etc.. I'm fed up.
Sorry, I think I missed the point of your question, but a nice slow deep breath always feels good.
It does.
I essentially have your symptoms but never considered it as thyroid pain. They have not done a scan. I was thinking Parathyroid as my calcium levels keep running high, thyroid levels within range. My hormone levels are low and we're trying to get them up to see if calcium levels come down.
I find that belching or having BM seems to help with the feeling of eccess air in the chest around sternum. Sometimes when it feel inflammed I can't take a deep breath. Also when a certain vertabra is out of alignment it feels as if I can't completely fill my lungs or swallowing is difficult. But if I realign the esophagus it begins to improve immediately.
Hi, I'll have a look at my calcium levels being done thanks. Ye belcbing sometimes hurts but it just feel sore and inflamed. Dr had a look and said it felt swollen so reluctantly rechecked tpo antibodies, ft4 and tsh. What bloods do you have routinely done for parathyroid? Thanks
The parathyroid test are PTH and Calcium levels.
Sorry it took me so long to get back to you, I forgot your name and couldn't find the thread.
Let me just ask, have they did an MRI of your cervical spine? If so do you still have the curve in your neck or is it straight? Do you have pinched nerves there or demylination of the spinal cord? How are the discs between the vertebrae? These are things you may want to ask your Dr. if you don't know the answers.
It’s easier said than done, I know, but try not to anticipate bad news - it will stress you out and your antibodies will go up from the stress. I feel for you - it’s tough to wait for tests and results. All the best.
Thanks just fed up now. Last time it did this I ended up struggling to breathe, and once again it's doing the same thing..I'm able to breathe but it's like as I'm falling asleep I'm 'forgetting' to breathe. I sound crazy..kind of like an obstructive sleep apnea from a swollen thyroid. I'm not even sure if it is that, but I can't find much on it. I know there's a link between hashimotos and sleep apnea but I'm not convinced. It's just very strange and unsettling.
Hi Michaela,
I’m so sorry about this - I know how awful it feels not to be able to breathe . I had asthma as a child before all the current meds and I gasped for air until I was 12 or so- and I have sleep apnea now. I empathize.
You may have sleep apnea from your thyroid- after my TT my apnea readings on my machine went from 5 AHI to 0.1 because the thyroid was no longer blocking my windpipe. And I was told there was no blockage by the radiologist when they did the CT scan.
I wish I had some advice to offer you - I had Graves and still had apnea, so maybe it’s related to either of the autoimmune diseases, but I’m no expert on that by any means. It may depend on how large your goiter is.
I just wanted to reach out to you. Can you get a cup of herbal tea? Maybe prop yourself up in bed instead of lying flat? That used to help me.
Wishing you all the best and sorry I can’t be more help.
Thank you, just having someone to talk to is nice. I have asthma from previous pneumonia as a child, but this isn't anything like it. Last time it did this they reduced my levo, but every else is saying keep the dose up. I thought I was starting to feel better but this is just horrible. I feel like if I mention sleep apnea to GP that I'm not gonna be taken seriously. This is horrible, how did it feel to you? Honestly, it's like I'm forgetting and I end up having to take a big gasp. So now I can't sleep.
Hi again,
That’s exactly how it feels when you have apnea. If I may make a suggestion - tell your doctor that you are snoring and that you wake up in the middle of the night gasping for air. Tell him you get tired by 3 in the afternoon and feel like taking a nap. Tell him you wake up tired as if you haven’t slept all night.
That’s how I felt before I was diagnosed with apnea. I thought I was just tired - to my great surprise, I had apnea! I never linked it to my thyroid - who knew? I just thought I was working too hard, had too much stress, and wasn’t sleeping enough. When I told my doc about that, I got an apnea test and my confirmatory diagnosis from the sleep center.
DO NOT mention your thyroid when talking about the breathing. Keep it a separate conversation. Doctors tend to compartmentalize and they are not good at connecting the dots. That way, he won’t think you are attributing everything to the thyroid. That’s when they dismiss you and say you are exaggerating.
It’s funny, sometimes I take a nap without my machine, and I wake up because I can feel my throat close, even now post surgery - I have become so used to the machine.
And again, sorry you can’t sleep. It’s only 8:45 pm here - and I know it’s the middle of the night where you are. It’s so hard when you feel bad late at night - I know I feel so alone and upset when that happens to me. I’m glad just having a friendly voice even if virtual, helps you .
All the best, and hope you do get some sleep tonight. I listen to podcasts when I can’t sleep for whatever reason - a talk show that is really boring can put me right to sleep even if I think it can’t happen.
Knowing my luck, if I was sent to a sleep center, it wouldn't cause me any issues. Like I say, it's only when I have this pain in my thyroid that it does it. I'm only 27, and I haven't managed to have children yet. I had a bowel resection as a baby, I have an abberant right subclavian artery, hypertension, now this...I wish it let my live my life first.
Thanks for your help, so scared to go to sleep.
Big hugs from across the pond 🤗. It sounds like you have your hands full - but hang in there - I hope relief is
coming for you. Maybe your specialist visit will turn up an answer. 🙏🏻 keep us posted .
Thank you. Just a shame I have no faith in drs over here, took too long to get diagnosed, even now I've still not been told what I have..I know I have hashimoto's but that's not the point. Will do.
Take care, thanks again.
Just had a look at bloods from last week, tsh 2.2, ft3 23.3 (I run high anyway) and tpo antibodies are down from 147 last year to 103..so not sure by my thyroid was swollen..
Hi Michaela,
Sadly, I am not the expert on bloodwork here - so I will have to defer to those more expert than me on the forum since I cannot interpret these. I am better at interpreting scans and biopsy results, so if hi get these I will answer your posts about those.
You might want to start a new post by posting the full blood work with ranges (your T4 is missing above and there are no ranges posted).
That way, the people who know how to read them can tell you why you may be having the symptoms you are experiencing.
I wish I could be more help today, so sorry! Sending you all the best wishes- and if I can help with other stuff, I will. 🤗
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