I’m brand new here, having just been diagnosed with Hashimotos. I’m really struggling with fatigue, bouts of low blood sugar, as well as trying to manage perimenopause symptoms. I’ve got a really great doctor and have been on levothyroxine for two weeks. My question is, is it normal to feel this poorly? I know it might seem like a silly question but I’m shocked at how unwell I feel, even though my symptoms have been creeping on for a couple of years. I guess I’m just hoping for some reassurance that things will get easier. Thanks everyone
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Everyone says it will get easier, and I am finding hope in that. I hope you are managing to be kind to yourself at the moment too. Expecting too much from yourself while so unwell, which you must be, will not help matters.
I have found accepting that I am this unwell has made it more bearable. I accept I am in a privilege enough for many reasons that I am able to take this unwanted time out from life. I know many could not.
P.S. If it helps, I’m still quite new to my thyroid journey and some symptoms improved, others got worse, and new ones have developed so far. But the fact that symptoms do ease, including new ones, gives me hope. And I’ll hang on that for as long as possible to get me through.
You will start to feel better, but it is going to be a slow journey, so be kind to yourself and go with the flow.
Mine was a slow journey, and I was desperate for a quick fix. I have Hashimoto’s and an underactive thyroid.
I can recommend books by Izabella Wentz Root Cause and Hashimotos Protocol.
Make sure all your vitamin levels are good to support your thyroid. If your GP has not tested those, look at private blood testing.
If you can access your GP blood results you can always post them on here for help. Make sure your include the ranges.
I got lots of fantastic advice from this forum, and took there advice too.
Just be mindful that GP’s go by NHS guidelines, and stick to this. Sometimes this is not beneficial to the patient. I speak from experience of my own thyroid with the NHS.
Hi Peanut. Thank you so much. She’s started me on 25mcg but said she will do another blood test in eight weeks and may need to increase.
My tpo antibodies were 215 and tsh was 10.8. I have a feeling you might be right about my vitamin and mineral levels so I’ll request that test. Thanks so much for the reassurance x
Do you have a heart condition as often they can start you on a full replacement dose based on weight? Some people do better with this than others. My body could not handle the full replacement dose all at once so had to go back down and try the safer slow approach.
How old are you and approximately how much do you weigh in kilo
Unless extremely petite, likely to eventually be on at least 100mcg levothyroxine per day
If under 65 years old the standard STARTER dose levothyroxine is 50mcg
Starting on very low dose levothyroxine can make you feel worse, because levothyroxine doesn’t “top up” your own thyroid output, it replaces it
Dose is typically increased slowly upwards in 25mcg steps retesting 6-8 weeks after each increase
ALWAYS do all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
ESSENTIAL to test vitamin D, folate, ferritin and B12
Check if these have been tested, if not request they are
You also need coeliac blood test BEFORE considering trailing strictly gluten free diet
A full panel is TSH, FT4 and FT3 + antibodies (for the first time, you don't need antibodies again now you know you have Hashimoto's). I doubt very much that she did a full panel to include FT4 and FT3. If so, what were the results?
She is going to need to retest you multiple times. 25mcg of Levo is a baby starter dose and that's why you feel so rough. We increase by 25mcg a time. So retest should be 6-8 weeks from start of new dose and then increased to 50mcg. 6-8 weeks later repeat the test and increase to 75mcg etc. Until the TSH is below 2, possibly below 1. Don't let your GP stop increasing just because your TSH falls somewhere in range. You have to fight for thyroid treatment sadly. But know that you can fight for it. Politely, but firmly, stating what you want to do next and insisting on being allowed to try it for a (trial period).
I am sure one of the admin’s will come along soon to explain dosing. Failing that, I recommend using the search option for starting doses.
But. I can share that starting on 25mcg is a very low starting dose for someone who does not have heart problems. With that said, sometimes you may start on a low dose if the GP suspects you have been severely hypothyroid for a some time. But, I am inclined to think they may be overly cautious or just don’t know what they are doing.
You may want to posts your blood tests results so people can advise fully.
And, any other results such a vitamin D, B12, Ferritin, and Folate if you have them. You’ll soon learn these need to be ‘optimised’ in order for the thyroid/medication to work at its best.
And, and other thyroid panel results with ranges.
Rest assured, you are at least in the right place. Welcome to the forum.
OK. So you definitely have autoimmune hypothyroidism often called hashmitos, which is very common. I am curious, was you diagnosed with two different TSH results several months apart?
Have you been on 25mcg for long? I believe your first step is to go back to GP and either consider starting on full replacement dose based on weight as your starting dose (note, some people can not handle this while others do well with it) or at least start on 50mcg instead as 25mcg is almost certainly going to make you feel worse. With that said, do bear in mind, many share that they feel worse before they feel better on the right dose or treatment for them.
Hi, just checked my results from 2022 and my TSH was 3 then, so the increase to my TSH has happened over the course of a year. I’ve been on the levothyroxine for just over two weeks now.
So you only have one over range for TSH result? That may explain why the GP has started on you such a low dose, but honestly, I have no idea as there is no consistency in how it is diagnosed or treated.
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.
25mcgs is a low starting dose and can make you feel worse initially as its not enough to replace what you own thyroid was putting out. Levo doesnt top up your own levels it replaces your thyroid output.
I think most people who are well take that for granted and its not until some form of ill health hits them that they realise how good it was before. You will get back to that place but it may be many months.
A few tips and something further to look into.
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.
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/help-and-supp...
There is also a new company offering walk in (includes free blood draw) & 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.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.
You could try a strictly gluten free diet to see if it helps symptoms. Many with Hashimoto's as you have find this helpful. A small percentage of those also need to remove dairy from their diet.
I'm not an expert as only properly diagnosed a few months ago but what I can say is when I joined this site I was depressed, anxious, tired and not the person I used to be. With the help and support of these people I pushed to get help. My doctor constantly told me all I needed was antidepressants. I knew it was more than depression. My thyroid had been borderline underactive for 10 years. The thyroxine has helped and about 4 months later I am better than I have been for a long time. Probably still room for improvement but feel more like my old self. I also stopped eating gluten which I believe has helped me too. You will get there. Underactive thyroid makes you feel awful, but with the thyroxine, getting vitamins at good level which I'm still trying to do, gluten free if you can you will start to feel better. It just takes time. So many on here are on the same journey and are a wonderful support to us all. Take care.
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