How come that your face is swollen when you have hashimoto's disease?

[jeffbursens]

Dear Hashimoto-survivors,

I'm asking myself this question for a long time but couldn't figure this out yet.
How come that your face/cheeks/eyes/hands is swollen/puffy when you have hashimoto's disease?
I'm sure it has something to do with to overall functions/metabolism of the patient and the fact that everything is
slowing down but there must be a better explanation...

Thank you so much in advance and I'm looking forward to your replies,
Jeffrey Bursens (a hashimoto victim since severall months)

[Barb135]

I think you're trying to combine the information from too many websites, including this one. If you don't know what you're doing or understand what you're reading, you can do yourself much more damage than good.  I tell you this for your own good, because I'm concerned about you.

Yes, your ferritin is low and iron is necessary for the synthesis of thyroid hormones, however, this is not in connection with your adrenals.   You should ask your doctor about supplementing iron. Liquid is usually best, because it's usually better absorbed.  Make sure you get a brand that says it doesn't cause constipation.

I doubt seriously that your doctor will have the 24 hr saliva test.  Here in the U.S. we have to order it online, because many/most doctors don't even believe in it.

Again, in the U.S. the adaptogens, I mentioned, usually don't come from our doctors, unless the doctor is a naturopath; they come from the health food store.

I do not think you should stop taking all thyroid medication, as you can't live without it and because I believe your biggest problem is not having enough.  

You must discuss all this with your doctor or find another doctor, with whom you can discuss it and who you trust enough to follow his orders.  
You should take all your blood tests in to your doctor and get a very thorough explanation of every one of them.  You could even print out this thread and ask questions based on what you've been told here, as well.  That way you could clear up any confusion you have, you and your doctor would be on the same page and you could get the treatment you need.

[jeffbursens]

I'll get the 24h test and the other test you mentioned. If my doctor won't give them, I'll go to a hospital and find, once agin, a new doctor.

I just discovered on my blood test from 3 weeks ago that I have indeed low iron levels to!
Ferritine = (-) 42 ug/L                  50 - 240
I'll ask my doctor why he just didn't mentioned that and if I can have some iron supplementation to bring the levels up.
I just can't think tis is a coincidence.

Barb, I'm pretty sure I am hurting my adrenals right now.
I have sunken eyes, I'm dizzy and I just feel that something's not right.
I'll ask my doctor for the supplement you recommended.

As if today, I'm gonna take the t4-med only because, for now, I lost faith in Armour. There are several sources that confirm that you can't tolerate NDT due to low cortisol and/or low iron levels. I'll ask for Cytomel later when I see my doctor...

Would you think it would be wise to completely stop all thyroid medication and focus on my adrenals first?

[Barb135]

I've been doing some further research and I really think you need the 24 hr saliva test and I also think you need an ACTH test and DHEAS.

I'm more on thyroid than adrenals, so I've been doing some research.  I did figure out that your 2 cortisol tests are Free and Total (the one says Free), but I can't find anything that shows results like yours.  Your Total cortisol is high and your Free Cortisol is low... from what I'm reading, with adrenal fatigue, it should be the other way around.  I'm getting hooked on this now, so I'm going to keep researching.

"They are claiming that when 'natural desiccated thyroid ' like Armour does not work or makes you feel worse, it can reveal two problems: or low iron or adrenal insufficiency. Both of those problems can appear when one has poorly been treated with T4-meds only like myself... I'm not saying I have low iron, (although I actually don't know yet) I'm guessing it's my adrenal insufficiency.
Wouldn't you agree to this information at all ?"

Desiccated hormones don't work for everyone, so no, I can't agree with what they're saying.  

The only "poor treatment" you had with T4 med was that it was a bit too high.. i.e  your T4 dose probably should have been lowered and a T3 component added, since, as I recall, your FT4 was quite high and your FT3 was quite low.  

The other thing is that you don't know if you have low iron... you have to have the proper tests done in order to jump on a bandwagon, such as that presented, by the other website.

"My doctor told me face to face I have adrenal fatigue but I will do a 24 hr saliva test. I don't know what it is but I'm sure I'll have it somewhere."  If he thinks you have adrenal fatigue, then what does he propose to do about it?  Just the OTC supplements made from ground up animal adrenals?  I'd rather see you take an adaptogen supplement.  I think that would do you more good, but of course, I'm not a doctor and he's already told you what to take.

"I am justing trying to figure out why I am so bad and swollen up right now.
Since I've been on Armour I am much more swollen then I was on t4-only meds. At least I had my ups on T4-only!"

In my opinion you are more swollen now than you were on the T4 med, because your FT levels are much lower than they were then.  As I told you, we've seen many people who do not do well on the XR type meds, for some reason - maybe they aren't absorbed as well, I don't know... Ask your doctor for plain Armour that's not XR "and" ask for an increase in dosage to get your levels up where they need to be OR ask to go back on the levo with added T3.

Look at it this way... 30 mg of Armour contains 19 mcg of T4 and 4.5 mcg T3.  You were previously on 75 mcg of T4 and only needed a bit of T3 to bump up your FT3 level a bit.  

I don't think your doctor did you any favors by putting you on the Armour XR at such a low dose.  If you can get regular Armour and increase to a reasonable dose and take it multiple times (2) per day, you'll probably be okay, otherwise I'd recommend going back to the T4, with added T3.

It seems that you're trying to make this more complicated than it really has to be... but of course, I'm not a doctor.

[jeffbursens]

I've been taking t4-only meds for 6 months and I never felt good.
I never felt better and it seemed to do absolutely nothing for me.

The t3 you are seeing (45%) is when I didn't took the Armour yet.
So, why would it be higher than the first tests I've shown you.
I've never had cytomel and I've been on Armour for 3 weeks now.
I'm talking about whats happening now. I don't know what my blood tests
will be in a couple of weeks...

I'm sorry I did not answer your question earlier. Yes, the tests were from the same blood draw. I had to collect urine over a 24h period and that's all I know. I can't read my blood work because I'm obviously not a doctor. My blood test was taken in the morning.

Barb, I'm not sure whether I have to have confidence in that website neither.
All I'm saying is that it brought me a lot of information and hope and many articles are making sense in my situation right now. They are claiming that when 'natural desiccated thyroid ' like Armour does not work or makes you feel worse, it can reveal two problems: or low iron or adrenal insufficiency. Both of those problems can appear when one has poorly been treated with T4-meds only like myself... I'm not saying I have low iron, (although I actually don't know yet) I'm guessing it's my adrenal insufficiency.
Wouldn't you agree to this information at all ?

My doctor told me face to face I have adrenal fatigue but I will do a 24 hr saliva test. I don't know what it is but I'm sure I'll have it somewhere.

I am justing trying to figure out why I am so bad and swollen up right now.
Since I've been on Armour I am much more swollen then I was on t4-only meds. At least I had my ups on T4-only!

What a story and all I might need is someone who really really get's my endocrine system...

[Barb135]

The website you're trying to link is a competitor of MH and is forbidden on this site, which is why it won't let you link it.  I don't have a lot of confidence there anyway.

The first thing I see, though when I go to the second site you have is that they say T3 is high and yours is not... it's only at 45% of the range, so it's not speeding up your body that much.  It's even decreased since the first tests you posted.

The other site is discussing iron, low stomach acid, etc.  

I'm not saying that you don't have an adrenal issue; I'm just saying that hasn't been proven yet.  Your adrenal tests haven't been explained yet... i.e.  that one that's high in the range and the other that's below range.  You didn't answer my question about whether they were tested from the same blood draw.

Have you ever tried T4 only med?

Is there any way you can get a 24 hr saliva test for cortisol?  Blood tests are not accurate and a single cortisol test is nearly useless.

[Barb135]

Typically, if you have true adrenal issues, those should be resolved prior to beginning thyroid medication, but many times, that's not possible, because people have to have thyroid hormones.  

Your cortisol levels are somewhat confusing, because one of them was 20.1 with a reference range of 7-25 and the other was 9.8 with a range of 10-30.  The one was very high in its range and the other is very low in its range.  I've never seen cortisol tested that way.  What time of the day were those tests done and were they from the same blood draw?

I'm still trying to research some of your blood work.

I'm not sure where you're reading your information about T3, cortisol, iron and blood sugar... that's not the way it works; cortisol and iron are not connected to the blood sugar in that manner.  Iron is necessary for the production thyroid hormones.  When the thyroid fails, the adrenals kick in to take up the slack; they really have nothing to do with whether the T3 gets into the cells or not and neither does blood sugar.  Blood sugar is controlled by insulin, which is produced by the pancreas, not the adrenals.

A therapeutic dose is one that alleviates your symptoms, regardless of what your blood test results are.  While we need blood work as guides to help us along the way, the ultimate goal is to alleviate symptoms and in order to do that we have to have enough medication.  Simply getting lab results into the "normal" range is not good enough.  Even our "rule of thumb" is not good enough - that's just what it is - rule of thumb is just something to shoot for until we find our own "sweet spot" - that spot where we feel best (neither hypo nor hyper), regardless of whether we meet the rule of thumb or our labs are what the doctor thinks they should be --- that's our therapeutic dose.  Unfortunately, many of us never really get there, because doctors are so centered on the labs and once those are "in range", they are unwilling to continue increasing meds to alleviate symptoms.

Your face could be puffy because of the adrenal issue or because of the thyroid.  Since your cortisol levels are not very high, I'd be more inclined to say it's thyroid related, but that's just me.  

If you like, you can go to my home page and look at my photos... there's one that's labeled 2007 Pre-hypo Diagnosis and you can see how puffy my face was - looks like my cheek bones are stuffed with round balls and my skin was very shiny, indicating how swollen it was. Compare that photo to the one labeled 1/9/2013, when I'd been on med for 6 yrs.