"A loosing battle" How do I get back in control?

My wife has suffered with an overactive Thyroid for 5 years, looked after by the Endocrinology department. After 4 years of reasonable control with Carbimazole, they tried to reduce and all went wild for 4 months. This led to taking a Radio Iodine tablet. At just over two months she was cured over night, she felt back to normal. This lasted about 14 months, Fantastic. Then a period of going underactive, slowly picked up and treated with Levothyroxine. This worked for a few months, leading to increasing Levo. For the last 6 months she has been going downhill. Early morning nausea, which is now lasting until midday, notices the cold, very sensitive. Best left laying down, symptoms improve early afternoon. This clears mainly in the evening, a brandy helps and she has a good nights sleep. To start all over again. Tried antidepressants, but none work, Scans for stomach issue, but always clear, awaiting an endoscope test.

One thing for sure she is feeling awful.

Awaiting the latest blood test, but with varying reasons on why sometimes T4 & T3 is not tested. "The lab refused the test" !!

I have ordered the book STTMadness and will try and get back the understanding I used to have. I myself have been bogged down with Polymyalgia and two viruses and have been hoping the Doctor would get in control. I've not got much hope. A year ago I asked for her to be referred back to the endocrinology department, but was refused "We can sort it"

Do I now go for a Endocrinologist, private consultation or is this going to be another waste of time?

My wife's TSH was 7.4 last October and increase of 25mg Levo. bought it down to 2.4 and the last test it was possible 0.7, but I wasn't there at explanation.

The latest test should be all three tests, my wife can't get an appointment for two weeks to discuss, I haven't tried I was out yesterday (Friday) But getting rather annoyed with the lack of understanding of what she is going through.

Apologies for the length of detail. Looking back over 6/7 years the symptoms have always been the same. Over or Under active.

A little guidance would be a real help.

9 Replies

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  • DavidMF,

    If your wife's GP practice will only order TSH she can order a private TSH, FT4 and FT3 test via thyroiduk.org.uk/tuk/testin... It would be useful to order one of the comprehensive profiles which include ferritin, vitamin D, B12 and folate. When you have the results and ranges post them in a new question for advice.

  • Clutter

    After a really bad weekend. I collected my Wife's blood tests this morning.

    TSH: 0.91 T4: 21.3 T3: 5.7 The report stated "Normal"

    No Free T4 or T3. On looking back her T4: is normally around 12.0

    Symptoms

    Nauseas

    ,TremblingFeeling scaredshakiness

    . Loss of appetite.

    Weight loss10th to 24th April4 lbs.

    Feeling the cold. Noises seem loud.

    Very sensitive when out as a passenger. Last two nights Hot Flushes. Defensive. Frequent urination. Feeling better after 6pm sometimes.

    Seeing Temp Doctor this afternoon as earliest booking 3rd May.

    I've read 70% of the Book STTM and looking at symptoms. It would seem as she ticks more on the Adrenal list than the Thyroid one.

    Looks like we need a better/fuller list of tests. looked at a schedule on Blue Horizons company and was amazed by the number of varied tests ranging from £29 to £169. More confusion, can you advise the best starter set?

    David

  • Hi David, I think that your t3 and t4 results are free ones.

    Jo xx

  • DavidMF,

    Your wife's thyroid results indicate she is optimally dosed. TSH is low-normal, FT4 21.43 is likely to be close to top of range and FT3 5.7 is usually in the upper third of range. I would need to see the lab ref ranges (the figures in brackets after results) to confirm. If your wife's FT4 has risen from 12 because she has had a dose increase she may be *feeling* over medicated even though she is not biochemically over medicated and may feel better with a slight dose reduction, say 12.5 - 25mcg.

  • Clutter

    Dr's visit this afternoon, nearly ended in confrontation. I presented her condition over 6 years (Very brief) That she had the same reactions when ill, Hyper or Hypo. After two viruses for me on top of Polymyalgia, I had taken my eye off the problems. After lots of reading and purchasing a book, now 70% read. (Immediately dismissed by Dr) I pointed out it had two list of reactions from patients. Of the Thyroid list my wife had only a few similar. Of the Adrenal gland symptoms, over 50%. Perhaps it was an adrenal issue? She dismissed the book, without even asking it's title or who wrote it. Considered she might be overdosed at 75mg, drop to 50mg and take one 15 mg of Mirtazapine. Couldn't do anymore, had to review with our own Dr, who we no have an app. next Tuesday 8 days time.

    Could work, but we increased to 75mg in January because TSH was 2.4.

    She's off to see a councillor tomorrow (Try everything)

    I now have all her records in one file, 7 tabs and a complete listing of all Results for 5 years.

    Hoping we can ride out the next 8 days. I'll finish the book, summarise my thoughts and be better prepared.

    Thanks for the support.

    David

  • What a mess for the two of you and so disruptive for your quality of life.

    Assuming that you're in the UK, is it practical for you to afford some private testing via Blue Horizon, Medichecks or such so that you can have a fuller range of tests? If so, then you'd be able to post the results (the results and their reference ranges) here so that people might be able to comment and make suggestions?

    See: thyroiduk.org.uk/tuk/testin...

    The companies have regular offers for the tests (like Medichecks' Thyroid Thursday) and offer bundles of the testing that is frequently recommended.

    ETA: crossed with Clutter :)

  • Have u tried removing gluten?

  • Not yet, just received Stop T Thyroid madness book, reading to do. Monday I'll request the blood test results. If as I suspect they are only TSH, I'll order a set of tests and start from there. I should have an answer well before the GP's appointment on 3rd May! So much to consider. This week has been a downhill spiral, each day she gets worse. Trying to keep Calm & Carry on, but it's so hard, feeling you are unable to help the current situation.

  • I am so sAorry .its very challenging . Acupuncture is great and aromatherapy. Must try gluten free. It helps me. Naet may help too. Identifies many substances that may be causing sensitivity or intolerance. Google practitioners near .Find an Acupuncturist asap

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