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bitterntwisted

VIP Member
I'm wondering if anyone can shed light on how hard/easy it is to be diagnosed with an underactive thyroid? Especially as someone starting from an overweight BMI?
I'm in Canada, but I don't doubt this will be the same for the UK. Your GP will order blood work for a TSH and free T4 to see if they thyroid is hypo or not. If the TSH is high and the T4 is low (depending on the numbers of course), your GP will prescribe thyroid meds ASAP. In my case I sleeping more than I was awake, hardly eating and gaining weight, muscle aches.
 

monga

VIP Member
Does anyone know if your dose of Eltroxin should be adjusted if you lose a stone or so in weight? Have been hypo for years, my dose hasn’t changed in 3 years but lately I think I’ve swung a little bit hyper - very mild symptoms as yet. I’m due to get my levels checked next month anyway but I’d be interested to hear other people’s opinions on it.
They’ll adjust it according to the results of your blood work.
 

monga

VIP Member
Sorry, I mistyped and realised that was overactive! My mistake.
Mainly hot all the time, palpitations, fatigue, feeling really agitated etc. O also feel hungry all the time but have lost weight rapidly at a couple
Of points this past year. I looked at my notes on the app and 18 months ago it was 0.36 (normal is 0.35) and in Jan and June 0.32
Thanks for replying. This is new and a bit scary
Yeah definitely running a bit high, classic symptoms. Your GP should’ve already referred you to hospital it’s the endo clinic deals with that.you’ll just get regular appointments with blood work they’ll start you on meds to regulate it they usually do diagnostics like an ultrasound and MRI to see what’s going on with the thyroid itself and give them more info on what treatment to offer. You’ll feel a lot better once you start on meds.
 

knivesnflowers

VIP Member
Hypothyroidism - diagnosed at 15 (now 29). Been on levothyroxine since I was diagnosed but have never felt like it’s made a difference. GPs don’t seem to give a shit and as long as they’re satisfied with the blood results then that’s good enough for them. I’ve considered going private but it’s just too expensive atm.

The exhaustion and brain fog is the worst. I can easily sleep for 12+ hours a night (and would if I didn’t have to go to work😂). I used to be fairly intelligent, nothing to rave about but I did well in school up until I was diagnosed then everything took a nosedive. Still affecting me now as I’m about 6 months behind on my college work and every time I sit down and try to get something done my brain just goes blank and can’t string a sentence together or concentrate. I’ve been in tears over not being able to focus.

Always have cold hands and feet even when I’m warm. Dry skin, dry eyes, brittle hair and nails, heart palpitations, low mood/mood swings, raging irritability, consistently crave sugar, bad circulation - get frequent cramps and numb/tingly hands and feet. Was always underweight and struggled to gain no matter what I was eating, now the weight has decided it wants to stick around and am no longer a bottomless pit😭

Also have PCOS on top of all that plus cervical issues. I wonder what it’s like to be illness-free🤔
are we the same person?? literally relate to everything but my weight has always been hard to shift. i'm 19 now and have a CFS diagnosis but after a bit of cbt it's literally just a label so still have to put up w the symptoms. even down to the PCOS and experience with school (went from 12 subjects to 3, 2hrs / day part time and did more gcses in outpatient hospital school). in all honesty some of my chronic pain / thyroid crossover symptoms have had me researching MS but i'm too scared to enquire w a doctor bc i feel like it'll be easily dismissed!
 

GetOffMyLawn

Well-known member
I have hypothyroidism.....and I am coeliac and I have had both of these for years, I take levothyroxine daily.

The hypothyroidism /coeliac disease may be connected? There is a lot of anecdotal evidence...but this is one of my biggest issues around these conditions...so little is actually known or researched properly that it is hard to be confident what is and what isnt connected!

My current issues, even though I am on what the doctor says is the correct dose of levothyroxine....is that I am still tired....and have nothing in reserve for days when I am extra busy, So if I have a busy day....it can take a week to recover properly, and stop the feeling of sheer exhaustion! so I have to plan my life around working part time and getting enough sleep and rest! And i find it ridiculously difficult to lose weight, and I suffer from low mood...especially at the moment!

I also think my coeliac disease was undiagnosed for years...........despite years of being told whilst pregnant etc that my iron levels were way too low... and a history of irritable bowel symptoms from my teens! .my teeth are also awful maybe a family history of low calcium levels hasnt helped with this!

The trouble is most of these are symptoms that could be such a wide variety of different causes..........I just wish there was better knowledge and research into how they all link, and whether they could be better balanced, with more comprehensive blood tests?

And being coeliac......food intolerances do link massively into things, but there is also a lot of rubbish written as well!!
For me, and for a lot of coeliacs, wheat proteins interferes with the absorbtion of vital minerals into my gut and then into my blood stream, things like iron, and probably things like B vitamins....so my lifetime borderline anemia.....kinda fits.... and anemia in its turn also explains tiredness.......but....has never been acknowledged or treated by my doctor!
It could be that your low in folate or iron. I experienced similar and though not Celiac I do have digestive issues / absorption problems; a blood test determined I was severely low in folate and iron so had to have a transfusion and am now taking folate and iron supplements. They’ll retest in six months but i do feel a lot better. I’d definitely recommend getting your levels checked :) good lucj
 

ChampagneBox

VIP Member
Anyone been on levo for over a year and only just developing period problems? I think my period might be here early this month😪 but it’s over a year since I started levo after TT so I don’t know if it is thyroid related or not…
 

Fpark

Member
I have these symptoms but not weight gain, also my hair texture has really changed! Scalp is really itchy and flakey but really oily too! I was recently diagnosed ceoliac so Im sure sure if im just lacking in vitaman. I have blood tests tommrow to check, would it show on these or is it a specific type of test
 

monga

VIP Member
Just bene diagnosed with Hashimotos Disease… Feels like a relief to have an explanation of why I’ve felt shit for so long, but also weird to get used to now being “ill” instead of it just being in my head… my doctor said it might take months before I feel better as my thyroid is basically not functioning right now… Dunno why I’m posting, just be nice to hear from some others who are in the same boat I guess…
Have they started you on any meds ? they usually take about 6 wks to kick in .
 

monga

VIP Member
Started on 50 first week had bloods done again and now I’m on the second week it’s been upped to 75 and third week go up to 100 then Blood test again. My numbers were ridiculous… tsh was over 200 and t4 was 3.3… I’m really looking forward to not feeling cold all the time 😅
Mine have been all over the place for years from the highest end of the scale I'm now right under, my last readings were T4=14.6 TSH 5.53 apparently it's been a big drop from my usual readings ( I'm hyperthyroid) have to get bloods done every 6 weeks until they decide what to do .I dropped after my covid vaccine they're waiting to see if it comes up again so I'll have to stick the cold for longer 😂

Honestly, i lost sense of where I was, i went tingly all over, horrid feeling of deja vu, i had to reasses where i was when the moment passed. It was like a blackout without fainting. So so horrible!!
It's rare how much the thyroid can affect you. I never even gave it a second thought before it went wonky 😂 there's so many symptoms from it from diarrhea to shakes and everything in between .Hope you get it sorted soon it's such a horrible feeling .
 
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monga

VIP Member
Hi everyone, I was wondering if anyone had experience of being pregnant with an over active thyroid? It got picked up in a blood test in July last year, got a letter in September to say I was on a waiting list and then nothing.. I fell pregnant in November and I'm currently nearly 13 weeks. I had a TFT a few days ago and now have 2 appointments with consultants in March but was just wondering if anyone knew the process and what they do in pregnancy?
Yes I had it, but luckily mine is an autoimmune condition so it went away while pregnant,they were offering this although it’s not generally available to the public anymore and has to be strictly monitored…Hopefully yours will be the same, good luck for the rest of the pregnancy x
 

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kh17

Chatty Member
Hi everyone, bit of a long winded message but hope I can get advice. I have had underactive thyroid since 2012, always been between 50mg-75mg for my thyroxine. Since December I have dropped from 56kg to 49.5kg , my bloods were taking in January and shown I needed to up my medication from 75mg to 100mg, anyway I'll be complety transparent here as I feel I can't be to family, but I'm scared of taking my tablets incase I gain weight, is this what will happen, I have never always taken my tablets religiously - silly I know but I hate taking tablets and I always forget....since getting the results back I found if my readings required me to " up" my dosage , then why am I losing weight as opposed to gaining which is a symptom of underactive... I've always struggled with weight and become fixated on it and to not gain and lose, even though my BMI is now underweight. I have now found my throat has the " lump" and I struggle to swallow or feels like my throat is closing up which has been on and off for years with the swallowing but the lump is new, I went to the GP and I am being referred for an US, so I'm waiting for that, in the mean time can anyone advise if I was to take my Thyroxine would that bring my weight down or make me put it on... sorry for the post and please no judgement over I'm being silly for not taking it but I do struggle with body image. Thank you xx
 

monga

VIP Member
Does anyone find they have some thyroid related symptoms but doctor isnt keen to budge medication? I've found my sleeping has become terrible in recent weeks and for even longer, I'm just not able to get warm at all, pretty much always cold. My TSH is usually always around 5 and doctor say that is a little high but normal but then says if I want to conceive a baby we'd need to adjust it (which is confusing).
Probably borderline? They won’t adjust in that instance…I don’t know how old you are but could it be perimenopause? That kicks in earlier than you think.
 

Hairraiser

VIP Member
I just saw this thread - it's so timely, my doctor suspects I have an underactive thyroid. Going to have labs done (ugh, I hate needles), hope I can find answers as to what's going on with me!
I hope you get the answer you’re looking for!
it’s such a worrying time.
what Sort of symptoms do you have?
 

crankypants13

VIP Member
Has anyone found a remedy for dry scalp? I’ve tried a host of shampoos but nothing has cured it. I was looking at The Inkey List Glycolic Scalp Treatment - anyone tried it?
 
I had exactly the same when I was on too low of a dose, so cold all of the time and I was extremely tired even if I’d slept well. I don’t have any symptoms at all now and haven’t for years. I can’t remember how long I’ve been on the higher dose but my op was 8 years ago and I’d guess within a year or two of it I was on 100mcg. Are you still under the hospital? I go once a year to see the consultant and I see my GP in-between, so I have my bloods checked every 6 months
No I’m not, they haven’t seen me in endocrinology since I went back for the results post op. I have an annual blood check with my GP but they will check them sooner if I call. The coldness is such an issue, my partner laughs when I’ve got a blanket on and it’s warm. I’d have the central heating on 24/7 if I could afford too! 😆

TSH 2.2 is pretty good. I havent had mine removed but I take 75mcg a day and my TSH was 5 last time I got it tested. Dr says with no very obvious other symptoms he doesnt want to tweak my meds.
I read that if a thyroid condition is detected then TSH levels should be kept between 0.5-2, although I’m not sure how reliable that source was. My levels were at 4 before I began on Levo and I was barely functioning.
I think too much levothyroxine can cause more issues than not enough from what I’ve heard, it’s so hard to find the middle ground isn’t it.
How do you feel with your TSH level being so high?
 

monga

VIP Member
Me and my partner are currently going through the same. It is common that thyroid problems can stop you from ovulating so it’s definitely worth getting checked! Especially as the thyroid itself and medication involved can affect pregnancies. I’ve got an overactive thyroid and found out today we should put a pause on TTC due to high levels 👎🏻
Was it your consultant advised this ? there is medication available but has to be carefully monitored ,if it's an autoimmune condition that's causing your hyperthyroidism it actually goes away in pregnancy as your immune system dampens down .
 

knivesnflowers

VIP Member
Just bene diagnosed with Hashimotos Disease… Feels like a relief to have an explanation of why I’ve felt shit for so long, but also weird to get used to now being “ill” instead of it just being in my head… my doctor said it might take months before I feel better as my thyroid is basically not functioning right now… Dunno why I’m posting, just be nice to hear from some others who are in the same boat I guess…
idk if it was just because i was young when diagnosed (about 14) but i got an ultrasound of the nodules on the gland abt six months after starting meds. spoiler - they use the same sized scanner thing as a standard abdominal ultrasound so it can get quite uncomfortable. i haven't had one since though so not sure what standard practice is there! the symptoms never really went away for me but i got a further diagnosis of chronic pain and cfs so again idk what your experience will be. symptoms do noticeably get worse when my meds are due an increase - i've gone from 75 to 125mcg since september so probably the worst time to be even colder too
 

monga

VIP Member
IMG_1042.jpeg
It’s showing this as a normal T4 reading .
---
I’m at a loss as to why I have the same symptoms as hypo.

I should be grateful my numbers are ok, i just wish I knew what was wrong ☹
You seem to be just on the normal range so maybe that’s why you’re having symptoms.
 

fishyfishfish

VIP Member
Hi all. Diagnosed with Graves (hyper) 2.5 years ago. Going back on carbimazole next week as my levels have shot up again for the 2nd time this year... last time endo let me see if they would come down on their own (they did) but that's not happening this time. She's also prescribed me semaglutide (wegovy) as I put 3 stone on last time I was on carbimazole. Has anyone else been on ozempic/wegocy whilst on carbimazole and did it help stem/stop the weight gain please?
 

ChampagneBox

VIP Member
Debating going back on the implant, slightly suppressed TSH for thyroid cancer purposes. Anyone on the implant and it’s been fine, no failures?