Years ago I was diagnosed with secondary hypothyroidism. I tried synthroid and had a horrible swelling reaction..even though my case is not autoimmune..my body adjusted over the months when I added iodine. THEN.... I was off thyroid meds after being on a HUGE amount of 180 of armour a year and a half ago. I lost most of my hair and have continued to lose it since I was put back on armour last November. After trying synthroid again had a horrible swelling reaction. Then tried armour...swelling as well. I was able to tolerate these meds in the past but not now. I was put BACK on 30 mcg of armour and my body adjusted without incident. Not sure why but recently my doc upped the dose to 45 mcg because of my hypo symptoms. Long story short the facial swelling and hypo symptoms got much worse after 1 week. I had no swelling on the 30 so I cut my dose two days ago and my swelling has gotten so much worse. I do take adrenal supplements to help but I am at my wits end. No answers as to what could be causing this swelling. My doc still wants me on 45. Any help would be greatly appreciated!!!! Sorry so long. All of my other labs are within normal range. One endo said I had non thyroidal illness and the other said secondary hypo. No matter what dose I am on my T4 level is always borderline. I can deal with all the other symptoms just not facial swelling....
Baffled and swollen again;( Any ideas why?? - Thyroid UK
Baffled and swollen again;( Any ideas why??
2 thoughts.
180mg of Armour isn't a huge dose. It's 3 grains, a fairly standard dose for someone who needs a replacement dose of thyroid hormones.
Lots of folk find they react to the fillers in levothyroxine tablets, often to acacia powder but sometimes it's lactose intolerance.
Has anyone suggested trying Liothyronine (T3) on its own?
I did try that years ago in addition to the synthroid and it helped but since my T3 is within range the docs only want to go with a T4 or combo;( I am sooo sensitive to these meds. I wasn't aware it has acacia powder. Thanks for that info. I took another supplement before with that acacia but was okay. I don't know whether to keep on the 30 since I feel so much worse or go back to 45...seems like this swelling is worse every day;(
It's just that 30mg is such a titchy dose it can't really be doing very much at all - it's half a grain.
Really feel for you - it's so difficult when it feels like your body's working against you, isn't it?
Do you have some blood test results to share? Blood test results in normal range often aren't normal at all.
TOS, I was going to suggest the same thing. It could be that you can't tolerate the T4. I was the same. I was bad on Levo, and even worse on Armour and other NDTs. I'm fine on T3 only - and no way would I go back to any form of T4!
You say your FT3 is 'in range', but where 'in-range'? That's the most important thing. And you say your doctors Don't want you to take T3 because of that? Do they not know that there is T3 in Armour?
If your FT3 is at the bottom of the range, then there's no harm in you trying T3 only, no harm at all. But it would be good to see your last labs to know exactly where you are. 
Thank you yes is has been a nightmare. My most recent ones before I had the dose increase were
TSH 1.5
Free T4 0.8
Free T3 2.3
I'm 95 pounds and have been on adrenal supplements but can't figure out why I get this swelling when adjusting meds. I went from 45 back to 30 and feel like a blowfish. Never have had this amount of hair loss either.. to the point of finding a solution or a wig.. My primary care doctor who made the change is confused and my endo is mad that I went to 45mcg even though I had so many hypo symptoms so he wont treat me now;/ I have no idea what to do. Have tried adding B12, my D is in range. Just beyond confused.
Ok. It would help lots to have the lab reference ranges for the blood tests as they vary a lot - do you have those too?
My instinct is that you are considerably under medicated. Most on thyroid replacement need their TSH to be below 1.0 to feel well, but in addition, those who take T3 tend to have much lower TSHs, which isn't dangerous so long as FT3 and FT4 aren't overrange (and even then, it might still be ok depending on the circumstances).
But with hairloss, it's likely you're ferritin deficient. Have you had ferritin tested recently? Ever been recommended to take iron supplements?
I dont have the ranges but know they said 0.8 was the cutoff so technically it was within range but borderline low. My total T4 last time I checked was 4.2 and the low ref range on that is 4.5 for a low.
Your FT4 is going to be low when taking any form of T3. The body doesn't need it, so doesn't hang on to much. Forget the total T4, that's a pretty useless test.
When you are taking any form of T3, the most important test is the FT3. And yours looks pretty low.
Before the blood tests were invented, unexplained swelling with a clinical symptom, sometimes appearing before other symptoms developed.
These results FT4 and FT3 (even without the ranges) sound low for you to feel anything but unwell.
Thank you so much. I have lost more than half of my hair in a year. I have had my ferritin tested and it was at 80. They said that was normal. I think I might be under medicated too but my heart is so sensitive to dose increases. I don't recognize myself in the mirror plus have had horrible cystic acne with this and my other hormone levels from my OGYN are all "within range"...just praying something will take this swelling away..the hair loss alone has been bad enough. I really appreciate you help. Have felt so alone with this and beyond frustrated. I don't even want to leave the house.
Your ferritin could be higher. If should be at least mid-range, but not having the ranges, it's difficult to tell. For the future, always insist on having the ranges with your results. They're pretty meaningless without the ranges - we have to guess at how good they are. Doctors will tell you anything that suits them. So, insist on having all the numbers.
And for the vit d, too. Just 'in-range' isn't good enough, you need to know exactly where it was in the range. That, too, needs to be at least mid-range.
Are you taking any suppléments at the moment? Just adding the odd thing here and there, without knowing if you need it, and how much you need, is not going to help. One has to be a bit more 'scientific' about it. lol
Hello TOS,
Welcome to our forum and sorry to hear of your health problems.
There are many reasons why thyroid meds don't work but I think you are switching around too quickly and sound undermedicated.
Low cortisol, iron, B12 & folate, & Vit D will all interfere with meds working properly. Tired compromised adrenals may be low on cortisol after propping up a failing thyroid. Cortisol levels must be sufficient for someone to tolerate thyroid hormone as may interfere with the HPA axis which in turn suppresses thyroid function and weakens the immune system. Cortisol is required to receive T3 from blood into cells where it is active (giving you energy). That is why people with high or low cortisol (poor adrenal health) often have T4 to T3 conversion problems.
Iron is one of the key nutrients required for conversion of T4 (inactive thyroid hormone produced by the thyroid) to T3 (active thyroid), and iron deficiency increases the body’s tendency to produce more of the inactive reverse T3, rather than the active T3 hormone.
Low iron would also account for hair loss as your hair follicles actually store ferritin and when your body is short, it will steal ferritin from less essential parts of the body, such as the hair follicle.
Deficiencies in all these are common in people with thyroid issues as low thyroid hormones can cause gut issues and so malabsorbtion of nutrients ( and also thyroid hormone.)
Gut issues such as gluten intolerance need to be addressed, as do problems such as candida or H.pylori.
Eating a healthy diet and balancing blood sugar levels will help T4-T3 conversion.
Estrogen, calcium and iron bind to thyroid hormones making them unusable so take sups four hours away from meds.
If you have conversion issues you may have a high RT3 that would stop further T3 from converting. Taking less T4 and more T3 will help eliminate RT3 from the body and encourage T4 to convert.
Swelling caused by insufficient thyroid hormone is called Edema and should improve once meds are more readily accepted by your body.
Flower
This following link explains the importance of vitamins and where they may be obtained. This forum is supported by the charity ThyroidUK. You do not have to join the charity to benefit from this forum but by doing so you will be supporting the charity and also entitled to various discounts when buying supplements, as detailed in the link below.
thyroiduk.org.uk/tuk/treatm...
Why meds dont work
stopthethyroidmadness.com/m...
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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
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I appreciate you describing this in detail. This has been such a rough road especially with such extreme reactions to any thyroid medications or the slightest dose changes...makes sense as to why considering my adrenal glands are shot as one doctor told me years ago. I suspected the RT3 and adrenals might be the culprit. Thank you so much for taking the time to help me with this situation. Needed some hope tonight. I appreciate it more than you know.
TOS,
You are welcome.
If I were you the first thing I would do is to get all nutrients & iron checked and possibly a saliva stress test to see what cortisol levels are like.
Flower
Try Nature-Throid or Westthroid both are hypoallergenic so may work well for you if you're having a reaction to fillers/binders in other NDT's.
I'm sorry you are having severe problems.
My face swells terrible some days I look unrecognisable. I've just been diagnosed with hashis, but not on any meds. I feel for you, it makes you feel ill as well
Hi Tired, it IS a massive puzzle when it comes to thyroid issues because it often has little to do with the thyroid per se. Other hormones can have a huge impact in causing changes in the gland. Antibodies can be created after portions of the gland or the output are destroyed usually due to leaky gut. Low iron levels will interfere with allowing FT3 to work at the cellular level. Obviously you are still searching for which one or more of these is the culprit and unfortunately the medical profession doesn't go far enough. Many of us are here for the very same reason.
This short video is by a functional medicine doctor. These doctors are detectives. The first video talks about serotonin and he has many others covering cortisol/adrenal, neurotransmitters like dopamine, low iron, cytokines causing inflammation, etc. ALL depending on or affecting your metabolic status. If you care to watch all of his 24 videos in his Hidden Reason for Low Thyroid Series, go to you tube. There is an icon in the bottom right corner.
Thank you so much. Yeah when i increased the dose the swelling went down a little but was still there and along with cystic acne and last night heart palpitations. I don't know what could possibly cause palpitations with hypo. Yeah this is really a nightmare. Hoping things improve soon because I am dreading leaving the house even to get labs;( Thank you so much for the help and suggestions. It just keeps getting worse. This is beyond frustrating.
TOS,
You can experience heart palpitations with low thyroid hormone levels as well as high.
Flo
I am secondary hypothyroid and am very interested in this "swelling" reaction.
Do you mean facial oedema? This is where your face will swell particularly around the lower jaw and eyes.
If so.....it is NOT the medication. This is a symptom of hypothyroidism.
when you first go onto meds your symptoms WILL get worse. They will also get worse when you raise. This is TEMPORARY and will only last a few weeks.
You sound very under medicated.
My face is still swollen on 100mcgs of T4 and 10 T3 BUT I am still undermedicated. It will eventually go as I raise to my final dose. Have faith.x
out of balance hormones, low estrogen high testosterone, which causes dht causes hair loss . so test for dht and or hormones helpful
low normal ferritin
low omega 3 ...take turmeric and omega 3 for inflammation
you can eat eggs for iodine and amino acids...I eat 3 every morning...eggs good for hair, make sure you eating enough protein and may need digestive enzymes
make sure you aren't taking meds near dosage of thyroid meds or food
ask for a copy of your labs for your personal records and post and it will be a lot easier to see what is going on....
It makes sense if I am on too low of a dose considering how much hair I have lost. I just thought since my levels were borderline that everything was okay but the symptoms just started getting worse. I also would get tested right after I took the armour so probably not the best idea. I think I'll just try to up the dose slowly and keep on the adrenal supplements as well. I did well with extra iodine so going to take that advice too. I seemed to do best on 120 of armour and 30 is far from 120. I don't feel as alone in this with all the help. I appreciate it more than I can put into words.
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