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feel terrible - sure my thyroxine needs upping but GP says no!

12 replies

lisasimpson · 19/05/2008 14:45

I was diagnosed with hypothyroidism in January, started on 50mcg of thyroxine which has gradually been increased to 125 mcg. My initial T4 result was 4 and my TSH was 150. Although a month ago my T4 is now 14 my TSH is now 40. This is when I had the latest increase. Only four weeks later and I feel bad again but GP says there was "no way" it could be due to my thryroid as I would not be still experiencing symptoms on 125mcg. I can't be re-tested until June 15th and it's probably just depression "which will probably just pass on its own" does this sound likely? I have the same sypmtoms as I had before I was diagnosed, a feeling of constant pms but how can I know for sure?

OP posts:
mousemole · 19/05/2008 16:55

Hi Lisa. Am I right in thinking you dose was increased to 125mcg a month ago when your TSH was 40 ? In my experience, whatever dose you are you on it takes about a day to lose a TSH point IYKWIM. So, if you were 40 a month ago you are now probbaly at tsh 10 or so which is still pretty hypo. To put it in context, if my TSH is above 5 I feel pretty lousy and only feel normal when it is between 1 and 2. Dont get disheartened, it takes a while for the thyroxine to kick in and for you to stabilise. Just relax and try and forget about it as much as you can. 125mcg sounds a good dose, and will probably take you to normal levels soon. PS- I have found GPs to be lacking in Thyroid problems and only got any sense when I saw an endocrinologist.

PrincessPeaHead · 19/05/2008 17:16

You need to get your bloods done again. On a TSH of 40 you would feel like crap. The fact that your GP says categorically that "you would not still be experiencing symptoms on 125mcg" makes me worry that you need to see someone else. It is not your GP who decides what thyroxine level is right for you, it is your pituitary gland. And if it is pumping out TSH, it thinks you need more thyroxine.

Why can't you get tested again until 15th June? If you haven't been tested for a month and your dose changed a month ago, you can certainly be tested again, this week or next, and it will give you a good idea of how your levels are doing. Certainly if you still feel rotten I'd push for that.

I haven't got thyroid probs btw but my 7.5yr old ds was born without a thyroid, so I've been getting his bloods tested and looking at his levels and juggling his dosages since he was born. And the variations in thyroid needs in children who are all lacking a thyroid, are all the same age and seemingly similar builds etc is really surprising. It is a very individual thing.

PortAndLemon · 19/05/2008 17:21

My brother takes 200mcg, but he had to get his consultant to write a string of increasingly snotty letters to the GP before the GP would prescribe it, because the GP had the same attitude as yours.

mousemole · 19/05/2008 17:43

ps, my dose is 175mcg and I am normal weight and heigh.

lisasimpson · 19/05/2008 18:29

thanks everyone, GP rang the hospital lab and they will only test eight weeks after previous. I would have thought with a TSH of 40 it is unlikely to have miraculously corrected itself so quickly! I also didn't think 125 mcg was that high compared to some people I have heard about.
I think I will give it a week and get a second opinion from on of the other GP's.

OP posts:
lisasimpson · 19/05/2008 18:34

I would also be interested to know why some people get referred to consultants/endocrinologists? is it because it might be due to an underlying cause? one of the gp's did suggest testing for a potential cause but I'm not sure what difference that would make..

OP posts:
TheBlonde · 19/05/2008 18:39

They are only supposed to increase your dose gradually and repeat bloods every 6-8 weeks

lisasimpson · 19/05/2008 18:41

Yes that's what I thought, but don't fancy feeling like this for another four weeks.

OP posts:
TheBlonde · 19/05/2008 18:55

It can take 2 months for the TSH to stablise

mousemole · 19/05/2008 20:02

yes, worth waiting. Hyper can also feel horrendous so you dont want to swing violently the other way. Gradual is best with thyroid related issues.

lisasimpson · 19/05/2008 20:12

thanks again, I'd better warn DH and the kids!

OP posts:
DarrellRivers · 19/05/2008 20:17

Best way is gradual, i have seen people get increased thyroxine way too quickly without levels being checked properly and they have been overtreated, and ended up with arrhythmias and all sorts.
It may be that you need a higher dose than 125mcg, but take it slowly.

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