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Hashimoto's and foul body odor?

I have been battling Hashimoto's for 20+ years now. I also have been battling a really foul body odor for many years. It is not a hygiene issue as I can bathe or shower several times a day and I still smell bad. I have tried deodorants, body sprays, you name it, I have tried it. This is so embarrassing because it has affected my work because I have been written up several times over the past few years for "professionalism/hygiene". I have recently been kicked out of several schools ( I am a behavior specialist) due to the foul body odor. I am at my wits end and don't know what else to do. Does anyone else on here have this issue?? Does anyone have information that states that the body odor  and hashimotos or synthroid or levothyroxine are connected??
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649848 tn?1534633700
COMMUNITY LEADER
This isn't an issue I'm familiar with in regards to Hashimoto's, but we can dive into it and see if we can help you.  

Can you describe the odor or give an idea where the odor might be coming from?   For instance, does it resemble a sweaty odor, a vaginal odor, a urinary odor, etc?

I'm assuming you've discussed it with your doctor(s)... have they done any tests to try to find out what it might be?  If so, what tests have they done and what were those results?

What are your current thyroid hormone results, with their reference ranges?  Do you have any other symptoms of hypothyroidism or Hashimoto's?  What's your current dose of thyroid medication and how long have you been on the current dose?
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My most recent TSH results: March 30 2018 9. 46 October 1 2018 .20. (Ranges 0.35 - 4.94 uIU/mL) FT4 : March 30 2018 .88  October 1 2018 1.55 (0.70 - 1.48 ng/dL). I currently do not have health insurance so I have not had it re tested this year. Symptoms that I have had regardless of  what the levels are: fatigue, dry skin, hoarse voice, brain fog, inability to lose weight, weight gain, anxiety, depression, brittle nails, ridges on nails, thinning hair, cold intolerance, etc. The Foul Body Odor is a combo of a very musty, urinary, pungent odor. I do not sweat much except during summer. The smell gets worse during "that time of month" or when I get really stressed out. The only thing my doctor has been willing to do is suggest various things to try. I have tried taking chlorophyll capsules, I have used apple cider vinegar on all areas, I have used baking soda, corn starch, various deodorants and body sprays...I have tried washing all the areas several times a day with baby wipes when Im at work and reapplying deodorant or body sprays, febreeze, etc. Within an hour or so of washing, etc the smell is noticeable again. I hope to get insurance in January, which after I get that back I will be able to go  see a specialist if necessary and get further testing.
My current dose is 150 mcg Synthroid which ive been on since March 2018
649848 tn?1534633700
COMMUNITY LEADER
TSH of 9.46 is definitely too high, but TSH is a poor indicator actual thyroid status since it correlates poorly once we begin treatment of hypothyroidism.  Your Free T4 of 0.88 is also too low.   Free T4 is considered the storage hormone which isn't used directly by individual cells.  It must be converted to Free T3, which is the active thyroid hormone, which is used nearly every cell in the body.  If there isn't enough of the Free T4 converted to Free T3, one will continue to have hypo symptoms.  Many doctors don't test for Free T3 unless specifically encouraged (i.e. we must often demand) to do so.  I once had a doctor who insisted that Free T3 was tested for "research" purposes only... yeah, research on my body!!  :-)

Your latest tests were in March of 2018 and you've been taking your current dose of medication since March of 2018.  Was that dose prescribed in response to low thyroid hormones and/or hypo symptoms?  Since you still have the same symptoms, apparently, the dosage change didn't do a whole lot??   Many of us need to add a source of T3 if T4 only medication such as Synthroid, Levothyroxine, etc isn't adequate.  Sources of T3 include Cytomel, its generic Liothyronine, desiccated hormones (sourced from porcine), such as Armour Thyroid, NP, NatureThroid, etc.

Have you been tested for Vitamin B-12, Vitamin D and/or Ferritin?  I'm guessing since you don't have insurance, you might not have been.  Vitamins B-12 and D are necessary for the proper metabolism of thyroid hormones; iron is necessary for proper conversion of Free T4 to Free T3, plus it's necessary for adequate production of red blood cells (as is B-12).  Red blood cells carry oxygen throughout the body, which gives us energy, etc.  

Hypothyroidism definitely affects the skin, nails and hair as far as dryness, blemishes, etc.  Other B Vitamins can be helpful with this, as can Omega 3 fatty acids, magnesium, etc.   Some of these things may cause odor.  

If the odor gets worse during the time of menstruation, I'd suggest that as something to investigate... hypothyroidism can affect menstruation as well, so that might another thing to address.  Are your periods regular/normal?   Have you had female hormones tested?  The thyroid must work in conjunction with other endocrine systems in order for our bodies to work properly.  These other systems include reproductive, adrenal, pancreatic (controls glucose metabolism and helps control weight), etc.  

Are you, by any chance, diabetic? If so, is your diabetes under control?

So - my first recommendation is to find a doctor that will do complete testing... TSH, Free T4, Free T3 and get your thyroid properly adjusted.  Since you don't have insurance, we can suggest web sites from which you can purchase the tests without a doctor's order (in most states in the U.S.) if you'd choose to do that.  Once you have blood work in hand, many doctors are, then, willing to prescribe medication accordingly.
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1 Comments
The dosage was due to a combo of levels and symptoms. I have been back and forth between 150 and 175 for several years now. When I'm on 175 my heart starts beating irregularly. No I am not diabetic, my sugars have been very low. Every so often I get A1c tested and it's always good. I did have a cbc differential and complete metabolic panel done and those results were all normal according to the doctor with the exception of iron which has been low or borderline low all my life. What you said about ft3 makes alot of sense. I have asked the doctor in the past to put me on a t4/t3 combo but she won't do it. I will also look into the B12 as well. I appreciate your input and suggestions. Thank you
1756321 tn?1547095325
I have unpleasant body odor from not enough vitamin B12. But in your case it sounds to me like you have the genetic condition Trimethylaminuria (TMAU). TMAU has been described as smelling like rotting fish, rotting eggs, garbage or urine. Body odor can be worse during your period or under stress. Check out this youtube video: Trimethylaminuria (fish body odor) story on UK TV.
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3 Comments
Can you get tested for tmau? That seems to make sense, also the B12 I will be looking into. Thanks for your input.
The urine is tested for TMAU.  

Foods to avoid if one has TMAU include:
    cows' milk.
    seafood and shellfish – freshwater fish is fine.
    eggs.
    beans.
    peanuts.
    liver and kidney.
    supplements containing lecithin.

https://www.nhs.uk/conditions/trimethylaminuria/
No worries. :) Yes as Barb mentioned it's a urine test.
Avatar universal
Try deodorants that have no aluminum.  That seems to work better for my daughter.  Her doctor advised her that aluminum based products do not work with Hashimoto’s.. and yes, my daughter’s underarm odor is considerably worse under stress and during menstruation.  
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Avatar universal
Side note: we were equally as frustrated thinking she wasn’t washing well, but that wasn’t the case.  We tried every deodorant and body wash available on the shelf.  One that worked well for a while was called “Native”.  She used the body wash and the deodorant.  
Helpful - 0
Avatar universal
When she is at school and notices she is sweating she uses Pacifica underarm deodorant wipes with no aluminum.  They are 100% vegan as well.  Be sure to make sure your underarms are completely dry before applying any deodorant as well.  That’s very important.  Do not wear your bra more than once, and be sure to neutralize any odors embedded in the fabric of your clothes.   There are pre-treater sprays online just for your laundry.  
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649848 tn?1534633700
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