Hi all still feeling v unwell .

[Janine159]

Hi after speaking to the Dr last week and finally getting a referral to endocrine specialist I should have had a year ago . That will prob be ages before see anyone . In meantime I am referred for mri .o my neck pain .having read a few articles and talking to people on here they have also had neck pain .presumably when dosage is low . I am still saying my dosage is low but now wonder if I am wasting their tine and expense checking my neck out . Seems everything checks out OK so far .I feel like I wasn't this bad before I started on thyroxine .and I did suffer when on it before tho walking wasn't affected that time.

I was only given a mri referral last week and they rang me on Thurs to say they had a cancellation was it any goof to me ? So course I said yes and it's on Tues next week .

Now I am thinking why would they contact me of all people so quickly surely there were others waiting patiently who also needed an app urgently . Just felt concerned then that the Dr may have marked it urgent .and had something in mind . They also said its on your abdomen isn't It ? And I said no it's on my neck as far as aware they then said spine .

I know feeling ill isn't helping but am coughing up worse almost being sick not sure its not to fo with gastric problems as all started after my gallstone illeus operation march 2023 .. just seemed odd that felt so well til 10 weeks after . I had forgotten what it was like to feel so well and was trying my best not to rock the boat and stay that way then the nurse insisted I have anti bios 2 weeks in case of infection .then the walking head pains started and depression

I guess I won't know if the thyroid med will ever get me to point of being well Dr's seem to be happy to keep me at this 'normal 'range .

Seems good health doesn't come into it . Every day I just can't do what I would like .there's possibility of arthritis is affecting walking but also know thyroid can affect it too .there's too much not knowing really and guesswork . I hoped this year would be the year I got my life back but be waiting list fir endo and just wasted 5 months referred to spine people and rejected that after waiting so long .. am getting very tired of it all x

[elaar]

Hi,

When you say neck pain, do you mean front thyroid neck type pain, or back of neck pain? The reason I ask is for two reasons, firstly you said they mentioned spine to you on the phone, which indicates to me back neck pain and they think they're looking at your cervical spin (looks for spinal degeneration, useful for degenerated/B12 diseases).

Secondly, if it's actually front neck pain, I would have thought they would have done an ultrasound, as that seems to be the preferred method, and a lot quicker/cheaper to do.

Have you got any recent Thyroid blood results we can take a look at? Weak legs, headaches can certainly be caused by thyroid levels, also myself (and I'm sure a lot of others here) have periods of front neck pain every now and then, when part of the Thyroid becomes particularly inflammed from attack.

[Janinel159b in reply to elaar]

Hi yes I mean back neck pain. It started when a gp did my thyroid review on phone I have never met her but she just said it looked like stabilising present even in the reference range. This was last August I hadn't long been on thyroxine and only 50 mcg I told her I was hoping for increase she just asked if I was tired I said no never have been then she decided to keep it as it was . I wasn't happy . But week or So later the neck pain started cramping down left side neck that went on about 4-5 weeks then I had pain back neck and severe toothache a tooth near my sinus nerve I had been saying was sensitive. Eventually this year the dentist took it out as it broke. Then bupa had to take root out saying it was showing start infection at root . So I thought if it was the tooth least I had got rid of that. But the back neck still aches my feeling was that being under medicated was causing it. I did see a diff dr in September he said straight away your thyroxine needs increasing. He didnt want to do blood check as knew it was too low .so did I .just seems every time they decide to keep me under medicated some new suffering comes along .. It's so unnecessary but you Cant argue they think being underactive just makes you a bit tired as one senior Dr told me at October review I just wouldn't trust any to deal with my thyroid now as they have no idea what It's like xx

[posthinking01]

So sorry you are feeling so awful - what antibiotic were you given after your op ?

[Janinel159b in reply to posthinking01]

Hi I cant remember one of the commoner ones I think as I reacted to amoxicillin co Amoxiclav year before so they are careful now. But I hate taking them. X

[posthinking01 in reply to Janinel159b]

Hi reason I was asking is that Ciprofloxacin is a nasty (but effective) antibiotic which affects thyroid hormone T3 - I refused it when at death's door with Sepsis which caused a bit of a panic.

[CreakingGate47]

Hello Janine

For a few months, I’ve had almost constant neck, jaw and face pain. After a couple of MRIs which were clear, I”ve now come to terms with the fact that this is anxiety.

I’m dealing with difficult life issues at the moment but anxiety is also related to medical issues such as low thyroid levels - which in turn can be related to low nutrients, iron etc. it’s a frustrating vicious coecle which in itself causes anxiety.

As for receiving invitations for short cancellations for MRI, this isn’t unusual. The NHS has finally got its act together on waiting lists for imaging and this is done at weekends and late into evenings. Waiting lists are much shorter than they were and people cancel for all sorts of reasons. These appointments need to be filled.

[Janinel159b in reply to CreakingGate47]

Hi. Hope you are ok. Tho sounds a lot going on sorry to hear that. I was just surprised at Mri.coming thru within days. I have waited months before for one. Yes its good they have arranged it I think had I not been left August on same dosage I might have been a lot better I knew it needed increasing but Dr thought differently never seen me before and by phone .I asked to increase it but she played safe . After that I had everything going tummy bowels chills mucus still going on feeling unwell. . I just wish they would listen as we should know. Just keep quoting readings. Tsh only at that. Thanks replying x

[elaar in reply to Janinel159b]

I agree, nothing to worry about with them fitting you in at short notice, it just happens sometimes with the NHS. If anything it's always nice to have them over and done with as soon as possible to put your mind at rest.

They'll be able to see if there's things like a bulging disc pushing against your nerves, or indications of things affecting your nerve system, but the vast majority of them come back as negative.

Top back/neck pain can be caused by so many things, as a lot of referred pain can end up there due to the main vagus nerve being located there, and it's a very busy section of the body.

[Janine159 in reply to elaar]

Thank you I am getting increasing worried about the neck pain as it started electric like shooting pains again in night . Just out blue all the time it feels achey . But hard know what to do with self to stop it . With walking difficulties too hip and knee . It's quite worrying . Not feeling great today I read that the neck pain can be from fluid retention and pressing on nerves .but seems you can find a thyroid answer to everything .being under medicated as fedlong chilled still but Dr's won't care about that as okder they question giving you it at all as might affect your heart noone checks your heart or BP so how would they know I am really feeling I have had enough of this attempting get my life back Dr's I cam understand don't want over medicate bit then keeping people ill seems the other option .they are happy with or dismiss it as something else. Readings normal after all . If taking it as they say makes you feel this bad then there's not much point suffering needlessly it could carry on years and I had 7 years of it before sorry I am so down about it as know helps lots people xx