Hello, I've recently been diagnosed with Hashimoto's following blood tests and then a thyroid scan due to an enlarged goitre.
I'm on 50mg of Levothyroxine and I've chosen to go gluten free (I'm not celiac as I've been tested). I've got low vit D level so taking supplements and also taking magnesium.
My question is, why am I having days (like today!) when I feel like absolute pants? My thyroid feels 'swollen', I'm aching, I'm fogging headed, I'm feeling low. I want to help myself, but I'm not sure how other than to go back to bed!
Any ideas on self-help, I'd really love to hear them. Thank you 🙏
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AMC7
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
50mcgs Levo is a starter dose. Usually you are tested at 6-8 week intervals and a dose increase after each blood test until your TSH is at or just below 1 where most people feel well.
Its likely you need a dose increase which is why you feel terrible.
Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.
Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
Do you do tests as per the protocol recommended here?
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Thank you so much for this really useful information. Sorry, I haven't filled out my test results (trying to figure out where I need to put them!) but they are as follows:
TSH
range 0.35-4.94
16 May: 8.5
4 July: 3.1
T4
range 9-19
16 May: 10.2
4 July: Thyroid Peroxidase Antibody - Abnormal
Scan was on 30 June with results: chronic thyroiditis; diffuse thyroid abnormality. The sonographer says in her notes that correlation with antibodies marker is recommended (I'm not sure what this means)
I'm due for another blood test (surgery has contacted me this morning)
I take my Levo c5am and don't eat or drink for over an hour.
You're having days when you're feeling like pants because you're only on a starter dose of levo. Unfortunately there's not a lot of self help you can do that will make a massive difference at this stage. Your body and brain can't function normally until you're on the dose of levo that it's crying out for. If you've been on that dose of levo for 6-8 weeks or more, you need to get your levels retested and the dose needs to be increased, probaly to 75mcg.
You should not have been left on that dose this long! Please get in touch with your GP, explain how awful you're feeling and request an immediate re-test. It's almost guaranteed you need a higher does asap.
Palpitations are common when on too low a dose. Don't let your GP say it's because your on too much levo. Mine did and wanted to reduce it to 25mcg! Many GPs are pretty clueless about all this.
If you look on the PIL (Patient Information Leaflet) inside your box of levothyroxine, you will probably find it says the dose may be increase every 3-4 weeks until you reach the dose that's right for you.
Below is a screenshot of the relevant bit on the Vencamil/Aristo levo brand PIL.
This is depressingly common, I was diagnosed as hypo during covid and was left on just 50mcg for over a year. Sadly many GP's are simply clueless about proper thyroid treatment.
They see your TSH is in range, anywhere and just assume that's good enough. Its about time GP's ( and many Endos too) bothered to educate themselves and read the NICE guidelines.
Hypothyroid isnt some rare unheard of condition, its pretty common, especially amongst middle aged women. Which begs question, why is it so poorly understood and treated?
oh poor you, AMC7 , it can be really awful getting to grips with hypothyroidism. When I first started levo I felt awful. Good things to do right now is let people close to you know that this is tough and might take a while, be kind to yourself, as others here will tell you change and improvement takes weeks and maybe months for some people . Do all the self care stuff like resting when you need it, eating well and leaning on loved ones. You will absolutely get better, so keep hopeful. There are a few books on hypothyroidism but these can be a bit overwhelming and suggest all kinds of diet and lifestyle changes, so maybe not so helpful right now. I always found this forum full of kind supportive and clever people, so posting here might help when you feel pants. Good luck.
All great advice above! I second it all, it can take about a year to work up from that 50 starter dose until you begin to stabilize. Until then - random naps will attack randomly, some days great, others you’ll never even get to the start line : )
I also looked at you other post, and note that before I knew I had hashis, of my looooong list of symptoms I was trying to figure out, at some point I was sure I had Reynauds. My fingers used to get so cold I couldn’t feel them, my fingers tips numb, even though it wasn’t even cold out.
That was for me the hypo, better now with my hashis treated.
Yes, my other post is about Reynaud's and the link with Scleroderma. I've had positive ANA results associated with Scleroderma (which my mother had). I'm on a waiting list at Bristol for further tests x
Good luck with that too! I never had an ana test, but did conclude that my numb fingers were just my cold intolerance and low heart rate/bad circulation from the hypo, as it doesn’t happen anymore now that I’m treated. But I did learn that when someone has both those hypo symptoms can trigger actual reynauds attack (which I looked into while trying to figure out what was wrong with me overall.)
Learning to manage my limited energy is something that helped me. Here is a starter link. . It's directed at chronic fatigue syndrome but the ideas helped my low energy.
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If you've been on that dose of levo for 6-8 weeks or more, you need to get your levels retested and the dose needs to be increased, probaly to 75mcg. 
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