went to gp again ,seeing gp for 10 weeks ,have ... - Thyroid UK

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went to gp again ,seeing gp for 10 weeks ,have hashimotos but gone hyper for unknown reason,had to plead for endo referal ,seeing them in ja

susiebow profile image
19 Replies

n.Was feeling a little better but now feeling jittery again and hyper.Have reduced thyroxine slowly so why am i going hyper .Asked for tsh ,t4 and t3 and antibodies test she said lab will not do t4 unless tsh abnormal.She also said everything else is normal in bloods ,adrenals etc and that I should be reassurred by this and is it anxiety!Can barley function ,I said if it is not thyroid what else could it be ,no answer.Just left to suffer till it either gets worse or better.

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susiebow
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Redditch profile image
Redditch

what's your temperature? that will tell you if it's anxiety or hyper.... on the upside... if you ARE hyper.. you could be cured.... happened to me..

Happily on my meds, symptom free and then one day out of the blue I felt terrible... saw my endo.. TSH was in my BOOTS 0.01 suddenly over-medicated

it could be thyroiditis, an infection - you would normally get pain in your neck from this

it could be just a virus making your thryroid jump start

or it could be that you're over your auto-immune attack and don't need it any more

Take a breath and take your temperature.. if it's high. you're hyper if it's LOW you're just toxic...

Your TSH could be "normal" but you may be failing to convert t4 to T3 or you could be failing to absorb it due to low vitamin D or adrenal issues or leaky gut..

but take your temp and tell us what it is

Heloise profile image
Heloise in reply to Redditch

Redditch, susiebow responded but didn't use the Reply button so check back to this thread.

susiebow profile image
susiebow in reply to Redditch

had hashimotos for 10 yrs ,i will go and take my temp ,but do know my temp is normally low anyway,you have been very helpful and reasurring .temp a no

rmal 36.5 under arm.10 weeks ago went hyper tsh 0.01 free thyroxine 26.9 max was 18.have reduced from 150mcg a day slowly down to 100 mcg one day and 75 mcg the next ,have never been on such a low dose before .I did take teva make for years (they recalled there make)and have struggled to find suitable replacement decided on Workhardt.Changed to mecury pharma after going hyper .Just cant seem to settle thyroid down and feel well again.Will this get better.

susiebow profile image
susiebow

had hashimotos for 10 yrs ,i will go and take my temp ,but do know my temp is normally low anyway,you have been very helpful and reasurring .temp a no

rmal 36.5 under arm.10 weeks ago went hyper tsh 0.01 free thyroxine 26.9 max was 18.have reduced from 150mcg a day slowly down to 100 mcg one day and 75 mcg the next ,have never been on such a low dose before .I did take teva make for years (they recalled there make)and have struggled to find suitable replacement decided on Workhardt.Changed to mecury pharma after going hyper .Just cant seem to settle thyroid down and feel well again.Will this get better.

Redditch profile image
Redditch in reply to susiebow

Let's have the temp.. Susie... this will get better.. Promise...

susiebow profile image
susiebow in reply to Redditch

36.5 under axilla

Redditch profile image
Redditch in reply to susiebow

OK well that's pretty good.. so unlikely to be a hypo/hyper issue.. keep taking this temperature though, you could have a virus and it could go over.. steady the Levo on 75 and keep monitoring... if it drops, go back up to 100... it WILL settle down - keep taking lots and lots of vitamin C 3 g a day minimum..

Redditch profile image
Redditch in reply to susiebow

Exactly the same thing happened to me.. you just need a maintenance dose because you've recovered from the auto-immune onslaught.. it may come back but hopefully not and hopefully you'll be able to drop your 75 to 50 etc.

Things to monitor your end

- symptoms

- temperature

- Weight

If your weight begins to rise, and your temp is low then add another 25

If the opposite then drop 25

I was on 2 and a half grains of NDT and have now just about settled on 1 grain.

susiebow profile image
susiebow in reply to Redditch

Hello Redditch,your post have been very helpful.I am scared becuase I do not feel I had a virus when everything went haywire.Can your hashimotos just go like this after many years.Ido feel a little better and then a sudden jitteriness ,then low then settles ,still not feeling well, but enough to just cope. GP said it could be thyroid dying and dumping thyroxine .

Redditch profile image
Redditch in reply to susiebow

yes well most GPs know less about your thyroid than your best mate does, let's face it... My private Endo doesn't know why mine did what it did.. Honestly they know nothing

I felt very strange when I suddenly went Hyper.. I rang Blue Horizon and got a FULL FULL set of tests for EVERYTHING THAT DAY.. then I cut out the thyroxine because I KNEW I was over-medicated..

Saw the endo on the saturday when she said.. Oh it must have been thyroiditis.. - I said.. it couldn't have been because see here in my full blood test, negative antibodies

She said.. oh well then you must have had an infection - I said, it can't be because see here in my full blood tests, no elevated white blood cell count

She said.. oh well then I don't know.... so I said.. I think I'm cured... the antibodies have gone.. so now I'm just left with a thyroid that is either going to work, or isn't.. she was supportive and I'm having weekly blood tests until we get the maintenance dose right.. I was hoping I could get away with no medication but sadly.. after 2 weeks started to feel rough so am adding it in gently....

Get Wednesday's blood results later today... TSH was 0.01 on THAT dat then 0.04 after a week of no meds then 0.49 after a week of 1/2 a grain so today's will be after a week on 1 grain... we will see.....

I don't feel FANTASTIC but think maybe that I've only got Armour in little doses and I prefer Erfa... so who knows? But I am certainly not feeling ill..

Redditch profile image
Redditch in reply to susiebow

ooh stop press latest results TSH 1.07 FT3 3.4 and FT4 8.4 so.. upping the dose a tiny bit.. here we go

susiebow profile image
susiebow in reply to Redditch

Hi ,I just got results back tsh 0.85 free thyroxine 16.4,but still feel hyper ,I have always felt better around 3.00,should i reduce meds

Redditch profile image
Redditch in reply to susiebow

Yes

because of 2 things

1 you feel hyper

2 you always feel better around 3

drop it by 25 and see how you go

check temperature and weight if temp goes down and weight goes up put the 25 back

you can always put it back if you need it.. trust yourself..

susiebow profile image
susiebow in reply to Redditch

Thanks,one last thing why after all these years on higher dose do I now need such a low dose

Redditch profile image
Redditch in reply to susiebow

hard to say without an antibodies test to compare with an earlier one --

could be that you're cured - you don't have hashimotos any more but your thyroid has had a beating so it does need some support maybe forever maybe until it recovers

could have been thyroiditis which is a flare up that spews out thyroxine that is going to stop so you'll end up back on your regular dose

Nobody knows....

susiebow profile image
susiebow in reply to Redditch

thanks

alangardner profile image
alangardner

just remind your doctor that he/she pays the bill from the lab [ out of their own trust fund ] ...AND IF THEY INSIST ON THE TESTS THE LAB HAS TO CARRY THEM OUT .....and the lab cannot ---as they sometimes do ---- over-ride or supercede the doctors instructions ........this is a fact directly from my own gp who happens to be a member of the local PCT, and also a consultant surgeon as well as a lecturer at a major teaching hospital ==== he knows what he is talking about ===== ..... hope this helps ....alan xx

Alli1 profile image
Alli1 in reply to alangardner

But despite all this the Labs do not test what the GP requests and it very much seems like the GP have little comeback, in many cases I think the GP's don't just bother to get back to the Trust Lab and demand they retest. I have had many discussions with Dr's about this one and they know it goes on and just shrug their shoulders. I'm a nurse and work in a large Trust and know that Labs will try to save budgets! . There is another thread on this site about this very subject and asking if Thyroid UK can put any pressure on

alangardner profile image
alangardner

hi alli , I have spoken with my gp at length on this [ I sit on his own patients panel ] and he is trying to address this very problem ---- it is not only thyroid tests but others ---that the labs seem to be overriding specific instructions from gp's citing the cost ...... but so far he continues to hit brick walls , although he has found little success one that does work is he states to the lab [ personally ] that without the tests being carried out HE would pass on the FULL responsibility of the patients health care to the lab legally ,because he is unable to take responsibility without the results ..... this seems to be a tactic that actually works , but takes a little effort from your gp .....I am certain that if we continue to chip away we will get there and if it happens in one trust/area I will insist on the precedent being made .....hope this helps to reassure you a little at the very least because your not alone in this .....LoL alan

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