I need urgent advice, I am in hospital with Myxedema after another heart event. I have already been moved to two different hospitals.

[Mia1057]

Nothing is working at all. I am very cold and very confused. I keep falling asleep and they cannot wake me.

[Hidden]

Could it be Addison's?

[Mia1057 in reply to Hidden]

That is what they first thought as both my parathyroid and aldesterone levels are way out too plus I have coeliac disease and lupus but the tests etc for Addison's came back negative. They seem to think I have had a shock to my Immune system a bit like PTSD caused by the deaths of my two sisters, my mothers dementia and the break up of my long relationship. But no treatment seems to help at all

[Hidden]

Are you getting levothyroxine via a drip? If you have an Addisonian crisis have you had any steroid treatment or at least a saline drip? Hugs.

[Mia1057 in reply to Hidden]

They say it is not Addison but I am having levothyroxine via drip for 7 days now but my TSH is still rising and my T3 and T4 are so low that they can hardly be detected. They also are giving me steroids for my lupus by drip.

[Hidden in reply to Mia1057]

You must feel terrible, what a worry. Is an endocrinologist overseeing your case? I expect all these treatments are going to take a while to kick in. Have you had a thyroid scan? Or testing your urine for hormones, or blood tests for cortisol etc etc?

[Mia1057 in reply to Hidden]

Had all of that done, I have serious inflammation and my thyroid antibodies are elevated at 1249

[carolr in reply to Mia1057]

Mia1057,

TSH increases because of infection.

Steroids can suppress the immune system. Infection markers don't then show up.

That applies to Lyme Disease and must therefore apply to other infections. It's not until antibiotics are given and reach the opterman level.

will the markers show up.

The they seem to give the same dose no matter what size u are. If you are diabetic or syndrome x your liver function is poor.

So oral is not good either.

They should be able to Check the concentration and absorption?

Carol

[Muffy]

Have you asked the consultants about giving you T3?

[Mia1057 in reply to Muffy]

Yes they are doing that too, they seem as confused as I am seemingly there are a very small number of people less than 0.5% who do not respond to thyroid replacement. The doctor is now wondering if that is me

[Hidden in reply to Mia1057]

If your blood levels of hormones are still low I don't think they can say that you are not responding to treatment yet. Likely they just haven't given you enough hormone. As mentioned, levo take ages to kick in so might be good if you can get them to increase the T3. Hope it all starts working for you soon .x

[Hidden in reply to Hidden]

What dose are you on?

[Mia1057 in reply to Hidden]

I have been on 250mcg of levo for 3 years

[Hidden in reply to Mia1057]

And were you feeling well on it at one point and it has suddenly stopped working?

I don't suppose you feel well enough to get any blood results to post on here do you? Hugs!

[Mia1057 in reply to Hidden]

They have been getting steadily worse over the last two years. This mornings were

TSH 218 (normal range 0.3-4.00)

Free T4 not discernible (normal range 0.7-2.00)

Total T4 0.76 (normal range 4.00 -12.00)

T3 0.6 (normal range 3.8-6.00)

Thyroid peroxidase antibody (TPOAb) 1287 IU/mL normal range (Less than 35 IU/mL) I am in Italy so ranges are different. They started me on a combination of T3 and T4 by adding 20 drops of T3 20 mcg per day but it's not working either and 5 days later my results are worse.

[Hidden in reply to Mia1057]

And they have left you for 2 years to get to this point?! Unbelievable. I'm so sorry.

I don't understand why your fT4 is low, and tT4 too. As Helcaster said, have you had your urine tested for thyroid hormones? The hormones are obviously going in via a drip but maybe they are all coming straight out? Do you have the results?

So you're now on 20mcg T3 with 250mcg levo via a drip?

Hoping someone else can come along and help... !

[Hidden in reply to Mia1057]

I don't suppose they've tested your rT3 have they?

[Mia1057 in reply to Hidden]

No they didn't seem to understand what I meant by that? Thanks everyone so tired now

[Hidden in reply to Mia1057]

Aww bless you Not surprised with a T3 result that low! Get lots of rest hopefully more T3 and less T4 might help. Don't give up xxx

[alangardner]

hi mia , cant help with any advise but I am sending loads of <<<hugs>> & thoughts to you -- they should be getting there about NOW .....I really hope and pray that you get over this little blip .....alan xxx

[Heloise]

Mia, how hopeless you must feel. Is there a chance they would give you LDN, low dose naltraxone, which can deter autoimmune conditions. It might be that you are also having all sorts of conversion problems and might do better dropping all T4 for T3 only. Just ideas from a non medical person. Please let us know when you are better.

[Muffy]

Looks as though you might not have been converting T4 to T3. The reference below was for somebody with subclinical blood test results (how it can be subclinical when patient having symptoms, I don't know,) but you may find this useful to show your doctors.

"We diagnosed myxedema coma and started treatment with intravenous T3. She responded dramatically with improvement in level of consciousness and normalization of metabolic parameters"

Myxedema Coma in a Patient with Subclinical Hypothyroidism. ncbi.nlm.nih.gov/pubmed/210...

[helvella Administrator Thyroid UK in reply to Muffy]

That is, I agree, an interesting case.

Mia,

Are your doctors aware that some people need massively more T3 than others? It is not unknown for doses such as 160mcg a day to be needed.

Has anyone checked your Thyroid Binding Globulin? If the proteins which bind thyroid hormone are low, it strikes me as possible that you do not adequately retain thyroid hormones in your body. I'd guess that a considerable proportion of the thyroid hormone could be excreted (urine, faeces). Hence, they are so low.

Rod

[nobodysdriving in reply to helvella]

yes, some people only need T3, if you are in such 'horrid' situation ask for the drip to be T3 only!

also can you ask for all your vits to be tested too? ie vitamin B12, D etc etc?

[shaws Administrator]

I think it is horrendous that you have to more or less have a myxedama coma. Obviously levothyroxine doesn't work for you if you were on 250mcg, why give you a levo drip???

Point out Muffy's and Helvellas posts, they know more that the whole of the Endocrinologists in the country. As you yourself say, they are puzzled.

[deniD]

Disgusting hope they sort you out asp!

[T3sortedme]

If you are not converting T4 (which i wasn't) you need to take T3 and stop the T4 because of reverse T3 (rT3). I got slight improvement on T3 with T4 but dramatic improvement as soon as I stopped taking T4 and had T3 only. I improved each day as the rT3 cleared from my system.

So sorry you are so unwell. I really hope the medical team will listen and I really hope that it is the problem and it works as it is a simple solution (and something they have not tried).

[LinDonaldson]

Hi there,

Do you know how much T3 you are being given and can you say how it is administered? Have you been in a come?

Warmest regards

Lin

[Mia1057 in reply to LinDonaldson]

I am difficult to wake but not a coma

[Aurealis]

Thinking of you and wishing you good luck. Hope you are better soon

[LinDonaldson]

Hi Mia1057,

Sounds like it is taking some time for your thyroid meds to work. It is usual to administer T3 when a person is in a myxedema coma. Have you other problems like low iron because this can interfere with convbersion of T4 to T3.

Wishing you the very best of luck.

Kind regards

Lin

ps you are very brave

[Mia1057]

I just wanted to thank everyone who was so kind to answer my query when I was so ill. Seemingly I am a pretty rare specimen who as well as Hashimoto's, I now have tertiary thyroid disease caused by white matter growth/changes? In the area of my hypothalamus. There is no way to reverse this and so far I have not responded well to either T3 or T4 or a combination. Actually after 3 years of being unwell, 2 major heart events inclusion putting in a stent and a stroke it's a bit of a relief to find out what has really been going on. Anyway thank you all for all your support

[editfmrt in reply to Mia1057]

Hi Mia. Thanks for the update. I hope you will stay with this site. Perhaps some elements of your illness may be rare but the fact that you have not responded well to T3 and T4 certainly is not rare. Neither are the results of thyroid illness not treated well like heart issues rare. Most of the people on this site and many other similar forums around the world are testament to synthetic hormones not being suitable for them. The medical profession will not acknowledge this and most don't even recognise it because they are ignorant about the impact of thyroid illness. There are alternative options like NDT which so many on here will tell you have given them their lives back. Good luck x

[faith63 in reply to Mia1057]

I pray that you are improving. There are people out there that don't convert t4 to t3 and t4 meds are worthless for them. You appear to be thyroid hormone resistant and as far as i know, t3 only in large doses is what is used to treat this. You may have to buy it yourself from overseas to save your life. It is very inexpensive. I have had to order my own and you can get it without a prescription. I have lost 5 years of my life because of doctors ignorance. When you said they were only giving you 20mcgs of t3..i was shocked! Did you know that the recommended dose for treating Myxedema is 75mcgs and the most being 100 and many will tell you that may not be enough.

Best wishes

E..