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)

[jeffbursens]

I just found out that Natural Desiccated Thyroid is absolutely not working for everyone due adrenal issues ( http://www.*************************/ndt-doesnt-work-for-me/ ) and might that just be what I have! Maybe I should go back to levothyroxine combined with cytomel but I'm not sure how my doctor will react. After all, he was so sure of his Armour. He told me that he'll have my blood checkt in two months and review whether I should go up or down.

What I take for my 'adrenal fatigue' is Cytozyme-AD.
( http://www.pureformulas.com/cytozymead-180-tablets-by-biotics-research.html ) It was without prescription. No he never mentioned my testosterone levels. I don't see any bad testosterone levels on my blood work, have you?

I'm reading that due to cortisol or iron deficiency, the t3 in natural desiccated thyroid or t3 only like Cytomel, is not working properly. That if we don’t have enough cortisol to keep adequate levels of blood sugar in our cells, T3 will simply miss the turn into our cells and build higher and higher in the blood, causing hyper-like symptoms or, you will feel nothing from the direct T3 in NDT.

Barb, what do you mean with a therapeutic dose? Do you mean an upgrade of dosage un till my blood work is right in accordance to the rule of thumb ?

Would you even think that after all, although my doctor tells me no, my face is puffy because of my adrenal problem ? It's not 'moonface' as I heard before. I've never used cortisone or prednisone and I don't have cushing's disease because my cortisol levels are substandaard rather than the typical high-cortisol levels that Cushing's is all about.  

[Barb135]

You're right that the T3 works quickly and that "in theory" you should get better more quickly, but I see a couple of issues here.  First off, most of us taking med with a T3 component find that we have to take it in multiple doses each day, rather than all in one dose... For instance, I take 10 mcg generic T3 with my levothyroxine and I take 5 mcg in the morning with my levo, then I take another 5 mcg around noon.  T3 is faster acting, but it's used up quickly, so by taking multiple doses, I keep my level stable throughout the day, rather than getting one but jolt, then having nothing for the rest of the day.   For this reason, it's not going to work taking one pill one day and 2 pills the next... it would work okay that way if it were levo, because that's not fast acting, but with the Armour and the fast acting T3, that just won't cut it... one day you'll have a double dose of T3 and the next, hardly anything.

The second thing is that I agree that the 45 mg would probably be a better dosage for you, considering your current levels.

Next is that we see a lot of issues with the XR meds... for some reason, it seems that people just don't do as well with them.

Last, but not least, the body tend to heal the most important functions first, such as heart rate, metabolism, etc and other functions that aren't quite as important, lag behind.  

I know you're miserable, but you're going to have to find a way to get a therapeutic dose of med.  I think, ultimately, you're going to have to end up on a dosage of somewhere around 90 mg of Armour in order to get well, but of course, your doctor has to agree with that.

So he did put you on the animal adrenal extract...I'm not sure what that, actually, is.  Is that a prescription?  What we buy here is nothing but ground up tissue.  Did he mention the testosterone levels?  Offer to supplement those?  That might go a long way toward helping you feel better.

Have you considered, or do you have the option of, changing doctors to get one who will, at least give you a therapeutic dose of thyroid hormones?

[jeffbursens]

Hey Barb,

Once again, thank you for your time.
I went to a new docter three weeks ago. He did a blood & urine test.
The results are those you saw in my previous comment.
He changed my from Levothyroxine to Armour.

I didn't want to tell you what my doctor said before because your answer
might be a little influenced by the things he said and I want a completely other opinion.

As you confirmed, he said my t3-levels were to low. He just mentioned the t3 part in my urine that was to low and he said that could be an issue. In fact, he said that was exactly my problem and that my swollen face is just because of that. He was pretty sure. Despite that, he did not say anything about the rule of thumb you were talking about. He didn't talk about my free t4 or free t3 at all.

He put me from 75mcg Levo to 30mg Armour XR. He said I needed some source of t3 and that I could find that in desiccated thyroid replacements.
This was 3 weeks ago. A couple of days later I asked him if I could have an upgrade of dosage because I searched for the Levo - Armour equivalent and I looked it up and 30mg Armour Thyroid is only 50mcg Levo. And I took 75mcg Levo. So he answered me that I could switch to taking 45mg (1 and a half pill). I told him that they were capsules so I could not break them in two. His answer was that I could take 1 this day and 2 tomorrow and so on because that would be the same. Now that's what I'm doing for the moment.

I really have some doubts about taking 45mg each day and taking 1 today and 2 tomorrow being the same? I think the body reacts differently. I think 45mg each day is beter. Do you agree?

That all being said, I am so bad. I am so swollen as we speak. Initially I was so happy when I heard the great news that my t3 levels were below what they have to be. I thought I was cured. I was so sure that t3 would work quickly because it’s the active thyroid hormone and I works overnight. I thought my blown up face would disappear slowly but surely but all it does is keep getting bigger. Yes I’m sad.

For the other things that you mentioned like testosteron levels. Yes he said something about adrenal fatigue as well. Also my tetrahydrocortison, tetrahydrocortisol, allo-tetrahydrocortisol and total 17-OH-Sterïods were under the ranges. So he put my on animal adrenal extract which I have to take daily two pills un till it’s empty.

I am, once again, so lost.

Thanks Barb

[Barb135]

Hi there - Welcome back...

I'm sorry to hear that you aren't feeling any better.  What medication/dosage are you on now?  Your levels are actually lower in the ranges than they were previously.  As was noted above, FT4 should be about 50% of the range, which yours is; however, FT3 should be in the upper half to upper third of its range and yours is only at 45% of its range, whereas previously, it was at 60% of the range.  

Your thyroid tests indicate that you could use an additional source of T3, such as cytomel.  So you have that available in your country?

What time were the cortisol tests done?  Are they single blood draws?

Your testosterone levels are both low in the ranges; has your doctor suggested that you supplement?  

Is one of the parameters in the "Endocrinology in urine" section supposed to be T4?  Which one?

It does appear that you have some other issues going on... I need to do a bit more research...

[jeffbursens]

Dear Barb,

I told you that I would be back after some time to review my situation. Here I am. But not yet better. Hypo symptoms are still there, swollen face is still present. I have some new blood tests which I can show you. I also did a 24h urine test. I hope you still have the time and the will to evaluate my hypo-problem.
The units are in dutch (Belgium) and I hope you can read it.


Endocrinology:

TSH = 1.68 mE/L                     0.3 - 4.5
Free T3 = 3.08 pg/mL              2.1 - 4.2
Free T4 =1.25 ng/dL                0.7 - 1.8
Cortisol 8 H = 20.1 µg/dL         7 - 25
Transcortine = (+) 56 mg/L       20 - 50
Free Cortisol (8h) = (-) 9.8 ng/mL    10 - 30
Testosteron = 4211 ng/L           3000 - 10000
Free Testosteron = 184 ng/L    50 - 280
S.H.B.G. = (-) 17 pmol/mL       20 - 55
Pregnenolone = 2.90 µg/L       1.17 - 7.72

Endocrinilogy in urine:
T3 = 0.21 ug/L
T3 = (-) 710 pmol/24u                  800 - 2500

[Red_Star]

The searing eye pain from the light was bad enough symptom of thyroid eye disease. The eye popping thing I was really worried about. I kept checking to make sure my eyes weren't bulging.  Can't imagine how you feel. Terrible symptom.  

I personally don't need additional T3 as I convert T4 to T3 with no problems. But many do need extra T3.  My labs are optimal but unfortunately I have cellular problems so I do need to be hyperthyroid to get rid of all my symptoms. I have figured out at the very least this is to do with inflammatory cytokines at the very least.

I was hyperthyroid for a year and was expecting better results with myxedema but it's better than nothing so can't complain..much. I still wish my nose was thinner. Grrrr.  

So What to do? Make sure at the very least your labwork is optimal!  If you have your thyroid labs results we can see what is going on. :)