Hiya I'm new here and would really value some some guidance - I'm hypo after Iodine & feel unwell most of the time these days...help!

I'm currently overwhelmed by my symptoms and need to understand what to say to my GP to ensure that I get the treatment that makes me feel well again. I've been putting up with feeling lethargic, tired, physically weak, brain fog, aching arms & legs, weight gain, and sometimes feel like I'm staring out of a swollen body that doesn't belong to me? I sometimes find it challenging doing simple everyday tasks and end up sleeping for hours to compensate for what I would class as 'normal' activity.

Background -

I became hyperthyroid a number of years ago and was treated with carbimazole - I really didn't like this medication as it caused me to balloon. It became apparent that I was really sensitive to it and 5mg was a high enough dose for me, despite me being through through the ceiling at the time. (I'm mentioned this sensitivity in case it's relevant).

After big do's and little do's I eventually relented and had the radioactive iodine treatment just under three years ago.

At first I went even more hyper, and it took about 15 months for me to become hypo. I was then prescribed thyroxine 50mg, I still didn't feel quite right and managed to persuade my GP to increase my dose to 75mg which is the dose I am taking now. At one point my GP wanted to reduce me back to 50mg becasue my T4 was 22.4 (range 11-22.6) and my TSH was 0.01 (0.2-4.0) when my T4 was at the top end of normal I actually felt reasonably well.

Since this time I feel like I've had to monitor myself really, I'm required to have a blood test every 3 months and when I phone for the results I get the standard - it says tell patient it's normal. I've put up with feeling so tired and unwell as described above because I started to believe that it must just 'be me' - It's my age, this must be how it feels to be 49years, it can't be my thyroid as I'm within the range, and when I've tried to discuss this I've been (for want of a better word) fobbed off with your TSH is low so we can't increase your medication.

Apologies for the lengthiness of my post - I thought it would help to give a bit of background to how I've ended up at this point. Last April (2015) I weighed 20stone, I managed to lose 9 stone by this April (2016) by consuming no more than 800 calories a day. I have now re-gained three stone of that since April :-(

I am convinced that this is related to my thyroid, as when I was put on carbimazole for hyper originally on a high dose I gained 7 stone and lost it, only to re-gain it again when I became hypo. I'm pretty much at rock bottom, and am at a total loss at to what to do as I can't keep doing this.

I organised thyroid bloods through my GP last week and the results were as follows...

T4 10.3 (10-25)

TSH 0.16 (0.2-4.0)

I made an appointment to discuss the results and the GP I saw (locum) said she wanted me to have a re-test and include my T3

I got the results this morning - they read as follows...

T4 13.2 (10-25)

T3 4.3 (no range given so am using Britisih Thyroid ones as a guide here (4.0-8.3)

TSH 0.14 (0.2-4.0)

I'm going to try and see someone tomorrow (can only phone on the day) and want to try to get across that whatever these bloods show - I feel very hypo. The TSH seems to be the stumbling block? - as they tell me it means I'm still hyper and it could be dangerous to increase my meds?

Having read some of the wealth of info on here (not easy with this brain fog) I want to explore T4 and T3 or natural thyroid, but am worried that they'll knock me straight back because of my TSH?

Any help appreciated - I can't go on like this, but I feel like I've got a battle on my hands convinced a Doctor that I need something different.

[I asked for a print out with the last 12 months results and found that mostly they've just done the TSH or TSH & T4]

23/06/2015

T4 8.3 (11-22.6)

TSH 11.1 (0.2-4.0)

18/08/2015

T4 14.9 (as above)

TSH 0.13 (as above)

01/10/2015

T4 13.5

TSH 0.12

22/12/2015

T4 22.4

TSH 0.01

15/03/2016

T4 16.1

TSH 0.12

23/06/2016

TSH 0.69

23/06/16

T4 10.3 (11-22.6)

TSH 0.16 (0.2-4.01)

30/08/16

T4 13.2 (11-22.6)

TSH 0.14 (0.2-4.01)

T3 4.3 (not sure of range)

[not fully sure when I increased to 75mg, think it was last October]

Many thanks for reading through this, if you can help - please reply

Kind regards

Andrea

8 Replies

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  • Oh dear, your doctors really don't know much about thyroid, do they! How can you 'go hyper', you haven't got a thyroid gland!

    Hyper is not just about a low TSH. Hyper is when the thyroid gland is producing too much hormone. A low TSH is the result of having too much hormone in the blood.

    Once you are on thyroid hormone replacement, the TSH is irrelevant. It's the FT3 that is the important number - and that result is useless without the range of the machine it was done on. You can't just use any range.

    Also, when you have had Graves, your set point has been altered, and your TSH will probably always be low, now - although, to be honest, it's not that low!

    Your FT4 is much too low, now - not raised, as in hyper - so, you can't convert enough to T3 to make you well. You really, really do need an increase in dose.

    I imagine that they think a low TSH increases the risk of osteoporosis and heart problems. But, in and of itself, it doesn't. The TSH has no connection with hearts or bones. Having Graves increases the risks, because the FT3 is high, and it's high T3 that can cause damage to the heart and affect the bones. A low TSH due to thyroid hormone replacement, incurs no risk whatsoever. There is a link somewhere about that, but I can't find it for the moment. Perhaps someone else who has it will come along and post it for you. :)

  • Thanks for this Greygoose, I'll phone in the morning and also get hold of the range they used for the T3 - it's a minefield!

    Cheers :-)

  • You're welcome. :)

  • Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells.

    Also as you have / had graves this is an autoimmune disease.

    Not sure if you can / need to test to see if still have Graves antibodies (TSI Ab) after RI

    "TSI test. Health care providers may also recommend the TSI test, although this test usually isn’t necessary to diagnose Graves’ disease. This test, also called a TSH antibody test, measures the level of TSI in the blood. Most people with Graves’ disease have this antibody, but people whose hyperthyroidism is caused by other conditions do not."

    You can also apparently have Graves antibodies AND Hashimoto's antibodies

    If you can't get GP to test everything then like many of us you can get tested privately

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) DON'T take Levo in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

    You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune disease too

    The Immune recovery plan by Susan Blum is an interesting, informative read looking at correcting the cause, not just the result.

  • Hi, thank you for taking the time to respond - more food for thought!

    Something I've never been told about/or am really aware of is the implications of graves to my health in general -apart from impact on my thyroid?

    Thanks :-)

  • I've just phoned the surgery and they have said that my results are satisfactory!!! How do I get the help I need if the medics say such a low reading is satisfactory? I'm beside myself & feel like I've just been left to rot. :-(

  • I''m replying to myself here ...have just phoned back and asked how/why my results can be interpreted as satisfactory - surprise surprise - he's the clinician and he knows what he's talking about. I've asked for a call from him, how can I trust my health and well-being to a medic who gets it so wrong?

  • I've got range used for my T3 So my results were as follows ...

    T3 4.3 (range 3.5-6.5)

    T4 13.2 (range 11-22.6)

    TSH 0.14 (0.2-4.0)

    I've been told this is satisfactory - so now have a fight on my hands a) to try to even get a bloomin appointment and b) convince the GP that we need to change my meds :-( I feel totally disempowered

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