Advice desperately needed - I have stopped my medication!

I desperately need advice before I speak to my GP tomorrow morning. Sorry for the length of this.

In July 2008 Dr Peatfield diagnosed me as low adrenals/low T3 and T4 (urine testing: T3 below range, T4 very low normal, saliva cortisol below range). He thought my problems stemmed from weak adrenals, which would have made sense since I had endured extreme emotional stress for many years. I tried thyroid extract on his recommendation but it didn't help and I got palpitations. In 2009, then living in France, I had blood tests done as follows:

Free T3 - 4.41 (range 4.00 - 8.30

Free T4 - 9.02 (9.00 - 20.00)

TSH - 0.86

I had all the hypo symptoms but French GP and endo both said I was in the normal range.

Tested in January 2011 by Dr Dalle inn Paris:

T3 - 4.72

T4 not tested but TSH 1.12.

He felt I need Erfa thyroid and hydrocortisone although he too thought my main problem was weak adrenals. I took hydrocortisone for a few months but ultimately felt no better and put on loads of weight so was weaned off it but continued to take Erfa - 30mg twice a day.

I felt a bit better but not great; I then sought the help of Dr Chapman in London in London in August 2011 - he ran rune tests and both T3 and T4 showed below range, HOWEVER, back in France just 3 months later my blood tests were as follows:

Free T3 - 5.2 (2.0 - 4.4)

Free T4 - 11.0 (9.3 - 17.00)

TSH - 0.02

My French GP made no comment here. I carried on taking the Erfa but moved back to the UK in Feb 2012. I have been taking the Erfa ever since but in the last few months have not felt too good and have had increasing weight again and rapid heartbeat in the night plus very hot at night. I was also starting to have bowel movements many times a day and also in the night.

I asked my new GP for blood tests and these were as follows:

Free T3 - 7.1 (3.95 - 6.8)

Free T4 - 13.0 912.0 - 22.0)

TSH - 0.02

Cortisol test was normal although it was blood not urine. Also, my pituitary is apparently OK as I had at one time suspected not as my TSH was always so low.

Having searched around on the forum/internet I thought it possible I am now hyperthyroid, not hypo. My GP just initially said the results were "weird" - no explanation. I went to Spain right after these blood tests and thought I would try cutting back the Erfa. Within 2 days I had cut it out completely. I stopped the increased bowel movements and also the heat at night. I felt more energetic generally. I am back now and am supposed to be talking to my GP tomorrow morning.

I would be so grateful for any advice as I don't think much help will come from my GP.

Does anyone else think maybe I should never have been diagnosed hypo or have I just changed now to hyper now maybe my adrenals have improved? I really feel confused ...

6 Replies

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  • I'm not really sure. It may be that you didn't need as much Erfa as you were taking.

    One thing that I read is that low cortisol can cause your TSH to be lower than it should be. This can result in your T4 and T3 being lowered. It may be that your low TSH, T4 and T3 were actually caused by your adrenals and you needed some Erfa until your adrenals had recovered.

    If you continue to feel well without the Erfa, then that is good, but if you start to feel hypo again it may mean that you need some Erfa but not as much as you were taking.

    It may be worth getting more blood tests when you have been off the Erfa for 6 weeks (unless you need to start taking it again) to see what is happening and then discuss this with whichever specialist you feel would be most helpful.

    I hope you find the answers!

    Carolyn x

  • you need your thyroid antibodies tested, ask the GP for that

  • Hi Cortisone is such a dangerous drugs. Most Endo`s , all I know actually, like to try and get the thyroid right and then look at adrenals if not improved, My endo says that the only good test for adrenals is 24 hour collection ( urine), cortisone, special dose at midnight and a blood test 9am. If it was me , i would try some T3 and more T4 and see. I like armour and Erfa but not so controlled dose and may be not the best for you.It is very important not to have the T3 over range. I do not believe a lot of the rubbish about thyroid treatment but i do know FT3 must never be over range, it really does effect the heart.With low tSH, you may well need to have an Endo prescribe the T3, GP`s get jittery, I guess France the same ,only usually better docs.I have immeasurable TSH, always have, did cause a problem originally untill under a good endo,I do need some T3 as my natural FT3 is below range, That was how my Hashimoto originally diagnosed. i cannot take Levo ( T4) so have to have armour and T3 only is on the script. To buy armour on a private script is quite expensive, If under an endo, GP does in my experience always do as they say. Even the worst GP`s realise it is complicated.I hope that helps.I am also mainly treated on symptoms.

    Jackie

    Not sure if you know to reply to a specific post, click on "Reply to this" under that post.

  • Jackie, HydroCortisone is not dangerous if handled correctly. It is often absolutely necessary. And some people, such as myself, need their T3 to be over range and have absolutely no problems with their heart.

    Hugs, Grey

  • Hi grey, I agree if cortisone is looked after by a consultant, if needed fine. However, because it can be dangerous, most Endo`s Some people really need it. At this stage it would benefit me but not safe for me. that is specific, I have not been able to even have cortisone injections ( local) for many years. However, it is a powerful drug and important to make sure it is really needed.Endos and I know Dr. S prefer to treat the thyroid first and then see.

    I am glad you have found what is best for you.

    Best wishes,

    Jackie

  • ... drrind.com is a good website with a questionnaire to clarify if it is Adrenals or Thyroid or both ! There is also a table showing a list of conditions with the relevant Thyroid test results - so if for example TSH FT3 and FT3 are low then Adrenal Insufficiency is indicated.

    I also agree with NBD - Anti-bodies need to be tested to give you a better idea of what is going on. With Hashimotos you can swing between Hyper and Hypo.

    Good Luck......

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