Myxedema Coma ruined my life

[Reirish]

I had a TT in June 2016 for multi-nodule thyroid goiter, turned out to be cancer. First endo left me off my meds for 2 months waiting of tsh to be above 30. Despite my pleas for help and telling her something was wrong. Her co-worker saw my last email to her and called, heard how I spoke-at that time I had begun to stutter and my speech was very slow and slurred. Was taken to e.r. and put in the ICU with myxedema coma. My TSH was nearly 300. Since leaving the hospital I now have primary biliary cholangitis, degenerative joint disease in my knees and back, a bulging disc in my neck pushing on my spine, I get panic attacks, preclincal lupus, showing signs of dementia on my mri, and been tested extensively because I am often tired, I can't handle anything stressful, I get easily overstimulated, my legs have a hard time working, I lose my breath walking to the bathroom (housework and cooking...or anything really) are things I can no longer do, and I have cognitive issues (say the wrong words when speaking or can't think of the word I'm trying to say). I am not a doctor obviously but I was perfectly healthy(except for having psoriasis) before myxedema coma. My Neuro says it's thyroid related (or lack thereof), my endo says no. My numbers are all in range...even kept on the lower side because that's where my numbers were before I had my TT). I am desperate to find an answer. I've been tested for everything under the sun. Has anyone had anything similar?

[trelemorele]

Oh my God! That's awful what endo put you through.

Since when are your thyroid levels "normal"?

Can you post actual results.

You may need longer for your body to heal on stabilised thyroid levels.

It may be that Levo is not working for you and you'd need t3 added. Have you spoken about it with your endo or Neuro?

[helvella Administrator Thyroid UK]

Reirish,

That first endo should be sacked. Full stop.

I absolutely understand if it is too much for you to do, but a complaint would be entirely in order.

Please let us know the results of tests you have had.

[SeasideSusie Remembering]

Why on earth would your endo wait until your TSH was 30? It beggars belief! I agree with Helvella, if at all possible, with help from supportive family member possibly, pursue a complaint. This is absolutely dreadful.

[Clutter in reply to SeasideSusie]

SeasideSusie,

If follow up RAI is required after thyroidectomy it is necessary for TSH to rise >30 to ensure take up of the radioactive iodine. There was no need for Reirish to be left 2 months without thyroid replacement though. 4 weeks without Levothyroxine is usually sufficient and 2 of those weeks can be on Liothyronine.

[SeasideSusie Remembering in reply to Clutter]

Thanks Clutter, I didn't know that. Sounds awful though

[Clutter in reply to SeasideSusie]

SeasideSusie,

Not fun, for sure. I think Thyrogen is available in the UK now which means the period of hypothyroidism is less. Has other side effects though.

[shaws Administrator]

You have had an absolutely awful time - in this 'modern age' which has taken my breath away.

Forget 'normal' with regard to blood tests. We need optimal but Endocrinologists and doctors seem so poorly trained and it seems to me that they only know about TSH and T4.

All our results have to be optimal, i.e. TSH of 1 or lower, Free T4 and Free T3 in the upper part of the ranges.

We need B12, Vit D, iron, ferrtin and folate to be checked and brought to optimal as well.

All blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours from the last dose of levo and the test and take afterwards.

Always get a print-out from the surgery and make sure ranges are shown as members need ranges to respond.

Post your results onto a new post and members will respond. I think I'd go with the surgeon's suggestion rather then the Endos. My personal opinion is that someone whose thyroid gland has been removed need a combination of T3/T4. T4 is inactive and has to convert to T3. T3 is the only active thyroid hormone needed in our millions of receptor cells but sometimes we cannot convert dose of levo into sufficient T3.

[Hillwoman]

I'm so sorry to hear of your experience. I can only sympathise, though I haven't had a TT or any experience of thyroid cancer. However, I have reached at various times what is known as an 'end-stage' condition of hypothyroidism. It is absolutely awful, and I too seem to have a cognitive problems which are not reversing.

Some people eventually experience a full remission with the correct treatment; others (myself included) find that remission is only ever partial. But any recovery at all is absolutely essential for future health and well-being. Please pursue T3 treatment, as others have suggested. If you run into problems with this, let us know.

[SlowDragon Administrator]

Essential to get vitamin D, folate, ferritin and B12 tested

Post results and ranges of these and TSH, FT4 and FT3 as well

Vitamins often too low as result of such terrible treatment

you may need addition of small dose of T3 too

Post results first for advice

[Silver_Fairy]

Please! Put in a complaint - that Endo shouldn't be let loose on patients!

You've found the forum, follow the advice, onwards and upwards!

[humanbean]

I would suspect that your cortisol production may have been severely disturbed by going into myxodoema coma and it may not have recovered completely. When the body has too little thyroid hormone it uses cortisol and adrenalin as (poor) substitutes for as long as possible. In some cases cortisol and adrenaline will return to normal when thyroid hormones return to normal. But they might not. And if they don't you will feel awful.

In a healthy person cortisol production varies throughout the day as shown in the following diagram :

alpineintegratedmedicineblo...

However, all sorts of things can go wrong with cortisol production.

If it ends up much too high all day then the person may be diagnosed with Cushing's Syndrome/Disease.

If it ends up much too low or effectively zero then the person has Addison's Disease (also known as "adrenal insufficiency").

Both the above conditions are very serious and can be fatal. They are not common, and they would usually arise as a result of tumours on the adrenal glands or the pituitary.

Another much more common problem, particularly for people with thyroid issues, is that their circadian rhythm ends up disturbed so that highs and lows in their cortisol production occur at the wrong time of day, and/or the highs are sometimes too high and the lows are sometimes too low. Or they may end up producing too little or too much cortisol overall, although not to the extent of having Cushing's or Addison's. Patients and alternative medicine doctors refer to this problem as "adrenal fatigue". Doctors pour scorn on adrenal fatigue and don't believe it is real, so don't mention it to them.

To find out how well your cortisol production is working and whether it is being produced in the right quantities at the right times look into the subject of 4-part saliva testing for cortisol.

You'll find saliva testing for cortisol mentioned on this forum fairly often. If you live in the UK then two companies that do this kind of testing are Genova Diagnostics UK and Regenerus labs. They are my preferred choice of labs to do this testing because they both include a DHEA test as part of the testing protocol.

gdx.net/uk/product/adrenal-...

regeneruslabs.com/shop/prod...

There is no need to pay for more than 4 samples throughout the day. Neither of the tests I've linked are perfect. Both companies have started providing reference ranges for later in the day that show the reference range as being less than a particular value. These aren't helpful because cortisol can never be zero for good health. But unfortunately there are no other options.

A good site to browse for info on adrenal fatigue is this one :

drlam.com/

Click on the "About AFS" and "Recovery" at the top of the page and follow some of the links given.

Luckily, there are lots of things that people can do to improve their adrenal health without involving doctors. But you need to know whether or not you need help first and what, if anything, you have to treat.

[Reirish in reply to humanbean]

I've been tested for adrenal fatigue and tumors on the pituitary. Endo says it is not thyroid related....i still believe being severely hypo for that ling did something to my body. It's been a year and a half since I was in icu...it took 5 months after to start feeling good again...right before I did the radioactive iodine pill and was off my meds for 2 weeks. I haven't been the same since. I have had a few good days here and there which gives me hope, but now have involuntary muscle movements that cause my body to twist and contort. Sometimes it's not bad, sometimes it's super painful. Had a doctor tell me I may have PTSD from the myxedema....it broke my mind, and all these symptoms are my body trying to cope with stressors. Got more tests done yesterday, lupus, lyme, and stiff person syndrome. We'll see what happens.

[humanbean in reply to Reirish]

Muscle problems might be related to low magnesium, low iron, low ferritin, low vitamin B12, low potassium, low vitamin D.

There is no point in testing magnesium levels because of the way that the body handles it. Even very deficient people may have good levels in blood, but cells elsewhere in the body could be severely deficient. As long as you have moderately healthy kidneys there should be no problems supplementing magnesium. You would need to take roughly 300mg - 400mg per day. And there are lots of ways of supplementing magnesium - some good, and some totally pointless because the body can't absorb it. To find a kind of magnesium supplement that works for you, google for "best and worst forms of magnesium", choose a few links and read them, then choose something that appeals to you.

For the other things I've mentioned you would need to get tested to know whether or not supplementing was a good idea.

As far as cortisol and adrenal fatigue is concerned, I wouldn't worry about this until your nutrient levels and thyroid hormone levels are fairly good.

[humanbean in reply to Reirish]

Had a doctor tell me I may have PTSD from the myxedema....it broke my mind, and all these symptoms are my body trying to cope with stressors.

Your doctor may be right, I don't know. Did he offer any actual treatment? If he did what was it? I hope it wasn't simply anti-depressants or tranquilisers.

I have found that optimising my own nutrient levels helps my own stress, depression, anxiety problems far more than any anti-depressant ever did.