Numbness in arm and legs

[Sylvia22]

This morning I woke with pins and needles and numb arm. Got up arm better but legs felt bit numb and pins and needles. Lasted couple of hours gradually getting better. Not had it this bad for several years but of course Doctors have reduced my Levothyroxine by 12.5 mcg per day and will not put it up. Would some B12 help.?

[shaws Administrator]

They have no right adjusting your hormones. I assume it was because of your TSH result?

Can you get a print-out of your most recent results from the surgery with the ranges and put them onto a new Post. Members will then make comments and give advice.

They adjust dose usually if TSH is very low but seem completely unaware that the 'thyroid stimulating hormone' is from the pituitary gland which tries to flag up the thyroid hormones to try to rectify the low output which would mean a rising TSH. However, for some unknown reason, they believe that if a hypothyroid patient has a very low or suppressed TSH that this is dangerous and we've suddently become hyperactive. It is probably more dangerous to reduce our dose so that our bodies struggle due to reduction in dose.

[Sylvia22 in reply to shaws]

Thanks. I was on 125 mcg a day but they reduced them to 112.5 per day. Although only small amount seems to make my symptoms worse. Have argued till I am blue in the face. Makes no difference. Think I will ask for a full bloods after New Year as it was before my reduction they did the last one.

[shaws Administrator in reply to Sylvia22]

Yes get a blood test and I hope you know to follow the advice of the forum i.e. the earliest appointment, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take it afterwards.

One of our Advisers (deceased) only took one blood test for the initial diagnosis and thereafter it was all about how the 'patient felt' and concentrating on relieving symptoms and slowly increasing NDT. He did so as he stated that the blood tests and levothyroxine were introduced through doctors getting paid by Big Pharma to use blood tests and levothyroxine initially. That's why they are No.1 worldwide now.

Before that we were diagnosed upon symptoms alone and prescribed NDT. No blood tests at all. Doctors were skilled and treated the symptoms.

Quite a number of our member have sourced their own hormones to add to GPs dose.

[Sylvia22 in reply to shaws]

Thank you.

[SlowDragon Administrator]

What were your results and ranges from last blood test?

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

How long since dose was reduced?

What dose are you currently taking?

Low vitamin levels are extremely common, especially with Hashimoto's

Low vitamins tend to lower TSH, and reduce conversion of FT4 to FT3

What vitamin supplements do you currently take ?

Essential to always test FT3

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you did the last test?

Are you on strictly gluten free diet?

If not get GP to do coeliac blood test and test all vitamins listed above in New Year

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

[Sylvia22 in reply to SlowDragon]

Hi. I am on a gluten free diet. I take

Vit D

Omega3 and 6

Co enzyme Q10

Zinc

Vit C

Small aspirin

Magnesium at night

I will ask for a full bloods test after New Year.

I am going to see a Rheumatologist at the end of January as I am convinced I have Fibromyalgia.

[SlowDragon Administrator in reply to Sylvia22]

As you are gluten intolerant you may, like many of us need the addition of small dose of T3

Yes getting full tests is next step. Full Thyroid and vitamins

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

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

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

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 after Jan 3rd at

[e-mail]

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be under 1.5 when on just Levothyroxine to be adequately treated

Essential to test vitamins and FT3

sps.nhs.uk/wp-content/uploa...

[Sylvia22 in reply to SlowDragon]

Thank you for all this interesting and helpful informative. About 12 years ago I had T3 added and I went seriously overmedicated. My GP wouldn’t listen to me and I had to go private to get help. I never want to feel like that again

[SlowDragon Administrator in reply to Sylvia22]

So are you on any T3 at all since this?

[Sylvia22 in reply to SlowDragon]

No. I was so messed up by being overdosed that I would be very wary of it anyway. It affected me badly physically and mentally. It took me ages to get on an even keel. Over time I got my Levothyroxine dose to a level where I was not too bad and now of course they have messed it up again

[SlowDragon Administrator in reply to Sylvia22]

Roughly where in the UK are you?

Dionne at Thyroid Uk has list of recommended thyroid specialists. Email after Jan 3rd

[Sylvia22 in reply to SlowDragon]

Thank you

[Sylvia22 in reply to Sylvia22]

I am in Norwich Norfolk

[fortunata]

I used to get dreadful pins and needles in my arms until I was optimally medicated.

[Sylvia22]

Yes at the beginning I had a lot of this and I think it must be due to lowering my dose