Symptom Help : Morning everyone, I don’t want... - Thyroid UK

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Symptom Help

Zoey92 profile image
19 Replies

Morning everyone,

I don’t want to sound rude, but before everyone jumps on and asks what my tests results have been lately I am waiting for a copy of them as they do not show on my hospital app.

i am just posting to see if anyone has ever experienced anything similar as I am becoming extremely annoyed by the lack of answers I am receiving. Sorry for the long post in advance.

For a bit of background, I’m a type 1 diabetic, have hypertension and now overactive thyroid 🙄 yes I am very broken lol. Within the past few months too we have been trying to relocate 150 miles away so that’s been stressful too.

I was diagnosed with an overactive thyroid in August 2022, was prescribe carbimazole and propranolol. Between then and March I was weaned off the propranolol and slowly reduced the carbimazole following good test results. In March 2023 I began to get some of my symptoms back especially heart palpitations and really bad aniexty. To the point I called 999 as the palpitations wouldn’t stop one day and I was home alone with my daughter and thought I was having a heart attack which led me to have a panic attack (silly I know) on advice from the ambulance crew my GP re-done my bloods for my thyroid. They asked me to increase my carbimazole again and have given me back propranolol. Since doing so I have felt a lot better, just the odd palpitation and occasionally feeling tired but generally I have felt good except for these news symptoms.

Since the end of April I have had a really bad right shoulder and terrible achy back to the point I cannot even get my arm round my back to undo my bra. I have tried all the usual deep heat, deep freeze, even kinesiology tape. I finally spoke to the doctors last week who suggested I might have a trapped nerve. She’s referred me to physio but this can take up to 12 weeks to get an appointment (I have self referred myself a few weeks prior to this thank god) she also prescribe naxproxen and omeprazole to see if that helped, which I think it did help over the weekend. I mentioned that I know you can have muscle / joint pain with an overactive thyroid and could this be the issue but it was kind of brushed off and the GP just said I am young and I shouldn’t be suffering like this.

Skip to Monday and I’m at work, I work in an office. I’m on my lunch break going back to my desk and my left leg and forearm feel all odd. Like weak / tingly / numb. I start to panic and get myself into a state again, so work advised me to call 111. 111 put through an urgent call to get my GP to call me within an hour, my GP was closed for training so called 111 back and they ended up just sending an ambulance. I was checked over and they took me in because of BP was a little high, asked if I’m stressed and told them I am extremely stressed as trying to move house. Got to the hospital and everyone was worried that I had a mini stroke 🤦🏻‍♀️ had an MRI - all clear. Had a CT with contrast - all clear. Blood tests - all clear. ECG - all clear. They’ve prescribe me blood thinners just incase it was something sinister and have arranged for an echo and a heart monitor to check my heart is okay. They said if these all come back okay I can come off the blood thinners. But I asked about it being my thyroid all I got was we don’t know, said about my shoulder could it all be related, their answer we don’t know. Your diabetic and have complex medical problems so cannot rule out something sinister but all your tests were clear. Could be stress related so take it easy. Asked me to follow up with my GP and when I spoke to them I got exactly the same answers! I got off the phone Tuesday and just cried my eyes out. I don’t know where to go or who to see or to ask. Seems as everyone just wants to blame everything on having other medical problems. I don’t feel as anything sinister has happened and honestly feel like it has something to do with my thyroid and the nerve and muscle pain I’ve been having on the opposite side.

We are finally relocating on the 1st July and holding out hope that my new consultants and GP may be a little more helpful!

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Zoey92 profile image
Zoey92
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19 Replies
Lalatoot profile image
Lalatoot

Zoey I can relate to all you have written. That is the big conundrum of all thyroid problems - when are the symptoms to do with the body being out of whack bec of thyroid and when is it something different. And being over or under active for that matter brings anxiety as one of the symptoms. What I came to realise is that doctors are not particularly aware of all the knock on effects that an imbalance of thyroid hormones can cause. And the residual damage that that can leave in muscles and joints for example.

When my thyroid hormone levels crept up after coming of carbimazole I used to get period like pain and dragging down. Happened all the time I went hyper over 5 years but the endo dismissed it as nothing to do with thyroid but at aged 60+ , I knew it was. And now I am no longer hyper, I have never had it again.

Be kind to yourself. It is a stressful time for you and being hyper just sucks

Realfoodieclub profile image
Realfoodieclub

I am sorry you are going through so much. I can't offer too much advise on what to do or the cause but it does sound like they are ticking the boxes to rule things out.

Before I was diagnosed with hyperthyroid (I had a toxic adenoma) I went through many medical problems. One of which was a torn rotator cuff ( shoulder injury) at the time my life was very stressful and my physio said that stress was a big contributor. I hold stress in my shoulders and neck. Before I got my thyroid sorted I was always having neck and shoulder problems, I have no medical backing for this comment but I always believed with me the thyroid got niggly and that set off all the muscles around it.

I had a similar story with the A&E in and out before my radiation treatment. I am extremely sensitive to any thyroid meds so they just couldn't get the dose right.

I hope you find some resolution.

Rfc x

Justine_Case profile image
Justine_Case

Your shoulder problem sounds like a frozen shoulder. I had that twice several years ago - first in my left, then in my right shoulder a couple of years later.

I too was unable to reach around to unclasp my bra, also couldn't reach forward far. Basically it was 'frozen'.

It hurt like mad.

Both times took around a year to resolve. I managed on ibuprofen at the time.

I think it is quite common with thyroid disease, so may be worth considering.

Zoey92 profile image
Zoey92 in reply toJustine_Case

I’m so sorry you had to deal with that too! It’s literally soooo painful and I’m convinced what happened on Monday with my opposit shoulder js the beginning of the same issues I’m having with my right shoulder. I just wish someone would listen to me 🤦🏻‍♀️ x

SlowDragon profile image
SlowDragonAdministrator

Thyroid and frozen shoulder are strongly linked

jerseyrehab.com/is-thyroid-....

Essential to test vitamin D, folate, ferritin and B12 too

Have you had TPO and TG antibodies tested for Hashimoto’s

Presumably you test positive for Graves’ disease antibodies….

TSI or Trab antibodies

As you are type one diabetic are you on strictly gluten free diet

arTistapple profile image
arTistapple

As far as I am aware I have never been hyperthyroid. But due to having Hashimotos I have experienced hyper symptoms as my thyroid wound down. I have experienced frozen shoulders since diagnosis. Doctors are about as much use as a chocolate fireguard. I must check their job description some day. Anyway the other symptom you seem to describe, I am also familiar with. It’s disconcerting. It’s like a blip of some sort and can last from a few moments to quite a bit longer. I think of it either as my T3 abruptly running out or some blockage to the necessary muscles and organs, temporarily. Sometimes it has been truly debilitating and sometimes momentary and I am the only one who notices. A bit like these people pretending to be statues in the street.

Zoey92 profile image
Zoey92 in reply toarTistapple

thank you for your reply! I’m glad that I’m not the only one who’s had symptoms like this (well not glad for anyone suffering but glad I am not alone and feel like I’m completly loosing my mind!) I just wish someone would listen. I’m convinced everything that’s happening at the moment is thyroid related. How did you manage with the frozen shoulders / get some sort of relief or help?

arTistapple profile image
arTistapple

My first shoulder was eventually treated very well by my sports massage guy. The eventually bit is me making up my mind. He did it within maybe 3 to 4 sessions. The second I have had to give up on temporarily as it was just too painful and the treatment extra exhausting. It’s better than it was but I have to get help putting on my underwear. As I am feeling a bit better with my other symptoms, I am enjoying the rest frankly but clearly I need to get back to sorting it out.

Meant to say too Nothing silly about the heart attack worry. Why would you not be worried if that’s what you thought was happening? And the other! Losing your mind? Well we have all been there, often more than once.

Zoey92 profile image
Zoey92 in reply toarTistapple

I’m so glad they were able to sort it out for you with a sports massage! That makes me hopeful that the physio may be able to help.

And thank you it’s really reassuring knowing that other people suffer in the same way. I just feel like doctors etc just think I’m going crazy and that I’m stupid! Especially with the situation on Monday. The he A&E doctor was not helpful what so ever and wanted to blame it all on my diabeties and kept saying we can’t be sure you didn’t have a stroke bevahse your diabetic but your tests were all clear so there’s nothing to worry about. But I’ll give you blood thinners just incase it was sinister 🤦🏻‍♀️ I know they’re doing their job but doesn’t help when my health aniexty is on another level since having thyroid issues. It’s just frustrating!

arTistapple profile image
arTistapple in reply toZoey92

Funnily enough I am not sure they are doing their job. Many of them are doing their job as they know it. It’s a job ruled by protocols not expertise. Neither GPs nor A&E staff know much about hypothyroidism in my experience. They go through their routine (protecting themselves) but not much good to us unless of course we have a heart attack! I have had one, so was happy to be there on that occasion. They should take on board some feedback from patients but no, hardly likely. Luckily for most of them the general public rarely become familiar enough with medical matters to truly be able to comment. Usually we are just too relieved to hand ourselves over when necessary.

Batty1 profile image
Batty1

It definitely sounds like a punched nerve in your shoulder I have been dealing with this for over a year and my doctor has been unhelpful and physical therapy didn’t help much.

I decided to look up Bob and Brad physical therapist on YouTube and did their exercises for shoulder pains and low and behold it helped me (not gone) but alleviated the horrible pain…. Lidocaine patches help too….. what ever you do don’t stop moving your arm/shoulder or you could get frozen shoulder which I hear is 100x’s worse.

arTistapple profile image
arTistapple in reply toBatty1

I am more enamoured of the view that frozen shoulders in the hypothyroid are caused by mucin infiltrating the muscle fibres, literally sticking them together like glue. Naturally if you have this happening you must be extra careful not to cause further damage (tearing rotator cuffs etc). This is therefore the job of someone who knows about deep tissue massage and not taking it too fast. It’s definitely worked for me. I just need a rest because it can really take it out of you. It’s a tremendous amount of work applied by the masseur and our contribution is similar to having lifted heavy weights for the half hour it takes for each session. Ice packs after each session are a must to cut down on inflammation. It’s exhausting but the relief is amazing.

Batty1 profile image
Batty1 in reply toarTistapple

I don’t know anything about hypothyroidism and mucin in the shoulder and I bet if you go to any doctor with issues of shoulder pain without injury they won’t know about mucin and hypothyroidism either.

arTistapple profile image
arTistapple in reply toBatty1

Spot on.

Zoey92 profile image
Zoey92 in reply toBatty1

Thank you! I’ll take a look at this on YouTube and see if anything helps 😊 I think it’s more like a pinched nerve and that’s what the doctor thinks too but can’t be 100% sure as all it was was a phone call with the doctor 🙈

Batty1 profile image
Batty1 in reply toZoey92

Even in person with X-rays they won’t be 100% sure… good luck

arTistapple profile image
arTistapple in reply toZoey92

I will try and find the reference. I read such a lot and even if I take notes I can never give myself enough info to get back to them. That’s going to have to be a priority for me at some point!

A pinched nerve will not show up on an X-ray. Torn tissue might though, not always.

arTistapple profile image
arTistapple

Zoey92 this is the reference. I think I have two of the ‘causes’ going on, both due to hypothyroidism.

Sorry I do not know how to put it up in blue to give you a direct link. Very interesting reading for someone with this issue!

ncbi.nlm.nih.gov

I have tried it out and it is correct. It’s titled hypothyroid myopathy.

Zoey92 profile image
Zoey92 in reply toarTistapple

thank you! I’ll have a look right now 😊

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