High TSH, thyroid antibodies, normal t4, do I need treatment? Please help...

[booboo1]

Hello

I would really appreciate any advice you can give:

I had my baby 16 months ago, he was premature because I had severe pre-eclampsia and we both spent a while in hospital (me a month, then him a month). Following his birth I was very tired etc but thought it was just being a new mum and recovering from hospital, but in Feb 2012 I remember saying to my mum I thought my pregnancy hormones had gone as I no longer felt glowing! I had a test to see if I was anaemic but I was fine, just put tiredness down to motherhood. Since then I've felt the following, some times worse than others: exhausted, muscles aches like I've spent the day lifting furniture, struggling to sleep, light headed and woozy, shaky, very dry skin, hair dropping out (could be motherhood), nails flaking, moments of feeling bleak. I got lightheaded holding my son in January and it worried me, so I went to the doctors, told them I have thyroid problems and diabetes in my family (thyroid in two aunties, grandad and two great aunties, all underactive I think and all on the same side of the family) and asked if I should be tested. They tested me and said TSH level was slightly high (6.74), but T4 was normal (don't know figure). They then tested me for thyroid antibodies and the test was positive. I've been told to go back two months after the test (so that will be 18th March) to be retested and if results are the same or worse they will start a trial of treatment. I seem to be feeling worse in recent weeks, numb or tingling fingers and toes, constipated or the other extreme (this has never bothered me before). One anomally with me is that rather than put weight on, I'm on the skinny side of what I usually am, my auntie who has an underactive thyroid suffered weight loss as a symptom and the doctors took a long time to diagnose because of this. I just feel drained. I have a baby, a husband and a job and I want to enjoy them but I know I'm just not at my best. My family say I should go back sooner, but I don't want them to think I am a fuss pot and I don't know if this is something or nothing. Am I hypothyroid? Am I borderline? They say if my results in March are the same then they will treat me, so why won't they treat me now? I would really appreciate your help. Thank you.

[helvella]

Please, please, please go and get the actual test results. And the reference ranges.

You have just come into a place where the word "normal" as a test result is treated as a bad joke. (I hasten to add, it is NOT you that has done something wrong. ) We see numbers that no rational person would ever describe as being normal which have been, you guessed,described by a doctor as normal.

This explains how you can get your results if they do not readily pass them on to you when you ask:

thyroiduk.org.uk/tuk/NHS_In...

If you pushed me, I would say that TSH of 6.74 is definitely high - which means you are hypothyroid. But we tend to be somewhat sceptical of using only the TSH test to determine things.

The reason they do not treat is partly that some people do indeed get better in a fairly short time of months. But 16 months after the birth would normally have seen things resolve if they were going to.

Rod

[booboo1]

Thank you so much! I'm confused as to what the anti-bodies mean too - This is a new world of terminology for me, so I can't tell you how much I appreciate you helping me. I will have a look at that web page now...Thank you.

[helvella in reply to booboo1]

Everybody was new once!

An antibody is really tiny Y-shaped molecule. Hey - some time ago I posted a blog:

thyroiduk.healthunlocked.co...

And follow the link on to the BBC page.

In the picture you can see a green thing - that is a representation of an antibody.

Basically, one end of it is a highly-specific "key" which attaches to its target. The other end acts a flag saying "Hey - I'm here!!!" to attract the macrophages which come along and attack the thing the antibody is attached to.

In autoimmune thyroid disease some substances which are only normally found inside the thyroid are released into the bloodstream. And these antibodies are released to help clean them out of the blood. So instead of having almost no antibodies, you have huge numbers.

The two substances are Thyroid Peroxidase (an enzyme) and Thyroglobulin (a protein). If you have more than the threshold number of either type of antibody, it is a strong indicator that you have autoimmune thyroid disease. But that can also occur after trauma - surgery or even a car seatbelt after an accident.

[booboo1 in reply to helvella]

Thank you, very accessible explanation. Could a caesarian has caused it? Or would it have rectified itself after 16 months? Wish I was so knowledgeable!

[helvella in reply to booboo1]

Afraid I am not qualified even to guess!

I can't think why it would, but what do I know?

Do go to the main Thyroid UK site and have a read around. There is lots to get started on.

thyroiduk.org.uk/

[booboo1 in reply to helvella]

I will! Thank you so much!

[tingles]

My docs started me on treatment at TSH level of 5.6.

I had virtually every single symptom of hypo, yet sometimes people have much higher TSH readings and not so many symptoms. Take a list with you of all your problems. Look on the thyroid uk site and compare them and tick off what you have.

I was

exhausted

constipated

had strangling feeling for at least a year

freezing cold

dry. itchy skin

no libido

tingling

husky voice

no hair underarms

thinning hair

brittle/dry nails

horriific brain fog, thought I had alzheimers

heavy periods

woke up at least 3 - 4 times a night

depressed

aches all over

fell asleep after virtually any food

migraines

very thin eyebrows

low iron levels

low b12

Hope they listen to you, keep coming back here and educating yourself, you are among friends and people that understand xxxxx

[booboo1]

Thank you, I keep wondering if it is just me, or being a mum, sometimes I feel desperate and sometimes I feel I am going mad. I can't tell you how much you have helped.

[shaws]

This is a link and if you cursor down to September 11, 2004 and the following question they may be helpful.

web.archive.org/web/2010122...

[booboo1 in reply to shaws]

that is incredibly useful, thank you so much. Those are exactly the symptoms I have had. Thank you thank you thank you.

[shaws in reply to booboo1]

There are also other useful topics at the top of the pages which may come in useful.

It is not knowing what is happening to you when you feel so ill, you expect answers from the doctors. You eventually find out that they don't know as much as we have had to learn.

[booboo1 in reply to shaws]

Thank you.

[summer01]

Hi booboo, I don't know nearly half as much as others on here but my experience was a little similar to yours. My weight has always yo yo'd a little but after having my 2nd child (c section) I lost all the weight plus more within the first 3 months without trying. At 11 months I was put on anti depressants which I'm convinced was actually a thyroid problem.

2 years after having my baby I eventually had a blood test and was told I was borderline and come back if I felt worse, can't remember the exact results but I think t4 was 10, tsh 6.4 and had thyroid antibodies. At this stage age my vision was affected so I insisted they do something straight away and after 30mins of being sat in the room the GP reluctantly started me on a trial of 25mcg. Just over a year later I'm seeing a different GP and on 100mcg and slowly getting there.

I can't offer the same level of advice as the others but from my experience please don't wait, go back and insist they start you on a trial. You should be enjoying this time with your little one, not finding it a struggle. The one thing I've learnt over this last year is to keep going back to the doctors, if you don't get anywhere with one go and see another at the same surgery.

Good luck and make that appointment today!

[booboo1 in reply to summer01]

You've really struck a chord with me, that is exactly what is getting to me - I have waited so long for our son but I just don't feel I am at my best for hum or making the most of him. I am doing everything i need to every day but i have to dig really deep to do it. Time is passing me by and i feel like i am acting sometimes, being the best mum/wife/daughter etc i can be but inside I'm knackered and a bit hollow. I feel like i have aged years in months, sometimes i feel frail. You have all been very kind and helped clarify things for me. This morning i will call the doctors and ask for a breakdown of my results. I will post them on here and see how they look to you and might make an earlier appointment to return. I'm worried about the impact this might have if i wait until march, it is only a month, but feels a long time. I am 34 and we were hoping to try for another baby but i darent while this might have an impact, especially after the pre eclampsia last time, which was a shock as i am perfect weight for my height, don't smoke and was well under 35 at the time.

Thank you all for your guidance and kind words.

[summer01 in reply to booboo1]

I really feel your pain, my whole time on maternity leave was such a struggle, even now I feel like a robot. My husband is supportive but I feel like I'm constantly moaning about how rubbish I feel. I feel about 80% better than I did last year, it's a slow process getting there so please don't delay.

I found dr Toft's book really useful (from boots) and took this to the GPs with me. Please don't delay as they are such precious years when you you have a little one, go and see the doctor and insist on a trial, don't move until they agree.

Good luck and big hugs

[booboo1 in reply to summer01]

That's really kind, thank you x

[Nicky24]

Hi,

I had a TSH which after 3 blood tests was still high at 8.5. The tested my antibodies and said the presence of positive antibodies was a strong indicator I would become hypothyroid. At this point they said I had sub clinical hypothyroidism.

I had many symptoms like yourself. They out me on levothyroxine and my tsh is now 2.3. I feel like a different person. I still can't lose weight yet but my energy levels and my get up and go is back. Use the check list if symptoms on the tools on the home page of the thyroid uk site to take to the doctors and fight for a trial of thyroxine.

Good luck

[booboo1 in reply to Nicky24]

Thank you!

[booboo1 in reply to booboo1]

Hello everyone

Here are my results:

auto antibodies: 324

tsh:6.74

T4: 13

does this make sense to anyone? Are they right that my t4 is 'normal'?

Thank you

[LouiseRoberts in reply to booboo1]

Have you got some ranges please? Ta

x

[booboo1 in reply to LouiseRoberts]

Hello, I haven't sorry, I only spoke to a receptionist so it was all a but basic, but I have made an appointment to see a doctor this afternoon so hope to find out more then or even get a print out of my results. Is there anything specific I should ask for?

Thank you.

[LouiseRoberts in reply to booboo1]

The printout should help.

x

[booboo1 in reply to LouiseRoberts]

Hello

The serum free t4 was 13 and the range for this is 11 - 21.

I now have a full print out of all my results so please just let me know if anything else would be useful. Thank you.

[Hidden in reply to booboo1]

T4 is not normal, it is too low.

I would suggest (not medically trained) that with those symptoms and those results, you would probably benefit from a trial of a small dose of levothyroxine.

All I can suggest is going back to GP with your new knowledge and push the point!

Helpful info here:

thyroiduk.org.uk/tuk/diagno...

Good luck!

Louise

x

[booboo1 in reply to Hidden]

Thank you so much. What does the range mean? Or is it really complicated?! X

[Hidden in reply to booboo1]

Um, probably. Rod is better on that sort of thing!

x

[booboo1]

Hello everyone

I just wanted to get in touch to say thanks so much for your help with this last week. I got my blood test results this morning and my TSH was 11.19 (from 6.74 last month) and my free T4 was 12.4 (from 13, with a range of 11 - 21). So I do seem to be getting worse and I'm really glad you advised me to go back to the doctor rather than wait for the additional month they had advised. I have an appointment to see my doctor about the results tomorrow and he said last time that if there was no improvement they would start me on thyroxine 'as a supplement', so figures crossed, they will start to treat me and I should feel better in the not too distant future. Thank you all for your help.

[LouiseRoberts in reply to booboo1]

*like*

xx