Myxedema

[cate369]

I was in the hospital and diagnosed with myxedema, my TSH was greater than 100, I had swelling from head to toe, thick tongue, vital signs were affected, kidney function low. Now 3 months later labs are all within normal range but I have gained 40 lbs. Still on lasix and potassium. Why am I still feeling so tired and weak all the time? Also, I am very tachycardic with any activity at all.

[SlowDragon Administrator]

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 25th 2018)

How much Levothyroxine are you taking

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

[Boohbette17]

Hi cate369 , wow! so glad you made it thru!!🙏 How scarey. I've heard of this in my reading when I first got diagnosed with Hashinotos. I imagine there are many things your body must be "adjusting" as you heal. As far as weight goes, I learned alot here( see link) & lost 20lbs . Hugs🌺😊

saragottfriedmd.com/what-to...

[Beata_s]

I’m so sorry to hear that !

Several times in my research I came across that joined deficiency of iodine and selenium cause myxedema ? Perhaps worth asking the doctors to run those tests plus essentials like ferritin B12, folate and vit D ? Member where stress how important it is. Good luck x hope you feel better soon

[Auntyp62]

I had myxoedema in the 70ties and came out of hospital 3 weeks later on 300 mg of thyroxine..I felt great. But then became very ill with too much t4. I think nowadays they take it slow but sure and start on Lowe doses to allow a lot of readjustment in the body. You sound like you need more t4 but without results as the others say it’s imposible to advise. Please don’t underestimate the effect of vitamin loss during myxoedema, remember your whole body has been under functioning for a while and would not have absorbed nutrients as it should. I’ve only learned about vitamins through this site recently and they changed my health around. I can assure you there is life after myxoedema and you have come to the best place to advise you how to get there. Good luck

[shaws Administrator]

Myxedema is the proper word for Hypothyroidism.

When you have a blood test taken, it has to be at the earliest possible, fasting (you can drink water) but allow a 24 hour gap between last dose of levo and the test and take afterwards.

The aim is an increase in dose after a six weekly blood tests until TSH is 1 or lower.

The Full Thyroid Blood Test consists of TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. This is rarely tested as it seems most doctors only test for TSH and T4.

Ask GP to also test B12, Vit D, iron, ferritin and folate as well as a Full Thyroid Blood test - the thyroid ones not tested you can get privately if you wish.

thyroiduk.org.uk/tuk/testin...

We have two private labs who offer home pin-prick blood tests and if you decided to do this make sure you are well-hydrated a couple of days before. Blue Horizon and Medichecks (who has a special offer every Thursday) of some sort.

'Normal' with regard to blood tests is meaningless if we feel anything but. Doctors seem to believe that if the result is somehwere in the range (even bottom) we're on sufficient hormone replacement. This is not the case we have to have a TSH of 1 or lower with FT4 and FT3 in the upper part of the ranges.

Always get a print-out of your results with the ranges for your own records and post if you have a query. Ranges are important as labs differ and it makes it easier to respond.