Since my last post my daughter is experiencing numbness on her chin, temple, forehead and her neck. I can’t remember what I said in my last post but 2 trips to A & E with nothing found & a panoramic dental X-ray revealed a dark shadow on her left jaw. Dentist agreed to contact GP to agree who would make the referral to maxfacial department at main hospital. Dentist made emergency referral which could take between 2 weeks and 2 months. Phone call to GP as numbness progressing, daughter told that as GP had not been contacted by Dentist it was nothing to do with her unless the numbness affected her breathing or swallowing. GP also stated that the numbness was nothing to do with ongoing pituitary/adrenal investigations. Phone call to Dentist to be told that the maxfacial department had said no need to contact GP. Can somebody please tell me who is responsible for co-ordinating my daughters care? One of the 8 endo’s that my daughter wrote to has suggested that following review of her symptoms and blood tests an ITT test is hat she needs as he feels that she may have post partum lymphocytic hypophysitis. She has all the symptoms which includes facial numbness. She has written a well researched letter to local endo who says there is nothing wrong and replied to the endo who feels she needs the ITT test to see if she can get an appointment. My daughter is the only one taking any responsibility for her health issues despite being acutely unwell grrrrrr. Her latest thyroid test results are attached.
Jaw & tongue numbness update : Since my last post... - Thyroid UK
Jaw & tongue numbness update
Her Thyroid results are Hypothyroid and need attention. What dose Levothyroxine is she on? But -
Not sure how to comment with everything else that's going on.
Keep chasing this up? or attend A&E at 7.30 am?
Phone 111 ask for advice?
Is there a concerns department at your hospital you can phone?
Call in to Outpatients Department and speak to the Sister / Outpatients Charge Nurse /Manager ?
Phone Max Facs /Oral Consultant's/ Department Secretary at 9am and ask when she will be seen? Can you bring her in to next Clinic? Can you speak with Consultant?
Just some things you may wish to consider ?
Keep on pestering the Medical people till you succed? Don't be put off.
Who is actually investigatiing her Pituitary & adrenals?
Can she track down the helpful Endo and get a telephone conversation with him or ask to be seen by him in clinic this week?
Is she still under Obs /gynae? Can they contact Endo and or Max Facs Consultant / registrar?
Has she had any other blood tests? CRP? ESR
Haven't a clue what all this is but she needs diagnosis and qualified response.
Just a point - Max fax and ENTs are usually hopeless if it’s autoimmune. Oral medicine consultants are often much better.
Wow Twitchytoes ,
That's a sweeping generalisation !
You had a bad experience then?
Same department.
Oral, Facial & Maxillary Consultant / Department.
Max Facs is just an abbreviation.
No it’s not really a sweeping generalisation. Do you have a numb face or burning lips and Sjögren’s and have you ever had a lip biopsy? If not promise I can tell you that I have learnt this from bitter experience of both!
Max fax and ENT are usually surgeons who mostly really don’t know anything about the immune system. They are often brilliant at cancers and facial reconstriction of course but regarding numbness and other more complex , possibly immune mediated neuropathies they usually know zilch because it’s not within their specialist area.
Oral medicine consultants are different to max fax and ENT. I’ve seen three and they work in dental hospitals but aren’t usually surgeons. All three were excellent. They are consultants rather than surgeons. I’ve learnt all this the hard way and through three different hospitals!
Oral,Facial, Maxillary Consultant Surgeons.
That said I’m in Scotland where we might be different/ better served with this kind of expertise?
Please see my earlier comment about my own experience of numb face - it’s somethimg I live with 24/7 now so I know quite a lot.
Her thyroid results show she is very under medicated
Dose of Levothyroxine needs increasing in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range
Retesting 6-8 weeks after each dose increase
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Has she had vitamin D, folate, ferritin and B12 tested recently. Can you add results and ranges if done
Push GP to test if not done
Likely low due to being hypo
We can get blocked saliva ducts too when hypo
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne: tukadmin@thyroiduk.org
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
verywell.com/should-i-take-...
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Prof Toft - article just published now saying T3 is likely essential for many
rcpe.ac.uk/sites/default/fi...
Email Thyroid UK for list of recommended thyroid specialists
please email Dionne: tukadmin@thyroiduk.org
Thank you for your comprehensive reply. Her thyroid results are ‘normal’ according to the GP. She has had all of these other tests done a while ago. She hasn’t actually seen an endo yet although he does have all of her information & blood test results. She is exhausted & getting worse. It is shocking thatvsn acutely unwell person has to do all the leg work because these so called professionals will not discuss her case with me. We have a list. Apparently Levothyroxine is not appropriate for people with adrenal issues. Some phone calls today I think.
Her adrenal issues are likely due to her low thyroid levels
Roughly where in UK are you? You need a proper adrenal and thyroid specialist
As far as I am aware Adrenals have to be sorted first before any Levothyroxine - however no one seems to be doing anything.
My adrenals were terrible but NHS only recognises Addison’s or Cushing’s
If cause is thyroid, adrenals may eventually recover
Her GP needs an eye test, she obviously hasn't seen the asterisks next to the results for TSH and reverse T3, which require attention!
t3cram
How is it going?
Did you consider A&E early this morning?
Any point in asking GP to phone a Neurologist for advice / urgent consultation?
Does she have any neck / C-spine issues?
How is she?
Thank you all for your replies. My daughter managed to get an emergency appointment with a GP today because the numbness spread down her arm to the tip of her index finger & earache & eye pain & top of her head tender. GP arranged for an assessment at hospital, CT scan clear, doc assessment clear and bloods clear. Told to chase up max fax referral and if symptoms continue to ask for a referral to neurology. She was so relieved that the CT scan was clear. She has email contact with the endo in London so she is going to ask for a referral. I can’t believe this is all happening.
Isn't anyone arranging MRI scans and Ultrasound scan?
Will she have to wait long to see Neurologist?
We contacted an RNIB medical helpline years ago. They were very helpful and encouraged us to go to A&E. But we had to go more than once before Eventually ended up in the right department and started the right treatment.
Don't know if it still the same but number is :
0303 123 9999
open 8am - 8pm
worth a try?
Well her GP needs glasses.
Her TSH is not normal it's well over top of range and her FT4 is just one point above bottom of range.
TT4 near bottom of range
She is clearly hypothyroid
Well when I had a dental problem my dentist simply referred me to the dental department of our local hospital. He didn’t contact my GP.
I can’t think of anything else your daughter could do about her numbness other than get in touch with her local MP, tell him / her what has been suggested take a copy of the symptoms and show him / her that it ties in with her symptoms, tell them how long she has been suffering and how worried you are about her and see if her MP can put pressure on someone somewhere (who?) to act.
She still needs her thyroid sorted out. Poor girl and poor you with all the worry this is causing you, it must be a nightmare.
I have same symptoms as your daughter plus many more affecting arms legs and balance. My hypothyroid is well managed so it’s not endocrine with me. It’s an autoimmune connective tissue disease called Sjögren’s and the facial numbness is small fibre neuropathy plus autonomic dysfunction in my case.
Her Hypothyroidism needs to be well controlled too though as TSH way too high so this needs addressing.
She may be barking up wrong tree with endo regarding facial numbness - although her Hypothyroid management is certainly for her Endo to act on asap.
Her GP should refer her to neurology for proper investigations ASAP and also check her autoantibodies for rheumatic diseases such Sjögren’s and Lupus. If her bloods suggest inflammation and autoimmunity then a referral to Rheumatology would be important too.
Diagnostically I had to get all this sorted myself too and it’s ongoing for me but I’m under Neurology, Rheumatology, oral medicine, vascular, Gastroenterology and soon to be dermatology. Endo discharged me back to the GP with instruction that TSH should be 0.1. They blame my Sjögren’s for all now but I only got diagnosed last year after a seven year battle!
Thank you all so much for your replies. My gut feeling is that there is a pituitary issue causing all of her symptoms in some way. Hopefully the referral to London and appointment won’t take too long. Endo’s appear to look at adrenal issues as either Addison’s or Cushings and don’t consider Secondary Adrenal Insufficiency which is a different ball game requiring different tests.
You may well be right but just in case this helps: hopkinssjogrens.org/disease...
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