Self medicating

Fed up of waiting for the NHS who are dragging this out as long as they can for that magic 5 on the TSH (im 3.54) after seing the Endo for 1st time and also i have just posted back my private bloods to blue horizon ...i decided this morning to start myself on 50 mcg of levo i bought  in the pharmacy while out in Turkey...i just cannot go on feeling like this any longer...i have never felt so blooming ill in my life!!! I am a lone parent of 5 kids 3 are autistic and i help look after my parents my mum has alzeimers and my dad bowel cancer ( they live together at their house accross town) i need my energy which has been cruelly taken away and replaced with a foggy head beyond belief the energy level of a gnat, unexplained weight gain.....freezing cold...thinning hair bla de bla gp and endo keen on keeping this going i am not ive had it!!! 

When blue horizons tests come back i will know the full story have requested the full 12'that includes T3 ( my gp and endo refused) and a rT3 i wil then know if i am wasting my time with levo and reassess.... Feel so alone in all this..sourounded by people who think doctors know best.....and its getting to me

I eat superclean and (was) going gym every day now only have the energy 3 times and i forcing myself to do that....ive worked my butt off to be healthy and feel im being forced to be ill...infact i feel im going nuts with it all....hope someone out there can relate to this? All advice and suggestions welcome

19 Replies

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  • You are definitely not alone I am in the exact same position, I've also just sent BH bloods away this morning to try and get to the bottom of my symptoms as my doctor is also waiting on the magic 5 I'm currently 4.3 up from 3.5 in 20014 been so ill also 

  • Its disgusting and barbaric and if it wasnt happening to me i would say it was an outright lie....i would have prefered to have had treatment under the NHS but like so many this is clearly not going to happen unless i allow myself to be come more unwell...im just no longer prepared for that eventuallity as i wont have the energy levels to help myself then...probably agreeing to euthanasia!!!!!

    I have gone from megga energetic to a complete sloth how can they possibly wait for me to be half dead???? Why??? The gp offered me anti depressants...im not depressed in any way shape or form!!! So if they can give them out like smarties why not the hormone i clearly need??? Aagghhhhh 

  • I hear ya!!! I was offered the exact same!! I too have went from working 2 jobs, being a full time student and single parent of 2 to having nothing all because of an out dated blood test and poor treatment from so called health professionals it's sickening and constantly being told there is nothing wrong or that you are depressed makes you question your own sanity. So believe me you are definitely NOT alone and I'm relatively new to this group but It's now my go to for anything thyroid related as you get more support and advice on here than from any doctor I've seen so far

  • Yes very very true i joined here couple of months ago along with a few FB groupd best thing i ever did...i definately know more than my GP and ENDO put together thats a fact!!! If it wasnt for this group i would have certified myself loop da loop 

  • Hi KGeorge, 

    my heart goes out to you completely. Your right it's criminal how we get treated when it comes to the thyroid.

    I completely understand you self-medicating with your family situation, your can't afford not to.

    I struggled for years to be diagnosed as TSH always just in top of range. 

    I finally was diagnosed and started on thyroxine and was well for 18 months but then took nose dive and ended up self-medicating on t3. 

    It was life changing for me and only because of the knowledge and support from this site am i well today. It hasn't been the doctor's or Endos who have achieved this for me, it's been this site and me!

    I think you have nothing to lose and only everything to gain by starting on thyroxine given your circumstances.

    It will take about 6 weeks or earlier for things to start to improve. Keep people posted of how you feel and recheck bloods in 6/8 weeks. 

    Good luck 

    Sparkly x

  • bless you thankyou so much xx

  • Posts like this should be shown to doctors in training to demonstrate the fallibility of the holy TSH test. Perhaps if I wedged my doctor's b*lls in a door and slammed it a few times, then said, hmm, not hurting quite enough...let's just wait and see...although I think you're depressed - here's a script for some ADs - there'd be uproar.

    I just can't get this, to save my life. Why is there such intransigence to even begin to treat ?

    Best to you KGeorge. Just remember 50mcg  / day is a starting dose. ( Although my GP wanted to keep me on it, as I was 'In range' - TSH 4.5 and felt like I was dying )

  • Thank you for taking the time to reply to me..means a lot. ..any advice on if/when I shd up dose

  • I need a call for the wise ones ( the admin team and some other clever dudes ) button really ! So please remember, I'm not medically qualified.

    But my advice would be to stay on the starting dose for six to eight weeks then begin an increase at 25mcg intervals, waiting six to eight weeks between increases and see how you feel. You can get blood tests done via thyroiduk.org.uk/tuk/testin...  Ideally we hypos seem to need a TSH of <1 to feel well and T3, which GPs/NHS labs don't often test for, in the upper third of the range. When you're having blood drawn try to get it done as early as possible in the day and don't take that day's levo until you've had it done.

    Although this is primarily a site about NDT, I found it useful   thyrophoenix.com/ Then of course there's the wonderful Sheila Turner and TPAUK tpauk.com/main/

    You can get well but my word it's a struggle for some and I include myself in that unhappy band.

    I think quite the biggest bummer concerning this condition is the time it takes to truly recover. Recovery is slow and sometimes it's two steps forward and one back but just keep b*ggering on and read and question and learn. Take what you need and leave the rest. There are a succession of ever changing trolls to avoid but for the most part this is a top resource as you turn your life back to the path you hope to follow. I must go offline now I have a looming deadline :( good luck x

  • Exactly my plan thankyou friend x

  • Not claiming to be one of the clever dudes at all - but Rupenzel's advice is spot on in my book. 

    Plus I loved the comment about shutting the doctors b@lls in the door and offering antidepressants. Best laugh I've had all day :)

  • Brilliant yes

  • I wish my GP knew about the magic 5 for TSH. My TSH has been over 5 for years but hasn't reached my GPs magic 10 yet despite all the symptoms increasing year on year. Enough is enough! Time to take control for ourselves. Take care Gentle hugs Joolz.x

  • Omg 10?? That's awful I feel like death at 4 couldn't bare having to wait til 10 you should consider changing gp 

  • TSH of 10 is from the lab according to my GP and he is very reluctant to re-test it or treat unless they say so. I changed my GP a few years ago to the one I have now but it looks like I am going to have to change GP again as I have just heard my surgery is about to close due to them being unable to get anymore GPs to work there. Gentle hugs Joolz.x

  • Oh gps and there MAGIC numbers I'm symptomatic at 4 but need to wait til 5 so I'm having my own bloods done and a 2nd opinion maybe an idea as doctors tend not to listen to patients but ur gp may listen to another doctor 

  • Same..im not waiting any longer enough is enough

  • 10???? Omg sorry i would be in serious need of an undertaker

  • Thing is you could change gp but if the lab range is 10 in your area then unless you find a sympathetic doctor who wil go on symptoms...same you are gonna have

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