Under-active thyroid symptom question - Thyroid UK

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Under-active thyroid symptom question

Lady333 profile image
24 Replies

hi, this is my first post. I am from the US and was diagnosed with hypothyroidism 13 years ago. It was stable for a long time but after two pregnancies and it not being managed at all it’s gone nuts lately. I don’t understand the NHS process whatsoever. Calling and advocating for myself at the GP (which is the general advice for my issue) gives me high anxiety, which then leads to depression as I don’t think anyone will actually help me. I have ordered a full thyroid blood test thanks to a link someone on this site posted which I am grateful for, but it can’t be done for another week. I will post my results as soon as possible.

Sorry for the long background, but the symptom is that I have started turning my bed sheets blue. Like a dark grayish blue, only on my side of the bed. My clothes are fine, toilet seat fine (googled this happens to pregnant women sometimes due to hormones- I’m def not pregnant) just bed sheets. This has never happened before this year. Is this my thyroid? It makes me feel dirty even when I’ve showered. It is 100% not my clothes. The blue stain does not come out in the wash. Just checking if I need to add a symptom to my list to get checked out, or if this is some fresh new hell to give me more anxiety. Thank you 🙏

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Lady333
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24 Replies
SmallBlueThing profile image
SmallBlueThing

Have you tried having something under the sheet, to isolate you more from the mattress, in case it's due to dye from that?

Here's a link which may explain what's going on (also check the differential diagnosis links):

dermnetnz.org/topics/pseudo...

helvella profile image
helvellaAdministrator in reply toSmallBlueThing

That is a good suggestion. And I emphasise looking at the differential diagnoses.

Hi, Perhaps it’s a chemical reaction from the mattress under the sheet or from the washing detergent. You could try as SmallBlueThing suggests and using natural soap flakes. Sorry, I have no knowledge of this in relation to thyroid issues. I assume if was coming from your sweat a white undershirt would show it also.

Lulu2607 profile image
Lulu2607

Hi Lady333. It's an odd thing isn't it? The fact that the colour does not wash out suggests it's dye? I agree with Hidden that it is possibly dye from the mattress. Can you check this? Have you tried sleeping on top of something else for example or putting something between the mattress and the sheet to provide another layer? Are you having night sweats? The fact you don't see the colour on anything else supports this idea. When you say clothes do you mean nightclothes? If so, maybe your sheets are 100% cotton and more absorbant than your nightclothes which aren't .? I think it's unlikely you are giving off a blue dye from your body but I can understand your anxiety which is making things worse. If you've just moved to UK from US, particularly with young children then that's a major adjustment and trying to deal with our different health systems is also contributing to your anxiety. I hope you get your thyroid meds sorted out, you may need an adjustment to your dosage and if you've just relocated to UK you may need some support for the anxiety that's created if you think that's appropriate too. There are many people on this forum who are knowledgeable about thyroid issues ( more than me) and if you're struggling with the GP as many of us do, they are a good place to provide advice when you get your blood test results. Take care.

Shadelings profile image
Shadelings in reply toLulu2607

My psychiatrist forced my GP to deal with my thyroid problem, the GP wanted to wait an extra 6 months to see if it fixed itself (I had had half my thyroid removed a few months before so not likely). GP didn't want to do anything but the psychiatrist said he couldn't treat me properly with my thyroid hormones all over the place so I think your suggestion for help with anxiety is an excellent one.

mstp profile image
mstp

Lady333 so sorry to hear you are feeling poorly. I think you should talk to your GP along the lines of 'since the birth of my little one I am feeling really under medicated / not quite right thyroidwise. My symptoms include bla bla (think carefully before you go about you symptoms) and I may be having night sweats.' He will know that childbirth can alter your thyroid status and it will give him something to go on. Do it quickly. I went years without being diagnosed when my little one was born and we all went thro hell.Good luck.

Lady333 profile image
Lady333

Thank you all for the kind responses and suggestions. This happened at my parents home as well when we visited, so not just my sheets/mattress- it’s very embarrassing. My husband uses the same detergent and we share a bed, but as you can see, his side of the bed is completely fine. I have always rotated nightshirts that are multiple different colors, but the stain is only blue. & yes, nothing on my shirts ever, even white shirts when I do sweat during the day. Perhaps I do have night sweats & don’t realize, and my sweat is reacting with the detergent to cause the blue color? Though we already use non-bio detergent. I will look into natural soap flakes, check out the differential diagnoses link, and call the GP. Thank you 🙏

helvella profile image
helvellaAdministrator in reply toLady333

I'm sorry you are going through this.

But I think it might be the first brand-new, never before discussed, thyroid symptom in a very long time. (Assuming that is what it proves to be.)

It could be of considerable interest and help to others in future. Thanks for posting.

j9j8j7 profile image
j9j8j7

I don't know about the blue staining, but I know I had horrible night sweats for years after having both my children. They woke me up, but I am a poor sleeper so it's certainly possible you may be having night sweats without realising it. Are any of your night clothes black? Sometimes black bleeds unexpected colours. That said, the fact that pregnant women sometimes turn toilet seats blue means there's likely a hormonal link and we all know pregnancy (and the years after pregnancy) does crazy things to your hormones.

But, I would be careful adding it to a list of symptoms of hypothyroidism with your GP- not because it might not be related but since it isn't a typical symptom they might get distracted and not take appropriate steps to getting your hypothyroidism treated. And it definitely needs to be treated (this coming from someone else who had relatively stable hypothyroidism for years before 2 children messed it all up again...)

HowNowWhatNow profile image
HowNowWhatNow

I googled and found chromhidrosis and pseudochromhidrosis - sharing in case either is helpful

HowNowWhatNow profile image
HowNowWhatNow in reply toHowNowWhatNow

Also - eccrine CH

cdn.ymaws.com/www.aocd.org/...

dtate2016 profile image
dtate2016

A couple ideas, for what it's worth / food for thought type ideas: Pregnancy / recent pregnancies could be at least part of the reason for the blue sweat (it almost has to be sweat): pubmed.ncbi.nlm.nih.gov/271... - other pubmed articles mention it happens most often in puberty. It's not a small stretch from puberty to pregnancy to connect the dots to hormonal imbalances. (although pubmed also points to bacterial causes / antibiotics for treatment). But if it is hormonal, the thyroid also being hormonal, could we stretch the idea / dots to say they may also be related? If hormones are balanced then both the blue sweat and the thyroid may get better. There is one school of thought out there that supports the idea that estrogen dominance is a cause of hypothyroidism. From my own personal experience I believe that idea has some merit. Why else do so many more women than men have Hashimoto's / hypothyroidism? Why do so many women come to have the affliction after pregnancy? Again, these are thoughts - if it was me, I would go researching down this road turning over rocks. There are also scientific papers / research that points to blue sweat in children (all them noting how rare this is) and seem to want to lay it off on stress. Could be. I'm always suspicious fo theories that point to "stress" as the cause of any physical ailment. It wasn't that long ago that stomach ulcers were blamed upon stress - and then pylori bacteria were found to be cause of a great majority of stomach ulcers, cured by a regimen of bismouth and antibiotics (which had been used to cure pigs for since the 1950's)

Second idea: long, long shot. it could be related to the blue urine maladies sometimes called Familial benign hypercalcemia. It is understood that this is not a urine thing, but a sweat thing, and yet the two cold be related. Hypercalcemia causing the urine to turn blue is a rare inherited type condition for the most part, or so the medical community tells. Hypercalcemia can also occur / be related to the parathyroid. (This happened to me once - not resulting in blue urine / sweat, but in thyroid storms). The cause? I was embarking upon a pro-vitamin health venture, and taking way too much calcium. At the time I had not been diagnosed with Hashimoto's. (I had it, just did not know it) I know this now. Back to the long shot idea....the thyroid regulates many things hormonal (Calcium / Vit D can sometimes behave like hormones / affect regulation of other hormones). Urine and sweat are two avenues of detoxing / the body's way of natural elimination. Is it related to hypothyroidism? I think it's a fair question to ask the Dr. (and then get ready for that to be dismissed!) You are on the right road to relate this to pregnancy - even though you are not pregnant. It takes a while for the whole pregnancy hormonal thing to balance out.

More than anything else, you most likely will have to figure this out on your own. After you get the results on your tests, and the diagnosis, be prepared to have to be your own advocate. Start with the thyroid (assuming you do receive a hypothyroid diagnosis), and go from there. Most likely, when the thyroid gets better, you will find these other things get better too. Depression goes hand in hand with a less than optimal functioning thyroid. And, get ready for the Dr.s that try and tell you that the depression is the source of all of your troubles. (I'm only mildly exaggerating) - I wish it wasn't so.

The good news is that the thyroid can be healed. The medicines help - diet protocols helps, but most of all listening to and trusting your own body will help you find your way back to health. It is an annoying disease that can debilitate, and is not well understood by main stream medical. As a new young mother, you no doubt, will not want to deal with one more thing - especially if you are also a working mother. Stay tuned here, many knowledgeable people. There is no one size fits all cure. There are a lot of alternative medicine type Drs and naturapaths that can help you get started. With more than a little determination, you will get there.

Lady333 profile image
Lady333

Thank you all again for your responses, a lot to think about. I’ve been speaking to my husband and I do actually have dark colored pajama shirts that I sleep in that COULD be the culprit along with night sweats…. Still thinking unlikely as they have all been washed many many times with no dye issues on anything else over the years. We have rotated our sheets and I am sleeping in light colored shirts to see what happens. I am also due my cycle soon, and in my mind this seems to be the common denominator on when I turn the sheets blue, pointing to the hormones suggestion being a plausible reason. My children are 18mo and 3, so I haven’t really been pregnant recently, and I only noticed this happening this past March. Ultimately while this is annoying and really confusing, it is thankfully not physically affecting me in any other way day to day as it isn’t every night (clean sheets this morning 🎉.)

Getting my thyroid checked is my priority so I might leave these “blue episodes” off the symptom list temporarily (the list is long enough as it is.) One more week until my blood work appointment and I will hopefully know more soon and what the next steps to take are. I’ve been really short of breath this week, struggling to take a deep breath even though I’m desperate to, I think this must be anxiety, even though rationally I don’t have anything that I am consciously anxious about. Is this something you all experience as well? It’s so frustrating to feel all wrong but still look (overall) normal outwardly and not have anyone realize how awful you actually feel all the time.

Thanks again for all the help, will definitely update.

Lulu2607 profile image
Lulu2607

Hi Lady333. I hope you get some answers and feel better soon. With two very young children and your health worries it must be exhausting you. The anxiety is understandable and may be contributing to your breathing issues. Take some time out for rest when you can and maybe try some slow controlled breathing for several minutes.

Hormones are responsible for triggering and contributing to so many issues within the body. The upsurge in hormones from being pregnant and giving birth may have triggered or exacerbated an issue with your thyroid. See what the blood tests show up. I hope you feel better soon.

Lady333 profile image
Lady333

I am finally getting my blood work done tomorrow, hopefully some answers are just around the corner!

The appointment is at 930, it doesn’t say I should fast, but can I drink coffee? This is the earliest time I could get the appointment and I want the most accurate results. I googled but the results are mixed, what do you knowledgeable people recommend?

Shadelings profile image
Shadelings

I would definitely consider getting a full blood count when you get your blood test because this was the first thing that came to mind when I saw your picture

Gold - anaemia
Lady333 profile image
Lady333

Hello again everyone, thank you for the kind replies. Just wanted to give an update.

I am still turning the sheets blue, it has even gone through the sheet to the mattress. My blood tests came back with hypothyroidism/Hashimoto’s and they increased my dose to 125mg/day. After 2 months on this dose I had another test done & my levels have increased from 5.9 to 8.4 which is the opposite of what should have happened. My GP said I must not be absorbing the levothyroxine, but then increased my dose to 150mg/day (what I was taking daily before pregnancy- back when I felt human) & told me to test again in 3 months. Shouldn’t I be tested sooner to see if I am absorbing it? Otherwise wouldn’t the increase be pointless?

I have absolutely ballooned in weight. Almost 2 stone gained since August with nothing changed in my diet (maybe slightly more over Christmas, but even then I didn’t go overboard & barely even had a drink.) I am so uncomfortable in my clothes and body and my hair is still falling out. My anxiety and depression have felt slightly better, whether that is taking the vitamin D recommended or something else I am not sure, but I don’t feel as hopeless as I did my last post. The weight, hair, & blue sheets are frustrating, but she said my iron levels & b12 are within normal range. I did not mention the blue sheets yet, but am tempted to do a private hormone level test to see if I need replacement therapy?

Thank you to anyone who read to the end, any and all advice is really appreciated. I’ve just been trying to stay afloat with household requirements, childcare, dog care, and existing whilst having no energy but I do read everything and look into when I have the chance. Now that the holidays are over and nursery has started back, my health is my main focus. Thank you again.

in reply toLady333

Hello!

Don't be fobbed off with 'in the normal range'. You need to ask them for a print out of all your results, including the range.

Ferritin ranges are often 13 - 150, yet a ferritin below 30 indicates deficiency so with a ferritin on 13 you're in range but it's not good enough.

Lady333 profile image
Lady333 in reply to

Thank you, I will ask for the results!

Lulu2607 profile image
Lulu2607

I was told check in three months when my levo dose was recently changed which I also thought odd as it was check in six to eight weeks previously. Maybe another cost saving exercise for the NHS?

Lady333 profile image
Lady333 in reply toLulu2607

I hope not, if so I’m not impressed. I may just have to pay for another private test.

tattybogle profile image
tattybogle in reply toLulu2607

technically the (UK NHS) N.I.C.E guidelines do tell GP's to "retest after 3 months" following dose change . the bit about '6-8 weeks' is written in other places. possibly in the 'small print' of NHS stuff or in other recommendations .. can't remember where exactly .

So it's not likely to be cost saving . more likely whoever said it just looked it up, and that is what they saw in the NHS guideline.

Different GP's will have different opinions on how long to wait . and in some cases that opinion will depends on why the dose was altered,

Lady333 profile image
Lady333 in reply totattybogle

I can see how that makes sense too. In the US I was tested monthly after a dose change until we knew it was working or not. If she thinks I’m not absorbing the hormone after 2 months, then even with a slightly increased dose I can only imagine how much weight I can gain in 3 months, & how much worse I could feel, only to potentially be told the same? Seems counterproductive to me.

tattybogle profile image
tattybogle in reply toLady333

if they are well informed / experienced they ought to be prepared to be flexible about timings ,, (and to explain why):

eg. at the beginning of treatment when trying to titrate dose to something like the right dose , and when fT4 / TSH are still quite a way off target , they need to 'get on with it' .. at that time i reckon 6-8 weeks is plenty long enough to assess fT4 / TSH and increase dose if needed.

But once the dose is 'something like right' and TSH / fT4 are looking fairly optimal , then it does make sense to allow much longer ie 3 - 6 months to see if remaining symptoms will continue to slowly improve.

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