Hashimoto disease

[ash0987]

Hello, I'm all new to this so I wanted to know how others are dealing with this disease. At 32 I'm just been diagnosed with Hashimoto disease. My thyroid readings are very good at the moment and my readings of antibodies is 287. Due to having a lump in my neck that's how they diagnosed me. They said they can't give me medication until my antibodies reaches the 1000?
I just wondered how long it takes for the disease to progress? Is there anything I can do to keep the antibodies numbers down for a while?

Hashimito's progresses very slowly- think years, do you know your TSH level?

Supplemental selenium is recommended for Hashimoto’s. Slow down on the sushi (seaweed) and other iodine heavy foods if your diet contains such foods.

Definitely talk with your endocrinologist about selenium.

My mum was diagnosed with Hashimoto’s about 30 years ago. She’s 88 now and going strong. Prior to diagnosis and management, she battled her symptoms. Diagnosis gave her access to treatment which has really given her the gift of a healthy later life. Over the years, she’s had to have a recurring thyroid cyst monitored then drained then monitored then drain, rinse and repeat. The cyst hasn’t recurred in years though and her old age seems to be untroubled by her Hashimoto’s. I’m sorry my post isn’t too insightful or helpful. But I hope that it’s, well, hopeful! ☺️

My 13 year old DD has just been diagnosed with hypothyroidism so we’re on that diagnostic pathway now. It’s scary but the majority of people with thyroid issues live very well and long lives. You’ll be one of them, OP. I think it’s all about self discipline and good clinical management. Because thyroid issues are rife among the Irish population, the UK has the best endocrinologists in my experience and humble opinion.

Thank you for getting back to me. My TSH is 2.44mu/L . I'm still having a scan and biopsy just to rule out, it's not cancer . Although my doctor doesn't believe it's that. But just wants to do the rest tests just in case. So I'm positive it's not. So I'm stil early stages of being diagnosed and very knew it all. just seems like it's all abit confusing at the moment. I'm so sorry your 13 has hypothyroidism, hope he's doing okay with it?
did your mum deal with much pain over the years due to hashimoto disease? My mums got lupus. So the immune diseases must be genetic.

Your TSH levels are pretty good, the NHS generally doesn't medicate until TSH reaches 10. It's good that they're doing a scan, I was diagnosed due to antibodies however didn't have a lump. It's not a life limiting illness straightforwardly, although once your TSH gets a bit higher they will put you on levothyroxin and you'd be on it for life.

That's really helpful to know thank you. How long have you been diagnosed with it for?
i just didn't want to get poorly with it. But it's obvious, I'm at very early stages. So will have a while untill it reaches for medication.
was your antibodies high reading when you first got diagnosed?

Thyroid UK website has lots of useful information. You'll also find a link on there to the thyroid section of the Health Unlocked forum, where there are a lot of very knowledgeable people who can give you advise.

GPs and endocrinologists in general are very poor regarding thyroid disease. If you start getting symptoms, you can fully expect to be gaslighted and told that your numbers are normal, so it's all in your head, or it's something unrelated to your thyroid (highly unlikely).

I've been diagnosed for a few years now. I had to get a private blood test for antibodies, as it's unusual for the NHS to do it. It's been a long road, but I wouldn't be where I am now without all the help I received on Health Unlocked.

I don't know what my antibodies are, was feeling really tired and getting infections all the time, etc and they discovered it following blood tests. They tested TSH level every year (you do have to ring to arrange often), and once high and symptomatic put me on levothyroxin. I haven't ever seen an endocrinologist.

You shouldn't get poorly with it, although I'm not a medical expert and of course get it investigated like they're doing. It's very manageable, although try to keep a healthy weight as it can go alongside high blood pressure and high cholesterol. When you start levothyroxin you might get palpitations etc whilst your body gets used to it.

thank you for giving more all this information. I had the flu beginning of Jan. I believe that's what set it off. After feeling pressure in my neck then the lump. I hoping it's fluid that can be drained as it's an awful sensation. I hopefully I've go a while yet untill I start medication. I'm just going to keep positive and keep a healthy diet. Although I've heard it's extremely common this disease? I suppose after the scan. I will have more information about what happens next. I do feel lucky to be diagnosed at an early stage.

I've had it for 20 years and live very well with it on the whole. I just take my levothyroxine daily, have a blood test annually and don't really think about it. BUT I put my wellness down to early diagnosis and treatment - I had private healthcare at the time and they put me straight on medication when the NHS had said I was 'subclinical' and didn't need it. I was exhausted. The NHS gaslight me about it and refused to treat me until the private endo wrote to them. He told me that the antibodies themselves can cause symptoms (as well as damage to the thyroid) and that levothyroxine will help to suppress the antibodies. I know people who have waited years to meet the NHS threshold and they became very unwell - depressed, exhausted, overweight. It's hard to regain wellness once it's gone that far.

The NHS is pretty crap with it to be honest, I was subclinical and symptomatic for a long time, kept having a yearly check and they said yes it's going up, come back next year. Got to 9.5 and were saying come back next year when it will probably be over 10, I was fed up and insistent that they do something, so because it was so close to 10 they reluctantly agreed. I'm not sure why but once you're on levothyroxin all your other prescriptions are free (you get a medical exemption card), so I wonder if part of the reluctance to put you on it is down to finances.

My DD has it.

It took a long time to get diagnosed and she got very unwell.

She still has significant pain and fatigue years on.

Private health care for me isn't possible. I've got 4 kids with the youngest being 2! I'm so worried about getting poorly with it.. this it was I was worried about.

No need to worry, sounds like your doctors are on it, just might need to advocate for yourself if necessary.

Thank you everyone. Hopefully I get my appointment for my scan quickly & find out what the plan is. Really appreciate all your reply's. Now I feel less in the dark :)