Hypothyroidism suffering with really painful sw... - Thyroid UK

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Hypothyroidism suffering with really painful swollen ankles

shaz35 profile image
13 Replies

Hi Have only been diagnosed for 6 months, taking 125mg levythyroxine. my last blood results were T4 17.9 TSH 17.7 sodium 141 creatinine 92 b12 934 folate 9.3 vit d 43.

I have been taking vit D supplements since results. Is there anything I can do to help swollen ankles and fingers? Am quite new to this so any advice is welcome thanks x

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shaz35
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greygoose profile image
greygoose

Can you add the ranges for those results, please. Ranges vary from lab to lab, so we need the ranges that came with your results. :)

How long have you been on 125 mcg (not mg) levo?

SlowDragon profile image
SlowDragonAdministrator

T4 17.9

TSH 17.7

sodium 141

creatinine 92

b12 934

folate 9.3

vit d 43.

Please add ranges on these results

Are you sure TSH is 17.7

If it is you’re under medicated and need 25mcg dose increase in levothyroxine

On levothyroxine TSH should ALWAYS be under 2

You also need thyroid antibodies tested to see if cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s.

About 90% of primary hypothyroidism is autoimmune thyroid

Ferritin and iron need testing

Vitamin D. Please add units

shaz35 profile image
shaz35 in reply toSlowDragon

sorry you can tell I am new to all this!

results
shaz35 profile image
shaz35

I have been on 125mcg for 6 weeks about to have another blood test. My original blood test 6 months ago was

test
SlowDragon profile image
SlowDragonAdministrator in reply toshaz35

Wow …impressively high TSH …..many members get diagnosed with TSH of 6-10!

Which brand of levothyroxine are you currently taking

Have you had same brand each prescription

Many people find different brands are not interchangeable

Vitamin D

You’re in the U.K.?

If so units for vitamin D are nmol

GP should prescribe 1600iu everyday for 6 months

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol. Some health areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with thyroid disease , improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

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

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Government recommends everyone supplement October to April

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

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

shaz35 profile image
shaz35 in reply toSlowDragon

I sm on 100mcg of accord levythyroxine and 25mcg of northstar. I have had the same brand the whole time.Im in the uk.have just started taking magnesium oxide 500mg in the morning, I take my levythyroxine at night.

SlowDragon profile image
SlowDragonAdministrator in reply toshaz35

Northstar 25mcg is Teva brand

Northstar 50mcg and 100mcg are Accord brand

Accord don’t make 25mcg tablets

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds

Teva brand upsets many many people

Teva contains mannitol as a filler, which seems to be possible cause of problems.

But for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, or Aristo (100mcg only) are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but many members find it more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

As you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

SlowDragon profile image
SlowDragonAdministrator in reply toshaz35

Was this most recent thyroid test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?

Ft4 17.9 (12-22)

Ft4 is 59% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Suggest you retest again including Ft3 in another 6-8 weeks

Looking for both Ft4 and Ft3 at least 50-60% through range

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/

Meanwhile working on improving low vitamin D

Retest in 3-4 months

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Have you had thyroid antibodies tested for autoimmune thyroid disease (hashimoto’s)

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue too

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

shaz35 profile image
shaz35

Thank you for all your information. Definitely need to do more reading! Will book another blood test next week.

test
SlowDragon profile image
SlowDragonAdministrator in reply toshaz35

You need to click on blue reply button…..otherwise the other person doesn’t get alerted

So your high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s

Have you coeliac blood test done yet, if not that needs doing by GP ….plus iron and ferritin

You were extremely hypothyroid at diagnosis…..it’s going to take several months for levels to settle

Likely to see TSH drop further at next thyroid test in 8-10 weeks time

Meanwhile getting ferritin tested and improving low vitamin D

nellie237 profile image
nellie237

"Is there anything I can do to help swollen ankles and fingers?" I wish that I could help you with this ? but I think that you need to push your GP for answers. Having said that, I think it is something that medics seem unwilling to investigate.

SlowDragon profile image
SlowDragonAdministrator

high antibodies is known by medics here in UK as autoimmune thyroid disease. Technically it’s Hashimoto's (with goitre) or Ord’s thyroiditis (no goitre). Both variants are autoimmune and more commonly just 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 working

Poor gut function with Hashimoto’s 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

Before considering trial on gluten free diet get coeliac blood test done FIRST just to rule it out

lloydspharmacy.com/products...

If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)

If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.

If no obvious improvement, reintroduce gluten 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.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

Pastelart profile image
Pastelart

I don’t know whether it will help, but when I lived in Africa, my feet and hands swelled up when my electrolytes were low. I had to take oral rehydration tablets, which reduced the swelling miraculously.

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