I realise that I am taking a risk, but I will admit to self medicating in a desperate bid to feel better. I started on 25mg of Levo for a month, and have now moved to 50mg, which is still half of what the dosage for my weight should be, but thought that as I am doing this DIY in the dark, I should approach with caution.
Is there any advice for me? Anyone else taken this approach?
I've got a private endo appointment later this month with someone from the list, so I hope that I will get some help soon.
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NotAFlyingMonkey
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I self medicate because my TSH had doubled but was within range. I did as you’re doing i.e did in 25mcg increments and waited a month or 6 weeks between changes. Once I felt it was about right I stuck with it for 6 weeks and then paid privately for a blood test to check. Low and slow is the way to go! Good luck
Have you followed the advice SeasideSusie gave you 25 days ago and SlowDragon 2 days ago?
I understand your desperation but I suggest you follow that advice first.
I self medicate with high dose T3-only, (very long story) so understand your desperation but I also understand why exploring the NHS /private routes first is advisable particularly since you have yet to be diagnosed.
I also understand why self medicating can be the last resort!
If it's any consolation, many of us arrived here feeling exactly as you do, and are fortunate to have found the help we need. You are not alone.
I was aged almost 70 - and after a lifetime of health problems could barely function - when I arrived here. I eventually discovered that I have a form of thyroid hormone resistance/ cellular hypothyroidism and need a supraphysiological dose of T3 which I have to source from abroad in order to self medicate. My medics advised against this and warned of dire consequences, I'm glad that I ignored their advice and followed both my own research and the excellent advice offered here.
I now function again, but the damage done by (it now seems) a lifetime of being wrongly diagnosed and wrongly medicated has taken its toll. This forum has kept me alive!
Believe me I know what it feels like to be desperate to feel better.
I wasn't offering endorsement... only a different perspective.
As for advice, read widely from reliable sources and learn, because knowledge is power!
I hope you find your way forward, you will find no better thyroid advice than here but in the end there is only one person who can decide what you do...
Please come back when you have new labs, and find out how experienced and knowledgeable members can help you.
Best of luck
DD
Many self-medicate because of doctors´ ignorance. If you have to choose between never feeling better under the care of a doctor and self-medicating, I suspect most prefer the latter...! Most of us know our bodies better than any doctor. I have given up on doctors and now order all my meds online, including HRT and blood pressure medication. I just decided I was not willing to waste more time and money on doctors. Best of luck!
Sort of... after NHS diagnosis /prescription i went for blood test on prescribed dose ( 50mcg at first ), but since GP had previously told me my dose would probably have to be gradually increased as more of my thyroid was destroyed, and since i had started to feel less good again a couple of weeks before the test ... i put dose u to 100mcg the next day... saw GP the following week for blood results and told him i'd increased after test.. he said 'blood test was OK' (TSH was 2.9.. down from 6.8).. but he also said 'OK, carry on with 100mcg , i'll increase prescription , come back for retest in 5/6 months'
Did that, and had retest, but did same again... increased by myself to 150mcg the day after blood test due to feeling less good again for last month... then saw GP the following week for blood results and told him i 'd increased after test... he said blood test was Ok (TSH was 2.5, Total T4 comfortably in range) , but OK carry on with 150, i'll increase prescription, comeback in 3 months...
Did that .. stayed feeling much better on 150mcg... had test after 3 months (TSH 2.7, TT4 a bit higher but still comfortably in range)
stayed on 150 ...
i suspect if i hadn't pushed things along like this i might have been left on lower dose .
Advice .. i didn't know anything about thyroid back then. (2003)
I now think going from 100 to 150 in one go was a bit rash (to say the least) .
As it turned out , i did need that much , but some people might have gone very overmedicated on 150 , and i would have messed myself up if i'd only needed 112.5mcg or 125mcg.
At the time i had no idea i could ask to see the actual results , so i only knew what GP said ... 'they are OK' ....it would have been better to know what my results were and how it all worked .
I didn't know what a TSH or TT4 was, or why fT4 would have been better.
I only knew that my aunty took 200mcg .. so 150mcg didn't seem so rash at the time.
Bloods should be retested 6-8 weeks after each dose increase
ALWAYS Test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Previous posts show extremely low B12
What vitamin supplements are you currently taking
Important to regularly retest vitamin D, folate, ferritin and B12
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
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels common as we get older too
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 and 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
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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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