Getting sicker and sicker everyday

[PeachyBlossom]

Thought I’d write a quick update of everything that’s going on with me

I feel so depressed I feel like I’m getting worse every single day. I’ve been going though this for 4 months now

So quick recap of what’s going on: I’ve got inflamed red tonsils with pus on the left side (my GP said they are a little swollen but not rlly bad they mostly look red. She also said they look very sore but I don’t feel any pain at all) I’ve also got swelling on both sides of my neck and at the front directly in the middle leading in a straight line from under my jaw to the bottom of my neck. There feels like a big hard ball lump under my jaw in the middle (it feels quite big like maybe golf ball sized) and those are all my main symptoms but I’ve had a few on and off symptoms along the way like: fatigue, muscle pain and weekness, joint pain and weekness, a rash that look like little red acne looking bumps that don’t rlly pop but they itch and they appear on my thighs, chest and arms (mostly upper arms but appear on the bottoms of my arms too occasionally), thin hair that’s falling out more frequently, faster heartbeat and high heart rate (that could be just from anxiety idk but it’s gotten worse recently), inside of cheeks are swollen inside my mouth, tightness on outside of face over cheeks, I haven’t quite got a fever but my GP said that it’s almost a fever and my cheeks look quite red and feel warm, my eyes hurt each time I cry (like they literally sting it’s so painful sometimes I feel like I need to cry and let out my emotions cause of my depression and anxiety but I feel like I can’t cry anymore bc of the pain), swelling behind knees, blocked ears.

And symptoms that have just started today: my tongue feels like it’s touching the uvula (little dangly thing at the back of throat) and my tongue has little red dots on them now. Also my tongue is looking kinda discoloured like idk it’s got a weird coating on top of it now.

I’ve already been on 3 courses of antibiotics. I just finished my third course about 2 and a half weeks ago the antibiotics work about halfway through the packet and my symptoms feel a lot better for a few weeks after i finish the dosage but then it slowly starts to come back again. I’ve only started feeling worse again in the last 2 days. Like it’s so strange last week I was starting to feel ok and I could do things like leave the house but now I’m getting the symptoms again and I feel so weak.

These are all the tests I’ve had done: I’ve already had a blood test which checked my blood cell counts and iron levels and stuff. And my red blood cells are fine but my white cells are slightly high which means I have an infection in my body and I was also told that I’m slightly anaemic.

Then I had a swab of the throat done to check for strep bacteria and a breath test to check for helicobacter bacteria in the gut. Both came back negative.

Had another blood test which checked basically everything like: cells, hormones, thyroid, kidneys, blood sugar levels and a few other things. The results were explained to me over the phone but I didn’t understand that much. so a friend who’s good with medical stuff narrowed it down for me so here’s a quick version of it: red blood cells fine, white are slightly high I think my friend said 0.4 above 11, MCHC is low which means I’m anaemic, CRP is quite highly which could mean I have an inflammation, fasting glucose is fine, thyroid is fine, GGT is slightly raised, testosterone levels were high (GP reckons it’s because I just went off the pill I got checked for pcos and I don’t have it), Epstein barr virus tests were negative, prolactin within normal range, I’m insulin resistant.

Ok so that’s all of those results it’s a lot I know

I’ve been checked for wisdom teeth I don’t have any coming in yet and my teeth looked fine

I had a ultrasound done of my thyroid and ovaries (they did ovaries bc my testosterone was high so they thought I had pcos) and my thyroid is normal size and my ovaries were fine too.

And my most recent test was a CT scan done of the head and neck. My lymph nodes are fine (which was very surprising to me I thought that’s what was causing the swelling) and my salivary glands were fine with no blockages or stones or anything.

I also went to a ENT (she’s the one who referred me for the CT scan) and she said she suggests just getting my tonsils removed. Which I’m not exactly sure about since we don’t know for sure if it’s tonsillitis since I have no strep bacteria in my mouth.

I’m going to get another blood test tomorrow to check my cell count again since I’ve stopped the antibiotics. But I already know that it’s going to say that I still have the infection in my system since I can feel it coming back the last 2 days. If it is still there I’m going back to the ent to get my sinuses checked (idk if they checked it on the CT scan or not since they didn’t mention anything about the sinuses and if it’s not that then I’m going to ask them if it could be a mild allergy since I’ve noticed it gets worse after I have dairy. But after I suggest those to my GP idk what else to test for since I’ve run out of ideas on what it could be. I’ll probably just have to get my tonsils out in that case and it could all be for nothing if it doesn’t improve it.

Idk what to do anymore I feel like this has ruined my life and it’s made me so depressed I’m only 17 and all this has made me feel so unhealthy and because I haven’t been moving around much cause I’m sick I’ve put on so much weight especially in the stomach area and that’s made my depression even worse. I wanted to go back to school next year but I’m worried I won’t be able to if I’m still like this.

I’m so scared I’m worried because it’s been in my body for 4 months that it’s just going to get worse and worse and slowly start to destroy my body.

Has anyone been through anything with similar symptoms and share your experience it might help me get peace of mind.

Thanks if you read it all and I appreciate your replies!

[PeachyBlossom]

Also can feel my heartbeat throughout my whole body and if I touch certain places where you can feel your pulse it feels a lot harder then it used to like it bangs against my skin. My heart also skips a beat every few weeks sometimes every few days. Last time I got checked at a hospital my heartbeat was irregular and kept going from 80 something to almost 130 something and it kept jumping back and forth between the 2. The doctor thinks it was anxiety but wasn’t 100% sure and I never got it checked out further. Idk if it’s caused by anxiety, my infection or something more serious. But just feeling it all the time makes me rlly uncomfortable and anxious. Even when I’m sitting still I can see my collar around my shirt and my hair banging in time to my heartbeat if that makes sense?

[wobblybee Administrator Pioneer]

🤔 Whatever is causing your symptoms is obviously not easy to diagnose. Plus frustration and anxiety are likely to make things worse. Because exhaustive testing has failed to find an exact cause, the best course of action is to persist with your GP, and ask for referrals. I have a rare disease myself, initially I was misdiagnosed, and I knew something was definitely ‘not right’.

[PeachyBlossom in reply to wobblybee]

I feel like my GP and ENT have given up on me. All they want to do is put me through surgery to get my tonsils removed even though they don’t know if they are the exact cause. I rlly don’t want to have a surgery if I don’t have to. Anxiety has definitely made it worse especially looking things up on google I know I shouldn’t do it but I feel like if the doctors can’t find any answers I need to find my own answers. And researching has also helped me figure out what things I should be getting tested for but of course almost all the websites have the word cancer in it which always makes me anxious.

[LMor]

Can I suggest you get a copy of all your blood test results and post them here. Not sure where you are but if in the UK you are legally entitled to a copy. It’s really important as doctors often say everything is fine when infact it isn’t. (Not that that is your case but sometimes things like your thyroid are marked as ok when it may be borderline etc) Have you had all your vitamins tested?

[PeachyBlossom in reply to LMor]

Yes I received a copy of my results for the blood test I mentioned that checked for a couple of different things would you like me to send them to you so you can have a look? I have photos of all the pages since I sent them to someone else. If you have an Instagram I could send them to you on there?

[LMor in reply to PeachyBlossom]

I’m not a doctor. I can only give personal advice on things like the thyroid disease as it is something I have. If you have your Tsh, T4 & T3 then let me know and I’ll have a look

[PeachyBlossom in reply to LMor]

Is there any way to post it in the comments or do I have to make a new post

[LMor in reply to PeachyBlossom]

You can edit your original post but just reply to my comments and put it there

[PeachyBlossom in reply to LMor]

I couldn’t figure out how to comment it so I added it to the post.

[LMor in reply to PeachyBlossom]

Ok I’ve just seen your Tsh level of 3.6. This is actually too high although in range. But it’s a useless test without T4 and T3 as Tsh is only a signal from the pituitary gland and not a thyroid hormone. I would join the thyroid community on here and gain some knowledge about your thyroid. If possible ask your gp to retest your thyroid and make sure they include T4 & T3. If they refuse and you can afford it, there’s a company called “Monitor my Health” who will do all three tests for £29 (apparently they are Nhs approved). It’s a finger prick test you do at home and make sure the test is done first thing in the morning with no food or drink intake.

[PeachyBlossom in reply to LMor]

I’m from Australia not the UK so I’ll have to try and find an Australian website where I can buy a test. Thanks for Informing me I can’t believe they didn’t tell me it was high. I’ve just joined a thyroid group to get some advice. I also had a ultrasound done of the thyroid as well and they said it was a normal size and had no nodules on it.

I’ve got red, slightly swollen tonsils with pus on them too. would the thyroid cause that or would that be something else?

[LMor in reply to PeachyBlossom]

The thyroid causes over 300 symptoms. Your doctor won’t think it’s high as it’s in range but in some countries you would be diagnosed with a Tsh over 3. (Not in the Uk though and I don’t know about Australia). As I said, the test is useless without knowing your T4 and T3 so maybe ask your Gp to test these and see where they are in range. Good luck and get as much information from the thyroid site. There are some very knowledgeable people on there who can help

[Cooper27 in reply to LMor]

As LMor says, your TSH is on the high side (some countries would start treatment with your result) but just not outside the range for treatment in Australia yet. It would explain most of your symptoms though!

I suggest you find a test that checks for TSH, T4, T3 and TPO and TGab antibodies. I wouldn't be surprised if you have autoimmune thyroid disease (aka Hashimotos), as that can also make symptoms a lot worse.

I definitely recommend checking out a lady called Izabella Wentz. I had high thyroid antibodies and managed to get back to being a functioning individual by following her Hashimotos Protocol (book).

Ask your doctor to monitor you, as you might find in a few more months your TSH goes out if range and you'll be allowed treatment.

[LMor in reply to Cooper27]

I forgot to mention the antibodies!!! Thyroid brain lol. Yes very important to find these out. Thank you Cooper27.

[Cooper27 in reply to LMor]

It's ok, we thyroid patients have each other's backs

[PeachyBlossom in reply to Cooper27]

I found a thyroid test on imedical which tests for those things for $112 My mum said she’s not ordering one though until I get some other things tested first like allergies or a fungal infection

[Cooper27 in reply to PeachyBlossom]

You could always try asking your doctor to test for the antibodies. They can test for them, they just don't tend to as standard. The issue is your doctor won't treat antibodies, they don't know how.

Also keep an eye out for sales on the testing company websites, they run them often

[PeachyBlossom in reply to Cooper27]

Hopefully they’ll run a sale soon since my mum is very short on money at the moment with the pandemic going on.

Is there anyway to treat antibodies then if doctors don’t know how?

[Cooper27 in reply to PeachyBlossom]

Yes, you can improve the autoimmune symptoms with diet and lifestyle changes - Izabella Wentz is a good place to start for understanding that.

There's also "thyroid UK", another community on this site. It's where I've learned most of my info on thyroid issues. The more you understand it, the better

[PeachyBlossom in reply to Cooper27]

Ok I’ll definitely check her out! Thank you! I’ve joined the thyroid UK group and made a post in there so hopefully I’ll get a better understanding of it all! Thanks so much for all your help! ☺️

[PeachyBlossom in reply to Cooper27]

Hey quick question about thyroid problems (or even vitamin deficiencies). Could a problem with your thyroid (or vitamins) cause swollen arteries in your neck (I’m pretty sure it’s either a artery or a muscle because both are in that area) because there’s something in my neck which is swollen which runs from my ear to the bottom of my neck and I can feel my pulse in that spot and it’s banging against my neck rlly hard. I can also feel my pulse throughout my whole body and it feels rlly strong and fast.

[Cooper27 in reply to PeachyBlossom]

I think the main reason people have thought thyroid disease is because your thyroid is in the neck. Something called a goitre is a common symptom (although you've said you've been scanned and it's all fine?) I'm no expert, but I wonder if it's possible that swelling could cause the muscles around it to feel taut? Other thing to consider is the connection between ear nose and throat, so if you have something going on in your throat, you can feel something in your ear too.

[PeachyBlossom in reply to Cooper27]

Yeah I had a ultrasound of the thyroid done and it was normal size and there were no nodules on it. And I had a CT scan of the neck and my salivary glands and lymph nodes were fine. But there’s definitely swelling coming from something in my neck. And when I move my neck a certain way as well the arteries in my neck twitch for a few seconds (like when you get a slight twitch in your eye sometimes) and each time I bend over I feel all this pressure in my ears. So it’s definitely all connected.

[Cooper27 in reply to PeachyBlossom]

It's definitely a complicated one!

I wonder if it could be muscular? I know I'm just throwing random ideas out there, but I recall seeing a woman's case on TV (Doctor in the House, available on Youtube) where she had long term issue simply because she'd started holding her head differently after sustaining whiplash many years prior.

[Cooper27]

Did your doctor test for a yeast infection in your throat at all? That can cause white spots around the tonsils and wouldn't be treated by your antibiotics (if anything, antibiotics could make it worse).

Do you know what other things your doctor tested for? Thyroid?

[PeachyBlossom in reply to Cooper27]

No I don’t think they did test for a bacterial infection actually. You think I should mention that to my GP?

And yeah they checked my thyroid everything I got both a blood test and a ultrasound to check it and it was all ok.

[Cooper27 in reply to PeachyBlossom]

Worth investigating. It's a quick thing to treat, you gurgle an oral antifungal ointment for about a week, and it should clear up. Just adding: doctor might try without testing, because there's no harm in treating it without testing.

I'm not sure what else to suggest, but consider what illnesses run in your family to see if that could help pinpoint anything (things like diabetes etc), have a look at some symptom lists. Check your results for anything on the low end (vitamins like vit D and B vitamins too).

[PeachyBlossom in reply to Cooper27]

Ok I’ll definitely mention it to my GP tomorrow when I go to get my blood test results thank you for your reply at least that’s another option to check for!

I don’t know my medical history for my dad’s side of the family cause I haven’t seen him since I was 18 months but my mums side of the family is pretty healthy my uncle has type 2 diabetes. A few people in my family have gotten cancer from smoking but apart from that my mums side has pretty healthy genes

[Cooper27 in reply to PeachyBlossom]

Just re-read your description of your rash. Have a look at "dermatitis herpetiformis" to see if it's similar. DH is a symptom of coeliac disease, which could explain your low iron and tiredness, possibly some other physical symptoms. I'm not saying that's what you have, but another line of thought to just rule out I suppose.

[PeachyBlossom in reply to Cooper27]

Yeah a friend of mine mentioned coeliac disease I was tested a while back but I went off gluten for a few weeks and had the test not long after I started having gluten again so idk if the results were accurate I’ll have to get another test done.

[wobblybee Administrator Pioneer in reply to PeachyBlossom]

🤔 I’ve had a gluten test myself, and I know if you don’t adhere to advice about eating gluten beforehand, you can get a false negative.

You should eat some gluten in more than one meal every day for 6 weeks before you have the blood tests. You should carry on eating foods containing gluten until you have had coeliac disease confirmed by a specialist.2 Sep 2015

nice.org.uk › chapter

[PeachyBlossom in reply to wobblybee]

I was only eating gluten again for about 3 weeks before I had the test done so maybe I should do it again

[Cooper27 in reply to PeachyBlossom]

How long had you cut gluten out for before reintroducing it?

[PeachyBlossom in reply to Cooper27]

About a month and a half I think

[Cooper27 in reply to PeachyBlossom]

With coeliac disease, it can take a long time for antibodies to fall back into normal range after you give up gluten. My hunch is that 6 weeks off followed by 3 weeks back on prior to being tested, would be alright, but I'm not an expert.

There is a lot of overlap between coeliac disease and Hashimotos symptoms, but with your high-ish TSH result, it's more likely Hashimotos. 75% with Hashimotos do feel better for cutting out gluten though, so it's something to consider trying again.

[Afrohair]

Are you in the U.K. ?have you spoken to a dentist it might not be the first you think of but I had a terrible infection in my throat it sounded a bit like you I had cankers on my tounge and everything I thought my g.p had to deal with it went through a lot of antibiotics turns out the trouble all started with one of my teeth needing filling but it lead to all sorts of symptoms in my throat I couldn’t talk for weeks I’m now waiting for them to open for treatment

[PeachyBlossom in reply to Afrohair]

I’m in Australia but yeah I’ve already been to a dentist. I thought it may have been wisdom teeth coming in so I had a X-ray of my teeth done but no wisdom teeth were coming in and there were no cavities and he had a quick look inside my mouth and said that my gums around my front teeth look a bit inflamed but nothing rlly bad. I’m going to go for a clean once this pandemic is over.

[Afrohair in reply to PeachyBlossom]

My jaw hurt and everything the way yours sounds and it took a while to clear even with antibiotics they said I had to keep up really well with cleaning my mouth to prevent it coming back .they also thought it was new teeth for me but I’ve had all my teeth in.it does sound like a dental issue but you’ve said you’ve been and done that sorry I can’t help further x

[PeachyBlossom in reply to Afrohair]

That’s ok. I don’t brush my teeth as often as I should though so I’m surprised my teeth are still ok I have a bit of gingivitis with some bleeding of the gums when I brush. my dentist said that’s normal and I just need to brush and floss more to reverse it.

[Afrohair in reply to PeachyBlossom]

Yes that’s very true I initially thought I had gingivitis.you could just try taking extra care and see if it helps your symptoms I know I definitely didn’t know problems with your teeth could hurt your throat like that and your jaw till it happened to me I always thought I was perfect but after having 4 kids one misscarrige my teeth went downhill as they get sensitive after children.i was on the phone every day to my g.p they told me to use salt water and brush more regularly and it really helped I also bought a tounge brush I had those little dots on my tounge aswell and my tonsils were inflamed they thought tonsillitis but I said I don’t think it’s my tonsils

[PeachyBlossom in reply to Afrohair]

Yeah I’ll definitely have to start brushing and flossing more regularly I think. I’ll also try and use saltwater too! I’ll try and buy myself a tongue brush as well to see if it helps with the dots on my tongue. Are your tonsils better now since you’ve started brushing more?

[Afrohair in reply to PeachyBlossom]

Yes everything is much better now since I started brushing and rinsing with salt water .I had a infection for a long time and like you I felt like I was getting sicker and sicker antibiotics didn’t seem to work and I even couldn’t speak I had to rest my voice for weeks not even whispering

[PeachyBlossom in reply to Afrohair]

Wow ok I’ll definitely start doing all these things! How many times a day do you recommend rinsing with the salt water? :3

[Afrohair in reply to PeachyBlossom]

started off doing it every time I ate I brushed my teeth and rinsed when it started to get better I did it less I think it can be the start of gum disease as my teeth seemed to be reversing on one side of my mouth gum disease can come and go it’s progressive so one minute you can be ok it’s when you don’t keep up with it .i was going through a really bad patch where I was neglecting my teeth I didn’t even realise I’d done it .I’m not going to lie I just kept putting other things first and my life was stressful it’s like I kind of forgot to do it regular I have 3 children and lost a baby it put me in a very bad place then when this happened to me I’ll never forget the pain it caused me in my jaw and my throat cankers in my mouth it came suddenly like some kind of fever at first I thought I had to tell my g.p but realised it’s more dental.the dentist told me it can impact your whole jaw and throat I couldn’t sleep with mine

[Donnanh]

Hi Peachyblossom

I’m sorry for all the issues you’re having, I’m not experienced in your symptoms but noticed you say you’ve been on a few courses of antibiotics.

Although antibiotics are a life saver in getting rid of infections they are also really tough on your body throwing it off balance. Getting thrush in your mouth is one side effect, that I have experience of.

Try and help your body by having probiotics such as Yakult or making some bone broth. It will help your body a little while you get to the bottom of what’s going on, take care

[PeachyBlossom]

Hi everyone I just got my results for my blood test. My GP said that my White blood cell count and CRP has gone done which means the infection is starting to leave my body which is good. But if that’s the case then idk I still feel so sick and weak. I mentioned allergies to her and she doesn’t think that’s the cause but she said there’s not harm going on antihistamines for a few weeks to see if it helps. She said that over the next 2-3 weeks the infection should start to leave my body even more so she said in about 3 weeks to come back and get another blood test to check my white blood cell count to see if it’s gone done further. I didn’t think I should mention a fungal infection cause I was worried if I mentioned too many things at once she’d say Im a hypochondriac or something. Anyways if it was fungal/ yeast infection I don’t think the antibiotics would’ve helped to reduce it. I might go in and ask if I can get my vitamin levels checked before I get my next blood test done and I’ll probably still order a thyroid test online just to make sure those things are ok. If anyone has any other things to suggest that I should get tested for feel free to lmk. Thanks for all your comments it’s made me feel less alone while I go through this.