Thyroid

[hettywainthroppp]

Yeah, so I started off on 50mcg and they increased by 25mcg every few months until I ended up at the level they were happy with. I fluctuate between 125-150mcg now. How long as it been since you had half removed?

It will be 4 years in September, they wouldn’t start me on levothyroxine until summer 2020 even though my symptoms had been setting in slowly since I had the op in 2018.
They agreed to start me off on 25mcg which helped initially but I soon started to fall back, so they upped it to 50mcg summer last year. My TSH level is currently 2.2 but my symptoms are as bad as they’ve ever been, it was 20 degrees here in the last week and I was absolutely freezing cold, it’s bizarre.
I suppose finding a good doctor that will listen is half the battle won isnt it.
I’ve even thought about going privately to see a specialist doctor, how long has it been since you had yours removed? Do you feel better since being on a higher dose?

It's such a minefield isn't it. I still have symptoms of an underactive Thyroid, I am on 100mg... sick to death of asking for bloods to be rechecked only for them to tell me that its borderline and to stick with the 100mg.

So sick of feeling low and tired and dry skin etc etc. Eating healthy and not losing weight either. It's so stressful. I feel totally fobbed off. I am so close to going to the Endocrine clinic at the hospital and bypassing my doctors. I am struggling to concieve and I'm sure my thyroid is the reason. I never had any issue last time when I was on 125mg but the docs wont listen and wont up it for me, even for a trial period.

Getting the doctors to listen is the biggest battle, I’ve also thought about going straight to them, but the doctor who removed my right side thyroid told me I’d never need levo! He was an endocrine specialist so I don’t have much faith in them either ‍

 

[yellowmellow]

Could you request the blood test results? I always get my GP to send me a copy of my blood results (these days I can request by email and they will email it back or I pick it up from the desk) for my records. I'm not familiar with any reference ranges for TSH/T3/T4 that use 0-30 - the British Thyroid Foundation has a page on thyroid function tests that might be helpful https://www.btf-thyroid.org/thyroid-function-tests.

Thanks for responding! I didn't even think about asking for a copy of my results, I'm going to pop in after work and ask them so I can do some research!

 

[HankMcPrank]

I feel over whelmed. I had bloods done as I’ve recently found I am pregnant, but my H4 levels are low. The GP tonight didn’t prescribe me any medication as he needed to liaise with another doctor on what’s the best thing to do as I am 7 weeks pregnant. Unsure if it the pregnancy or underlining problem which has just been highlighted.

 

[TwooTwooTwitTwitTwoo]

Thanks for your reply. My OB has contacted Endocrinology to ask whether to repeat the bloods, medicate or do nothing. So I am awaiting that answer!

I also realised he tested my TSH and it is suppressed <0.01 which I believe may indicate Graves?

My TSH has been <0.01 (undetectable) both during pregnancy and afterwards. My thyroid issue isn't autoimmune, it's a multinodular goiter which had become toxic so the nodules were producing too much of the hormone. I very nearly had to go on medication during one of my pregnancies but fortunately my T4 levels didn't rise any higher. There are side effects with the medication though so make sure you're making an informed choice.

I can't remember if you mentioned in your previous post whether you'd been tested for antibodies? This will determine if you have an autoimmune condition or a problem within the thyroid itself.

Mine didn't ever resolve properly after pregnancy and I ended up having half of it removed. The remaining half is very large but at the moment is behaving itself hormone wise so I get to keep it for a while.

 

[TwooTwooTwitTwitTwoo]

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?

Hi, mine was overactive during my pregnancies. Now they've found the issue they will monitor you with regular blood tests. There's a threshold where you'll need to start taking medication. You'll probably be under Consultant care for the rest of the pregnancy (and possibly all future ones) so you'll have more appointments. I saw my Consultant monthly initially I think.

I found that my consultant was really good at listening to what I wanted and we held off medicating at the point where they would have liked me to start taking it. They were very clear though that had my T3 and T4 levels raised any further that medication would no longer be a choice but an absolute necessity.

They would have put me on carbimazole. It might be worth reading up on it now so you can make informed choices.

You'll also need to have your thyroid levels checked regularly after pregnancy to see if they go back to normal. Longer term it will depend on what the reason behind your thyroid being overactive is, ie: autoimmune issue/multinodular goiter etc to how that is managed.

 

[hettywainthroppp]

I have half and I’m on 125mcg

Have they increased it gradually over time for you? My doctors are so reluctant to increase mine, it’s so frustrating

 

[LyonsRBarrys]

Hi ladies.

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 recently came across a checklist for thyroid issues and I check a lot of the boxes - difficulty losing weight but easy weight gain, always tired no matter what I do, eat or take (as in supplements), low mood, constantly cold and always battling with dry skin. I always thought that this was just how my body worked (even my boyfriend says I'm just eternally sleepy) but my mum had an overactive thyroid when I was little and now I'm wondering if it may run in the family. How long did it take from your first appointments to diagnosis and being on tablets etc?

Would be grateful to hear from anyone

ETA: I also just read that teenagers can start puberty early if this is something they suffer with. I started my periods in primary school so really starting to wonder if I've always had this issue in peaks and troughs...

Your gp can do bloods to check your thyroid levels
Or you can buy a home test kit, you take a blood sample (finger prick) and send off
let’s get checked is one website I know off.

 

[monga]

Hi! I got told it was overactive in july but that was all the info I got so I'm not sure what the cause of it is, I had the original TFT as I have a different autoimmune disease. Do you think that's what it is then? (I know your not a doctor, just open to opinions )
Yes I have 2 appointments for it next month just being pregnant, I'm a bit paranoid about it so looking for advice until then!

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…Please don’t worry it’s just with pregnancy they keep a very close eye on levels.

 

[Readread]

Sorry to butt in, just be wary that these food intolerance tests have no scientific basis what so ever and a lot are complete rubbish.

Yeah I'm sure they mostly are. It just seems strange that my symptoms match up to hypothyroidism and the test came back as such. Thank you though. I will report back!

 

[hettywainthroppp]

I know the feeling - it's seen as a minor complaint. The insomnia and fatigue make it difficult to have any type of relationship or social life. I'm too tired to take part in life sometimes. Because of it's up and down nature, I never know how I'm going to feel from one week to the next.

I feel you! My wake up time the last few weeks has been 3-4am, I find insomnia, leg aches, a skipping heartbeat, headaches and changes in my periods an indicator as to when I need to get my levels checked. I’m still only on 50mg, some days I feel great, most days I feel . I’ve lost so much interest in the things I really used to enjoy, and my most recent TSH level has come back at 2.2 even though I feel dreadful. I have an appt with the doctor today so hoping that they will up my meds based on symptoms alone, because they usually leave it until I’m barely crawling along

 

[crankypants13]

I feel you! My wake up time the last few weeks has been 3-4am, I find insomnia, leg aches, a skipping heartbeat, headaches and changes in my periods an indicator as to when I need to get my levels checked. I’m still only on 50mg, some days I feel great, most days I feel . I’ve lost so much interest in the things I really used to enjoy, and my most recent TSH level has come back at 2.2 even though I feel dreadful. I have an appt with the doctor today so hoping that they will up my meds based on symptoms alone, because they usually leave it until I’m barely crawling along

I reached breaking point a while back because bloods were “fine” but symptoms were out of hand. Finally the doctor agreed to increase medication based on symptoms alone, but it takes convincing and that in itself is exhausting when you feel so low.

 

[monga]

I’ve read those that are hypothyroid should avoid Saxenda or have very robust monitoring while on it.

 

[monga]

Yeah it was, I’m on medication and was told about there being a different type of medication that would be given during pregnancy with thyroid problems. Oh really! My Drs have never actually told me what the cause of having it is

Yes , if it’s graves for example that usually goes away in pregnancy as do many autoimmune conditions , the medication they give isn’t readily available as it can damage the liver so they keep a good eye on people it’s usually only given in the first trimester anyway, surprised they haven’t told you what conditions causing it, hopefully you’ll settle down soon and be able to start your family

 

[TwooTwooTwitTwitTwoo]

I can only speak for me but I tend to fluctuate and end up hypo on and off . I was hyper and put on neomercazole high dose and as it improved went lower dose. Regulated for while but went hypo and they increased it again to bring it back up. Will stabilize for a while and dose gets lowered slightly. Be going great for ages and then go hypo again. I will say I had a thyroid storm five years ago and it damaged my heart etc and am on other meds so that could be part of why I fluctuate.

Do you mind me asking what damage it did to you heart and how that came to be diagnosed? I'm having some tests done currently and I'm wondering if the issues I'm having might be connected to a particular episode of hyperthyroidism I had about a decade ago.

Sorry if that's too personal a question, feel free not to answer obviously!

 

[Begborrowsteal]

Got my latest results and my TSH has settled to within range apparently. It was 0.57 and now its 0.74 where their level started from 0.55 so it wasnt majorly out anyway (but T levels were ok?). She mentioned that it could be autoimmune thyroiditis? I feel like ive come away more confused

 

[knivesnflowers]

also, does anyone have experience with low thyroid symptoms, okay thyroid blood work but other abnormal results? they have only tested my thyroid levels for the past few months but did a fbc this time. i have high lymphocytes, high phosphorus and low folate. they did a mono test in the lab and that was neg, and i'm getting more bloods done next week but i think this combo has been causing my symptoms (assuming low folate means high homocysteine). now down a MTHFR mutation rabbit hole ...

update(ish) - no answers for now but the new bloods were for coeliac, parathyroid, vit d, renal profile, another fbc and another three mono tests. does anyone have experience of these issues alongside hashimoto's or general hypothyroidism? thank you!!

 

[TwooTwooTwitTwitTwoo]

thank you so much! I have been told Endocrinology want to see me 6 weeks post birth so sounds like everything is in place!

They seem to be happy that my levels are okay and I don’t currently need medicating which is great, just want to make sure all the right things are done to check on the babies once they are born as I believe thyroid problems can pass over.

Yeah they can. My first was born hypothyroid (his production was suppressed because mine was overactive) and was on Levothroxine until he was 4. He hasn't had any throid problems since though!

 

[monga]

Thank you so much, this is exactly what’s happening to me at the moment! My TSH receptor antibody test was positive and my TPO was high as well, I’ve been thyrotoxic before but it normalised without treatment and was presumed to be postpartum, the adrenaline rushes have been back for a little while but suddenly switched off and I started feeling weak, by the time I finally got seen my T4 and TSH are within normal range so I’m a little stumped over what’s going on, whether it could be Graves or just general hormonal fun

It could be both , it’s a bit of a rollercoaster when your hormones are messed up, if you’re not feeling any better keep going back to your GP that’s what they’re there for ,it can creep up .

 

[monga]

Has anyone here had thyroid issues during pregnancy?

I’ve never been diagnosed with thyroid issues before (despite suffering various symptoms in the past, including having a goitre! My levels have always been normal apparently)

I am currently in my 2nd trimester and expecting twins. My obstetrician decided to check my thyroid as I’ve been suffering with a very fast heart rate and palpitations, alongside severe headaches. He only tested my Free T4 I think and I got a phone call to say it is 23 and they would expect it to be no higher than 20 (I believe the levels may differ in pregnancy to the norm?)

He basically said he needs to contact the endocrinologist to see whether they want to medicate me or not as it’s not “ragingly high”. I’m just a little concerned of the risks associated with thyroid problems and pregnancy and I’m struggling to get answers out of anyone! If I need to be on medication I am more than happy to do so. And would prefer to do it sooner rather than later!

Any thoughts appreciated

It may settle down, most autoimmune disorders do during pregnancy ,if not they may offer medication under endo care and carefully monitored as some can cause liver problems in the mum, your bloods will be checked frequently.

 

[mcfeez]

It will be 4 years in September, they wouldn’t start me on levothyroxine until summer 2020 even though my symptoms had been setting in slowly since I had the op in 2018.
They agreed to start me off on 25mcg which helped initially but I soon started to fall back, so they upped it to 50mcg summer last year. My TSH level is currently 2.2 but my symptoms are as bad as they’ve ever been, it was 20 degrees here in the last week and I was absolutely freezing cold, it’s bizarre.
I suppose finding a good doctor that will listen is half the battle won isnt it.
I’ve even thought about going privately to see a specialist doctor, how long has it been since you had yours removed? Do you feel better since being on a higher dose?


Getting the doctors to listen is the biggest battle, I’ve also thought about going straight to them, but the doctor who removed my right side thyroid told me I’d never need levo! He was an endocrine specialist so I don’t have much faith in them either ‍

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.