Weakness: Has anyone ever experienced weakness in... - Thyroid UK

Thyroid UK
105,892 members122,733 posts

Weakness

CW12
CW12

Has anyone ever experienced weakness in limbs or hands. I was diagnosed with low b12 in August. I have been given b12 injections and blood has improved but symptoms persist. I know it takes a while for nerves to heal but was wondering if anyone with Hashimotos has experience similar symptoms. Wondering if any symptoms are Hashimotos related.

Thank you

81 Replies
oldestnewest

I have a leaden sensation in arms and legs 24/7 but it worsens when my autoimmune diseases flare - have had it for about 8 years now. think in my case it may relate to fluid retention - which can develop slowly and doesn’t always show up as oedema - just a weak, leaden sensation. I have Hashis, Sjögren’s, overlapping connective tissue diseases with small fibre neuropathy, Raynaud’s and a rare related condition called Erythromelagia.

If I were you I wouldn’t just assume this is Hashis or PA - I’d get it checked out just to exclude conditions like Myositis and myopathies.

CW12
CW12
in reply to Twitchytoes

Thanks for responding. I have been to a neurologist multiple times with clean bran and cervical spine. I have also been to a hematologist. I am in the process of trying to find a new general practitioner as mine offers me no help, only Xanax

CW12
CW12
in reply to CW12

That should say brain

Twitchytoes
Twitchytoes
in reply to CW12

Glad your brain and spine are clear. Even though mine aren’t the neurologists I’ve seen have all tried to diagnose me with an overlaying conversion disorder/ “FND” - until recently.

What changed for me was a rheumatologist I saw privately in September. Then when a vascular med professor said lightly about my Nighttime eye and hand swelling “oh that’s fluid retention because you’re still and it builds up when you aren’t moving your muscles”. I’m to have pulmonary hypertension excluded next as this is what I’m at risk of due to my overlap CTD. Both this and under treated Hashis can cause lymphedema I believe.

We arranged that i would ask endo for a raise in Levothyroxine from 125mcg to 150-175mcg - because she agreed my TSH was a bit higher than it should be considering endo had written to GPs saying it shouldn’t be over 0.1 and it’s been over 1 and well into range. This is where I’m at now as I got endo to intervene for me.

Afterwards I read up and found this:

Lymphedema

medicalnewstoday.com/articl...

“1. Sensational Heaviness of a Limb

This is one of the earliest signs of lymphedema. During stage zero of lymphedema, the symptoms will develop slowly. The apparent symptom of swelling will not be present yet. However, the protein molecules that are not being filtered out properly will start to accumulate underneath your skin. Even though the limb looks presumably normal on the outside, the extra water will pull into the affected area and cause heaviness.”

facty.com/ailments/body/10-...

Are you also taking a daily B complex? All the Bs work together and need to be kept balanced. You will not feel the full benefit of the B12 if the other Bs are low.

Is your hypothyroidism optimally treated? It's low thyroid hormones that causes symptoms, not the Hashi's itself. Is your FT3 up in the top third of the range?

Yes I get leg/arm weakness. I think it’s when I’m swinging Hypothyroid. I have hashimotos. It can last a few days then goes away only to appear next month.

Yes I have weakness in top of thighs, this is because it took so long to diagnose thyrotoxicosis ' my t4 was 94 (12-22) I do have difficulty standing from a sitting position sometimes and trouble using stairs where you push off with right leg going up, ok going down.

I definitely had weak hands & calves and pins & needles when under medicated with Hashimotos. I saw a chiropractor who measured my hand grip & confirmed weak tone. I also saw a specialist who said I had carpel tunnel & wanted to administer injections. I refused & thankfully the situation improved with optimal Levo & following vitamin advice from this forum.

Hope things improve for you soon!

Dustpan
Dustpan
in reply to Buddy195

Why do they always assume carpel tunnel, the same thing they diagnosed me with but when I saw specialist she said, I bet it’s not, did some test and she was right.

CW12
CW12
in reply to Buddy195

Did you ever get checked for low b12. Pins and needles is a neurological symptom of low b12

Yes! Uh, yes. 😩

I get very weak shoulders, upper arms, pelvis and legs.

I moved from levo only onto T3/T4 combo this year, and just two weeks ago to T3 only and it has improved then reappeared every time I increase T3 dose.

I intend to investigate other reasons for this in the new year but I’m pretty confident that it is a T3 thing.

Good luck 😉

JaclynB
JaclynB
in reply to Murphysmum

I get weak thighs and very weak upper arms when I take too much thyroid meds

Murphysmum
Murphysmum
in reply to JaclynB

Well! I have wondered this and continue to keep an eye on it but whilst too much levo definitely didn’t help, I feel the T3 is.

I’m not sure, so at the moment I’ll keep on with no levo and 55mcg T3 for another month or so and see what happens.

I must say that removing the levo has been amazing. I’m not counting my chickens yet but I feel..... cleansed!

Too much levo is definitely good for me... time will tell what’s going on without it.

Thanks for mentioning it 😉

Dustpan
Dustpan
in reply to Murphysmum

I’m not on t3 and still suffer from weak legs.

SlowDragon
SlowDragonAdministrator

Have you had thyroid levels retested since starting on B12

As Greygoose says, are you also taking vitamin B complex daily

Add results and ranges if you have them

Important to test vitamin D and ferritin

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, 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

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

For thyroid including antibodies and 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

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

As you have Hashimoto's are you on strictly gluten free diet? Or tried it?

CW12
CW12
in reply to SlowDragon

Thank you for the thoughtful response! I would live to hear from people with Hashimotos who stopped gluten.

SlowDragon
SlowDragonAdministrator
in reply to CW12

If you read posts on here daily you will see literally hundreds of posts saying how much gluten free diet has helped

You do not need to have any gut symptoms at all

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...

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

You might find my profile info helpful. Severe gluten intolerance despite zero gut symptoms. Unable to walk etc .....now completely returned to full health

CW12
CW12
in reply to SlowDragon

Thank you , very interested. I am hoping I have the discipline. I would live to try and update people. I will look for more post that discussed this.

CW12
CW12
in reply to SlowDragon

I have pernicious anemia so my gut is probably an issue.

SlowDragon
SlowDragonAdministrator
in reply to CW12

So as you have regular B12 injections do you also take a daily good quality vitamin B complex?

This helps keep all B vitamins in balance

But remember to stop taking any supplements that contain biotin a week before any blood tests. (Eg vitamin B complex) as biotin can falsely affect test results

Yes, in my legs. Came on suddenly 15 months after RAI ablation. Needed a wheelchair ever since. Needless to say doctors don't really want to know. I was found to be very deficient in Vitamin D so they put it down to osteomalacia.

LAHs
LAHs
in reply to Summer64

Oh Summer, what happened to you is horrible and terrifying for anyone who has to put the fate of their health into the hands of an uneducated or stupid doctor.

JaclynB
JaclynB
in reply to Summer64

that sounds like they r keeping your tsh too low. I get soooo weak when my tsh is under 1.50

Summer64
Summer64
in reply to JaclynB

That's interesting. When I first had the RAI I was going hypo by the 6 week follow up. My tsh was then 6 and yet I was OK. It was later that I had problems and my tsh was lower but if it goes up into the 2's I get other symptoms and can't manage at all. My vit D was 7 which is very low.

SlowDragon
SlowDragonAdministrator
in reply to Summer64

Summer64

See you had T3 stopped ...and now reinstated?

What are your most recent Thyroid results?

I was heading back towards wheelchair before T3 was added in 2016 (was very ill 20 plus years ago when first diagnosed as Hashimoto's) more on my profile

Now fully recovered and can walk 3-5 miles easily

Getting vitamins optimal was key for me, plus being absolutely strictly gluten free

Are all your vitamins optimal now?

Vitamin D at least around 80nmol and around 100nmol may be better

B12 and folate near top of range

Ferritin at least half way in range

Are you on strictly gluten free diet?

CW12
CW12
in reply to SlowDragon

I stopped today for the first time. Got blood work yesterday before stopping should have results tomorrow. My last reading was August tsh - 1.9 and

t4- 1.2

SlowDragon
SlowDragonAdministrator
in reply to CW12

Stopped what today for first time?

Gluten?

Test results - please always add ranges (figures in brackets after each result)

CW12
CW12
in reply to SlowDragon

Sorry , I stopped synthroid

SlowDragon
SlowDragonAdministrator
in reply to CW12

You shouldn't stop taking synthroid. It's an essential replacement hormone.

You can become extremely ill, sometimes very quickly

Essential to stay on same steady dose everyday

How much are you currently taking?

Why would you stop?

CW12
CW12
in reply to SlowDragon

I only didn’t take it today . I take 75.

I was afraid I was having symptoms because of too much synthroid. But you are tight and I shouldn’t just stop.?hopefully I will have levels back tomorrow

CW12
CW12
in reply to CW12

I also am being treated for low b12. I just may not gave recovered yet

CW12
CW12
in reply to SlowDragon

Tsh 1.9 range is 0.4-4.5

T4 1.2 range .8 - 1.8

SlowDragon
SlowDragonAdministrator
in reply to CW12

Wel without FT3 and vitamin testing you can't say much....

But your Ft4 is only 40% through range.

So you likely need dose increase in (synthroid) Levothyroxine

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Woukd expect FT3 is too low

Most people on just Levothyroxine need FT4 in top third of range and FT3 at least half way in range

CW12
CW12
in reply to SlowDragon

Interesting. So you think I need more. Would I have muscle weakness as a symptom?

SlowDragon
SlowDragonAdministrator
in reply to CW12

Yes quite possibly

CW12
CW12
in reply to CW12

Updated results tsh 1.4. And T4 1.5.

SlowDragon
SlowDragonAdministrator
in reply to CW12

Sorry- you replied to yourself so I wasn’t alerted

What’s the range on TSH and FT4 results

CW12
CW12
in reply to SlowDragon

T4- 0.8 - 1.8 TSH- 0.4-4.5

SlowDragon
SlowDragonAdministrator
in reply to CW12

So FT4 is now 70% through range.

But it's essential to test FT3 at same time. Extremely common to have poor conversion for FT4 to FT3

All four vitamins need to be optimal

Even then conversion can be poor.

Getting full testing is next steps

Summer64
Summer64
in reply to CW12

My last lot of tests with the endo were September and I didn't ask for the thyroid results but Vit D was up to 66. A routine tsh with the gp in October this year was 0.75. In Feb this year my ft4 was 12.5, ft3 3.7 Vit D 39. I did try gluten free but made no difference to me. I thought it had helped with my IBS but then got it so went back to ordinary food. In September this year I had a really bad flare up of IBS. Doctor did a calprotectin stool test and my result was 1016 when it should be under 50. He says that shows inflammatory bowel disease and I see a gastroenterologist in January so will see what he/she thinks then.

SlowDragon
SlowDragonAdministrator
in reply to Summer64

Summer64

FT4 12.5 and FT3 both look EXTREMELY low. What's the range on these

Strongly recommend you get full Thyroid and vitamin testing a week or so before endoscopy

Come back with new post once you get results

Vitamin D needs to be at least around 80nmol and around 100nmol may be better

How much vitamin D are you taking?

What other vitamin supplements do you currently take?

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, best not mentioned to GP or phlebotomist)

If you are back on T3, last dose T3 should be 8-12 hours prior to blood test

Summer64
Summer64
in reply to SlowDragon

I do leave my meds off prior to blood draw having read that on here. I'm surprised you say my levels are low. I've not looked into this as I assume the endo would have picked up on it. I get a blood test 2 weeks before seeing the endo and I see him on 28th February but unfortunately I see the gastro department first. I take 1000 iu Vit D a few times a week as I was told 66 was fine. I get calcichew on NHS and take a 1/4 of a tablet as a maintenance dose. Nervous of too much calcium as I have kidney stones. When I see the endo I will raise these issues. My other vitamins were tested by this GP when I had the bowel flare up and they were all normal. I'll see if I can find the results online. They seem to have changed how they record these now as I used to understand the iron thing whereas now it's measured different and means nothing to me. I will get my next lot of results from the endo but as he's at the hospital you can't see them in your records at the doctors surgery.

SlowDragon
SlowDragonAdministrator
in reply to Summer64

Summer64 So you need to request copies from endocrinologist or test privately

How much Levothyroxine are you currently taking?

Are you now back on small dose of T3 ?

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

Very common after thyroidectomy to need addition of small dose of T3.

FT4 should be at least 70% through range and FT3 at least 50-60% - often higher

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Most endocrinologists are unaware of the importance of good vitamin levels

Yes you are right you don't need calcium. Far better to supplement just vitamin D.

Improving vitamin D naturally raises calcium levels, so much so it's recommended to supplement vitamin K2 mk7, this helps direct the excess calcium into bones rather than clogging arteries

GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently on Levothyroxine we need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Importance of Magnesium

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Bone pain

easy-immune-health.com/pain...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

intechopen.com/books/cell-s...

Summer64
Summer64
in reply to SlowDragon

I'm on 75 mcg Levo and 10mcg Liothyronine. I've just looked at my blood tests from October that the GP ordered in relation to my bowel flare. The only abnormal one was the calprotectin. The serum ferritin was 33 ug/L [23.0 - 300.0] B12 352 ng/L [130.0 - 1100.0] Folate 7.2 ug/L [2.7 - 15.0] . Yes, I will ask for all the test results when I'm next seen. I will also try and read all the info you have outlined. Thank you.

SlowDragon
SlowDragonAdministrator
in reply to Summer64

So these vitamin levels are all too low

B12 and folate on the low side. B12 should be at least over 500 and folate at least over ten

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. 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 Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

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

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

Low vitamin D and low B vitamins may be linked as explained here

drgominak.com/sleep/vitamin...

Ferritin should be at least around 70. Has Gp done full iron panel test for Anaemia?

Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

Summer64
Summer64
in reply to SlowDragon

Not had test for anemia for a while but I do remember years ago having it A more recent test showed I had too many red blood cells so I assumed I couldn't be now.

SlowDragon
SlowDragonAdministrator
in reply to Summer64

Do you mean LARGE red blood cells

Common with low B12 and folate

medicalnewstoday.com/articl...

Summer64
Summer64
in reply to SlowDragon

I'll have to see if I can find those results. I don't think it mentioned size just too many.

SlowDragon
SlowDragonAdministrator
in reply to Summer64

Private tests are available.

Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

For thyroid including antibodies and 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

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

CW12
CW12
in reply to JaclynB

Just got results My tsh 1.4. What do you do in these instances

JaclynB
JaclynB
in reply to CW12

Your body is sensitive to thyroid replacement. I would alternate the dose your on now with a lower dose age once a week and see if after 2-3 months your muscle strength returns

I have muscle weakness in my hands, shoulders and upper thighs I wish I knew what this was .

Yes I'm dealing with this at the moment. Symptoms seem to be getting worse and I'm jow seeing a neurologist. As my hands and feet feel like they are on fire and I need ice in them alot if the time to get a sleep at night. Plus the fatigue is crazy andnim now being very clumsy.... would love to get answers but I under these things take time...

JaclynB
JaclynB
in reply to MjM2015

When my tsh gets under 1.50 I start heading in the hyper direction and I have to put ice packs on my feet and hands because thyroid meds can give you those Symptoms. You might need a lower dosage.

CW12
CW12
in reply to JaclynB

My numbers were on the lower side. Was thinking this might be the case. Just had a test done yesterday. Waiting for results . Thank you for your response

CW12
CW12
in reply to CW12

Actually t4 was 1.2 and tsh was 1.9.

CW12
CW12
in reply to JaclynB

In August t3 was 1.3 and TSH was 2.0

SlowDragon
SlowDragonAdministrator
in reply to CW12

Essential to test FT3 and FT4 plus tSH

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 prior to blood test

Essential to test vitamin D, folate, ferritin and B12 too

CW12
CW12
in reply to JaclynB

Sorry one more thing you have me thinking. What did you do when you started to fall into the hyper range . Did you go off for awhile? How long? How long did you symptoms resolve. Thank you!

JaclynB
JaclynB
in reply to CW12

The symptoms first started after my tsh dropped under 2.40 then as I continue on the same dosage after about 3 months I start feeling pin pricks and needle like stings bad heartburn and burning feet and hands and it gets so hard to lift my arms above my head like I’m wearing dead weights I really started having trouble opening jars and I remember having a really hard time twirling my fork when I was eating spaghetti. No doctor will usually say your overmedicated with those symptoms because your really not overmedicated it’s that I think some people don’t handle the side effects in general to thyroid meds. Or some people just have to run higher with there tsh like between 2-3 to get there strength back. Thyroid meds cause bad muscle wasting. It takes about 3 months on a lower dosage and I’m talking like maybe only a 5 mcg a day lower to find your sweet spot as they say

SlowDragon
SlowDragonAdministrator
in reply to MjM2015

MjM2015

What vitamin supplements do you currently take?

Burning feet is peripheral neuropathy, usually caused by low B vitamins especially B12 and/or low vitamin D

When were B12, folate, ferritin and vitamin D last tested?

If vitamin D is low, B vitamins may be too. As explained by Dr Gominack

drgominak.com/sleep/vitamin...

healthunlocked.com/thyroidu...’s-role-in-sleep-the-gut-b-vitamins

healthunlocked.com/thyroidu...’s-role-in-sleep-the-gut-b-vitamins

MjM2015
MjM2015
in reply to SlowDragon

I'm actually on non at the moment... I did have doctor app yesterday but had to cancel due to my hands and feet.. really painful cant stand or touch and I now feel water temp differently on my scalp than I do on my body.. not sure what thsts about... I'm booking bloods in the new year once I've spoke to my gp and see what bloods she is willing to do first... they put everything down to being hypothyroidism and hashimoto's ..

SlowDragon
SlowDragonAdministrator
in reply to MjM2015

MjM2015

As you have Hashimoto's you likely need to supplement continuously to maintain optimal vitamin levels

Vitamin D at least around 80nmol and around 100nmol may be better

Folate and B12 near top of range

Ferritin at least half way in range

Recommend you get full Thyroid and vitamin testing via Medichecks in January.

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, best not mentioned to GP or phlebotomist)

Come back with new post once you get results

MjM2015
MjM2015
in reply to SlowDragon

Thank you so much for this... it's crazy your not told this. Uk seems to be very backwards with certain things.

SlowDragon
SlowDragonAdministrator
in reply to MjM2015

Yes....NHS will only ever follow guidelines

They should test for actual vitamin deficiencies, but patients actually need vitamin levels optimal

5% of Hashimoto's patients have coeliac disease, but at least 80% of Hashimoto's patients are gluten intolerant....

So NHS will test for coeliac, but if coeliac test is negative but NHS will won't even mention that it might be a good idea to try strictly gluten free diet

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

Yes I have been on B12 injections now 20 years and it as helped me so much. If I miss a dosage which I have every three months my limbs and bones hurt like hell.

Yes, when I was not doing well on levothyroxine, not converting T4 to T3 and had suppression of HPA axis, I was weak and clumsy and had nerve pains and cramps. Been on T3 only past year and doing so much better! (I have Hashimotos with not much functioning thyroid remaining and a DIO1 enzyme mutation)

After seeing many specialists I found a Functional Medicine doctor.

My issues were caused by severe inflammation.

I take CBD oil, vitamin D, Omega 3, and Magnesium.

He also put me on bioidentical hormones. I am post menopausal.

I could barely walk, and now I am great. I even went back to the gym.

Good Luck!

I have weakness in calves and lower arms, wish i knew what it was aswell, mine comes and goes and is worse when stressed

Hi CW12 I've been diagnosed with hasimoto thyroiditis I have hypothyroidism last ten years I'm on eltroxin 175mg I get hand weakness and I get such bad knee pains like an old person I'm in my early 40s. Suffering chronic fatigue severe weight gain hair loss . I didn't think anything of the numbness and weakness in my hands till I saw ur post. I've been dismissed by an endocrinologist after waiting three years back to my gp. Long story most upsetting was in with my gp last Tuesday no print out of my results still to put up. I dont understand anything my gp told me he will sort it out with me in the new year. So I'm going to post lots on this site and hopefully everyone will help once I have my results. I'm new to this site and u couldn't have come to a more supportive place. I had so many brilliant people help me out. I'm looking forward to the new year so I can put up previous and new blood results and learn how to manage this disease. Hopefully we can all learn and help eachother out

I’m so happy I found this site too. I am also in my early 40s . You should have your B12 level tested off you have not. I have pernicious anemia. So that could contribute or cause my weakness too . I’m just trying to explore all reasons

SlowDragon
SlowDragonAdministrator
in reply to Fatiguedtoodeath

Fatiguedtoodeath

How much Levothyroxine are you currently taking?

Always get same brand?

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.

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.

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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

How low were vitamin D and iron?

1000iu vitamin D may not be enough

Have you had thyroid antibodies tested?

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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, best not mentioned to GP or phlebotomist)

Thanks I'm on 175mg eltroxin brand AMDIPHARM I'm not in the UK wish I was. I have been diagnosed with hasimoto thyroiditis last five years low iron vitamin d I'm on 1000ug a day B12 never been tested going to get it done after xmas and also demand a print out of my results thanks slowdragon

SlowDragon
SlowDragonAdministrator
in reply to Fatiguedtoodeath

Plus trying strictly gluten free diet if not already gluten free

Get Coeliac blood test first

Thanks slow dragon I haven't gone gluten free yet as I've only learn about it from this site to be brutally honest not a chance could I start before xmas I would make it. Too many goodies in lol. But I'm defo starting 1 st January I may it seems to help so many I wouldn't have even know I will get the test done also in the new year. Do u recommend test first because I'll book in as soon as I can.

SlowDragon
SlowDragonAdministrator
in reply to Fatiguedtoodeath

Yes get coeliac test first ..while still eating high levels gluten

You can buy easy spot blood test online - look on Amazon etc

If coeliac test is positive you need to see GP and have endoscopy while still eating gluten rich diet

Thanks SlowDragon and happy Christmas 🎄🎁

Hi CW13 my B12 never been tested I know that much only my iron and vitamin d which is also low as I suffer from severe constipation I wo t take iron tablets the make me much worse I try get it from lots of red meat. I'm taking altavita D3 1000Iu tablets last three month. Thanks I'll make sure to get ot tested in the new year

SlowDragon
SlowDragonAdministrator
in reply to Fatiguedtoodeath

1000iu vitamin D may not be enough. Looking to have vitamin D around 100nmol or 40ng/ml

I will increase my dosage of vitamin D thanks slow dragon

Does clamping hands count? So, if I’m brushing my hair, or lifting a kettle, my hands tend to clamp around the object and I have to unclamp it afterwards. If so, then yes!

You may also like...