Upset after autoimmune hypothyroidism diagnosis

[Fieldofyellowflowers]

Just been diagnosed with hypothyroidism. I've been told that it is probably permanent as antibodies showed up in the blood test.

The news came as a bit of a shock as until a couple of months ago, I havent had any symptoms. The only one that I have had is a swollen thyroid gland that swelled up in the space of one evening eight weeks ago, prompting me to go to doctors.

I don't know why I'm this upset about it. I know that there are far worse things to be diagnosed with. I know that it is easily manageable and isn't going to be life limiting or life shortening.

Is it Hashimoto's youve been diagnosed with? Ive recently been diagnosed too. I'm feeling a bit wobbly about it as I know autoimmune disorders can cluster together so generally overthinking things.
My GM has the same and rheumatoid arthritis and my DM has colitis so there is family history so I suppose I shouldnt be too surprised.

I’ve had Hashimotos for 10 years now. I don’t want to sugar coat it - it’s pretty crap at times. But it definitely gets easier to manage. Try to read up as much as you can. The majority of GPs will know less about it that you do. You will need to be assertive to get appropriate treatment. Consider going gluten free; I resisted it for so long but it’s the only thing that got it under control.
There are loads of knowledgeable women on here that can answer questions. There’s an autoimmune illness board within health. Reach out for support on here as much as you beee.

@thereinmadnesslies

I haven't been diagnosed with hashimoto's officially. The specialist today says that it is probably transient because I don't have symptoms but then went on to say it is probably permanent because I have antibodies. So he essentially told me that it is probably not permanent but it probably is permanent??? Which makes zero sense. He ordered a full blood work though so I'll know more once the results of that come through.

I have no symptoms which has flummoxed all the doctors I have seen so far. I have always been quite fit and healthy (e.g. no tiredness, no weight gain etc etc). This is why it came as such a shock.

I have Hasimotos. Diagnosed about 18 months ago following a private blood test, as was getting nowhere with the GP (although they have accepted the results).

Thyroid UK is a very good website, and it's also worth joining the forum on there as there are some extremely knowledgeable people. GPs are basically very poorly informed about thyroid disease in general, and will normally tell you you're fine as long as your TSH is in range. This isn't right. It will also tell you about antibodies, and how Hashimotos progresses.

You will learn loads from doing your own research.

I feel better than I did 18 months ago, but am by no means well unfortunately. I did go gluten free as it is recommended for Hashimoto's. I've felt slightly better since doing that, but not massively, however some improvement is better than none so I'm sticking with it.

Expect so called 'experts' (endocrinologists) to be almost as poorly informed as GPs - shocking but true. Some of the things you read on the thyroid uk forum are truly awful, makes you wonder if some of these medical professionals are actually taught anything about the thyroid!

@Ilovefluffysheep

Thanks. What has confused everyone is that my blood tests have shown antibodies, yet I have no symptoms. I am feeling very well in myself and that was before I went on medication. I literally thought that my health was in tip top shape before a random blood test flagged this up.

I think healthy defiance is a perfectly normal reaction. You have to get more info and understand how it works and how to manage it. And yes as you say its not life limiting. Is it likely to progress or will it stay stable?

You don't have to have symptoms OP. It's the bloods that determine it.

I've had hypothyroidism for many years. It's very stable now but was hard to control during pregnancies & postpartum.

Sometimes the symptoms have been problematic but it's fine. Take daily dose of Eltroxin and don't think about it.

There can be a lot of hysteria about it on MN I find.

@User258544

If it is autoimmune then it should stay stable with medication. The problem is that there seems to be loads of info out there tailored to those who are ill with it or experiencing symptoms. There is not so much out there for someone who has absolutely no symptoms but blood tests that are suggesting an autoimmune disorder.

I’ve had it since I was 16. I’m 33 now. It’s been stable since I was 18 including through 2 pregnancies (although did have to change my dose of thyroxine m) and has never caused me any problems. I don’t have any other conditions and am very fit and healthy. Haven’t changed my diet.

It’s understandable to feel shocked but really if you’re going to have any autoimmune condition it’s the best one to have, and doesn’t have to mean any changes to your life necessarily beyond taking some medication.

@EarringsandLipstick

Thanks. Spoken to the consultant again and they are going to do full blood work because they can't be 100% sure what's going on from the one my GP did.

@HarrietM87

Thanks. That's encouraging to hear. I think it is the not knowing that is getting to me at the minute. Once I get a definitive answer from a healthcare professional I'll know where I stand.

Good luck OP, consultant will sort it!

Regarding this:

There is not so much out there for someone who has absolutely no symptoms but blood tests that are suggesting an autoimmune disorder.

Obviously the autoimmune issue may complicate it, but re thyroid issues, symptoms don't necessarily have much relevance. It's what your TSH/T4 levels are that matter.

Now, others will disagree with this but here (Ireland) a change in symptoms prompts me to return to my doctor, but I get 6 monthly bloods done in any case which keep track of my levels & medication adjusted on that basis. I do pick up that treatment is possibly less clear cut in the UK.

I have hypothyroidism - and its not too bad. Honestly its fine, and the worst symptoms I have have nothing to do with my thyroid levels.
Before I was diagnosed my body was slowly shutting down - but levothyroxine is controlling it fine. There is no need to panic or read the stories of people who really struggle and think that will be you. It might not be.

Of course it might be at some point and its useful to know about Thyroid UK in case you need them some day. And you will learn about reading your own blood results etc.
Last time I had my bloods done the nurses was very practical and said that I probably know best what's happening, by how I feel. Thats far more reliable than the blood tests. But this is after learning again what feeling "normal" feels like.

I was diagnosed in my early teens which is uncommon, I didn't have any symptoms at the time. My dose of meds has gradually increased in the last 10yrs but not by a huge amount, I wouldn't say it's changed my life in any way.

It’s hard but you will be ok.

I’m 15 years diagnosed and it all feels straightforward.

Be warned, you will know more about your thyroid than many endocrinologists, thyroid treatment is in the dark ages.

Try stop the thyroid madness website. All you need to know is right there x

Thanks everyone. Feeling a lot better now

I have Hashimoto’s too and agree with everything people have said here. Been on meds for a year and barely think about it now. I can feel it flare up if I’m really stressed or been overdoing it but generally much more stable since meds. Gluten free does help, sadly, as does taking selenium supplements. I freaked out at first too and went down a bit of a research rabbit hole which can be scary. For all the bad stories there are loads of us who are stable. Good luck OP!

Also anything to heal your gut it hugely beneficial, especially if you are non symptomatic and not yet hypothyroid

I was diagnosed a few months ago as "sub clinical" but TSH was about 7.5, T4 11
They've treated it to get my TSH down to 4 but I don't really feel any different!
No side effects from the thyroxine

Be warned, you will know more about your thyroid than many endocrinologists, thyroid treatment is in the dark ages

I get that this is your experience but I can't agree with this, and it hasn't been my experience.

Some of the claims on that website (which is so poorly structured too) are outlandish.

My recommendation OP is to work with your doctors, as you are doing.

Just to say that I had abnormal antibodies once but no symptoms. Doctor said they would keep an eye. 6 months later, still antibodies but the value had gone down. Another 6 months and it was back to normal. 5 years later and it hadn't been an issue.

My GP said that hormones can mess things up. I was tested just as I was starting the perimenopause.

I have tons of autoimmune conditions and hypothyroidism is the one that gives me the least trouble. I had it long before I had the others - was diagnosed with it at 20 (I’m now 40). They just change the amount of thyroxine I take according to my blood tests. I’ve had a few arguments with endocrinologists where they’ve wanted me to be on a lower dose than I feel well on but other than that no issues at all. Two healthy pregnancies etc. Please don’t worry.