Myxoedema

[Pippy28]

Just a quick question hoping someone can clarify for me.... I’ve finally obtained online access to my medical records and on looking at all the details, the diagnosis shown on my records back in 2006 said “Autoimme Myxoedema”. Now I had never heard this term... I was told I was hypothyroid with autoimmune antibodies. My. TSH serum at this point was 95miu/L (last test has it at 0.3 miu/L on 150 mcg Levothyroxine). Could someone clarify for me in layman’s terms if there is a difference in the terms Myxoedema and Hypothyroid. I have never felt much different on any level of medication (always tired but cope, never able to lose weight - probably because I eat too much!!) but just sort of get in with it because life is a bit like that. Am I being foolish to not follow up and ask for further checks? I am considering using the medicheck tests as I have seen many people show that they give a greater range of results. The whole diagnosis only came about following an acute bout of tonsillitis just as my mum died (quite young) and it was suggested that the shock and trauma of it could have been the trigger? TIA xx

[SeasideSusie Remembering]

Pippy28

Myxoedema is another term for hypothyroidism. If you are in England then if you have a diagnosis of hypothyroidism then you get free prescriptions (for everything, not just thyroxine). When you apply for your exemption certificate you tick the box that says "Myxoedema" as there isn't one for "Hypothyroidism".

So if you have autoimmune hypothyroidism, known to patients as Hashimoto's, this is where the immune system attacks the thyroid and gradually destroys it. Hashi's activity causes fluctuations in symptoms and test results and sometimes it helps to adjust dose of Levo temporarily during swings from hypo to hyper and then back to hypo again.

What dose of Levo are you on?

What are your latest test results, with their reference ranges (these vary from lab to lab)?

A Hypo patient should be monitored with repeat tests once a year, and repeat tests 6-8 weeks after any change in dose of Levo.

The aim of a hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well.

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

Some other Hashi's information:

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.

If you want to do a private test, and haven't had vitamins tested, then do the Medichecks Thyroid Plus ULTRAVIT, that tests the full thyroid/vitamin panel. Blue Horizon do an equivalent test which is Thyroid Check PLUS ELEVEN. I like the Medichecks one because it tests Active B12 and Blue Horizon tests Total B12, it's the Active B12 test that is more useful.

[Pippy28 in reply to SeasideSusie]

Thank you for that info.... I sort of hoped that was the answer....just wondered why my records used a different term to what I’d always been told. My TSH levels last year were 0.3 miu/L (considerably better than the 95 miu/L they were on diagnosis) (reference range 0.1 - 3.5). However, it seems from what I’ve read that I really need to check what my T3 and T4 levels are but as with others, these are not included in my doctors results. My current dose is 150mcg Levo. I really wanted to check that I wasn’t being reckless having had this diagnosis for 13 years without questioning further..... i think I’ll just gradually go about getting my own tests done just to keep a closer eye on things than the doc seems to! Maybe the tiredness is just down to a busy life and the weight is just due to being a piggy!! 😋 Thanks x

[helvella Administrator Thyroid UK in reply to Pippy28]

"Myxoedema" is the term still used in the list of disorders which qualify people for prescription charge exemption (in England). Used to be a common term but has fallen out of favour over many years.

Technically, it is the accumulation of mucin in/under the skin which causes swelling (oedema). That is specifically a non-pitting oedema - press with a finger and you do not get a depression which bounces back. It simply does not want to indent at all. Hypothyroidism is one of the very few disorders which cause non-pitting oedema.

[Angel_of_the_North]

Autoimmune myxoedema is just the scientific name for autoimmune hypothyroidism

[humanbean]

One way in which the word myxoedema (or myxedema using US spelling) is still used is in the condition called "myxoedema coma" by doctors.

Someone who is severely hypothyroid and is left untreated can develop symptoms which are potentially fatal. I read once that between 25% and 60% of patients who develop myxoedema coma will die.

Strangely enough it isn't necessary to be in a coma or for the sufferer to have severe oedema / edema for myxoedema coma to be diagnosed.

See this description :

med2date.com/2018/12/myxede...

My personal opinion : The simplifications being employed by doctors and endocrinologists in how hypothyroidism is diagnosed and treated, and the problems this causes for people with either central hypothyroidism or catastrophic failure of the thyroid gland must make myxoedema coma vastly more likely to happen, and inevitably the death rates from it will rise.

[helvella Administrator Thyroid UK in reply to humanbean]

However, I also suspect that some will never be diagnosed. Most obviously if they die of something that is not widely recognised as being due to hypothyroidism. Examples might include physical injuries from falling, or from a road traffic accident, possibly being an impaired driver.

[humanbean in reply to helvella]

Oh yes, I agree the condition must be missed quite often.

It doesn't help matters that some doctors decide that someone with a very low TSH must be hyperthyroid, or over-treated for hypothyroidism, possibly were never hypothyroid at all, and put the patient on anti-thyroid drugs or take hypothyroid patients off their meds altogether.

Because they want a nice easy life when it comes to thyroid disease they will inevitably kill a few (dozen?) people a year, I would have thought. And cause of death probably ends up being recorded as something heart-related, or stroke-related, or dementia or ...