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Thyroid Low Thyroxine Help Please

(19 Posts)
PowerPants Sat 15-Dec-12 00:23:46

Rockin - have had exactly the same problem. Sent to an endo who had NO idea as he deals with diabetes, then sent to a colleague of his who was the same.....If I get anywhere i will let you know. Am prepared to travel to London now....

rika - you are so like me it is uncanny, I have all those symptoms. My dh cannot believe how cold I get despite the house being kept so warm people start disrobing as soon as they come in. I feel terribly anxious and little things stress me awfully. It is a physiological anxiety though. And I feel STUPID. It's like I can't think clearly. The aching body really troubles me - I just hurt everywhere like when you have flu.

It's bloody miserable isn't it? sad

Am ringing my GP on Monday.

Rikalaily Fri 14-Dec-12 14:42:20

Oh forgot to add that I get pain between my shoulderblades too.

Rikalaily Fri 14-Dec-12 13:16:32

powerPants I am extremely tired, aching in my bones and joints (my body feels like it does when you get a cold), headaches, chest pains, palpitations (had 24 hour ECG and never got any palpatations that day!) Shaking hands, low appetite but overweight, foggy brained and I feel freezing cold, infact my actual body temp is low, when taken with an ear thermometer it is usually around 36.2 and has been as low as 25.7 while in the house. I'm sat here in the house with a thick cardy on, thermostat says the house is 21 but I feel cold and shivering and my hands are ice cold, wearing socks and my UGGS and my feet are cold too.

Now and then I feel almost normal for a week or so at a time but can't sleep and feel anxious, the doc said my thyroid is swinging both ways atm and I know when it's going to more overactive because I feel better and have enough energy to get through the day. I've had a biopsy done on my thyroid because the nodule was found to be very vascular on the ultrasound so they wanted to rule out cancer. It came back clear.

RockinD I was under an endo up until last year but they signed me off because my thyroid is too stable to justify being seen by them. My mum had Addisons disease so I'm at higher risk for endocrine disorders anyway because of that.

Tbh I think my thyroid might have been overactive in my teens/early twenties. I could never put on weight, ate like a pig, loads of energy, only needed 3-4 hours sleep a night, felt anxious all the time. My first was actually born 5 weeks early, I was 8st 3lb when I got pregnant and 8st 7lb when I walked out of the hospital which shows how I couldn't put weight on. Since having my second child my weight went up (actually went up to about 14+st)and tiredness etc kicked in etc, went to the opposite again when I split with my ex, huge energy, massive weightloss (normal after a split but it was me who ended it and was actually a relief), about half my hair fell out then it swung back the other way after my last baby was born.

This week I'm actually not feeling too bad, I've got more energy but my sleep is broken and I'm having mad dreams, have had the energy to want to get up and clean etc but my body is still aching like crazy and still cold. it's driving me nuts - Oh have also lost 8+lb in the last 2 weeks without doing anything different.

RockinD Fri 14-Dec-12 12:08:57

With TSH dropping off the bottom of the range, low in range FT4 and a respectable FT3, you are neither hypo (raised TSH, lower FT4 and FT3) or hyper (low TSH, raised FT4 and FT3) and so don’t fit into an obvious category.

This suggests that there is something going on further into your endocrine system, that it will take a specialist endocrinologist to find and treat.

How you locate this rare animal I do not know. I have different issues, but I have seen eight NHS endos and all but one knew about nothing other than their speciality, which in all cases was either diabetes or PCOS.

PowerPants Fri 14-Dec-12 00:35:27

Oooh interesting rika, we are in same boat sad. I have low Vit D (32) and v high prolactin. have you had anything like an MRI on your pituitary or thyroid?

When you say you feel crap - I feel weird and crap, headaches, dry skin, aching all over, no energy and this odd feeling that someone is compressing my neck and shoulders....

Rikalaily Thu 13-Dec-12 22:32:11

I'm going through the same, T4 is always around 10.5 -11, last TSH was 0.34 and T3 was 5.5. Never get treatment because TSH is juuuuust out of the 'too low' range but feel like crap. Have got a 3cm colloid nodule in the left side of my thyroid and low Vit D too.

PowerPants Thu 13-Dec-12 22:24:48

Thanks digerd - will research!

digerd Thu 13-Dec-12 17:26:50

There is a Thyroid test, I had in Germany called a TRH - Thyroid Releasing Hormone. That tests the Pituatory-Thyroid interaction. Ist blood is taken, then an injection is given of TRH. After 30 minutes blood is taken again and tested if the reaction is normal or not.

PowerPants Thu 13-Dec-12 00:18:12

Thanks merci. I have googled and there is a weird condition called hypopituitaryism (sp?). Very strangely I have had hugely high prolactin for decades and no one could tell me why so I may have an answer.

mercibucket Tue 11-Dec-12 19:35:21

You can also refer your GP to the book 'understanding thyroid disorders' where in the questions part at the back he says GPs should be suspicious of a high-normal tsh (he suggests over 3.5) and low t4 and treat with thyroxine
Op, I think there is also a separate condition where tsh is ok but t4 is low. Your GP should look into that.

mercibucket Tue 11-Dec-12 19:35:21

You can also refer your GP to the book 'understanding thyroid disorders' where in the questions part at the back he says GPs should be suspicious of a high-normal tsh (he suggests over 3.5) and low t4 and treat with thyroxine
Op, I think there is also a separate condition where tsh is ok but t4 is low. Your GP should look into that.

me23 Tue 11-Dec-12 15:55:14

Whoops just saw need tp0 and tgab. Hope you mange to get some answers powerpants.

me23 Tue 11-Dec-12 15:52:57

Hi just saw this and was interested in rockinD answer. About 2 years ago I felt awful had all fhe hypo symptoms my ft4 was always below reference ranges around 9 iirc but tsh in normal range about 1.99 so nothing was ever done, I tried so hard to figure it out and get help but got nowhere
. As it happens 2 years on I'm being tested again (new GP surgery) as I have been having chest pain and palpitations plus can't shift weight dry skin flaky scalp etc... If same results as last time again what should I ask GP to test for?

PowerPants Sat 08-Dec-12 22:41:23

I have just looked up the thyroid tests I had done eight months ago - and my TSH was on the low side of normal (within range but on the low side). Does that mean anything?

PowerPants Sat 08-Dec-12 22:21:00

Ah OK - thanks Rockin, a trip to the GP in order sad

RockinD Sat 08-Dec-12 17:11:41

Sorry, didn't mean to freak you out.

A low free T4 is a flag that your thyroid is not working properly, wherever your TSH may sit in the range.

PowerPants Sat 08-Dec-12 14:47:34

Hi rockin - thank you so much. What is the low free T4 a flag of? I have suspected lupus and a host of other weird and wonderful diseases....

RockinD Sat 08-Dec-12 10:48:15

FT4 below range is not good - this implies that your FT3 will also be low in range, so you need to get that tested. Your symptoms would seem to go along with low frees.

If you have one AI disease, you are more at risk of others, so I hope you have had your TPO and TgAB antibodies tested as well.

The low free T4 is a flag, so don't let your GP fob you off if your TSH is within normal range. You need to get those antibodies tested.

PowerPants Sat 08-Dec-12 00:42:47

FREE THYROXINE * 11.0 pmol/l (12.0 - 22.0 is normal range)

Hi - could anyone help with the above test result? I am off to the doc to get further tests but just had this one through. I have symptoms of extreme achiness and tiredness and sometimes my pulse drops to 50 or so. I have concurrent auto immune diseases (o the joys) so could it be related?

Thank you all.

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