I just wondered if anyone else really suffers with anxiety & severe depersonalisation when upping their thyroxine dose? Even upping slowly it seems to really affect me.
This has happened to me before & the GP said take my dose back down previously, but with a TSH of 25 & barely in range T3/T4 I really cant afford to do that again as physically it’s all really affecting me & I’m feeling very unwell.
I’d love to know if anyone else has suffered with this as the barely feeling like I’m here & debilitating anxiety is really very frightening.
Thanks so much
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MissOphelia
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I have pernicious anaemia as well & borderline vitamin D, trying to raise all vitamins including iron at the moment.
I posted the other week in regards to being a bit confused by my thyroid results & people were really helpful in recommending to try to sort these vitamin levels out
I was under endocrinology previously when my numbers were better (as I’ve never been particularly well regardless) but they were very dismissive, I’ll see about the list you recommend, Thankyou for that.
I don’t know why I can’t seem to tolerate these thyroxine rises at all it’s really strange!
Adrenal glands get exhausted trying to support the body due to lack of thyroud hormones
Running on adrenaline instead of thyroid
NHS doesn't recognise adrenal exhaustion, only Addison's disease
Slow steady increase in Levothyroxine
Getting vitamins optimal can definitely help
You need Vitamin D, folate, ferritin and B12 tested
Add results and ranges if you have any
Have you ever had TPO and TG thyroid antibodies tested to see if cause of hypothyroidism is due to autoimmune thyroid disease (Hashimoto's)
About 80-90% of primary hypothyroidism is due to Hashimoto's
Strictly gluten free diet can help if you have Hashimoto's
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Thanks so much. It’s nice to know I’m not alone struggling to tolerate the medication.
I will just keep trying to rise it slowly.
I have high antibodies - hashimotos.
I think I do have low stomach acid, recently I’ve been having horrendous indigestion & rib pain- I tried the bicarb test- I know is rudimentary but it did seem to suggest low stomach acid.
Since I have Hashimotos and pernicious anaemia I gather they are both risk factors for this.
My vitamins are not optimal by any means they’re mid range, (although my b12 is at top of range as I have injections for pernicious anaemia.)
My folate is 9ug/l (2.8-15)
My vitamin D was 45nmol/L at last test, up from 33nmol/L a year prior (it doesn’t give ranges on my results for this one)
Ferritin (December test) was 31 (13 - 150)
(But it used to be 3 at its lowest so it’s improved a lot since then!)
Trying to up these with diet & supplements
Thanks for your time & help it’s really appreciated.
Ferritin, eating iron rich foods plus daily vitamin C may help improve iron absorption
Liver or liver pate once a week too
Vitamin C also helps support tired adrenals
Magnesium flakes in the bath are calming. Magnesium also helps vitamin D
Magnesium supplements too can help calm. Look at Calm vitality magnesium powder
But you do need to get Levothyroxine levels up,
Going absolutely strictly gluten free diet can be a revelation
I was stuck on propranolol (beta blocker) as the only way to tolerate increase in Levothyroxine for decades. It caused terrible anxiety. (Hashimoto's often does) Going strictly gluten free was a revelation
only after joining here did I realise most of us with Hashimoto's are gluten intolerant ....not coeliac
I only got better with the fantastic help on here (more on my profile)
So, helping others is my way of saying thank you
Hello there, I struggled to tolerate levo and have mental health symptoms if on too much or if it's raised to quickly. I tend to get anxious, agitated, aggressive etc. In the end I had to see psychiatry who then involved enocrinology. I'm now working up to an effective dose of levo plus T3 and much better mentally. My advice would be to talk to your GP about getting a primary care psychiatry assessment and an endo referral. If you see a supportive psychiatrist they will be able to say if they think the levo and your hypothyroidism are the main problem and you will be able to say to any endo or GP that you've had primary mental health problems ruled out as your main problem.
My psychiatrist insisted endocrinology saw me when my GP referral to endo had previously been declined because the symptoms were seen as probably anxiety.
thank you so much, I’m sorry you’ve suffered this too but it’s so helpful to know I’m not alone.
I rang the crisis line this afternoon & they’ve told me to see my GP too.
It’s scary because 10years ago I had a breakdown (which was when they found the under active thyroid) but now my levels are as bad as they were then but medication increases just seem to exacerbate everything, I don’t quite know what’s causing what!
No you are not alone, thyroid problems have a profound effect on our mental health. Two years ago when I was in the thyrotoxic phase of my illness I was in Spain and had massive anxiety a sense of my brain just not working, muscle spasms and terrible confusion. I got lost going to the shop, set the kitchen in fire and felt like ending it. I was put on valium, sertraline, beta blockers and referred to the psychiatric crisis team. I slowly recovered and am now at the best I've been. Shaw's, Slow Dragon and Seadidesusie and many others gave me very good advice on managing adrenals, sorting out my nutrition and managing to start to work on getting the right dose of T4 and T3. It took time but I am so much better and mentally much more stable. Your TSH is very high so you definitely need specialist advice getting that down. I personally found psychiatry to be my biggest advocate, as well as offering support when I was mentally unwell they really helped me get the right help and supported me getting my problems treated as an primarily an endocrine disorder not a stand alone mental health problem.
Hang in there it will get better and maybe discuss mental health medication with your GP for short term relief.
It’s utterly terrifying feeling like your own mind and body aren’t your own.
I’ve been on sertraline for 10 years since the breakdown but I’m just on a maintenance dose so going to speak to the GP about upping it again to try to deal with these mental symptoms & some diazepam short term.
I’m on a list for talking therapies that I’ve been on since last September they managed to get me an apt for May when I spoke to the duty team today, I’m pleased I’ve taken the positive step to speak to them.
Thank you so much for sharing your experience I’m really so grateful & I’m so glad to hear you’re doing better
Strength and Sympathy for you . It's very concerning when one needs to raise their dose and has difficulties . Nutrients are required for us and for our thyroid meds to work well for us . Like Vitamin "D" /K2 , B-Complex , B-12/folate , magnesium , Vitamin "C" , Iron if you test low , Celtic Sea Salt for adrenals /electrolytes . Once all the vitamins are in place you might find that you will be able to raise your T4 . You might also want to give a try with low dose T3/NDT in a small split doses .
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