Hi all. Feeling bit lost at moment.

[Janine159]

Hi all as you know my last visit gp.about my rejected spine referral after 5 months wait didn't give me confidence especially when he argued that all over body aches isn't a thyroid symptom doesn't cause that.

I have been away few days in our caravan first trip . I felt rough first day going toilet urgently pain abdo. Head pain feeling not myself .unwell necks killing me aching at back has been like since Sept where gp had to increase dosage .saying It's too low .

I was ready to see a local Dr as felt so bad next day I felt clearer in head and brighter managed to enjoy few days .still coughing up mucus keeps me awake at night . The left leg goes totally numb when walk and knee spongy.and gives way pain thigh .makes me unsure to walk again also started having the facial electric pain again in my right side face to neck every ten secs awful that went on non stop first day but eased off bit Now I messaged Drs by e mail. Saying that with conflicting ideas I don't know where to turn and what one Dr says is the cause others dismiss. Am Trying get seen as I am Sure numbness tingling should be investigated is this another low thyroid thing do you think x

[Buddy195 Administrator]

I’m so sorry you are feeling lost Janine159. I just wanted to say ‘hang in there’ and that I hope your adverse symptoms settle soon.

Did your GP increase your Levo dose? What dose are you currently taking? When is your next thyroid blood test?

Are you taking a vit D supplement (as this was low in results shared in last post)?

Do you take a magnesium supplement? I find this really helpful for muscle aches, sleep and easing tension.

[Janine159 in reply to Buddy195]

Hi buddy thank you .After my app other week I really felt if Dr's were so unaware of thyroid symptoms how are we supposed to let them manage thyroid medication .I e mailed and basically said that Dr didn't.know a common thyroid symptom.. I managed to get a diff Dr to raise the thyroxine to 125 mcg.now I started them mar 4 I think and she said give it 12 weeks and retest..in between each retest I usually feel.pretty rough. Chills body aches pains numbness tingling.. thigh sudden sore pain if walk .very unreliable on my legs again January I did suddenly feel abit better OK walking striding a bit better but still needed a stick it's very tiring .leg gives way knee feels terrible. Back neck and the electricity pains face .I take d3 and b12 ... some results were abnormal but not mentioned by gp . .I saw them on.records ..diabetes was borderline cholesterol has gone up I think ..vit d was down... not tried magnesium but might be good thanks x I am not sure if thyroxine even suits me .have been on it before and had hyper symptoms if anything once they treated me pre menopause .I had no symptoms.and a tsh of 10.5 .. thank you

[Buddy195 Administrator in reply to Janine159]

GP should retest 6-8 weeks after any dose change. 12 weeks is too long to wait!

Please ask GP for a print out of all recent blood test results and share with us, so members can best advise on ‘next steps’

[Janine159 in reply to Buddy195]

Thank you yes every time reviewed I either don't get a phone call to tell me results and steps forward or ask how I feel on that dosage. I kicked up about it at end Feb when tested again and nicer lady Dr did agree to try increase. But then said 12 weeks . Expecting it to be suppressed but tsh was a bit higher at 1.8 as I didn't take any thyroxine the night before .it was 1.2 before that as I took it at night as always . I am thinking the same will prib just try book the test end month I dread it now as know its a battle .feeling bit better today yday was in very down mood .I think I should be on 175 with my weight .its def still not right going chilled and still legs going numb .think thar might be a separate issue I have App Monday with a diff Dr again I said I didn't want to go through it all again with one not seen but whoever free is what you get . Thanks for your help x

[Griselda1]

Hi Janine

Have you tried asking for a referral but not linking this to your thyroid? I've had awful problems with nerve pain and my GP sent me for an urgent MRI which has shown degenerative changes and compressed nerves so I am being referred to orthopaedics. I just wonder that if you make an appointment and fully concentrate on nerve pain, lack of balance etc whether your doctor will then make the referral for you?

It's really awful having such problems, at the very least you need a referral to the physio who might be better able to help you. I really hope so.

[Janine159]

7Hi thanks for replying . I have seen a physio nhs one 3 years ago when I could still walk unaided but knew there was a problem ..needed a trolley to shop .etc they did a programme of exercises for me .usual things heel raises .balancing one leg etc ..I saw podiatrist there too my foot problem not putting my foot down heel to toe he just said I had general inflammation in my ball foot . The physio was expecting improvement but really I wasn't any different . Then I had the gall bladder illeus operation and recovering so I cancelled going as knew what had to do ..Then the head pain ten weeks after op .them holding on walks furniture and couldn't walk across room legs just didn't go when I stood up ...scary . .I just thinking is it stenosis spine maybe as that was mentioned on scan mri I had ... October I had review with a Dr never seen by phone and he suggested seeing physio. As didn't believe underactive thyroid would cause walking problems .

The physio dud thorough checks and said he couldn't find any weakness in legs so doesn't know why can't walk . He thought spine was OK so my referral there was prob waste time he would speak to gp and see zbout sending to rheumatology or somewhere else .they didn't...just left me .

Yes I think I need to concentrate on why I can't.walk unaided and the numbness tingling leg amd.sciatica in other .facial pain etc and say I need to know why I can't walk ..they are quick to laugh at the thought thyroid could cause it but have no other ideas . So I shall have to try and address that ..it bugs me that people have blue badges etc and help and I struggle on ...no chance claiming if Have no proof . .one Dr just said oh you have arthritis dear ..well I am sure if it was that bad it kept you housebound you would be on list for new hip or knee . Mine just says mild arthritic changes no further action required

I guess they have to try guessing something . I doubt I will get long enough to tell the story so I must just concentrate on walking .thank you...I would have seen spine people but was rejected. .Dr discounted rheumatology and orthaepedics I don't know why x just adding that the suggestion was see pain clinic I wax reffered there by my old Dr's and waiting list was so long they rang apologised and Asked if needed the app still I said no . I wasn't in pain walking at the time .the Dr there said the only way you will find out is in a hosp bed v true x