I’m only six weeks into treatment - levothyroxine at 50mcg. First blood test showed ‘borderline’ hypothyroidism so GP ordered a follow up two months later. I’d had hip replacement surgery a few months before and GP thought this might have knocked things out of kilter.
I was then feeling less fatigued but nevertheless the second results ( which I haven’t seen and indeed have not yet seen the GP since nor been examined ) indicated that the whatever levels had been highlighted, were now requiring medicating. I had 4 weeks of one OK medication then the second month’s prescription was initially a brand which included mannitol and I managed to get that changed. I’ve had headaches with aspartame and saccharine and mannitol seemed a similar sweetener type.
I can see vast pools of expertise on here and I feel I’m plaiting fog with my lack of knowledge or advice. I like to be in charge but I can’t do that without knowing what’s going on with me. I was tested again yesterday but only for TSH. I asked about iron but was told it was on the higher side of normal 3 months ago. My vit D is consistently on the low side.
Part of me doesn’t accept I have this condition and in some ways I feel worse with the med., just as fatigued, napping, jittery but with periods of normal energy lasting for longer.
I’m not sure what to do to maximise my health. There’s a lot of conflicting info online about milk, coffee, fibre, crucifer our vegetables! Help!
I thought I’d be feeling better than this after 6 weeks.
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Calceolaria
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Ignore all the stuff on the web about diet for now. That’s for later if the “what normally works” doesn’t work out.
You’ve found a forum frequented by those who need a little more help because “what normally works” didn’t. So keep that in mind as you read. The vast majority of people who go on levothyroxine end up just fine (we think!). No reason to think at this stage that you won’t be one of them.
So first the bad news—50mcg is a starter dose and you’ll almost certainly need more but you can’t rush this part. It takes 6 weeks for a dose change to get fully into your system, so every time you get one, you won’t know for 6 weeks or so whether it’s enough yet.
During that figuring out what dose part, you probably will feel a bit worse before you get better from time to time. That’s normal, frustrating though that is.
I am a little concerned that your doctor only seems to care about TSH as it’s important to know what’s happening to two thyroid hormone levels, in particular FT4 and FT3. Your TSH will lower as your levothyroxine dosage rises—potentially to a low number that makes your doctor needlessly twitchy and wont to muck about with your dosage to get it back into the laboratory reference range.
See if you can get them to agree to testing FT4 and FT3 as well, because as long as those results are in range you can’t be over medicated, no matter how low the TSH goes.
I bet you’ve been heading for hypothyroidism for quite some time (that’s quite common) but a surprising number of doctors seem to believe it doesn’t need treating until the TSH reaches their idea of borderline. In reality, anything above 3.0 shows your thyroid is struggling, anything above 5.0 means things are on a downward slope and treatment would be a very good idea. Sadly many wait until it goes over 10 and you feel awful…
Are you doing anything about that low Vit D? Low Vit D is often a consequence of undertreated (or indeed untreated) hypothyroidism.
As is low ferritin, low Vit B12, low folate…
PS—“higher side” iron (assuming they meant ferritin) is often a sign of inflammation, rather than an indicator of decent iron stores.
Welcome. We’ll do our best to get you on the right track.
Thanks so much. I realise I’m probably jumping the gun a little here. And yes, I think you are correct in that I’ve been ascribing what must have been symptoms, to older age - I’m 74 - (granny nodding off to sleep ad lib , thinning hair, dry skin, concentration issues.) The numbers relating to TSH , T3 and 4, I need to focus on as they aren’t making sense to me - concentration issues!
So glad you are out there and responding to quickly. Thanks.
Hopefully the concentration issues will improve once you’re on a decent amount of levothyroxine. If they don’t, it would be well worth getting your doctor to test Vit B12 and folate levels, as deficiencies in one or both can make concentrating almost impossible!
On balance, I’d favour having the booster over getting full blown Covid but ultimately it has to be a be a personal decision weighing up what you know about how jabs affect you. Full blown Covid often seems to cause disruption to thyroid hormone production.
First thing is to get hold of copies of your blood test results
You are legally entitled to printed copies of all 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.
Welcome to the forum Calceolaria; you will get lots of great advice and support here. Keep asking questions and reading links sent in replies; it does take time and patience to get your head around things.
You will feel so much better when your thyroid medication and key vitamins (ferritin, folate, vitamins D and B12) are optimal, but it’s important not to supplement until you’ve had levels tested first. Always bear in mind that when medics say levels are ‘in range’ or ‘fine’ that this is not the same as ‘optimal’ and members here have a wealth of experience in trying to optimise results.
Welcome! The worst part of the treatment is waiting 6 weeks to find out what is going on, but it is necessary. The thyroid drives every part of your body, so why GPs are so ignorant of its importance is beyond me.
You WILL feel better, it just takes a while and probably many changes of doses until you find your "sweet spot". Read as much as you can here, take it in little bits or if you are like me, it is in one part of the brain which gets overwritten quickly!
Be kind to yourself - we mostly forget this bit, but if we broke a leg or something visable, we would get help and sympathy, but as the thyroid and what it does is not seen, it is harder for others to understand, including GPs!
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