Saw an endo last Friday and got the following results:
TSH - 9.91
Thyroglobulin Antibodies - 38.5
Thyroid peroxidase - 9.14
T3 (TT3) - 1.6
Free thyroxine - 15.7
Also these were out of normal range...
Bilirubin - 24
Albumin - 53
Coeliac Immunoglobulin IgA - 5.32
I'd be interested in anyone with long-term experience of this what your thoughts are. This is the culmination of many months of symptoms, the worst of which are the severe tiredness and brain fog. I did have TSH taken in January and it was 6, so has gone up quite a bit.
The endo is writing to my GP to prescribe 50mg of levothyroxine to begin with. I hate the idea of being on this for the rest of my life, but right now I will do anything to feel better.
Does anyone have experience of taking this and NDT? What was the difference? What are the advantages of NDT? The endo does not believe in prescribing T3 except perhaps in a very small amount of patients.
To be honest, I didn't like him and won't be going back (it was a private appointment). I found him quite dismissive and purely allopathic. I asked him if there was anything else I could be doing to help myself, and he said no. Which I know is entirely untrue.
You must feel awful with such a high TSH - good you are finally being prescribed a small dose of levo. First, don't be worried about having to supplement your thyroid hormones for the rest of your life - it's soooo much better than being ill for the rest of your days
Second, once you get onto the medication train, make sure you stay on it! Take your levo properly - every day, on an empty stomach, just with water, and nothing else to eat or drink at least 1 hour afterwards or 2 hours before. It doesn't matter whether you take it first thing, last thing, or split the dose, but going forwards have a 24 hour gap from taking levo to your next blood test and get the earliest test in the morning your GP will give you.
You are on a very small starter dose initially. After 6 - 8 weeks, you will need your blood testing again to see what increase you need. Think about what 1.6 mcg x kg of weight would be. And keep increasing until your TSH is nice and low - probably less than 1; def less than 2; and your free T4 is in the top third of its range.
You should make sure you get free T4 testing from now on, not just TSH, and ask for your results and the reference ranges - "normal" and "in range" are no use to you - it's where you are in range that matters. You are unlikely to get free T3 tested on the NHS, but once your levo is on a level footing and you feel significantly better it may be worth treating yourself to full private testing, including key nutrients.
Finally, I would say that at this stage it's far too soon to be thinking about NDT - quite apart from the difficulties in accessing it, you have no idea whether you need it. Remember that people on this forum are necessarily the "oddities" who don't tend to do well just on levo - but that 80% -90% of the hypo community DO find levo works really well for them
Oh and one last thing if you are in England, get your prescription exemption certificate sorting - the GP will have a form. You don't pay for levo - or any other prescription once you are on levo.
Thank you so much for a helpful response! I didn't even know if my high TSH was considered 'very high' or not. All I know is I have felt significantly worse in recent months, and the rise in TSH seemed to echo that.
The endo said not to have anything for 40 mins after taking, but I've seen some varying advice on this. Does there ever tend to be issues with sleep if it's taken at night?
I did get a bunch of nutritional tests done too and all were within normal ranges.
Can you say a bit more about reference ranges? What do you mean when you say 'normal' ranges are no use?
And I am in Scotland, so thankfully all prescriptions are covered anyway!
Does there ever tend to be issues with sleep if it's taken at night
I take mine in the morning so couldn't tell you - but others prefer it at night, so it can't stop them sleeping
Can you say a bit more about reference ranges
Your doctor will often tell you that your results are "in range". Say the free T4 range is 12 - 22. If your result is 12 you are in range but will feel rubbish - you want it in the top third, often the top quartile of the range to feel well. Equally your TSH range may go up to 4.2, but you won't feel well at 4.2, you want it less than 2 and probably less than 1. So it's where in range you are that matters. [and also for your nutrients] Lab ranges vary from lab to lab [although a TSH of more than 2 is always bad ] so you want your actual blood results each time, and the relevant lab ranges.
You are legally entitled to your blood results but some GPs are resistant. You don't need to give a reason, but if they are tricksy say "for my records". When you next have your results, post them here and the lovely people can help you understand them.
This is making more sense now, as I've had several TSH tests over the last two decades and I'm not sure any have ever been under 2. This may have been an issue for a very long time...
Thyroxine is an inactive hormone that has to be converted so taking it at night shouldn't affect sleep (as there's no immediate effect). Even taking T3, the active hormone, at night usually improves sleep rather than making it worse. The highest number of healthy people have a TSH around 1.2, but your TSH level doesn't necessarily affect how bad you feel, nor is it a good guide to how well you are once you are on thyroid meds, which is why you need Free t4 (and free t3) tested as well
dont be concerned about the idea of being on thyroid replacement hormones for the rest of your life. you have been on them all your life anyway(or you'd be dead !) and if your thyroid carried on working correctly you would be on them in a natural form till you die. Unfortunately TSH of 6 going up to 9 over 6 months is a pretty reliable sign that your thyroid has decided to not work properly anymore, so if you don't replace what it should be doing you will start to die, just reaally slowly, in a very boring and unspectacular fashion.
The doc's have already ruled out the possibility that it's a temporary problem, by waiting since Jan to prescribe Levo.
They don't give it out to just anyone, in fact they don't give it to a lot of people who clearly might benefit.
Try it out , get your blood test results and ranges so YOU know whats what, and can tell if you are on an optimal dose rather than just averagely good enough, and see how you feel in a few months.
It has taken your body months if not years to slow down to this extent , so don't expect it to feel normal in a few weeks. Be kind to yourself in the meantime.
Here's hoping that Levo alone at the right dose makes you feel like you again, but you wont know until you are up to the correct dose and stable on it for at least 8 weeks.
I did find when i started that i felt about 75%better within about a month, but then it was a bit' two steps forward ,one step back' for another few months until i was on enough.
Many people then feel fine on Levo , which is why those of us on here (who don't) have such problems being offered T3 or NDT to replace a bit more T3 (Levo is just T4, which is then turned into active T3 by the body )
Hopefully you will be one of the majority who feel well on Levo
But even if you are, i would recommend you hang around on here and keep learning/asking.
I've been on Levo 17 years, and i wish i'd found my way here much sooner, and asked for my actual results not just accepted 'normal ,in range , no change needed' every year.
GP's really don't get much training on this, so it's in your own interest's to keep your own records and do your own research.
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