Thyroid

[monga]

Thanks, I think I’ll ring the specialist nurse tomorrow just to make her aware

There’s no harm in asking they’ll be able to advise.

 

[Begborrowsteal]

imo that sounds like hyperthyroidism? ik for me (with hashimoto's) the tsh is high and t4 is low so the signalling hormone works overtime to produce enough thyroxine, and if i'm reading it right yours is the opposite! p sure that would fall under graves disease or something similar where the body is attacking healthy cells.
disclaimer - not a doctor and i could v easily be wrong
also i think this site explains it better: https://www.healthline.com/health/subclinical-hyperthyroidism

Yeah, this is the thing, she said my levels showed as though a dose of thyroid medicatication was too high but im not on any! (I think the T levels were ok, i dont remember what she said about about them). I had postpartum thyroiditis 6yrs ago. Maybe its just a bit of a shit thyroid i have it was slightly overactive but has no seemingly settled.

She said it doesnt need treatment as long as it stays within range

 

[dinosaursideways]

Oh really!! I'm just annoyed aswell that I was given NO information about it!! It was literally "here's your diagnosis, deal with it til we can fit you in"
Yes I think it's definitely down to an autoimmune condition because like I said, I have a different one and they all seem to go hand in hand unfortunately!
Ahhh thanks so much for all your advice!! I'll definitely be calling the gp tomorrow and even ask if the specialist can fit me in sooner!

If they don't seem to be taking it seriously enough, referring to the NICE guidance may help - this is what they should be following. You don't have to understand it but it might help you say - you are not following the NICE recommendations in my care - and for you to know what you (should) be able to expect (though it's hard with how broken the NHS is now). It's really reassuring to hear you have a specialist appointment soon, but thyroid disorders can impact pregnancy and its really important you're getting the right care, not just from specialists but from your GP/midwife. I'm shocked (but not surprised) you didn't get seen any sooner when you were known to be hyper since last year.

For hyperthryoidism and pregnancy (https://cks.nice.org.uk/topics/hyperthyroidism/management/pre-conception-pregnancy-postpartum/) NICE recommends that healthcare professionals 'Advise the woman to seek immediate medical advice if pregnancy is suspected or confirmed.' and 'Arrange referral to an endocrinology specialist for all women with overt or subclinical hyperthyroidism who are planning a pregnancy, for pre-pregnancy counselling.'

For hypothyroidism in pregnancy (https://cks.nice.org.uk/topics/hypothyroidism/management/preconception-or-pregnant/) NICE state 'Discuss urgently with an endocrinologist regarding initiation of, or changes to, dosage of LT4 and TFT monitoring while waiting for specialist review.'


Also re the earlier discussion around selenium. If you are selenium deficient, taking selenium may improve how your body converts T4 to T3. In my case taking selenium supplements actually ended up in me needing a lower levothyroxine dose, because it improved my T4 to T3 conversion so much I ended up symptomatically hyperthyroid. Be careful with selenium supplements because you can get quite a lot of selenium from your diet and the level at which selenium is toxic is relatively low - if you eat brazil nuts/have a high diatery intake of selenium it may not be safe to take additional supplements.

 

[TwooTwooTwitTwitTwoo]

Ah I've no probs answering.
I had palpitations and hand tremorsand had lost weight and was feeling quite shit with sore stomach so went docs and he sent me a and e straight away. Got there and my blood pressure was through roof as was resting heart rate. Put on beta blockers straight away. Did numerous scans like ECG, heart echo, ultrsound, MRI, CT, XRAYS . Somewhere in the first couple of days it threw up that I had an afib heartbeat and one of the valves in my heart is always open. Got heartbeat lowered with beta blockers and also procoralan. They said the thyroid storm caused the irregular heartbeat and I will always have it and will always be on the tabs unless I want to go down the route of cardioversion. Doesn't affect me other than if I overexert myself I'll be more tired than I should be. As for the pain in my stomach god knows what that was they were convinced I was an alcoholic though coz my liver was bad but that was related to thyroid too apparently.
Apologies for long answer x

Thank you so much. That's not too dissimilar to what I'm dealing with although without the liver issue (that I'm aware of anyway, bloods were all ok). Ended up at A and E with a high resting heart rate, palpitations and chest pain. I can't take betablockers so they've given me a short course of Verapamil to trial. I've got my echo next week then a 7 day Holter at some point to either rule in or out AFib. SVT was mentioned but then I googled and discovered that there were loads of things that come under that umbrella term so Dr Google is leaving me none the wiser. I have watched and read a selection interesting sources of interpretation of ECG's along the way though .

 

[monga]

Nope absolutely nothing! They sent me the original letter telling me it was over active and that I was on a waiting list to be seen and then I didn't hear a thing! And then when I got pregnant I think the midwife gave them a kick up the arse and now they've given me my 1st appointment.
Oh really?? I know neither are great but I thought overactive was the more dangerous to have! I'll absolutely give them a ring tomorrow then and try to get to the bottom of it

That’s awful ,you’re supposed to be seen within six weeks and have tests carried out to the cause, that’s this bloody pandemic has held everything up, I suspect you probably have graves if it’s gone away in pregnancy but you’ll still need regular monitoring, phone your GP and see if they can ring the consultant pretend you’re feeling awful and tell them you’re worried, they won’t do anything other than give you medication but the GP won’t be able to prescribe it if you’re under consultant care ,they’ll be able to give them the go ahead over the phone to prescribe you something and probably give you another blood test in 6 weeks when it kicks in.

 

[monga]

I had surgery. I was told RAI wasn't an option because I was so young. I'm surprised they would consider leaving you on carbimazole long term, when I was on it I was told staying on it forever wasn't an option because of the risks/complications. I had a total thyroidectomy, if you have any questions about that.

That’s rubbish whoever told you that I was on it for 18 yrs before the covid vaccine knocked me hypo , the reason I never opted for radio iodine is because it can damage the eyes if you’ve got the eye disease, my consultant wanted me to take 150 steroids before treatment , it put me off tbh.

 

[monga]

thank you. I am really struggling. My salbutamol inhaler is not working at all. I’m tempted to phone 111 but I’m not sure what they’ll do

Yes it can be ,also a feeling of being smothered , if you're really hypo your whole system will be slower including your heartrate .

 

[monga]

Do you think I’m best to go back in a couple of months, I wonder how often they can change?

Whenever I’ve had my medication changed my consultant would always say get a repeat blood test in 6 weeks , but its hard to tell how long natural fluctuation takes? I’d just go back if you’re not feeling any better.

 

[monga]

I'm interested in your experience of the vaccine making it worse because mine was stable too (previously overactive, stable without meds after hemithyroidectomy) until until a blood test three months after my first vaccine. I did miss my annual blood test in 2020 but I wasn't experiencing any issues so have no reason to think there was an issue.
All the growth in the nodules has been since I was vaccinated too. The thing is huge and I feel like I'm just been left in the wilderness. It's really frustrating partly because it's exacerbatimg another medical condition I have too, which has also been stable for a number of years.

I think I'm going to start on a baby aspirin dose per day again because the reason it was initially diagnosed was because I developed an irregular heart beat during surgery. The other condition I have also puts me at risk of stroke so I'm staring to feel a little bit on edge.

I had terrible symptoms from my first vaccine felt like the house dropped on me couldn’t lift my arm for days , like flu achy kind of symptoms and sore throat but not a sore throat, odd symptoms that kept coming and going, my joints were swollen and sore my nails had funny lines that I was putting down to hand sanitizer as I’d never had them before, my eyesight was getting worse ,extreme tiredness and my cycle had stopped, I was putting that down to peri menopause or something, like I say I’ve never been under active so I didn’t put it down to my thyroid, I didn’t get my thyroid checked till December as I only needed it done every few months because I’ve been stable for years last time I had it done was before the vaccines and it was normal. I had my blood checked on the Wed and the GP rang me first thing next morning to tell me it was really low and he’d already phoned my endo and she’d be in touch with me, someone on another thread said their endo had told them if they were getting the vaccine to get their bloods done soon after as there are cases of it interfering with thyroid hormones? I’d never had any advice unless it’s a new thing they’d discovered, I had Pfizer in December and a horrendous heavy period in Jan and really tender boobs so I don’t know where my levels are atm I have to get them checked this week I’m off my carbimozole and have to have my bloods done every six weeks and phone my consultant for the results she sent me out the specimen bags for haematology to get them done at the hubs if my GP can’t fit me in… This is online so maybe there’s something they’ve found out as more people are coming forward...ETA I have these symptoms from Feb till present but they are slightly improving as I'm off my meds so maybe it's coming back up.

Fifth Documented Case of Graves Disease Linked With COVID-19 Vaccine

A relationship between thyroid dysfunction, autoimmune thyroid disorders, and COVID-19 infection is evolving in medical literature. Researchers investigated whether this link extended to the COVID-19 vaccine.

www.endocrinologyadvisor.com

 

[barmcake]

Yeah,I'm assuming it's levothyroxine if it doesn't come back up ,hope they offer you something soon is yours going up and down or too low ?

Yeah, 100mg levothyroxine. It's low at the moment but was high the time before and just seems to swings like a bloody seesaw.

 

[Welshgal]

I am so sorry @xbxbx. Please keep pushing your GP or try to go to a specialist.

 

[George01]

Hoping for a bit of advice before I start googling and driving myself insane.
My 13yr old daughter had some blood tests and when I rung for results the GP receptionist said that “there’s an issue with her thyroid and that she’s anaemic” and that we need to book an appointment to see the GP. I can see in the app the results and free T4 was 10.7 and her TSH was 2.8. Her HB and Ferritin are also low - HB 107 and Ferritin 2.

The anemia isn’t really anything new although it’s definitely worse than it was but the thyroid thing is what’s throwing me off. Does anyone have any suggestions what those results could mean as well not be able to get an appointment for a day or 2

According to my GP app with my.precious results in the normal range for TSH is 0.27- 4.2 so that looks like it's normal and the normal for T4 is between 12 and 22 so slightly underactive thyroid. She might get put on a low dose of levothyroxine to take to try and balance it out.

Compared to some of the results I've had over the years hers are really not too bad so don't stress too much, I'm obviously not an expert can only go on what I've dealt with over the years but the docs will deffo be able to give more clarity on the next steps for her. Thyroid issues for me have always been a bit of a minefield everyone's are slightly different but as long as I am strict with my medication I'm generally fine on it and it doesn't cause any other health issues for me

 

[Vidyagaymes]

It’s funny you mention selenium. After my last post I bought a pack of Brazil nuts as I’d always heard they were good for thyroid function but never really looked into why, turns out they’re high in selenium. I’ve been having 2-3 of them in the morning for a couple of days and today is the first day in months, possibly a year, that I feel good. It might be a total fluke but I genuinely think it’s the nuts/selenium that’s making me feel this way. I’ve only been back on levothyroxine for a week so I feel like it’s too early to see such a noticeable difference, but perhaps the combination of being back on the meds and the intake of selenium are working together like a dream.

Today should have been a day where I felt awful. No caffeine, minimal water, pretty much ate nothing the whole day, work was horrendously busy, short staffed due to annual leave and sickness and I had to unexpectedly stay behind over an hour after I was due to finish. Any other day my stress and anxiety would’ve been through the roof and I’d have been making myself feel ill trying to get as much done as possible, yet I was completely ‘zen’ the whole day. Nothing phased me. I was calm, worry-free and just got on with things. I even had a colleague ask ‘why are you ok’, because this is so unlike me. I REALLY hope this feeling continues because it’s absolute bliss, but knowing my luck it’ll be a fluke and I’ll be back to my grouchy self tomorrow

Oh that is interesting! Might be worth a shot trying that…

Although generally I think I am now on a good dose. On 900mcg a week now… which seems like loads?

When I wrote earlier in the year I was sleeping from like 6pm to 6am and still feeling terrible through the day, but now I actually can stay awake through a film that we start after 9pm!!! I’m so glad that all the horribleness was so relatively easily fixed. The symptoms for thyroid stuff are so all encompassing it is unbelievable one or two pills a day can sort all of that out?

 

[monga]

I'm 33 - so (hopefully) unlikely to be that. I think i'll bring it up with my doc if nothing improves and ask for bloods to be done again.

Perimenopause can occur up to a decade beforehand,thyroid disease can exacerbate it , hopefully it’s just the run of the mill abnormalities , personally I wouldn’t hang around if you do want children peri/ menopause can happen very quick.

 

[heresmycode10]

Does anybody’s thyroid / T4 levels fluctuate? Is that normal?

I was originally overactive, and then went underactive. I started on low dose of 50mcg levothyroxine which increased my T4 a bit, then it went back to underactive within a matter of weeks. Increased meds to 75mcg.. again it increased my T4 to normal levels for a good month, felt good, and now again it’s too low and I feel crap. Although not low enough on NHS parameters as it’s just teetering above the cut off point.
I’m fairly new to all of this.. Does it take a while to find the right dose and do thyroid levels sometimes fluctuate depending on certain factors? Any advice appreciated!
Thank you

 

[Beth1980]

Can I ask how do you all differentiate between the TSH being out of range and a Hashimoto flare which when ended may bring the levels down without an increase in levo?
Last year I had to really explain and beg for an increase and this year my annual results were out of range, comment was no further action, I had no energy to question this but now I am rock bottom.
If it is a flare up I can try to 'sit it out' a while longer, or could it be just adjusting to winter, I did have the peri menopause thrown at me last year and it could be contributing but the doc didn't want to follow up on that either.

 

[catmama1692]

Did they not start you on any medication or give you any diagnostic tests ( like a scan) ? If it’s hypo you really need to consult your GP and they’ll be able to ring the hospital and speak to your consultant as medication will be needed, unless you’re already on medication in that case they’ll tell you to stop, but ring your GP for advice tomorrow don’t wait till next month if your levels are abnormal.

Nope absolutely nothing! They sent me the original letter telling me it was over active and that I was on a waiting list to be seen and then I didn't hear a thing! And then when I got pregnant I think the midwife gave them a kick up the arse and now they've given me my 1st appointment.
Oh really?? I know neither are great but I thought overactive was the more dangerous to have! I'll absolutely give them a ring tomorrow then and try to get to the bottom of it

 

[25ag]

Sorry to hear this. Look out for an antiperspirant called DRICLOR. It is used in cases of excessive sweating, hyperhidrosis. You can get it over the counter. But if that doesn't help contact you GP who can prescribe a stronger version.
Good luck.

Thanks. I have driclor, the roll on applicator one. It doesn’t really do anything for my hands though as they still end up quite sweaty no matter how much I put on. I don’t tend to sweat anywhere else, it’s just my hands that is over excessive which could be down to my anxiety etc. But I didn’t know there was a stronger version of it, so I’ll contact my doctor and ask about that. Thank you!

 

[TwooTwooTwitTwitTwoo]

Yes it does improve once your levels drop into the normal range but it can take a while . I don't think being underactive is as hard to manage as over ( here's hoping ) I've had a lot of twoing and froing with meds over the years from block and replace to coming off only to relapse , I've been fine this past 10 yrs only on a maintence dose to control it until I had that feckin vaccine .I've had ongoing symptoms from Feb ( didn't find out till Dec )but didn't know it was being caused by being underactive as I've never been that way ,the joint pains etc were beginning to worry me though, so like yourself it's a kind of relief , only thing is stress and illness can play havoc with your levels even if you're being medicated as the immune system takes a battering ,hope you're feeling better soon and you don't take too long to fall into the normal range .

I'm interested in your experience of the vaccine making it worse because mine was stable too (previously overactive, stable without meds after hemithyroidectomy) until until a blood test three months after my first vaccine. I did miss my annual blood test in 2020 but I wasn't experiencing any issues so have no reason to think there was an issue.
All the growth in the nodules has been since I was vaccinated too. The thing is huge and I feel like I'm just been left in the wilderness. It's really frustrating partly because it's exacerbatimg another medical condition I have too, which has also been stable for a number of years.

I think I'm going to start on a baby aspirin dose per day again because the reason it was initially diagnosed was because I developed an irregular heart beat during surgery. The other condition I have also puts me at risk of stroke so I'm staring to feel a little bit on edge.

 

[Vidyagaymes]

Have they started you on any meds ? they usually take about 6 wks to kick in .

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