Still early days into treatment on 50mmg levithyroxine. Feeling somewhat abandoned by my GP after receiving a nhs pamphlet on hypothyroidism and reluctance to pursue endocrinologist consultation. No idea what to expect from the medication or real indications of timescales. I do appreciate that there’s no person specific answers with this disorder. Despite asking for a generalised indication of how things progress or what I should avoid eating etc.
I’m feeling extremely low with no interest or energy to do anything.
Is this normal?
Do I need to see a different GP within the practice?
Is it worth seeking a private endocrinologist?
Written by
Rewg
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Realistically, you can expect it to take several months to find the right dose of Levo , and then a few more months to find out if the correct dose makes you feel better , and stay feeling better .... only once you get to that point is it worth pushing to see someone else.
They don't refer hypothyroid patients to endos until they have hit problems with finding optimal Levo treatment , and finding optimal levo treatment does take months not weeks to get right.
How long have you been on 50mcg now ?
you should have a repeat blood test after you've been on 50mcg for at least 6 weeks to see what your blood levels are on 50mcg , and at that point your dose may need to be increased.
Everyone is different in their response to 50mcg levo , (and to some degree it probably depend on how hypothyroid you were before treatment and how long you'd been that way)
but there is a fairly common pattern of not feeling anything much for a week or two , then feeling a bit better for a week or two, then that 'better' feeling tailing off and going back to feeling more or less as rubbish as you did before you started 50mcg .
This is extremely common, and usually means your dose needs increasing a bit .. and you may find that the next dose of 75mcg has the same pattern , but hopefully you stay feeling better for a bit longer this time , but it might still tail off ... then another blood test after you've been on 75mcg for a couple of months ..and another possible increase to 100mcg .
The reason for all the waiting about is because when you add more T4 (thyroid hormone) from Levo, your HPT axis (Hypothalamus /Pituitary /Thyroid axis) takes a little while to notice and then respond to this increased level of T4 in your blood .. once it sees this , the pituitary then reduces the TSH (Thyroid Stimulating Hormone) ..and this in turn reduces your own thyroid production of T4 a bit .
So as a simplified example : if you start with T4 of 10 from your own thyroid.. then you add 5 from levo .. for a short time you have T4 of 15 ( a week or so )....
, but then your HPT axis slowly 'turns down' your own thyroid so it only makes 5.. and then by the time this has settled and they test your blood you only have have T4 of 10 again ... so they add more ... eventually the right dose will balance this out and you will be on enough Levo to keep your T4 level at the right amount for you to feel well.
If at this point you don't stay feeling well , or if you get a GP who doesn't understand how to find the best dose for you , and leaves you on too little for ever ... then it is time to look for someone else .. but in the early days , no one else can get there any quicker ... a lot of the delay is just down to your HPT axis taking it's time to rebalance your thyroid hormone levels to take into account the extra you are adding .
So there are tips on here for what to avoid and what to optimise, in your diet/ vitamin levels etc ... and it makes sense to do all you can and learn all you can while your correct dose is being found... but there's no real short cut to finding the right dose ... and it's reasonable to expect it to take several moths before you feel like 'you ' again.. and it's reasonable to expect a bit of 'snakes and ladders' on the way to getting there .... but hang in there most of us get there in the end .. and by a year and a half after diagnosis, most people are consistently feeling an awful lot better than they were in the first few months .
Hope that's some help . ( if a bit depressing)
It will help you feel more in control of what's happening if you get hold of your actual blood test results like this:
Your explanation and perspective is really helpful.
It’s not going to happen overnight and I have an understanding that what I’m feeling is kind of “normal” under the circumstances. And also the ups and downs are to be expected.
I guess that I’ve had symptoms for quite a while and those have been treated under the heading of depression.
yes , they do tend to think 'it's depression' before they think "? thyroid" .. it took 4 years before anyone thought to test me for hypothyroidism... apparently 'i wasn't fat enough' for anyone to suspect it . but of course 'feeling depressed' is often a direct result of hypothyroidism anyway.
You've done a good thing by finding your way here early on ... a lot of people have no problems on levo and will feel 'themselves' again once settled on the right dose and only pop in here briefly at the beginning .. but some of us had problems and no one else to ask for decades... and between us all we now know a lot .. so we can help people make sure their GP's stay on track with finding the right dose .. and offer reassurance that what you are feeling is not 'just you' .. but very common.
Feeling abandoned by the GP is unfortunately also very common ....... i had to laugh when i first read your post ..because you said 'you just got given a leaflet '.... i was thinking 'boy things have improved no end...they never used to have a leaflet "
They just used to say " take this little white pill everyday, and you'll be better in a couple of weeks ... goodbye"
Wow you got a leaflet, I could only dream about getting one of those (sarc). Clearly if the NHS is handing out leaflets then things must be improving, not. Stick around this forum, you will learn far more on here than you will from a poxy leaflet 😄
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.
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
Bloods should be retested 6-8 weeks after each 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.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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