I’ve had a multinodular thyroid goitre for six years and it has never grown. It is also retrosternal on the right side which is slightly worrying. I Have never been hyper or hypo. However this is my fourth pregnancy and my blood tests how that I am hyperthyroid. I also had an ultrasound done which shows my goitre has increased slightly.
My endocrinologist has put me of 15mg of carbimazole.
My first blood tests results showed:
Free T4 25.9 pmol/L
Free T3 7.9 pmol/L
Had my blood tests done a week later and it had increased to
Free T4 36 pmol/L
Free T3 11 pmol/L
Which is why I was put on medication, which I would’ve preferred to have avoided.
I have little hyperthyroid symptoms. Just a slight tremor on my hands and maybe a little shortness of breath. My dr wants my thyroid completely removed after I’ve had the baby. I really want to avoid this.
My questions are:
Do I really need to be on this medication?
Is it really necessary for my whole thyroid to be removed.? Is there any possible way of saving my thyroid?
Thank you,
Written by
Ayesha83
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I personally would not have your thyroid removed and I would control your levels with Carbimazole. I was advised to have my multinodular goiter removed 10 years ago and decided against it because I have seen how other women have struggled to get the correct treatment afterwards. I know some people who have been on Carbimazole for many years and are ok as long as they have regular blood tests. Elaine Moore had RAI and regretted it so she started a support site which has helped me a lot.
Yes I really want to avoid it but my endo scared me when she said it’s retrosternal. I have a feeling it’s grown due to pregnancy and feel it will get back to normal after so I will try to avoid having it taken out.
I think that advice from the 'horse's mouth' would be best as they've gone through all of the turmoil and it is how well the person who has had the thyroid gland removed progressed after its removal
I was diagnosed with Graves Disease - hyperactive thyroid - back in 2003, and prescribed Carbimazole which suited me well and my symptoms of exhaustion, dry gritty eyes and insomnia were resolved within a couple of weeks.
As someone who was told I needed to drink RAI to burn out and disable my thyroid in situ because it was too dangerous to stay on the Carbimazole I went ahead, as I wasn't actually given any options.
I have to say that knowing what I know now, and the troubles I have experienced obtaining wellness through the NHS, if given my time again, I would say No Thank You - I wish to stay on the AT medication and play for time.
I'm now self medicating and having to buy my own full spectrum thyroid hormone replacement as currently the NHS routinely, only offer one medication which doesn't necessarily work for some people who are dealing with thyroid AI disease and especially those who have had their thyroid removed, either by surgery or RAI ablation.
Play for time, and when you have your lovely baby and things settle down if your levels don't resolve afterwards, regroup, rethink, and do further research.
Thanks so much for your reply pennyannie. I really appreciate your response. Feel really pushed into getting it removed but I will definitely play for time!
There’s so much to research. I’ve been researching for years but now I’m hyperthyroid it’s a whole new field to look into :).
Why were you researching previously - did you think your thyroid hormone production might have become compromised
I guess with any medical condition you can get frightened and doctors don't necessarily speak in a language you understand and are paid to follow guidelines :
It's not their thyroid and if the tables were turned they may not be so " gung-ho " :
You can stay on the AT drug long term - it isn't encouraged as it's more expensive long term.
With soon to have four children I think you'll need all the help you can get and not be debilitated further if you don't need to be.
No I was researching how to reduce my goitre and get rid of my nodules. The hyper has only appeared in this pregnancy. I’ve never had any other symptoms apart from my goitre for six years. The problems of it growing and going hyper have literally come in the last few weeks since I’ve been pregnant .
You’re so right about the doctors. It’s like they don’t want to hear anything apart from removing my thyroid . When I try and raise any questions they shut me down straight away.
Exactly I don’t want to be in a worse situation and you’re right with four children I will be even more stretched! My endo keeps saying to me “you have to think of your children” 🙄. It’s as if she’s saying if I don’t have my thyroid out I will die!
I don't know enough to say anything sensible about your current condition but if you can get through with as little medical intervention as possible and play for time this would be my first option every time.
Definitely agree with you! This is what I’ve been doing for years but because it’s grown and now gone hyper so they are pushing me to have it out, but I won’t do anything in haste and will avoid for as long as I can. Thank you
There is an alternative to Carbimazole that maybe worth looking into considering that you are pregnant :
Propylthiourcil - yes I know - PTU for short - it's an " older drug " and yes, it also has side effects but think you need to read around both of these anti thyroid medications.
Yes I was in PTU for my first trimester. I was switched to carbimazole in my second trimester.
I did google both the medications but ended scaring myself . I don’t really have a choice but to take the carbimazole as I’ve been told if I don’t get my numbers down it could result in a miscarriage and this is the safest medication for this trimester.
Thanks for the idea though I’m hoping my numbers will go down and I can completely come off medication. Not sure how realistic this is though! Really hate taking anything when pregnant
Keep your thyroid as long as you can, the situation without it is a lot worse than what you have now.My multinodular goitre was unbearable and I had no option that have it removed. It also went retrosternal and was clinging on to scar tissue from 2 previous operations. I also opted for RAI which I now know to be a bad choice, but it seemed ideal at that time.
Oh my gosh Panda321 That must’ve been awful for you!
This is what I’m worried about. It may keep growing downwards towards my lungs. I’m going to try and cling onto it as long as I can. Would love to try and shrink it. I think I’ll have to look into my diet and some other alternatives.
I think once you start resting your goiter from being over stimulated the swelling might go down. Sometimes my goiter has felt swollen and I have choked on food etc. but it has not got that much bigger after 10 years. At the moment I am in remission but I do know not everyone has this outcome. Sometimes if your goiter becomes too big and interferes in your breathing or eating you will have no choice but to have it removed but I don't think you are at this stage at the moment. If I was you I would see what happens once you start taking Carbimazole and your levels reduce. Also join Elaine Moore's site and ask her what she thinks because she has helped me get to where I am today.
Yes you’re right Lora7again! I feel like it’s swollen due to the pregnancy and hyperthyroidism. Hopefully it will go back to normal when my levels have reduced. I can feel a slight tightness in my throat but thankfully haven’t had any other symptoms of choking or not being able to breathe.
Will definitely join Elaine Moore’s site! Thank you so much for all your help. It’s so nice to feel like you’re not on your own and there are lovely people out there to help
Hi Ayesha, Congratulations on your pregnancy . I hope this continues to go well.I have had a multinodular euthyroid goitre for 17 years, now with some retrosternal extension. It has grown slowly but steadily in that time and I don’t like it! It is visible.
However the surgery terrifies me and I suffer with severe medical anxiety.
I am interested in the newer therapies for shrinking goitre, including various ablation techniques. I have read this has been approved on the NHS but the literature is mixed on whether it can be used on retrosternal goitres.
The only firm exclusion from Radio Frequency Ablation is malignancy and the results look fantastic and you keep your thyroid. I have read medical papers written in Italy where this technique has been used to shrink retrosternal goitres. So in theory it can be done..
However I can’t find much on the non surgical treatments for retrosternal goitre but its worth investigation.
Really interested in your story as it’s very similar to mine! My goitre and nodules are very big and can be seen clearly on my neck. I’m sure they’ve grown through each pregnancy!
I wasn’t too worried about mine until I found out it was growing retrosternal. Of course my endo frightened the life out of me but after I got home and gathered my thoughts I was able to calm down and do a bit of research.
This RFA treatment really interests me! I would absolutely love to go down this route! I’ve only just started researching it but I have a feeling as I have so many nodules they may decline. But I’m definitely looking into it. Honestly anything other than removing my whole thyroid! I think it’s so brutal to just take the whole thyroid out and then you’re stuck on meds for life and hypo forever.
Do update me on any new info you find and I will do the same
It’s so nice to hear that other people are going through the same thing! Makes me feel less alone
Hi Ayesha, I will do that and you do like wise. I wish the new non surgical techniques had come out years ago, when my goitre was much smaller. I know now with my retrosternal goitre it will now be potentially harder ti reach. However any shrinkage of those nodules at the front of my neck would be something. I just feel very disfigured ( but appreciate there are worst things). I have read that shrinkage of front nodules can ‘pull up’ the retrosternal component. Keep me posted please.
Yes I’m sure soon in the near future they’ll have less invasive techniques rather that yanking the whole thyroid out! It’s a shame it’s taking so long!
Yes exactly any shrinkage would be massive for me too!
That’s promising about the shrinkage of the front nodules pulling the retrosternal up. It’s the retrosternal part that’s the problem! It’s really worrying if it keeps growing downwards!
Will keep you posted and thank you for your message.
Yes it’s encouraging news. Other articles say they won’t do ablation techniques on retrosternal goitres as they can’t see as well. However I am hopeful of this technique being improved over time as there are people who are elderly or who can’t have anaesthetics but are experiencing compressive symptoms etc so my point is, how are they treated?
I am absolutely terrified of surgery and medical tests in general. I know my goitre will keep growing but don’t want to see a Thyroid Surgeon who will scare me and bully me into surgery.
Yes you’re right! They definitely need to improve. It’s shocking that thyroid patients are treated so badly and given so little choices. I really do hope it improves! I worry about my children having thyroid problems when they’re older but hopefully there willbe improvements by then.
It must be awful to be so terrified of surgery yet have no other alternative! I really hope it works out for you Lamorran.
I feel bullied too. For years they’ve been trying to get me to have my whole thyroid out but I won’t give into them until I choose to do so and when there’s no alternative.
I know mine will grow too! I have heard of people shrinking their nodules through diet and other methods but I do think mine has grown too large for that now.
Anyway really hope it works out well for us! Will keep in touch 👍🏼
Remember that when they are advising removal, or Radioiodine ablation as being 'preferable' .... a huge part of their guidance for this reasoning is to do with it being preferable for NHS long term finances. Monitoring you properly for years under an Endocrinology dept. to keep tabs on the size/location of it, watch for remission, and treating with antithyroid drugs in the meantime, will cost more than disposing of the offending thyroid and putting you on Levo, and pushing you back to a 'primary care' GP who will only have to do one blood test a year and spend about £20 (?) a year on Levothyroxine.
Your future finances from whether you can still cope to earn any money, or have enough energy to fix 4 packed lunches, and cook dinner from scratch because it's cheaper etc , are not a factor in their guidance.
If you feel scared by what they tell you at appointments , make sure that your fears are based on medical facts/risks about your individual condition, rather than financial ones about their budget.
I have read the NHS guide lines where RIA is suggested as the preferred option for many cases. But these guidelines are basically formed to balance evidence of effectiveness for a treatment, against value for money for the NHS.
You need to work out your own 'guidelines' based on balancing evidence for a treatment, against your current/future health risks.
But it sounds like you have already figured that out.... keep it if you can .... It seems perfectly logical to me that you should wait for at least a year after the birth to see what you body will settle down to after a pregnancy , which i have read can temporarily increase the size of the thyroid in some people to cope with the extra demands of pregnancy. I realise yours might be different to that because it's started over producing hormone's and grown an odd shape too , but still , 'watch and wait' sounds better to me than 'get rid of it and move her on to the GP's list'
The following is from a paper studying HypOthyroidism in pregnancy ,So different to your problem, but maybe it does give a little hope ? that you could reasonably expect size to get bigger during pregnancy and smaller afterwards...just a thought anyway:
Thyroid Physiology in Pregnancy
Thyroid physiology is perceptibly modified during normal pregnancy. These alterations take place throughout gestation, help to prepare the maternal thyroid gland to cope with the metabolic demands of pregnancy, are reversible post-partum and the interpretation of these changes can pose a challenge to the treating physician.
The most notable change is the increase in thyroxine-binding globulin (TBG). This begins early in the first trimester, plateaus during midgestation, and persists until shortly after delivery. This is due to stimulation of TBG synthesis by elevated maternal estrogen levels, and more importantly, due to a reduced hepatic clearance of TBG because of estrogen-induced sialylation.[1] This increased TBG concentration leads to an expansion of the extra-thyroidal pool and results in elevated total T3 and T4 levels due to an increase in maternal thyroid hormone synthesis. Maternal thyroid hormone synthesis is also increased due to an accelerated renal clearance of iodide resulting from the increased maternal glomerular filtration rate.
Enhanced metabolism of T4 in the second and third trimesters, due to a rise in placental type II and type III deiodinases, which convert T4 to T3 and T4 to reverse T3 and T2 respectively, act as further impetus to T4 synthesis. Plasma iodide levels decrease due to both increased thyroxine metabolism and increased renal iodide clearance.
All these changes lead to an increase in the size of the thyroid gland in 15% of pregnant women, which returns to normal in the post-partum period.
Serum hCG has intrinsic thyrotropic activity, which increases after fertilization and peaks at 10 to 12 weeks. Hence, in the first trimester , free T3 and T4 levels increase slightly and TSH levels decrease in the first trimester with a readjustment in the second and third trimesters, when hCG levels decrease. As a consequence, cut-offs to determine hypothyroidism in pregnancy are different in the first trimester and the rest of the pregnancy.
Thanks so much for your informative message. Really appreciate you taking the time out to reply and send me the interesting info about pregnancy and the thyroid!
I didn’t know that about their budget! Makes complete sense.
That’s exactly what I was going to do! Try and wait at least a year to see if it calms down and shrinks a little.
Really interesting information on that paper you sent and makes complete sense to watch and wait a while rather than just removing the whole thyroid.
I went to see my endo yesterday and my T4 has come down to 20 . T3 is 7.9 so still slightly high so she’s told me to reduce the carbimazole to 10mg so that’s good news.
In my third pregnant my TSH was low but settled itself. I told endo this yesterday. She assured me in no uncertain terms that I will most definitely be hyper forever now and it will never calm down 🙄. They really do love to give you the worst possible scenario! I smiled and left 😆
Thanks so much for your message! Has given me some hope and helped calmed my fears. Good luck on your journey !
Really nice of them to be frightening pregnant women like that, just what you need .... NOT.
Since it seems your endo is so sure she knows the future, would you mind popping back in and asking her when the world will be getting back to normal, and whether i can get away with keeping my old plumbing for another winter, or will my pipe burst this January ?.
It would be really useful to know in advance..... thanks.
'Sarcasm~off'
Out of interest , (sorry to be using you as a guinea pig to feed my thirst for knowledge, but ... )Have you got raised TRab ? ,(Thyroid Stimulating Hormone Receptor antibodies) the antibodies that show up in graves hyperthyroidism.
Or have you just gone 'hyper' from some other ?pregnancy reason
Not that it makes any difference to your current treatment , they needed to get your levels down so they have.
Ha ha ha! Well seeing as she knows I’ll be hyper forever it would be worth a try to ask her about your boiler! I’m sure she’ll have the answers 🙃
They tested my antibodies and came back negative so she said it’s the largest toxic nodule which has made me go hyper. I asked her if I had a hot/autonomous nodule as that’s what she was suggesting but she said she wouldn’t know unless I had a radioactive iodine uptake test done, which I do not want to do either! So I’m assuming one dominant nodule has gone haywire and is now producing too much ???
Well , not that i'm as good a fortune teller as your Endo , but .... i believe 'no TRab' is normally a good sign when it comes to prospects for remission in hyperthyroidism.And we all know how much being pregnant messes with everything . so seems logical it would mess with a nodule when you are , and stop messing with it when you're not.
So ..... i'll be reckless and bet you 50p that we're right and she's wrong.
just keep thinking nice calming thought's , and put earplugs in next time you have to see her.
(She won't notice , they never look at you anyway ,lol)
😁😁😁 wow that’s good news! And guess what she told me. If I had Graves I’d be able get better with the hyper but because it’s a nodule playing up it will always be hyper.
Yes exactly! Pregnancy messes you up in soooo many ways! All those hormones! It just makes sense that’s why everything is out of whack at the moment.
Lol 50p!! Let’s see 😜.
Ha ha yes I will take her with a pinch of salt from now on! Love your humour 😆. Thanks tattybogle!! Really appreciate that!
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