My legs are weak heavy numb dont feel like they’re my own walking what I can describe as iron man!! I’m also getting numbness in my arms from my wrist to my elbow thankfully this time I’m able to use my hands. I’ve also had a burning sensation moving around my legs. I feel like a tap has been turned off and everything has slowed down!!
My back and neck are also aching and I’ve had a few violent head aches.
Went to my doctor had blood tests my tab is 1.77. Ended up going to A+e as thought it could be something else. Neurologist saw me when my legs weren’t as bad refused for me to have mri or lumbar puncture discharged me with an outpatients appointment. This isn’t the first time this has happened again in May 17 when my B12 was low and I pleaded for them to start me on B12 injections I know have these every 12 weeks when I started taking these all my symptoms disappeared. Then again in June 15 same symptoms had problems with my face and speech diagnosed me with hypothyroidism started on Levothyroxine.
Back home things aren’t any different struggling to walk doing the simplest of things is just making everything worse. Frustrated feel debilitated I’m a nurse and can’t go to work I’m struggling to get down the stairs and wouldn’t have the power in my legs to drive my car... anyone else had the same I have a list of my blood tests which looking at them seem normal.
serum cholesterol/hal ratio 2.77
non hdl chol 2.3
serum glucose level 4
esr 2
fbc
haemoglobin estimation 136
total white cell count 7.9
platelet count 266
haematocrit 0.385
red blood cell 4.47
mcv 86.1
mch 30.4
mchc 353
neutrophil count 5.5
lymphocyte count 1.6
monocyte 0.6
eosinophil 0.2
basophil count 0
Thanks xx
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clairelizzie
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You might want to go over to the Pernicious Anaemia group, you’re describing classic B12 deficiency neuro symptoms which require much more frequent injections than you are receiving. The guidelines (BNF, NICE, BSH) all state alternate day injections until no further improvement. Cofactors such as folate in particular are also vital.
Obviously stay here for thyroid advice! Maybe post your latest thyroid results as normal is not the same as optimal.
B12 deficiency is common with thyroid issues. You probably need a loading dose of B12 followed by regular injections. I treat myself for B12 deficiency and can advise re self treatment. Like thyroid care it can be hard to get proper treatment on NHS. You will probably get better once treated but needs to be done asap. Dont take doctors opinions too seriously, they seem to develop learning difficaultys in med school.
Looking at previous posts presumably you are on Levothyroxine
How much Levothyroxine are you currently taking
Just testing TSH is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
What supplements do you currently take
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Medichecks currently have an offer on until end of May - 20% off
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)
I’m taking 50mg of Levothyroxine daily. I don’t take Pregabalin anymore and haven’t for years. I’ve posted my recent blood test and will try and post further results.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Your serum calcium is only just in range -- people report symptoms with in-range levels.
My hip flexors are occasionally weak and painful when climbing stairs, or there can be little drive when walking on the level. I had CRP and CK tested when there was pain, but nothing found. This week I had an appointment and had to walk further than usual (for buses and down endless hospital corridors) and my hips are still feeling wrong -- hard to lift my foot to put on trousers.
Been to doctors said it’s not my thyroid won’t do anymore blood tests won’t increase my Levothyroxine as worried it could swing me to hyperthyroidism. signed me off for 2 weeks and advised it’s neurological. Back to square one chasing neurological out patient appointment which is currently the end of the month. Symptoms are still as bad heavy numb limbs tired in fact aching all over. Still can’t walk properly and to do anything is a massive struggle and tires me out. Been off work for a week tomorrow and having heat in my leg for over 10 days now. Feeling frustrated.
Frequently on Levothyroxine TSH needs to be under one
Most important results are FT3 and FT4 plus both TPO and TG thyroid antibodies
You will need FULL Thyroid and vitamin D and ferritin testing privately
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Obviously your B12 was low and now on injections
Folate is low
When getting B12 injections its recommended to Supplement a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting.This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Medichecks currently have an offer on until end of May - 20% off
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that
most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)
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
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I am really needing some help
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I have some answers finally and the plot thickens
Is a TSH of 2.86 too high? I need some help please!
