Hi, I have had and still have cold and tingling legs for no apparent reason. It wasn't constant when it first started a few weeks ago but now it appears to be. I also have a random rash on my stomach and inside my thighs with is very itchy and when I scratch it makes my legs even go even colder and pins and needles like tingle.
I seem to get such random side effects since being diagnosed with Hashimoto. Can anyone else relate to this or is it just coincidence
Are you still only on 50mcg Levothyroxine?
healthunlocked.com/thyroidu...
TSH MUST be under 2 for anyone on Levothyroxine
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 most important is that 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.
nhs.uk/medicines/levothyrox...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
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).
Add results and ranges if you have them
Have you had thyroid antibodies tested yet?
Low B12 frequently causes pins and needles. Very common when hypothyroid
ncbi.nlm.nih.gov/pubmed/186...
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms, .
ncbi.nlm.nih.gov/pubmed/169...
Patients with AITD have a high prevalence of B12 deficiency and particularly of pernicious anemia. The evaluation of B12 deficiency can be simplified by measuring fasting serum gastrin and, if elevated, referring the patient for gastroscopy.
Low B vitamins are extremely common if improving low vitamin D with supplements
If vitamin D is low, B vitamins may be too. As explained by Dr Gominack
healthunlocked.com/thyroidu...
Hi SlowDragon, thanks for your response.
Yes I am still on 50 Levo. GP wanted to keep me on this dosage but I now have an appointment next week with GP and will be asking for it to be changed as I am getting a fair few side effects.
Exhaustion
Cold Legs and Tingling
Leg & Knee Pains
Itchiness
Muscle Weakness
Blurry vision
Starting to lose hair
Constant hot and cold
The only good thing that is happening is that I am losing a little weight and expected to put on!
The last tests I had done (privately) were as follows: (in May 2019)
Vitamin D=73.8 nmol/L (Sufficient)
Vitamin B12=64.8 pmol/L (Normal)
Ferratin=73.2 ug/L (Optimal)
Folate=29.1nmol/L (Normal)
FT3=4.05 pmol/L (Optimal)
TSH=4.04 miu/L (Normal)
TgAB=10 kU/L (Normal)
TPOAb=394 kIU/L (Out of Range)
Thyroxine T4=98.2 nmol/L (Normal)
Free Thyroxine FT4)=16.4 pmol/L (Optimal)
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
See box
Thyroxine replacement in primary hypothyroidism
pathology.leedsth.nhs.uk/pa...
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 at
tukadmin@thyroiduk.org
can you add ranges on these results
Especially FT3 and FT4
Presumably B12 is Active B12 ?
Your very high TPO antibodies confirms that you have autoimmune thyroid disease also called Hashimoto's
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
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
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
See different GP if this one won't give you 25mcg dose increase in Levothyroxine
NICE guidelines
cks.nice.org.uk/hypothyroid...
The initial recommended dose is:
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response.
The usual maintenance dose is 100–200 micrograms once daily.
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Rash and weightloss may suggest coeliac rather than gluten intolerance
The rashsounds to me like psoriasis which I've got
Yes symptoms come and go and seem random. Most of my joint brain, nausea, dry skin, straw hair falling out have gone. What I have developed is a sore throat and squeaky voice which gets worse as I get more tired. Funny illness this,.
Anyone have jelly legs or lead legs?
Tired legs
Burning legs
Swollen legs
