Tingling

[Pinkbarbie20]

Hi there, I was diagnosed hashimotos in December 2020, and put on levothyroxine, I keep getting pins and needles in my hands when I wake up that wakes me up through the night, even when I’m not lying on them, sometimes it’s just one hand but other times it’s both. My dr said could be carpel tunnel but I had a nerve conduction and it came back good, I really worry I have ms or something else going on. I have had a brain mri that was clean, my dr only tested my tsh which is now 1.48 down from over 15 and my antibodies are 1300>, also my periods are non existent I have pcos and am on metformin for that to , just after some advice thank you

[Buddy195 Administrator]

I’ve suffered with this in the past and have posted with similar symptoms. Taking a good B Complex really helped: I use Thorne Basic B. I saw a specialist who diagnosed carpel tunnel BUT the symptoms disappeared when my key vitamins were optimal and so surgery was not needed. I use Medichecks to check my vitamins and thyroid and post results on this forum for advice. Best wishes to you.

[Pinkbarbie20 in reply to Buddy195]

Thank you very much for your reply, I know my Vit D is very good but I’m not sure about the rest thanks

[shaws Administrator]

Welcome to our forum and I am sorry you have hashimotos. This is the commonest form of hypothyroidism due to you having antibodies that attack the thyroid gland. To help reduce the antibodies, going gluten-free can help

This is a list of clinical symptoms of hypothyroidism:

thyroiduk.org/signs-symptom...

Thankfully we don't get all of them.

Try not to worry as you've just been diagnosed and should have small increases of levothyroxine every six weeks and you should find your symptoms resolve.

This is the method to use when having a blood test:-

Always make the appointment weeks ahead, so that you get the earliest possible appointment. (TSH is highest early a.m. and reduces during the day) and may prevent doctor reducing your dose of levo..

It is a fasting test (you can drink water) and allow a gap of 24 hours between your last dose of thyroid hormones and the test and take afterwards. This helps keep the TSH (thyroid stimulating hormone) at its highest as that seems to be all the doctors take notice of and may prevent doctor reducing your dose. If TSH is very low some doctors reduce our dose as they think we've become hyPERthyroid but they should not.

Also there are two tests ie Free T4 and Free T3 that are rarely tested but they are more informative rather than just T4 and T3 alone.

It is a big learning curve for us who've problematic thyroid glands and the majority of doctors today only look at our TSH result and adjusts up/down according to the TSH so that's why early a.m. blood draw is beneficial.

Ask GP to also test B12, Vit D, iron, ferritin and folate. We can be deficient in these and if low can also cause symptoms.

thyroiduk.org/?s=hyperthyro...

Always get a print-out of your results for your own records and you can post if you have a query. Always make sure you put the ranges as labs differ and so do ranges and it enables members to respond.

[SlowDragon Administrator]

Welcome to the forum

Extremely important to regularly test vitamin D, folate, B12 and ferritin

With autoimmune thyroid disease also called Hashimoto’s low vitamin levels are extremely common

Metaformin also lowers B12

verywellhealth.com/metformi...

Ask GP to test vitamins at next test

How much levothyroxine are you currently taking

Bloods should be retested 6-8 weeks after each dose increase

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

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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 thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

[Pinkbarbie20 in reply to SlowDragon]

Hi there I think I posted the wrong dx date soI was diagnosed in December 2019, I was put on 150 levothyroxine and then I was retested every 3 months I am now stable on 100, I had my vitamin d done, I also asked to have all thyroid tested but they said that tsh is the most important one,

[SlowDragon Administrator in reply to Pinkbarbie20]

Just testing TSH is completely inadequate

You need full thyroid tested

and vitamins tested at least annually

Thousands of U.K. members forced to test privately to make progress

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

What vitamin supplements are you currently taking

[SlowDragon Administrator in reply to Pinkbarbie20]

If you were started on 150mcg levothyroxine, reducing dose to 100mcg is likely far too large a drop

Reducing levothyroxine dose tends to significantly reduce vitamin levels......then TSH drops

Low vitamins leads to poor conversion of Ft4 to Ft3

Results in high Ft4 and Low Ft3

Low Ft3 tends to lower vitamin levels

Becomes a vicious circle

Essential to get FULL Thyroid and vitamin testing

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,

[Pinkbarbie20 in reply to SlowDragon]

I got dropped to 125 and then 100 and now my levels are sposed to be good now so they said stay on the 100, when I was diagnosed my tsh was 15 x

[SlowDragon Administrator in reply to Pinkbarbie20]

Please add results and ranges when on

150mcg

125mcg

100mcg

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Is this how you do you tests

Do you always get same brand of levothyroxine

Absolutely essential to test TSH, Ft4 and Ft3 together, plus vitamin D, folate, ferritin and B12

Just testing TSH is completely inadequate

[SlowDragon Administrator in reply to Pinkbarbie20]

Sounds like you were started on 150mcg by GP following guidelines on dose levothyroxine by weight....

Have you lost weight since starting on levothyroxine?

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

[shaws Administrator in reply to Pinkbarbie20]

I am very wary of GPs giving advice as they seem to be very poorly trained in treating those with anything to do with a dysfunctional thyroid gland. They only seem to take notice of the TSH, which is actually from the pituitary gland (thyroid stimulating hormone).

Before blood tests and levothyroxine were introduced, we were diagnosed upon symptoms alone and given NDT (natural dessicated thyroid hormones) introduced in 1892. From then on we recovered our health and didn't die.

Big Pharma saw that profits could be made from developing a replacement and provided levothyroxine (which is T4 alone) whereas NDTs contain T4, T3, T2, T1 and calcitonin.

Unfortunately, in the UK, the 'professionals' withdrew NDT and T3, leaving lots of hypo patients very anxius and unwell again.

Despite going back and forwards to the surgery, not one doctor could diagnose me, neither could those I paid - given all sorts of 'diagnoses' except hypothyroidism.

I even underwent anaesthetic to 'remove a web' in throat, when I had nothing at all except an undiagnosed dysfunctional thyroid gland..

When I myself followed a 'first aider's advice' my TSH was 100.

Even worse - my experience has proven to me that they know very little about clinical symptoms as that was how we were diagnosed before blood tests were introduced.

By joining Thyroiduk (who are diligently trying to change the attitudes of the medical professionals) we can hope that finally we can get some sense from the those who are supposed to be qualified. It seems to me they only take notice of the TSH alone and know no clinical symptoms or how to resolve them.

[shaws Administrator]

Take levothyroxine with one glass of water on a fasting stomach and wait an hour before eating.

[megarub]

Pinkbarbie20 - I had tingling in my hands and lower arms for years prior to eventual diagnosis of hypothyroidism and Hashimoto's.

I, too, had CTS waved at me by GP, and surgery was discussed.

Two things helped me get rid of this tingling [without surgery]:

1. adequate thyroid replacement medication and supplementation,

2. acupuncture. This was an unintended consequence of my having acupuncture for another condition. The tingling cleared up immediately along with that. I have acupuncture if the tingling starts up again.

[SlowDragon Administrator]

Please can you add results and ranges on tests from when on

150mcg

125mcg

100mcg

You will need to get FULL thyroid and vitamin testing done, see exactly where vitamin levels are

[SlowDragon Administrator]

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

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

healthcheckshop.co.uk/store...?

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...

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

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

First step is to get folate, ferritin and B12 tested....privately if GP won’t