I have a question to all those people who have had a thyroidectomy please.
In January 2008 I had my thyroid removed completely when I woke up from my surgery I was struggling to breath, since then I’ve found out that I have bilateral vocal cord weakness and a narrow airway, obviously this has drastically changed my life, this was caused through my operation.
I was due to have a cyst removed from my ovary next week but due the narrow airway the anaesthetist called me to say it was too dangerous after reading my notes.
So I am now going to have to wait longer until the safest way can be found.
I don’t want a tracheostomy.
my options are not great.
I am curious to know has anyone else had the same experience from having their thyroid removed?
Another question.
Since 2018 I’ve been getting excruciating cramps/spasms at the tops of my inner thighs
It only happens at night and when it starts I can’t straighten my leg it’s really agony.
I’ve asked the doctor but not getting much joy tomorrow I am off to see physiotherapist that’s who doctor has referred me to.
any advice help be great please
It’s not like cramp in the calves.
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Probably sounds odd but could you have your operation done by spinal epidural / nerve block with sedation? My husband had his hip replacement done that way - didn’t feel a thing and woke up feeling great - also a lot of babies are born by C section using epidurals.
Has anyone recommended speech therapy for your voice?
Could anything be pressing on the nerves in your (lumbar ?) spine to cause the leg cramps? A pillow under your knees at night might help a little - then again it might not. Hopefully your physio will be able to help.
I had to have epidural to have biopsy done but for the operation they want to do they said I can’t have epidural due to the keyhole procedure which involves blowing tummy up
I worked with someone who was having problems with her voice - not for the same reasons as you - but she had speech therapy which was very successful and I’m sure I’ve read on here about people being referred for speech therapy . I don’t know for sure but I imagine it’s more like a cross between physio and speech therapy.
Such a pity you can’t have an epidural for your ovary op. Hopefully they’ll come up with a solution soon.
There are lots of possible reasons for the leg cramps. You would need some testing first though.
1) Magnesium - as long as your kidneys are functional there is no point in testing magnesium. The kidneys excrete excess magnesium. If the kidneys are not functioning then magnesium can build up in the body and supplements should be avoided. You should just try a magnesium supplement (if kidneys are okay) and see if it helps. They are easily sourced on many websites that sell supplements.
2) Iron/ferritin (iron stores) : Low levels of iron and ferritin can cause leg cramps and restless legs. Iron/ferritin have to be tested before supplementing iron because the body can't get rid of excess iron. If you get your levels tested then you can post the results on here and ask for feedback. The best test is an iron panel.
4) Potassium : Needs to be tested before supplementing. If levels are already very high in range or over the range then supplementing would be a bad idea. Personally I use potassium bicarbonate (food grade) in OJ.
5) Sodium (i.e. salt) : Low salt/sodium levels can cause cramp and restless legs. It's easy enough to try this for cramp. Just add a tiny amount (less than quarter of a teaspoon) to water or orange juice and try drinking it.
Edit : I'm suggesting experimenting with these, but not all of them at the same time - just test the effectiveness of one at a time.
Personally I use magnesium citrate and potassium bicarbonate in OJ. I already know my iron and vitamin D are already fine. If the potassium and magnesium doesn't work and I get cramp - which almost never happens to me - I will try a tiny amount of salt in water.
Work out which brand levothyroxine suits you best and always get same brand
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots,
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test
Increasing number of members find it smoother/more tolerable to split levothyroxine as two smaller doses, half dose waking, half dose at bedtime.
I had a partial thyroidectomy to remove thyroid cancer and I’ve had problems with my voice since. I think my vocal cords were damaged during surgery but I’ve been told differently by the medics. However, I’ve had to have speech therapy for many years now (I was only offered it after complaining to my surgeon via PALS) and it has helped. I was told that I have a very narrow oesophagus and told that it’s very unusual but, my Mum was told that she had a very narrow oesophagus following emergency surgery to repair her Aorta. So, I guess, it must run in my family. Perhaps, asking your GP for a speech therapist referral might just help.
I had a total thyroidectomy last year and removal of 25 lymph nodes. I was prepared for vocal issues as I was well informed by my surgeon of the risks before hand. I had significant vocal issues and breathing issues as one of my vocal cords hadn’t closed. I was told by my surgeons registrar the breathing and breathlessness was nothing to do with the op and was due to lying in bed for a week in hospital as the surgeon had a 0% rate for vocal chord issues! I raised with my consultant and it required a follow up injection to close the vocal cord 8 weeks later. Guess I was lucky as my breathing is ok now. I do have scarring which I can sometimes feel when I swallow or cough.
I am not sure I really needed it but took up the offer of speech therapy after 5 months to strengthen my voice, the exercises were fab - it has taken a year to get my voice back it goes when I am ill. It was debilitating to start off with both professionally and particularly socially isolating as no-one can hear what you say.
Could you have via an epidural? They do lots of ops now via non general anaesthetic. Good luck.
I had mine removed back in 2015 and haven't had any problems since. Before my Trachea had moved and caused breathing problems. My Professor surgeon was chosen by me by age and experience. He sorted out my Trachea and I am fine.
I am so sorry that you are in trouble take care. There will be a solution it takes time.
Hi, I had a thyroidectomy and was unable to speak for 5 months after my operation (I had huge growths in my chest which impacted my breathing). After my operation my breathing was greatly improved. I had speech therapy which was really useful and I was given specific exercises which gradually brought my voice back and enabled me to speak properly - really worth investigating with your local speech therapy unit at ENT. As the moderators say, do investigate your vitamin levels and supplement where needed. They gave me great advice and I now have various sublingually to help (under tongue). Hope it all improves for you.
I’ve got my voice, it’s throaty I can live with that. Can’t sing anymore due to breathing problems. The damage was caused when I had my thyroid removed causing the narrow laryngeal airway and bilateral vocal cord weakness. I’ve asked to see ENT and am looking into supplements I may need . Thank you for your advice everyone has been amazing on here thank you I am so pleased to meet everyone
Hi, sorry to learn about breathing problems. I had a total thyroidectomy several years ago because of nodules and, afterwards, discovered I had breathing problems which I hadn’t had before - if I became upset, excited or laughed my throat seemed to seize totally and I had to calm myself down in order to breathe, very frightening. Apparently my laryngeal nerve had been ‘nicked’ during the op. I was sent to speech therapy to learn how to overcome this. It worked although I can no longer sing which I had enjoyed doing prior to this. Hope this helps.
I had a thyroidectomy in 2011 & have bilateral laryngeal nerve palsy with one vocal chord non functioning & the other moving only slightly resulting in a very narrow airway. My breathing is often noisy with stridor & like you it restricts everything I do. As others have said speech therapy was very helpful. I attend ENT voice clinic when I need to. A referral to ENT & speech therapy would be helpful I would have thought. Have you had your calcium levels checked recently? Strange cramp in my thighs, particularly at night is one of the first signs I get when my calcium levels are a bit low (parathyroid damage too).
Have just been told after 12 years that things went badly wrong in my surgery having been made to feel I was just a nuisance by many drs during that time!
Thank you for your reply. I am really sorry to hear this about your situation ( sounds very much like mine) my surgeons at the time didn’t really accept anything was wrong but when I awoke after my surgery I was having a panic attack due to not being able to breath. Very little was said at the time about what was wrong.
I am very grateful for your reply and I will be looking into getting everything checked x Will update date you x
Do you have your report in hand? My apologies if I missed that part. You need to acquire it if you don't have it. I had a total thyroidectomy due to two large and not well placed nodules as well. The rest of the modules were fine. I had breathing, swallowing and voice issues before surgery. Everything is better. But still have some wheezing which I assume was always silent reflux which my surgeon told me I had when she checked my vocal cords with those lovely cameras pre-surgery. I had no clue, as most do not hence 'silent'. I am sure I don't help it by continuing to eat spicy foods daily.
I am very lucky and the surgery went well but I had a lot of surprises in that written report, so do request it if you do not have it. And do not take no or excuses as an answer. Get it.
I am so very sorry to hear about everyone's complications. And relieved to hear that speech therapy has helped.
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