Hi all, I've been on 50mcg of levo for the last couple of years. In that time my health improved to a degree but I've always had some bloating and tummy issues. Because the only tablet I could tolerate to a degree had lactose in it, although I was lactose intolerant I just lived with it often thinking I'd probably feel better if I didn't have to put lactose into my body every day. However in the last month or so my stomach became more reactive to it all and started to protest by making me have loose stools and severe nausea. I thought I couldn't tolerate the lactose anymore and persuaded dr to prescribe oral solution. Waiting for the liquid levo I started to recover and feel better. I had no sign of my hypo symptoms returning and all my aches and pains disappeared. I went for over a week without meds and no hypo signs but my appetite was poor inspite of the nausea disappearing completely. I started the new medication last Tuesday and immediately felt light headed and poorly. I gave it three days but I started feeling anxious hot irritable and panicky. I realised I was feeling hyper and stopped taking the new meds and my condition is beginning to improve and I feel a lot better . I'm now thinking I've possibly been over medicating and maybe my thyroid has returned back to normal function. Is that possible? I'm wondering whether just to stay off the levo for a while and see what happens. I'm concernd if I go to the Dr's for a blood test they'll take me off the medication and I'll have difficulty getting again if I go back to feeling hypo. Any advice please 🙏
Think I've changed to hyper advice please - Thyroid UK
Think I've changed to hyper advice please
You definitely need a blood test. I understand your concern about having your medication removed. Do you know if you have thyroid antibodies? That's the first thing, check if they've been tested. You need TPO and TgAb. You are entitled to a copy of test results.
You can get blood test done via reliable online labs su h as Medichecks or Blue Horizon.
You need
Thyroid antibodies TPO and TgAb if they've not been done or you can't find results.
TSH
FT3
FT4
Ferritin
Folate
B12
Vitamin D
Changing from tablets to liquid levo, you will absorp differently so you really must get a blood test.
Thank you so much for your prompt reply. Will go back to doctor and get blood test and get a private one too. I had my antibodies checked on my first blood test when I was diagnosed as hypo but they were never very clear on the result when I asked. They just oh yeah they look OK and I said so it's not Hashi's and the dr said er no. Wasn't really sure if she knew what I was talking about! Thanks for your reply 😊
Dr's call it autoimmune thyroiditis. They rarely refer to Hashimotos. You can request a print out of historical results from GP reception but ensure you ask them to include the lab ranges.
The other option is to register for patient access to blood test results online. Ensure you make it clear that you want access to test results. Again, ask GP reception for the password to organise this. You'll likely need to fill in a form and have your ID verified.
Please take care and closely monitor how you feel. I was not happy being on levothyroxine and I cut my dose right done to almost nothing. I felt really great for three months. Then the symptoms hit and I was very ill.It is quite common to feel well after stopping levo apparently.
If you don't know already it would be useful to know if you have autoimmune thyroid disease. If you have it means that your thyroid has been attacked by your immune system. This in turn means that your thyroid is permanently damaged and impaired so is unlikely to be able to produce enough hormones.
Thank you Lalatoot. I think that's what is bothering me there's no clear indication as to why I went hypo in the first instance. I need to investigate thst further.
Extremely common to feel remarkably well when initially stop levothyroxine. But, assuming you need levothyroxine due to being hypothyroid you can become slowly more hypothyroid….or suddenly much more hypothyroid
50mcg levothyroxine is only a starter dose levothyroxine
Likely you have been left under medicated if still only on starter dose
First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Poor gut function, bloating and nausea are common hypothyroid symptoms
Very common to develop lactose intolerance with hypothyroidism, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease
Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies if not been tested yet
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
If you are going to test thyroid levels having stopped levothyroxine completely, there’s no point testing until 6 weeks minimum off levothyroxine…..by which time you may be feeling very unwell
No point testing after a week, without levothyroxine, it won’t tell you anything
Thank you SlowDragon, plenty to digest there. I'll need to try and get some historical results next week. Thank you for your in depth reply.
Like you ( about 26 years ago) I stopped levothyroxine as has been left on ludicrously low dose levothyroxine…
First time I did so after 2 weeks slow return of hypothyroid symptoms and took 3-4 months to recover
2nd time I did so (a year later) ….as still had been left woefully under medicated….I became extremely unwell. So poorly I was tested for MS, Motor neurone disease, pituitary tumour etc etc.
Long road to recovery when eventually on high enough dose replacement thyroid hormones, all four vitamins tested and optimal and absolutely strictly gluten free diet
More on my profile
Gosh that sounds awful SlowDragon, must have been terrifying for you. Why did you stop taking your meds originally? I've felt so bad on the new medication that I'm sure I had gone over, even if only slightly but I'm not taking it for a little while until I'm sure it's OK to do so. Feeling hyper felt quite scary. I had to wait just over a week for the liquid to be ready at the chemist and in that time I felt OK. In fact I can't remember when I last felt the carpel tunnel pain in my thumbs, it always seemed to be present. I came off the tablet levo a fortnight ago but took one on the Sunday before I contacted my GP. That made me feel light headed also and very nauseas the next day. I'm even wondering now that the reason I became poorly with what I thought was a lactose build up was actually that I was getting hyper.
have you trialled being gluten free to alleviate stomach issues Bookworm63? Being gluten free & following forum advice to get key vitamins & thyroid meds optimal has massively improved my symptoms .
I have tried it it on and off but find it really difficult to stick to. I did for a few months some years back before I was diagnosed as hypothyroid. Felt good for a couple of weeks then the bloating came back a little while later I discovered it was milk that was the bloating culprit so cut out lactose and my symptoms improved a lot until I got thyroid issues.
If your thyroid meds are lactose free then most likely you are reacting to a filler so changing brand can really help. You are unlikely to be over medicated but under medicated on the nhs -being under medicated also causes palpitations. Get copies of your blood test results. And also run a private full thyroid panel and post on here.
Thank you waveylines, yes I need to get some proper tests done.
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