Underactive Thyroid.

[IMightCry]

Hello, I am in my early 30s and a week ago I was told that I have underactive thyroid. My mother has it so I always knew there was a chance but I did not think for one minute, it would be this early on.

I don't understand much about it yet but know its when things start slowing down. My body has been aching for about 4 weeks and my hands also hurting/numbness in my fingers (also pins and needles) I have been feeling extremely tired- but this could also be because of my work and how strenuous it is.

I am on lethyroxine now and I was talking to a friend earlier who said there will be good days & bad days. We couldn't go into depth that's why I'm posting on here. I don't understand. When will I get bad days? Will they be so bad that I can't do my strenuous job?

If anyone can offer any advice. It'd be gratefully received.
Thank you.

I've been on Levo for a few years now (like many 50-something women) and I'm not aware of good days and bad days in any way attributable to my thyroid since I've been on it. DH has hashimotos, he's had to get his dose adjusted over the years but again I don't think he has a 'good days and bad days' effect.

Once the medication has sorted your levels out, you'll basically be fine as long as you keep taking the meds and having your blood tests for monitoring.

It's not an up and down condition. I don't know what your friend was talking about.

Don't forget to ask your GP for the form so you can apply for a prescription exemption certificate.

My husband had his whole thyroid removed due to thyroid cancer, and so he's on levothyroxine too.
He doesn't get good days or bad days either.

If you're getting pins and needles or tingles then you might need your calcium levels checking. Your calcium is regulated by your parathyroid glands which might be affected.

I was diagnosed when I was 26, I'm now 43.
My symptoms included pain in wrists, cold, hosted and slept alot. sometimes I start sleeping more or I start losing weight and that's just a sign that I need my dose adjusting, I go between 100-125, sometimes it's 100 One day, 125 every other day. But it's not really a bad day.
I hold down a physical care related job and can be on my feet for hours, it's never stopped me working.

It's worth getting your blood results (the numbers) and tracking then against how you feel. The 'normal' range is quite wide, but you'll find your optimal range is narrower - it'll show up over time.

Hi,hopefully I will be able to highlight some stuff.
I was diagnosed 12 years ago at the age of 27.Had no family history of such and it was diagnosed at the same time as PCOS.
My main symptom was waight gain,from 7.5 st to 10.7 st in just 3 months,considering I was really active,cycling everyday to/from work etc.Can't remember other symptoms,was probably a little tired but had 2 primary school children.

Later on I noticed that I am very sensitive to cold and it was very hard to feel warm and comfortable,especially when there was stress involved.
Brain fog, tiredness to the point when you want to keep going but there is this mysterious force that is just pushing you towards sofa or bed,it's the most debilitating thing for me.
Underactive thyroid had huge impact on my mental health until I just figured out that I have to be absolutely religious about daily dose.I am quite forgetful ( thanks to my thyroid as well) and it was a challenge to remember to take it first thing in the morning on empty stomach.
I just had my bloodtest and it showed my TSH level was really high so I promised myself that I have to be consistent(I was told that if I ignore my thyroid problem it may lead to coma/death and it was enough to have a word with myself.
As I've mentioned,I was diagnosed with underactive thyroid and PCOS at the same time and was devastated as the doctor said that having more children naturally will be practically impossible .However,I did conceived 2 more DCs,all well and they are healthy,were tested after birth and they are both fine.

What are your tsh and t4 levels?

I have an underactive thyroid. How I feel is directly related to the levels. So I think finding this and keeping track of your test results is really important.

Thank you to everyone who has replied. You've all made me feel massively better.
I'm glad you've all cleared up the good & bad days situation. I was worried that it would affect my ability to work.
@user194729573 I didnt know about the exemption, so thank you for that.

@Ohladedah I will ask for my results in future. I think it may help.

@LookToTreblesGoingTreblesGone I hope your husband is okay? I was told the pins & needles/numbness was Carpal Tunnel which is a symptom of Hypothyroidism?

@3JsMa Thank you for going into depth. I have also noticed how cold I am lately. I am rubbish at taking pills as well but I will try my ultimate best with this one.
Its positive to know you was able to get pregnant again & that your babies were healthy. I cried for ages thinking it would hinder my chances as I noticed I haven't been ovulating. X

@Plussizejumpsuit

What are your tsh and t4 levels?

I have an underactive thyroid. How I feel is directly related to the levels. So I think finding this and keeping track of your test results is really important.

Unfortunately I never asked but I will next time in 7 weeks.

I had an overactive thyroid 30+ years ago which was operated on and then became under active (far better then over active) 10+ years ago.

You must take the Levo with water at least 30 minutes before you drink anything caffeinated. It will take a month or so to build up yr levels. At yr next blood test they will be able to see yr progress and adjust accordingly.

It will be fine. There are no good days or bad days it’s a wholly manageable condition 😀 oh and you get free prescriptions so need to fill out the appropriate forms.

I had a coil inserted 1 year prior to my diagnosis.I kept forgeting about it and finally decided to remove it in Aug 2012 (3 years after diagnosis) because there was no point of it really.
So didn't have period for 4 years,not really sexually active as my EXH was a bit cold anyway.And then out of the blue and a month and a half later I was pregnant.Was really happy but shocked as heck.

Yeah I'd ask for print outs of your test results each time. Unfortunately what actually feels like a good level and what GPs think is acceptable are often different.

Eg lots of thyroid support groups say your tsh sould be below 1 but most GPs juat settle for it on the normal range ie below 5.

I don't thins to sound bossy and doomy. But with any long term health issue you need to manage it yourself and learn about it. As unfortunately with many health conditions you will get the minimum support. So learn about what the results mean and what impact the medication has. As well as what else effects your condition.

There ar several hormonal and vitamin /mineral levels which can be effected by your thyroid or often go hand in hand with thyroid problems. It's worth getting these checked too. For example I have very low vit d and b.

This can be hard depending on your GP. I've had to push a lot and still feel I'm not on the right levothyroxine level. Good luck!

@KittyMcKitty

I had an overactive thyroid 30+ years ago which was operated on and then became under active (far better then over active) 10+ years ago.

You must take the Levo with water at least 30 minutes before you drink anything caffeinated. It will take a month or so to build up yr levels. At yr next blood test they will be able to see yr progress and adjust accordingly.

It will be fine. There are no good days or bad days it’s a wholly manageable condition 😀 oh and you get free prescriptions so need to fill out the appropriate forms.

I mean with all respect that's your experience that there are no good or bad days. Some people have a really difficult time with an under active thyroid. Levels of underactivity can vary wildly.

Plussizejumpsuit if dosage levels are right then the patient is stable surely? I take 175mcg of levothyroxine a day so quite a high dose. If you are taking the levo correctly (and many aren’t re caffeine) then you aren’t going to get daily fluctuations.

I’m not dismissing people’s experiences (I have spent the majority of my life with thyroid problems) but an under active thyroid is significantly preferable to an over active and as long as doseage levels are correct (and the UK guidance isn’t always helpful as we under medicate compared to eg USA) then the OP will live her life normally - she is worried about being able to do her job and needs reassurance surely.

@IMightCry

Thank you to everyone who has replied. You've all made me feel massively better. I'm glad you've all cleared up the good & bad days situation. I was worried that it would affect my ability to work. *@user194729573* I didnt know about the exemption, so thank you for that.

@Ohladedah I will ask for my results in future. I think it may help.

@LookToTreblesGoingTreblesGone I hope your husband is okay? I was told the pins & needles/numbness was Carpal Tunnel which is a symptom of Hypothyroidism?

@3JsMa Thank you for going into depth. I have also noticed how cold I am lately. I am rubbish at taking pills as well but I will try my ultimate best with this one.
Its positive to know you was able to get pregnant again & that your babies were healthy. I cried for ages thinking it would hinder my chances as I noticed I haven't been ovulating. X

My husband has to have his calcium levels checked regularly due to Hypoparathyroidism. It's a very easy blood test that might be worth asking about just in case. And thanks for asking about my husband. Unfortunately he's not okay. His thyroid cancer is of a type that's incurable and it's now spread to his other organs. But he feels well at the moment so there is that

Hi @IMightCry
I can’t offer you any advice but I’d like to follow this thread as I am having a blood test for this next week.
I am 36, my mum and her sister both had under active thyroid diagnosed within the past 4/5 years. They both told me to get tested but I didn’t bother but now I am showing some symptoms so best to get it checked. I thought I was too young.

@LookToTreblesGoingTreblesGone I’m so sorry about your husband I hope you are able to make the most of his well moments but I’m sure that’s not easy during a pandemic.

• They both told me to get tested but I didn’t bother but now I am showing some symptoms so best to get it checked. I thought I was too young.

There are different causes of under active thyroid. It's pretty common in women from about menopause on, but DH's hashimoto's an autoimmune condition, he was diagnosed in his 30s. One of his uncles had congenital thyroiditis, ie from birth.

So, whatever your age if you've got symptoms it's worth getting checked, easy to do and it's generally one of the easier conditions to treat - with bonus of free prescriptions.

Thank you @ErrolTheDragon
I’m having a wobble over being medicated for the rest of my life. Stupid, I know, if it means I will lead a normal, symptomless (more or less) life

@LookToTreblesGoingTreblesGone I'm so sorry its incurable. I'm glad he's feeling well at the moment. ❤

@Fiddlersgreen Good luck with your blood test. Hopefully you don't have it but if you do, sounds like you have a good family to turn too with experience. My mother has it but is very much in denial. She is no help during this time!

Someone on here mentioned being low in Vitamin D. Does this generally go hand in hand? I was also told that I am severely deficient in Vitamin D.

Also, how do I get the forms? Does my doctor need to sign it off?

@Fiddlersgreen

Thank you *@ErrolTheDragon* I’m having a wobble over being medicated for the rest of my life. Stupid, I know, if it means I will lead a normal, symptomless (more or less) life

I have been feeling like this for the last week or so. Please come back and post on here if you need too.

It's rather different to some medications because it's pretty much just making up for something we're not making enough of ourselves naturally. For me it's not fundamentally different to taking a vitamin D supplement at an appropriate level for the season.
Taking too much can be a problem - as PP have noted, overactive thyroid is more problematic than under active - which is why there's usually some degree of caution adjusting the levels, with a tendency to undershoot in the U.K.

I was diagnosed as having an under active thyroid after my first baby at age 31. I was feeling just awful, tired, achey, but I was still my normal weight of around 48kg so i wasn't tested for it until I asked to have my thyroid checked, doc was certain I couldn't have it as I wasn't overweight. But my Nan, mum, sister and also aunts and uncles on the other side of my family all have under active thyroid, my mum had urged me to ask for the blood test as she recognised the symptoms. My sister was diagnosed when she was 19.

The first time I collected my prescription the pharmacist asked for my exemption card and I had to go back to the dr to get him to fill out the paperwork.

I feel great on my levothyroxine, no good days and bad days, I am pregnant again so being monitored every four weeks as it's risky in pregnancy, im increasing my dose steadily. I'm under consultant care but hope to be discharged and have a natural birth.

Sometimes an under active thyroid is due to an autoimmune condition called Hashimotos

This is when your own immune system starts attacking your thyroid which means it can’t function properly and therefore becomes under active

This is what I’ve got, and unfortunately it does mean I get good and bad periods, because my thyroid function fluctuates
The medication dose that is good one month when my thyroid functions is then too low when it isn’t functioning, and therefore I feel a bit shit for a few weeks until I work out what is going on, then get a blood test, then get a medication review, then get my dosage altered

So you should ask your doctor if they’ve done an antibody test to establish if you have Hashimotos and if you have, tune in to your body

The things that have helped me stablise my Hashimotos:
Going strictly gluten free
Taking supplements (Holland and Barrett do a specific ‘thyroid support’ one) including a high dose of vitamin d - 6,000 a day leaves me in the mid-point of the range. Any less than that I am quickly become deficient

I have an underactive thyroid. I was diagnosed when I was 12 with no family history, my mum thought my neck looked funny one day and took me to the GP!

Once I got my levels under control I've felt great since. If I am forgetful with my tablets (I remember periods of teen rebellion, gap year etc where I was really bad at taking then regularly) I can tell my levels are off due to foggy brain, palpitations, freezing cold etc but that is only over a longer period of not medicating.

As mentioned, I also had to adjust my dose and was monitored monthly in pregnancy. I have a really great consultant - it can be really useful to have someone with specific thyroid expertise when you're trying to set a dose initially.

@Sparechange

Sometimes an under active thyroid is due to an autoimmune condition called Hashimotos

This is when your own immune system starts attacking your thyroid which means it can’t function properly and therefore becomes under active

This is what I’ve got, and unfortunately it does mean I get good and bad periods, because my thyroid function fluctuates
The medication dose that is good one month when my thyroid functions is then too low when it isn’t functioning, and therefore I feel a bit shit for a few weeks until I work out what is going on, then get a blood test, then get a medication review, then get my dosage altered

So you should ask your doctor if they’ve done an antibody test to establish if you have Hashimotos and if you have, tune in to your body

The things that have helped me stablise my Hashimotos:
Going strictly gluten free
Taking supplements (Holland and Barrett do a specific ‘thyroid support’ one) including a high dose of vitamin d - 6,000 a day leaves me in the mid-point of the range. Any less than that I am quickly become deficient

I have Hashimoto's too. It will be 2 years in April since I first had my private blood test that confirmed it (GP was useless). Like you, I also went fully gluten free last April (my husband did too to support me, and it has cleared up his acid reflux which is a bonus!).

I was put on a starter dose of 25mcg levothyroxine, it did nothing. In that time I've worked up to 150mcg, GP won't up it any more as TSH has gone under range and they are obsessed with TSH without taking anything else into account. I've now started adding some T3 medication which I bought on holiday in Greece in 2019 just in case, as it is practically impossible to get here because the NHS won't prescribe it because of cost.

I've gone from feeling utterly horrendous to just feeling unwell. There is no way I would have been able to hold down a job during this time, luckily I'm already medically retired thanks to a totally unrelated issue which is a good job.

Posters on here are right in saying that generally, when the right level of medication is reached then people will feel ok. However, that doesn't happen in every case, like me, and as a country thyroid conditions are dealt with very badly, particularly if they are auto-immune.

Vitamins play a very important part as they can be linked to how well your thyroid converts T4 to T3 (T4 is a storage hormone, T3 is an active hormone which is essential for your thyroid to function properly). The ones to concentrate on are Vitamin D, Vitamin B12 and ferritin.

Thyroid UK has an excellent online community where there are some very knowledgeable people. I have learnt so much about how thyroids work, tests, medication, how poor GPs are etc etc, and about how to help myself.

I'm not typing this to scare the op, but more to make them aware that while you'll hopefully be ok as the majority of people are, it's well worth learning what you can and being able to self-advocate, particularly with GPs. One of the most important things to do is get a copy of your results every time, which you are perfectly entitled to do. GPS are generally happy if you're "in range", however these figures whilst maybe suiting the majority don't suit everyone.