Anyone got hashimotos disease? Just been diagnosed and have so many questions.

[HashiMeTho]

Am feeling very overwhelmed.

Had subclinical hypothyroidism for years and latest bloodtest shows it is now just full hypothyroidism.

Antibodies tested and they are 485 (range o f 35> for positive)

Dr has just put me on 50mg levothyroxin and thats it. No explanation of anything.

So I've been googling and am in a tailspin.

I am always cold. Always, always tired. My eyes always hurt. Constant headaches. Gut issues (especially gas pain)

And my skin issues are crazy (will include a few photos but warning they are graphic) Gps have said pompholyx or pustular psoriasis.

I keep reading about going gluten free (but i just had a coeliac test which was negative) and not eating soy, sugar, processed foods or potatoes or eggs?!

Surely that can't be true, what is there left to eat?

I also have depression, anxiety, OCD. PTSD and don't look after myself very well at the best of times so cooking from scratch for myself everyday is just impossible.

I just feel so worried!

My DD has hashimotos.

feeling cold and tired should resolve as the levothyroxine works. It can take some time to kick in.

skin issues may or may not be related.

Another post, sorry

she is not gluten free or dairy free.

she has discovered she is soy intolerant.

I’d suggest trying eliminating things from your diet one at a time and seeing how it goes. It can take some time for your bowels to settle down after an intolerance.

I have had hashimotos for 16 years. I was started on the same dose as you and it was gradually increased to 125 daily. I now just have annual blood tests.

I’m still a cold soul but otherwise I think I’m fairly well controlled. I eat a full diet and exercise regularly. I am gaining a few unwanted lbs but put that down to being in my late 40’s rather than my thyroid.

I’m pretty sure I have it as when tested last my readings were 1000, however when I eventually spoke to a doctor about it and starting medication they advised me they don’t recognise it really and just treat with thyroxine; probably should of questioned it but never did 🤷🏻‍♀️

Hi! I have hashimotos which came on after first pregnancy and have had it for 11 years. I take 150mg per day. When things are not working I feel cold, suffer with skin problems, bloating and constipation, low mood and tired/dry eyes with fatigue headaches. I can usually feel it coming on when things are out of whack. I seesaw a lot even though I’ve been on consistent dose for a long time. It’s a bit of a downer but generally manageable.

My tips:

Keep track of your bloods properly starting from now - don’t just take GPs word for it, double check the meds are set right.

Check your iron and vit d levels.

Drink loads of water for eye and skin dryness.

The only thing that helps my symptom management is regular exercise, three or four times a week minimum regardless of how I’m feeling - cardio, yoga, swimming, whatever. This keeps my weight just about in check and sorts my constipation which is probably my worst symptom.

I know others who change diet for symptom
management but haven’t ever really hit on anything that works well.

It can feel overwhelming and like a lot of “women’s” issues it is really hard to get a proper treatment approach and find a helpful doctor. But when the Levo kicks in you will start to feel yourself again and can take it from there.

I have no experience Op but I couldn’t see the images of your hands and not send my sympathies. I have hypothyroidism and contact dermatitis and when my skin flares up it’s awful. That looks so incredibly painful.
I hope you manage to get it under control soon.

Hi, your skin looks really sore and it may be auto immune related but it is not a given of having hashimotos. I get sore skin round my eyes if I don't look after myself but nothing like that. Don't panic about having to go gluten free and avoid this and that. Like others have said you feel much better when the levo starts working and it is like a new lease of life. I'm taking zinc and selenium which has helped, my antibodies reduced a bit and I had my vitamins tested and now have B12 and D in spay form, hardly ever get a headache now amd have a lot of energy. You will start to feel better soon.

I've had Hashimoto's for nearly 30 years, since after my first child was born. My advice is to take it one step at a time. Start the levothyroxine and see what changes - 50 is a very low dose, so I would be pretty aggressive about going back to the GP if you aren't feeling any better in 4-6 weeks. Once your levels are stabilised, if you're not feeling better, then you can start eliminating food groups to see if it makes a difference (it didn't for me). I didn't have skin problems like yours, and I'm sorry - that looks miserable, but I was surprised by how many issues I hadn't realised were related, resolved themselves once I was medicated.

My biggest piece of advice is to basically force your GP into testing your T3 levels when they do your bloods. It's not routinely tested in the UK, but having T3 levels within range is going to be the biggest factor in how you feel.

There's no evidence that going gluten free will help, unless you also happen to be coeliac or otherwise intolerant. Lots of misinformation around this on the internet however.

When you are appropriately medicated you should feel well, at times it may get worse, your TSH will increase and you may need a re-test/increase in medication (my only symptom is increased fatigue) Otherwise yearly re-tests and act upon results if needed.

If you happen to become pregnant, speak to your GP straight away as the dose is increased.

https://www.btf-thyroid.org/ for evidence based advice.

Bonus, you get free prescriptions.

Welcome to the club. Did they do a whole blood check? It does take a while for the drugs to kick in and you have to keep an eye on your levels and be aware of your body for changes. I had about every symptom on the nhs website - exhaustion, brain fog, depression, dry skin, sore eyes, dizziness, nausea, balance problems, headache, ocular migraines, weight gain but lack of appetite, horrible indigestion, muscle pains, lack of energy, bla bla bla!

I really had to push doctors because my old one said ‘it’s your age try camomile tea and have you considered therapy?’ It took a while of going back and forth until she sent me to see a specialist (gynaecologist) who was horrified that I wasn’t getting my thyroid checked out, so got the relevant checks some eventually.

Diet didn’t really make a difference, but I also have reflux so had to cut out a load of things to try to keep that under control. I just try to eat light and often (I actually feel sick when hungry - it’s mental!) and can’t really eat garlicky food, rosemary, anything too carby (just don’t cut down). Some people say gluten feee helps but I can’t say that helped when I tried it. Besides I bloody love bread! Sugar really makes me feel sick.

50Mg does sound low but I seem to remember they didn’t with me then upped the levels after regular checks. But apparently too high a dose has the same symptoms as too low!

Maybe try a dietician?

There are far worse things you could have - it sucks but there are worse things. Focus on eating well and light, keep a food diary to see what makes to feel worse or better. Exercise really knackered me these days and I get awful pains in my thighs at night (tonic water helps).

I've had Hashi's for over a decade and honestly, I feel completely fine most of the time! I'm on 100mcg of thyroxine (I started on 50mcg like you and it was gradually titrated up). I felt a lot better after only a few weeks of starting thyroxine, but it took around one year to feel completely back to normal. Like a previous poster, I was amazed at how many health niggles disappeared once I was on thyroxine!

I haven't felt the need to cut out any food groups, but I do try to eat healthily. I eat two Brazil nuts a day for the selenium (no more than that, because too much selenium is dangerous) and I also take cod liver oil each day for its anti-inflammatory properties.

Have had Hashimoto's for over 20 years. Just as tired today as I was then. Thyroxine hasn't made any difference.

Hopefully it works for you OP.🫰

No idea if mine is hashimotos but I've very little thyroid function naturally and on a high does of thyroxine.

The doctors generally fiddle with meds which can be irritating and make you feel worse and often don't tell you anything, as a PP said, give it 4-6 weeks if not or not enough improvement you have to keep going back until they do something. Any issues ask to see an endocrinologist, they may or may not want to see you but the one in this area wants to see all people with thyroid issues so they can do the full tests.

They may not have told you this but you can't eat within an hour of taking thyroxine and no soy/soya products withint at least 4 hours as it blocks the uptake of thyroxine.

Going no soya is hard because it's in loads of things like bread (no need to go gluten free), however some breads are soya free including Jacksons.

Because of the can't eat within an hour of taking I take mine at night, I find it fits my schedule better.

ETA sorry about your skin, that looks sore, what has the dr suggested?

I've had Hashimotos for 15 years. I take 100mg of Levothyroxine every day. When I was first diagnosed I suffered with aching joints, was always tired, hair came out when I brushed it, dry skin, felt cold and bloated.

I had regular blood tests and found my B12, iron and vitamin D were also low. I took supplements the GP prescribed eg B12 injections and very high dose Vitamin D and my Levothyroxine. After a few years I moved to a gluten free diet as my guts and the bloating were still sore. I was not coeliac but since stopping eating gluten my stomach and guts aren't sore to the touch.

I feel really well when my TSH level is as low as possible eg currently 0.2 Some GPs just say if it's in range (0-5) you're OK but you will find your own level where you feel well. My hair is great now too as it no longer comes our when I wash or brush it!

Good luck OP. It's a journey you'll be on. Get your blood checked for B12, vit D, iron and your thyroid levels and aim to be towards the high end in them all and in the lower end for TSH and antibodies. Hopefully you'll start to feel well again soon. Best wishes xxx

Hah. @TheFieldOfStars I also eat exactly 2 Brazil nuts a day (which is my excuse to then have a square of chocolate). And @MarkingBad I also take my thyroxine at night, but I do it because I read somewhere that uptake might work better for some people if taken then.

For full transparency, @HashiMeTho I also feel totally fine, but I went through a period about 10 years ago where I felt pretty awful and struggled to get taken seriously. I finally found an endocrinologist who listened and really looked at my results and ended up putting me on some T3 in addition to the levo. I now take an Armour Thyroid and levo combination and have no issues. It's one of the reasons I suggest trying to get referred to an endocrinologist - GPs really don't tend to have a very full understanding of thyroid issues. They often think, T4 and TSH fine, all sorted, but it can be more complicated than that.

Calm down and take a deep breath.

It’s incredibly common, particularly in women, and once medicated you can live a total normal life and will feel MUCH better.

You won’t know what is connected to that and what isn’t till you have the meds right so pointless spiralling down that road until you have some stability and then you deal with the next thing.

Don’t try and fix or change everything at once. Easier said than done I know if you are prone to anxiety and obsessions and have been feeling crap for ages.

I’ve had auto immune thyroid issues since my twenties, so for a couple of decades now, and my antibody levels are a lot higher than yours. It takes a bit of time to level off at the beginning but since then I’ve been fine. I have to look after myself more than the average person - healthy diet, exercise, and lots of sleep, but I haven’t eliminated anything from my diet except highly processed stuff. I was started on 75mg levo and that’s still where I’m at.

your skin looks very sore, I hope you get that sorted.

Oh and the levithyroxine - has to be an empty stomach (so taking at night is ok but they advise 4 hours after eating). And you can’t have caffeine for an hour after taking it. I take them as soon as I wake up then get up and slowly make it to the magic hour when I have my first coffee of the day.

I also find that I really just can’t be arsed a lot of the time - food, work, hobbies, people… or maybe that’s just age?