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Thyroid help needed please. Consistent low T4 with normal TSH...

67 replies

LacksDaisies · 08/10/2010 14:18

Brief history
41 yo female with depression. Was on 20mg but getting worse so increased to 40mg which hasn't helped. As had other niggling symtoms which could be thyroid related (chronic fatigue, weight gain, painful joints esp hands and feet, hair problems, the worsening depression) doc ordered FTT which showed possible thyroid problems and asked me to have further blood tests

Repeat test has come back, and although I don't know the exact numbers, the summary is "consistently low T4 with normal TSH"

Am booked in to discuss with the GP on Monday, and have tried to find out information but it would appear that thyroid results are a bit of a minefield and have left me more than a little confused. From what I understand the normal TSH could be a red herring as the brain overcompensates for an underactive thyroid by producing more TSH and that "normal" is a pretty broad brush anyway. I also found one snippet of info that said that fluoxetine may cause abnormal levels, and am worried that this will be dismissed due to the ADs even though there are lots of other symptoms.

any advice from those in the know would be greatly appreciated, especially things I should be asking my GP.

Poorly DS2 so have to post and run but will be back later.

TIA Smile

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LacksDaisies · 08/10/2010 15:51

oops, that should have read "was on 20mg fluoxetine"

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LacksDaisies · 08/10/2010 17:56

hopeful bump

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LacksDaisies · 08/10/2010 19:26

someone? anyone?

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phipps · 08/10/2010 19:28

I can't help but came to say I am in a very similar situation and have had 2 lots of tests done in 2-3 weeks and got different results each time so are planning on ringing the doctor on Monday for an appointment.

LacksDaisies · 08/10/2010 19:35

thanks for your reply phipps Smile

If, like me, you've googled, you are just as confused no doubt.

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phipps · 08/10/2010 19:42

Haven't googled since I got my second lot of results.

ptiger · 08/10/2010 19:53

lacksdaises. I had to have my thyroid removed and am now on thyroxine tablets, though it was removed due to my having a goitre, some of my symptoms tiredness, hair loss were very similar to yours. I had hypothyroidism and anaemia. I still take additional iron now. Untreated anaemia and an underactive thyroid can give all your symptoms including the depression. When you see your doctor, ask about your haemoglobin levels, if they are also low then I think you can realistically ask him to consider prescribing you for a trial period thyroxine tablets. 8 weeks is usually the amount of time to take the tablets before you have another blood test, you may also need iron supplements as well.
don't give up, if this is the problem you will start to feel better. Good luck

l4k · 08/10/2010 20:45

hi
low t4 and normal tsh were my first clue to secondary hypothyroidism which in my case is due to pituitary failure.
Your gp needs to refer you to a good endocrinologist.
good luck x

LacksDaisies · 08/10/2010 20:52

thanks ptiger. they did a full blood count as well and that was normal apparently. I don't have a goiter (I think), but I do have what feels like a little bit of fatty tissue just above my collarbone a little to the left. It's been there for ages, but it was only today that I realised it might be connected as I had no idea even where the thyroid gland was until I googled. I've also over the last week felt like there is something stuck at the back of my throat. I knit a lot and thought it was some yarn from me biting it off when I couldn't find my scissors, but a week later it's still there.

Am soooo fed up of feeling non-specifically ill Sad

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ArthurPewty · 08/10/2010 21:13

This reply has been deleted

Message withdrawn at poster's request.

moppetymum · 08/10/2010 21:20

Hi,
all sound like thyroid related probs. I had a few of those inc lump in throat/neck, dry hair, cold feet, tiredness. If you are prescribed thyroxine from doctor you'll soon feel better - they will gradually increase the dose.
Not sure about the depression side of things.
If you are pregnant it's really important to get the thyroid medication sorted out for the baby's development.

LacksDaisies · 08/10/2010 21:42

Leonie, we have private health insurance, but I have read getting a GP referral can be quite tricky, if the levels are within "normal" limits.

It's all very confusing, especially the relationship between T3 and T4 and the levels of TSH vs T3 and T4.

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LacksDaisies · 08/10/2010 21:48

thanks moppetymum; not pregnant so no worries there thankfully. Haven't felt right since my DS was born 2 years ago, but much worse recently.

I forgot to collect my DS from school this afternoon, and then burnt the kids tea as I had forgotten it was on and finally thought my DH was in bed when in fact he was working in the garage (he had said he had a few things to do before he was going for an early night) I almost locked him out of the house. All tiny little things in the grand scheme, but things like this are happening constantly and I feel like I'm going mad. I try to remember things, and am getting really frustrated that inspite of being determined, they just disappear into the ether. I have missed so many appointments as a result as well.

Sorry to moan, but everyone in RL just thinks it's me being a bit dizzy and dim and don't really appreciate how demoralizing it feels.

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ArthurPewty · 08/10/2010 21:49

This reply has been deleted

Message withdrawn at poster's request.

LacksDaisies · 08/10/2010 23:14

would they routinely have tested for T3 as well? They only mentioned T4 when I phoned.

What should I be asking my GP when I see him on Monday?

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ArthurPewty · 09/10/2010 08:42

This reply has been deleted

Message withdrawn at poster's request.

phipps · 09/10/2010 17:26

That might explain why the clinic decided not to bother doing T3 which meant I had to go and have blood taken again and then three more tests done Angry.

ArthurPewty · 09/10/2010 17:28

This reply has been deleted

Message withdrawn at poster's request.

phipps · 09/10/2010 17:30

What right do they have to not bother doing it when the GP has requested it?

LacksDaisies · 09/10/2010 21:46

thanks leonie Smile I am armed with quite a bit of information now; I bet my GP hates me Wink

I read somewhere that the current tests were only developed relatively recently (1970s?)and until then docs diagnosed on symptoms alone; now they ignore the symptoms and rely on the numbers in a little box.

today has been trying to say the least; brain fog is getting worse to the point that I am having to do everything three or four times before I finally get it finished and I am forgetting even the most basic stuff; like where to put things in the kitchen. I also feel like I I can't think properly, and if there is too much noise going on around me I just want to bang my head. Really feel like I'm going mad Sad

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fishesgirl · 09/10/2010 22:54

As l4k says, low T4 and normal TSH are suggestive of a pituitary gland problem, not a primary thyroid problem. Your GP should refer you to an endocrinologist - you should be investigated for other pituitary hormone abnormalities.

Your GP may be able to arrange some of the blood tests you should have - the lab biochemist or endocrinologist may be able to advise the GP over the phone initially to get the ball rolling.

GP unlikely to want to give you thyroxine yet - this is an unusual situation and can also be potentially dangerous if other pituitary hormones are low too.

Did you bleed a lot after your DS was born? Post partum haemorrhage can be linked to Sheehan's syndrome which is a cause of pituitary failure.

Hope all goes well at the GP's on monday

moppetymum · 09/10/2010 23:15

oh all sounds awful, hope you get sorted out soon x

l4k · 09/10/2010 23:25

Sheehan's syndrome is what I have.
I had all your symptoms and more.
are you dizzy and weak?are you losing body hair?you may also have adreanal insuficiency.you must see a good endocrinologist,my gp refused to refer me so i rang a different one in the practice and asked him to refer me privately.After that 1st visit the endo transfered me to his nhs list.
I know how hard it is just to get through the day feeling like this,please get help.x

LacksDaisies · 09/10/2010 23:54

oh, I missed your first post l4k, sorry Blush

I had read that somewhere

Yes to the hair loss, although I was never very hirsute in the first place. My arms are devoid of hair now, my lady garden is patchy to say the least Blush and I only need shave my pits once a month, if that!

I have other symptoms as well (too many to list) to the point that I feel like a hypochondriac and everything is just niggly and unspecific. I didn't lose too much blood during labour, but I was horribly anaemic after having DS2 to the point that it was borderline whether they were going to transfuse me or not. I also have coeliac disease and iron deficiency is a common side effect of that.

Will ask for a referral through DH's work insurance scheme. I am certainly getting my money's worth out of it; so far one gall bladder removal, shoulder ultrasound and a course of physio in less than 2 years.

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4plus1 · 10/10/2010 00:04

Hi lacksdaisies, I have hypertyroidism but experiencing some problems similar to yours. The general brain fog has made me unable to even keep a train of thought in a conversation, forget where on earth i'm driving to and just being vague alot of the time. I think the hard part is because you look normal, as in not sick people just dont realise the effect something like your thyroid has on so many functions in the body and on your mental well being. I ve really given up trying to explain it and only talk about it with close friends. I have found the thyroiddisease.org website useful and it has a good forum as well. Hope you feel better soon