After writing again to my surgery they've responded via text and asked me to go for blood tests. So I'm pleased that they've possibly decided not to overlook a below range FT4 test result again and that I may actually have a problem and need treatment.
The last few weeks I have started to feel quite unwell more often; it seems to happen in waves if that makes sense. I've been having the lump in my throat feeling, my neck glands are swollen and my voice has been hoarse. It's definitely not anxiety. It's very difficult to explain the rest of my symptoms but I just feel unwell, unsteady and have to lie down for quite some time. Luckily I have no one that depends on me.
I think I'm starting to properly realise now how misunderstood thyroid/pituitary problems are as someone recently said to me 'but you can't have a thyroid problem as your eyes don't stick out!?' Also when I say I don't feel well and feel like I have to lie down people seem to think I'm tired/lazy which I'm not but I am tired of trying to explain.
The blood tests are now booked for early morning in two weeks time, but my question is if I do get any treatment from my gp or get a referral how long will it take before I start to feel any better? I realise it's how long is a piece of string question but also what if I start getting worse in the meantime what do I do? Walk in centres are closed and appointments only. Think I feel a bit scared.
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Hedgeree
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If you re prescribed Levothyroxine there are two ways they can do this
1) By weight - 1.6mcg Levo per Kg of weight (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
2) Starter dose of 25mcg if over 65, starter dose of 50mcg if under 65, then increase in increments of 25mcg every 6-8 weeks.
Option 1 is more or less going in at a full dose which doesn't suit everyone. Option 2 is a more gentle approach, the body needs to get used to thyroid hormone replacement and it seems a more sensible way to me.
If you are not over 65 nor have a heart condition, then make sure your starter dose is 50mcg not 25mcg (if Option 2 is used). You will need testing 6 weeks later, dose increase of 25mcg, retest 6-8 weeks later, dose increase of 25mcg, and repeat until your levels are where they need to be for you to feel well.
It can take 6 weeks for the full effects of Levo and for levels to stabilise. It can take months to actually feel well.
Hi Hedgeree, have you looked at the ThyroidUK website? There's lots of useful info there.thyroiduk.org/
If you are trying to get diagnosed try this page which has a list of symptoms and lets you print a tick box version which you can fill in to show your doctor.
Hopefully you will get treatment. If you do it takes time to feel the benefits, but you can't rush it. That's why you must wait 6 to 8 weeks after a change of treatment before you can get the next set of blood tests. You may not feel better to start with, but be patient and you can always post on here for support.
I saw a description somewhere which said it's like trying to mop up water with a sponge - when the sponge is very dry it hardly soaks up anything, but once it's got a bit wet it becomes better and soaks up more. Getting your thyroid up and running again is a bit like that.
I like the sponge description, that works for me. I can visualise that.
Yes I keep trying to remind myself that it will take time to get better, hopefully if I do get treatment. But I'm not going to give up yet as I realise now that I've probably had these problems for many years but have managed to normalise them, if you know what I mean?
I think feeling worse these last few weeks and thinking 'is this it' is what's making me feel scared.
Try not to worry about 'what if i feel worse in the meantime', you've been dealing with this for months .. hypothyroid is a slow game. Since you had an NHS under range fT4 about 4 months ago , this repeat test is probably a 'recheck after 3 months' to see if fT4 is still under range.
You've already done what you need to do by putting the pressure on them to investigate it , and by getting an early morning blood test... even if you do feel worse in the meantime, there is not anything anyone can do until they have another set of bloods done... and even then , hypothyroid is a long game. .. it takes a long while to go wrong , and a long while to feel better even once treatment is given.
And the guidelines are not so clear for 'below range fT4 with in-range TSH '... so it's not certain you will be given levo by a GP, even if fT4 is under range again.. they may want to ask an Endo 's opinion first.
Not saying this to depress you.. you have made good progress by getting them to pay attention to the low T4.. but don't want you to get your hopes up that the next visit will be to prescribe Levo .. you may have to keep the pressure up.
Yes I will try to remember that it's a long game as you say. Also I've had a very low in range FT4 for many years and only recently had a below range FT4 so yes I think it is to check that it's still below range.
If my symptoms are anything to go by it'll still be below range I feel.
I will keep the pressure up as I can't function like this anymore, it's horrible just existing and trying to get through each day. Also battling with my gp when you feel ill is hard.
I'll keep reminding myself that I've done well and not to give up.
even if this next one does come back in range . don't despair . Now that they have had one of their 'own' under range, they will be much more willing to take low results from private tests into consideration(even if they don't officially 'accept' them) and the exact level of fT4 does go up and down a little every half hour or so throughout the day .. so it's a bit of a 'crap shoot' what you get on any one test .
So don't give up .. it's just a marathon of 'one step in front of another' (through mud !) , but if you just keep walking you will get there.
I think I'm starting to properly realise now how misunderstood thyroid/pituitary problems are as someone recently said to me 'but you can't have a thyroid problem as your eyes don't stick out!?'
There are lots more...
You can't have an overactive thyroid because you're too fat.
You can't have an underactive thyroid because you're too thin.
You're tired because you've just had a baby.
You're tired because you've got a number of young children.
You only want a higher dose of Levo because it is addictive/makes you feel good.
You only want a higher dose of Levo to help you get through your housework more quickly.
You don't have a thyroid problem, you're just depressed (or anxious).
You don't have a thyroid problem, you just eat too much/don't do enough exercise.
You don't have a thyroid problem you're just getting old.
You're cholesterol is high because you eat a bad diet, it's nothing to do with your thyroid.
You might find this link of interest, although the author's frequent interjections are very irritating :
It seems I'm number 7 on that list....if you listen to my gp. They just put it all down to anxiety and mental health problems; they don't even consider there's an overlap.
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