Why does hypothyroidism create a swollen tongue?

[liverish]

Hi, I’m hypothyroid with Hashimotos, currently I think the Meds are right, 175mg Levo a day. I actually feel fine, nor am I over medicated (I have a tell for that, my little finger nail lifts from the nail bed), so currently stable and well functioning. The only problem is my permanent swollen tongue... how does this happen (the science please if anyone knows), is it indicative of inflammation elsewhere, and what can I do to treat it? I’d like to know the science behind my lifting fingernail when over medicated too... and peripheral neuropathy, I’m fed up of being told about symptoms but not understanding the how and why - thanks!

[SlowDragon Administrator]

Extremely common on levothyroxine to have low vitamin levels

Do you always get same brand of levothyroxine

If yes ....Which brand?

What vitamin supplements are you currently taking

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

Low B vitamins often linked to swollen tongue, pins and needles and peripheral neuropathy

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

Ask GP to test vitamin levels

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)

Is this how you do your tests?

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

[liverish in reply to SlowDragon]

Thanks, could be the B12, I'm not brilliant at taking supplements regularly. In answer to do I get the same brand of levo each time - Ha! I'm sure they try and spread the business around a bit, the 25mg 50mg and 100mg are always different brands, but those brands switch around each time too. I gave up asking for the same brand... And what do they cut the 25mg ones with to make the tablet so much larger that the 100mg???

[SlowDragon Administrator in reply to liverish]

So you need to work out which brand suits you best and insist on only getting that brand

Different brands are not bio equivalent

100mcg in one brand will not give same response as 100mcg in a different brand

Recommend getting vitamin levels tested

[Niteflite]

Hi, I also have a swollen tongue. It’s described as scalloped because of the indents around the edge caused by the teeth. I have read that it is caused by being under medicated.

[Miffie]

I have this again at the moment.An enlarged tongue, with or without scallops is often a sign of under medication. It’s just not in some doctors minds this can be the case the case. The GP I saw prior to starting self medicating told me that it has nothing to do with hypothyroidism, rather said it was the result of taking excess Levo or anxiety. He suggested lowering levo. My results clearly showed my T4 was about 30% into range so obviously very close to dangerously high. As soon as I improved my levels my tongue returned to normal. I have had this off and on for over fifty years and it’s always when my meds needed an increase. At least half a dozen doctors have told me it’s a classic things aren’t right and an increase is needed.

I reduced my NDT to please a GP who in fairness is trying to do the right thing, she noticed that the reduced dose gave meant rock bottom T4 so now increasing again and my tongue a little less bothersome.

[SilverAvocado]

Unfortunately I don't think the fine detailed type of information you're hoping for really exists For most of these things very little is known about the exact mechanisms.

Thyroid hormone is required by every single cell in our body, which also means every organ and tissue. It is used in the process of making energy, but I dont think the detail of what it does is actually known. Then each cell will go off and use that energy to do what it usually does. Because this is such a basic thing in how our bodies operate, there is a vast list of symptoms not having enough hormone can produce.

[liverish in reply to SilverAvocado]

A sure sign insufficient research is being undertaken. We need more men suffering and maybe that would lubricate the research budgets!