I'm so annoyed. Ambiguous results and poor test methods & frequency. Help with results please.

[Nunezhall]

Hi. I have finally managed to extract all of my test results from my doctor. I have attached an image of the initial test from April 2013 which was used to diagnose Hashimoto's. The recommendation following this test was to regularly check B12 and D3 and follow NICE guidelines which state to check thyroid levels every 3-6 weeks, then every 6 months, then annually. Additionally refer back to an endocrinologist if hyperthyroidism occurs.

Well this has not happened.

Here are all of the test results since the first one in 2013 as exactly worded in the results print out:

Jan 2014 - Thyroid autoantibodies normal - no action.

Jan 2014 - Thyroid peroxidase Abs (TPO) - <5 iu/mL

Jan 2014 - TPO Interpretation - Negative

June 2016 - Serum T4 level - Normal

June 2016 - Serum TSH level abnormal <0.01

I then had my levothyroxin levels reduced from 100mcg to 75mcg

In August 2016 I had what appears to have been a thyroid storm and ended up in hospital, although no one tested my thyroid at the time and they all thought I had a heart problem (I don't).

Aug 2016 - Serum TSH level - 0.57mlU/L

Aug 2016 - Serum free T4 level - 17.8 pmol/L

My doctor insists the last results are completely normal - are they?

As you can see I have not had many tests and my B12 and D3 have never been tested since I was first diagnosed. I get ill a lot with symptoms of ultra rapid cycling bipolar (the symptoms of which don't fit the DSM criteria very well but this hasn't stopped my doctor putting me on lithium), plus sweats, rapid heart rate, shortness of breath, shaking, anxiety etc, followed by periods of depression and inactivity. My doctor has refused to refer me back to an endocrinologist despite NICE guidelines stating that a GP must make that referral in the event of hyperthyroidism being suspected.

Based on the rather scarce evidence I have provided here can anyone give me an indication of what might be going on? I am also worried that as I've had my levothyroxin dose cut I may end up under-medicated and become depressed. My doctor will not be testing my thyroid levels again until February 2017, and this is only because I made a complaint about having to wait a year.

Finally I cannot overstate the hugely negative impact this has had on my life. My business, finances, marriage and happiness have all suffered as a consequence of my poor health. I am hopeful that some wonderful person on here can help me.

Many thanks.

[greygoose]

Nunezhall, are you sure that's the right page? Because your thyroid results are euthyroid and there are no antibody tests. So, how did they work out that you had Hashi's?

Your vit D and B12 are very low there, and you should have started treatment right away, but you wouldn't have known that, and your doctor would think they were ok because they were 'in range'!

I do not really understand what you are asking. I can't see anywhere where there is evidence of hyperthyroidism, so why do you think you should have been referred to an endo? It would be more interesting to see your latest results.

Are you supplementing that B12, yet? It could be that all your symptoms could be caused by that.

[Nunezhall in reply to greygoose]

You've hit the nail on the head I think. I was diagnosed by a professor of endocrinology in 2013. He said he could feel nodules on my thyroid and gave me the diagnosis of Hashimoto's. Since then there have been exceptionally few tests and what has been tested is insufficient. In June my TSH was 'abnormal' at less than 0.01. As far as I can see this is the only indicator that something is wrong from a blood test perspective. However I have a psychiatrist and another doctor both telling me that the observable symptoms I have could be attributed to a thyroid issue and I should ask an endocrinologist for another opinion. It's very frustrating.

[Nunezhall in reply to Nunezhall]

Oh and no, I'm not supplementing my B12 yet, however I went for a blood test today to establish the levels.

[greygoose in reply to Nunezhall]

OK, well, I think it's time for you to get your own tests done. Doing them in dribs and drabs like that is not helpful.

You need :

TSH

FT4

FT3

TPOab

TgAB

vit D

folate

ferritin

If these haven't been done in the tests you did yesterday.

I cannot understand how a professor of endocrinology could diagnose Hashi's, just by feeling a few nodules! Most people have nodules, but they don't all have Hashi's! A couple of simple blood tests would have settled things once and for all. It's just amazing. And other people have high antibodies and low Frees and struggle to get a diagnosis of anything. There is something very, very wrong in the world of endocrinology. It's more like buying a sweepstake ticket than getting a medical opinion!

[Clutter]

Nunezhall,

Your thyroid results in April 2013 were euthyroid. There are no antibody results there and TPO antibody tests in 2014 were negative for Hashimoto's.

When did you start taking Lithium and when were you prescribed Levothyroxine? Lithium is known to induce hypothyroidism. It can be reversible when Lithium treatment is stopped.

June 2016 TSH was suppressed but if FT4 was normal you weren't over medicated.

August 2016 TSH is low and FT4 is good, you appear to be well medicated on 75mcg.

B12 and vitamin D were low in 2013 and it is certainly worth having them retested in case they have dropped and become deficient.

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.