Hi I was advised by that same Dr to see a physio at surgery. About my walking disability . I had had severe pain in face and shooting nerve pain in neck the night before so didn't feel great . The physio listened to it all how started but now says there's nothing wrong with my spine and not that bad arthritis in my hip and knee . The hip hurts sharp pain if I try to walk a few steps .But ok again after . Knee feels numb and not good walking . My neck hurts and had the nerve pain shoot down my neck just from a light touch even a sheet touching it . It comes on in the afternoon worse. The physio can't explain why I can't walk properly. I said the gp I saw and put me on thyroxine assumed it might be caused by my thyroid and go away when correct levels. And other Dr had said same. . The physio was nice and concerned but said he will speak to the Dr and see what theycan do refer me to rheumatologist or someone as he's concerned that I have muscle fatigue trying to walk and stop start resting legs . And commented that I look tired do I sleep ok etc.I said I do apart from coughing up mucus and then when get up I can't walk across the room yes. .Hard to get up refreshed when know can't get on with life. Never changes . He asked about depression or stress. I said yes I am depressed as most would be when can't walk . Been severe over a year now but he's not putting it down to any spine issues . I said my thyroid levels are still down so maybe it is that and might all go away once increased but I feel cold and know I look washed out this isn't me at all. . Still on 100 mcg thyroxine but with weight I think be nearer 150 before know if any better. . The neck pain is now worrying trigeminal neuralgia I assume. Any idea why. Xxx.
Hi all. Seen physio now as Dr advised at thyr... - Thyroid UK
Hi all. Seen physio now as Dr advised at thyroid review.
If your TSH is over 5 then one would expect symptoms of some kind.
A few things to try: Ensure you are taking your Levo correctly. Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Be sure to test following the protocol:
Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Have you tested key vitamin levels yet? Ferritin, folate, B12 & D3? We need good vitamin levels for our thyroid hormone to work well.
Thank you. My vitamins were prob about middle of range. I know the ferritin was at the first third may be and vit.d could prob be higher. I started taking vit.d but forget sometimes . Feeling cold hands washed out and rough tb h waiting for the nerve face pain to start just concerned as think most of my things occur with multiple sclerosis I keep coming back to it whenever look my symptoms up.tinnitus the neck face pain . Walking problems no-one can explain . If thyroid related and cured it would be lovely. But think seeing Neuro would be a relief. Thanks helping. Xxx
Pleasee do post your actual results along with reference range for each test.
Most people need minimum 3,000iu vit D + K2, also a B complex. Ferritin & iron can often be low too.
Thanks yes I started taking it at bedtime as it's hard to take it in mornings with no food drink. . . How do you buy ferritin in tablet form from chemists. ? X
Its not recommended to supplement ferritin unless you've had an iron panel and know that you have room for a supplement.
Otherwise its recommended to increase iron rich foods in your diet. Chicken livers, pate, red meat etc
Link with ideas for dietary iron:
Do you have any results to share with us?
Please add most recent vitamin results
Essential to get organised on regular vitamin supplementing
Thank you. Will try to copy them down from records. X
I feel cold again which isn't good sign is it. Feels like I need increase. But have Been on. Thyroxine before and had to come off. So I potentially have been not treated for 13 years . I see others on here are also not happy on thyroxine . I am just glad I don't react to it instantly as I did before . Have various new things nerve related that have started in past few months I wonder if I will waste more years stuck indoors hardly walking across the room.and no life . Sadly I am unable see a light at the end and normal life coming back. Sad for my husband having to do so much and listening to me complaining about Drs and ailments. He just wants his wife back. .Drs don't seem to understand as think most you get is a bit tiredness. Everything else must be other things. It's hard to cope with. And no support other than here. I am grateful for. Xxx.
Will try to copy them down from records.
Can you add your actual results
Levo doesn’t “top up “ your own thyroid output….it replaces it
Still on 100 mcg thyroxine but with weight I think be nearer 150
Essential to be on high enough dose
Get FULL thyroid and vitamin testing 2-3 months after increasing to 100mcg
Which brand levothyroxine are you taking
I started taking it at bedtime as it's hard to take it in mornings with no food drink
Ideally retest 6-8 weeks after changing time of taking
As taking 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
Vitamin levels
My vitamins were prob about middle of range. I know the ferritin was at the first third may be and vit.d could prob be higher. I started taking vit.d but forget sometimes .
Vitamin D
Aiming for at least 80-100nmol
Test twice yearly when supplementing
Can test via NHS private testing service
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Folate and B12
And why aiming to keep B12 over 500 recommended
perniciousanemia.org/b12/le...
Great reply by @humanbean on B12 here
healthunlocked.com/thyroidu...
Low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Post discussing different B complex
healthunlocked.com/thyroidu...
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
healthunlocked.com/thyroidu...
helvella.blogspot.com/p/hel...
Ferritin
cks.nice.org.uk/topics/anae...
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 5-7 days before testing
Medichecks iron panel test
medichecks.com/products/iro...
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
I had had severe pain in face and shooting nerve pain in neck the night before so didn't feel great .
This might be temporomandibular joint dysfunction.
en.wikipedia.org/wiki/Tempo...
nhs.uk/conditions/temporoma...
Some people with this condition have found that it can be helped with optimal levels of vitamin B12, and folate. Another nutrient that gets mentioned in connection with this is vitamin D.
Optimal levels for B12 are discussed on these links :
perniciousanemia.org/b12/le...
perniciousanemia.org/b12/le...
There are four different forms of B12 that can be supplemented. Most people find methylcobalamin the most effective :
perniciousanemia.org/b12/fo...
Folate - I don't know any official statistics suggesting what optimal folate should be. Personally I aim to keep my folate level at 20 mcg/L. I supplement with methylfolate to raise and maintain my levels where I want them.
You could start with a good quality B Complex, and if your B12 and folate don't rise to where you want them you could add in extra B12 and folate supplements as required. It is always best to take B vitamins that are in their active form :
jigsawhealth.com/blogs/news...
And please remember that if you take any supplements with biotin in they should be stopped for a few days before any testing is carried out, the higher the dose the longer they should be stopped for, up to a maximum of about a week.
When it comes to vitamin D, if you have a recent test result for it you could work out the dosage you need to supplement with this link if your level is below optimal :
grassrootshealth.net/projec...
For vitamin D to do its job fully, it is essential to also take vitamin K2 and magnesium.
nexusnewsfeed.com/article/h...
sciencedaily.com/releases/2...
drjockers.com/best-magnesiu...
naturalnews.com/046401_magn...
Thank you will read all the advice. Lot to know. Thanks. X.
Sorry it is not in English!
I don't think I would regard trigeminal neuralgia as "neck pain" - rather face and jaw.
But, at the same time, it is always difficult to come up with a good description. The attached image shows the three branches of the trigeminal nerve - hence the most likely areas which will be affected by trigeminal neuralgia.
Is that where you are feeling pain?
Some people find B12 helps - regardless of their current B12 levels.
Hi all new to this community thyroid antibodies
Dr Skinner has died and I am desperate now for thyroid help
Ache in neck still😣
I've seen Dr P! But now a little apprehensive.......
Anti depressants, Low Vit D, Calcium levels or Fibromyalgia.......take your pick
