Burning Sensation all over. No thyroid. Help.

[MinscAndBoo]

THEN:

Childhood leukemia survivor - rare Acute Monocytic Leukemia (2 years old, now 39),

Treatment: Extreme spinal/cranial radiation (52GY) & Chemotherapy

Enrolled in human growth hormone program

NOW:

Chemotherapy drug - Daunorubicin (overdose) induced dilated cardiomyopathy

Hypothyroidism (Thyroid removed)

Insulin dependent type 2 diabetes (I know, crazy right?)

Defibrillator

QUESTION:

Does anyone here suffer from extreme burning all over their bodies from hypo or hyperthyroidism?

NOTES:

I ask the above because I have been on 125-150 Synthetic T4 for over 6 years now, and I have always felt terrible and had this horrible 'on fire' feeling 24 hours a day.

Recently I found out that some people can't process t4, not because of an internal problem, but because their stomachs burn out the tablet before it gets to the blood stream.

So I started crushing the tablets and keeping the powder under the tongue and over the gums. This actually worked. The burning sensation dropped significantly after only 2-3minutes (and lasted 2-3hours). I felt invigorated, started thinking clearer and faster. This is totally counter from what I have been told about t4, that it should sit in the system and be used only when needed, that any effects from the drug will happen over a large period of time, not 2-3minutes. Is my body screaming for t3?

It got me thinking, because my pituitary and hypothalamus were irradiated is it possible this has changed the way my body processes t4, as there is no thyroid to regulate the hormone.

Any thoughts would be appreciated, thank you!

[Boohbette17]

Hi my dear, You are a tropper!! As I read your post I kept thinking is the extreme burning a sensation of heat /being hot?? I had that & it was a combo - early menopause & my thyroid under attack. my TPO was very high and at the time thyroglobulin was not tested but I'm sure it was high because recently was tested and it is still high but TPO has come down with lifestyle changes and food modifications so I think BOTH were higher in 2013.

I would love to know the article you learned about the stomach burning out the thyroid med. i've never heard of that and I love learning !

Personally I feel you should investigate getting T3 regardless as you are documented not having a thyroid so they should make it the easiest way on your body for thyroid hormone to be absorbed.

Many hugs 🤗💐

[MinscAndBoo in reply to Boohbette17]

Hi there! thanks for the reply. I'll try to answer as best I can.

The burning sensation is as you suggested - it is like I am in a sauna, but I don't' sweat or have any external signs of being hot, but I FEEL hot. And it is all over. Face, neck, legs arms feet, everywhere. I sit in 19degree (Celcius) air conditioning all day, while my mum freezes her !#% off.

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As for menopause, it is possible for men to get it, and because I have had my endocrine system under attack since i was two years, it could be that too.

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Burning up the tablet, is something I personally discovered. I do seem to be sensitive to a variety of tablets, resulting in a major flare up with 'feeling hot'.

The idea of bypassing my stomach appealed to me greatly.

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When I researched thyroid medication, i found:

verywell.com/sublingual-thy...

suggesting NDT could be crushed and left under the tongue to enhance its effects. This 'apparently' is only for NDT, not the Pills. I take EUTROXSIG pills and tried crushing them just to see if it would help, and it did, significantly, within minutes.

Cheers!

[Boohbette17 in reply to MinscAndBoo]

oh wow! Mary Shomon eh? Figures,she leaves no stone unturned ( yay) I havent been reading as much as Im quite involved in my food /functional medicine protocol group. Its with Dr.Sara Gottfried MD...

Yes!!! Exactly as you describe I felt. Yes, men have a form of menopause too. And guess what all this is about? Hormones! yep, prob something is off . Men can have estrogen dominance too & from exogenous forms add to the imbalance. Dr.Sara is the best! Her hubby is quite involved as well . Right now we are in an aging reset program but they do a hormone detox as well. I suspect greygoose is on to something too.

Now, in the article they make a point about absorption issues ( most of us thyroid folk have it anyway) & we need a strong stomach acid & drinking lemon water daily and often 6-8 glasses , alkanizes the body but helps make the stomach acid stong simultaneously - neat huh?

I do hope you feel better soon. Take a look at fortifying yourself while you pinpoint the exact cause of this heating up. If I find anything extra I'll write more too!! Keep us posted please!!

You can find more on her on YouTube & such . Here is a start. Cheers🌈

saragottfriedmd.com/what-to...

[greygoose]

It could possibly be an allergic reaction to the fillers. Have you tried taking a different brand of T4?

Have you had your B12 tested?

If your body is crying out for T3, your blood test results will tell you. Does your doctor test your FT3? If not, insist that he does. What is your TSH and FT4?

[MinscAndBoo]

I haven't got my blood test results back yet. Will post them up soon.

I managed to get a T3 and Reverse T3 alongside T4 done, so will see soon.

The hot sensation flares up on different types of heart medication but not thyroxine. I've tried two brands and there is no difference I can feel.

But even If I stop all meds for a day, it's still there.