Hi everyone,I don't know which section this really belongs but here we go.
I have had underactive thyroid for approx 47 years, I had Lupus sle/ Sjogrens which they say has now gone due to going through menopause.
For a few years now I keep telling the doctor that I have lots of numb patches ALL over my body (neck, arms, thighs, couple of toes on each foot and part of the ball of both feet) I have one to locked solid it doesn't bend at the joint.
I get tingling feelings like little insects walking over bits of my body only lasts a few seconds in various places including face, at one point when it was on my face near my mouth I thought maybe I was getting a mouth ulcer but no!
At one point the doctor checked for Peripheral neuropathy negative.
Went to neurology he just said it wasn't a trapped nerve and signed me off his books saying that it is probably "Notalgia paresthetica" to which my GP says there's no cure for it you can have some Amitriptyline for the pain, well what's the point of that it's the numbness I want sorting.
I read up on Notalgia paresthetica (I haven't got itchy bloody shoulder blades it doesn't sound ANYTHING like my symptoms.
Why won't they listen or do anything?
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Tinathebus
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You belong here 😊, and assuming if you have Lupus & Sjogrens, your hypo has been caused by Hashimotos?
Long term Hashi can cause many unusual symptoms that doctors refuse to believe as simply don't understand thyroid autoimmunity. My useful strategies have been calming the immune response by means of a g/f diet, eating cleanly and using supports such as yoga, cycling, etc.
What are you medicating? Have you any recent labs to share? Have you had iron & nutrients tested recently? Deficiencies in Vit B12 are common in people with hypo and can cause all sorts of nerve problems. Low thyroid hormone levels can cause high histamine making us feel as if insects are walking on us or giving sharp suddenly pin prick sensations.
Lupus and Sjogrens don't just vanish after menopause but may be less stimulated by less oestrogenic variation, or WBC's have simply worn low as happens in many people after years of fighting our internal autoimmune war.
As someone who suffers with B12 issues due to extensive gut surgery - I suggest B12 testing asap along with Folate - Ferritin - VitD. I inject weekly ....
So many conditions have over lapping symptoms - B12 and thyroid being an example.
Sadly medical understanding of both thyroid and B12D are lacking.
Please add most recent thyroid and vitamin results
How much levothyroxine are you taking
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you taking
As you presumably have Hashimoto’s are you on gluten free and/or dairy free diet
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
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
I have had one spot of numbness on my heel for many many years. I tried chiropractic treatment which helped with many things but not this area of numbness. The point is at the Chakra allegedly related to the sciatic nerve. I do have hip problems which are sciatic nerve related and very painful. It’s different from Raynauds numbness etc. It’s just sat there in the middle of the sole of my heel for donkeys years. Since starting T3 it has just disappeared.
Yup am 49 with Hashimoto’s and have numb toes in one side, apparently related to a moretons neuroma, the shoe insole the NHS podiatrist gave me helps a bit.
I get the insect crawling thing, and the sharp stingy thing and used to wake up with pins and needles in my arms also feeling numb, I had all the nerve tests too, nothing showed up.
It went away with improved vitamin levels. I think the B Complex helped. A histamine a day really helped with constant irritation. I’ve stopped antihistamines due to imminent blood test and it’s come back in just a few days.
Tingling numb feelings and balance are also on the Coeliac UK list of symptoms. Another autoimmune disorder for the catalogue.
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