thyroid levels: I had to have surgery last year... - Thyroid UK

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thyroid levels

deborah111 profile image
11 Replies

I had to have surgery last year and my thyroid tablets were reduced due to being on zolerdex, the zolerdex made my thyroid overactive.

I went for a blood test in feb and had to push for my meds to be put up just had another test and their trying to reduce my meds again.

Iam on Liothyronine 20 micro grams a day and levothyroxine 150 micro grams per day

test resuts from last blood test

T4 13.1

FT3 5.1

TSH 0.02

all the docter was looking at was the tsh result and said its to low but its always been this low, in 2008 its was the same but the ft4 was 18.4 and ft3 5.7

so if i reduce the liothyronine will this push it up she said to reduce it by 20 a week so cut the tablets in half for 2 days.

I lost 2 stone last year before surgery now its going back on but not eating any more still got dry skin and by friday its hard to function just want to sleep.

if any one could give advise would be really grateful as feel the doctor not listening just looking at results of TSH not the bigger picture.

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deborah111
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11 Replies
shaws profile image
shawsAdministrator

The TSH is irrelevent to how we feel when on thyroid hormone replacements, except the GPs are unaware of this.

It is best if you can give ranges for your results as labs differ and it makes it easier to comment on them.

Your results look o.k. but it is how we feel that's the best judge of our dose plus the fact that you are gaining weight again would seem to me that you're not on sufficient.

I shall give you a link I read recently posted by another member.

healthunlocked.com/thyroidu...

This is also another link of how to self-medicate (it is for any NDT (not just the one mentioned) if you don't get some resolution from your GP.

web.archive.org/web/2010121...

web.archive.org/web/2010103...

When you have blood tests for thyroid hormones it should be the earliest possible and fast. Allow 24 hours from your last dose of thyroid hormones and the test and take them afterwards.

This allows the TSH to be at its highest as that's all the take notice of, neither enquire about how you are and have your symptoms resolved.

deborah111 profile image
deborah111 in reply to shaws

thanks for your help

Marz profile image
Marz

Am wondering how your levels of Ferritin - Folate - B12 - VitD are ? Have you had them tested recently ? Low levels could be the cause of your fatigue.

TSH often low when taking T3.

deborah111 profile image
deborah111 in reply to Marz

no results for others it was a full blood test but she only seemed concerned with the TSH level but my TSH has been the same since 2005 so not sure why their questioning it now, she did mention the cost of the meds maybe it all down to budgets.

JOLLYDOLLY profile image
JOLLYDOLLY in reply to deborah111

liothyronine is evidently expensive and only one supplier in the Country. I have been told today that I am going to be taken off it in due course even though I have been on it since 2003.

Marz profile image
Marz in reply to JOLLYDOLLY

That is a scandal - you must fight your corner as others on this forum have. Sorry I live in Crete so am not much help - except that you can buy it here OTC - so if you are planning a holiday then Greece needs to be your destination.

JOLLYDOLLY profile image
JOLLYDOLLY in reply to Marz

I wish! Thank you Marz :)

Marz profile image
Marz in reply to deborah111

deborah111 - the tests I mentioned are not included in the FBC - Full Blood Count - they have to be requested.

Yes everything is down to budgets.

JOLLYDOLLY profile image
JOLLYDOLLY

I am in similar position. I think I may be heading back to zombie land. I have been told that I have to lower my liothyronine to 10mg a day from 20mg and be retested in four weeks. I am on 250 mg of thyroxine. Feeling really miffed but glad I am not going mad and not on my own. The idea is to take the liothyronine from me altogether as evidently people who take it are in the minority!! But really it is too expensive. I know I am harping on about it, but just feel gutted. It has taken me nine months to lose three stone. I can totally relate to what you are saying. Any time you want to talk, please message me. :)

deborah111 profile image
deborah111 in reply to JOLLYDOLLY

When I went on zoladex last year to shrink womb ready for hysterectomy I lost 2 stone in 5 months first time I've lost weight in 16 years that's how long I had thyroid problem, started when I was in early 30's , I changed doctors after a year as they weren't treating me properly doctor said I was to young to have thyroid problems but blood test showed it was very low, always a battle to get my medicine increased, since my operation last September had two blood test but they won't put tablets back to what they were. It does come down to budget she as much as told me the liothyroxine is expensive. Well done you for losing the weight how did you do it.

JOLLYDOLLY profile image
JOLLYDOLLY in reply to deborah111

Sorry for saying this, but I am glad you changed your dr as he/she was talking a load of rubbish. I was born with a partial gland so have always been on medication. A thyroid problem can start at any age. Regarding losing the weight, have you heard of Slimming world? It has taken me nine months to do it. I think I have lost the last stone at least twice. I think some of the weight loss is down to bereavement (we lost our mum in February) Fortunately we all are doing Slimming world in our family, which helps. My younger sister, has Down Syndrome and lives with us, she also has an underactive thyroid but was not diagnosed until she was in her late 20's. My periods have now stopped hopefully (not had one for 5 months) thank goodness, nearly ended up with blood transfusions twice due to how heavy they were. Yes evidently the liothyronine is expensive as there is only one pharmaceutical company that supplies it in the UK. But I don't think that we should be penalised because of that. But we are in the minority. I was told the money would be put to better use. Never heard of zoladex before though, what kind of drug is that? I hope you are recovered from your hysterectomy? Take care :)

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