Medichecks shows abnormalities - what do I do now?

[whisperit]

My Medichecks results arrived today and show low levels for waking cortisol and TSH, and high levels of anti-thyroid antibodies.

I have a diagnosis of Undifferentiated Connective Tissue Disease and have been taking hydroxycholoroquine and prednisolone for the past 18 months. In the past year, I have developed severe, chronic fatigue (I have become virtually housebound) and daily episodes of flushing, nausea and palpitations.

I have suggested that these symptoms might be due to problems with my adrenal/thyroid system, but my rheumatologist has rejected this and believes they are due to a new diagnosis of fibromyalgia.

In light of today's results, I'd be grateful for any thoughts about what might be going on for me, and suggestions for the next steps I should take. I am due to see my rheumy next in February. Many thanks!

*** TSH 7.08 [0.27 - 4.2] ***

free thyroxine 16.8 [12 - 22]

total thyroxine (T4) 78 [59 - 154]

Free T3 4.39 [3.1 - 6.8]

*** Thyroglobulin antibody 824 [0 - 115] ***

Thyroid peroxidase antibodies 12.6 [0 - 34]

*** Cortisol saliva waking 2.7 [6 - 21] ***

Cortisol saliva 12 noon 2.98 [1.5 - 7.6]

Cortisol saliva 6pm <1.5 [0 - 4.49]

Cortisol saliva before bed <1.5 [0 - 1.99]

[shaws]

I am not saying that your Endo is wrong but many on the forum have been diagnosed with something other than hypothyroid (I am one of them).

Your TSH is high. In other countries we'd be diagnosed when it reaches 3+ but in the UK the insistence is that it has to reach 10 but even before that number may we have quite severe symptoms.

You have an Autoimmune Thyroid Disease called Hashimot's due to you having high thyroid antibodies. These attack the thyroid gland and wax and wane until you are hypothyroid but treatment is the same, i.e. levothyroxine. Some doctors wont prescribe levothyroxine if TSH is somewhere in the range but are willing to prescribe something else for the clinical symptoms when we need thyroid hormone replacements.

Your FT3 is low and that may be causing your pain which Endo has diagnosed as Fibro. The following is from a scientist/doctor who was an Adviser to Thyroiduk.org.uk before his death. He ran three sites and one was Fibromyalgia Research Foundation. Due to his death his sites have been archived. I will give you some info. He treated his fibro patients with T3 only as he said that these patients were Thyroid Hormone Resistant and only recovered with T3 (at higher doses than usual). There are other topics at the top of the page on the following link below.

web.archive.org/web/2010103...

web.archive.org/web/2010103...

[whisperit in reply to shaws]

That is very helpful, shaws, thank you.

Just to clarify - I have not been seen by any endocrinologists, just my rheumatologist. He's the one who has diagnosed fibromyalgia.

However, my "fibromyalgia" seems atypical, as I do not have significant pain. Instead, it is the severe fatigue, poor sleep and episodes of flushing/nausea that are troublesome. Nevertheless, I have dutifully attended "graded exercises" physiotherapy and occupational therapy and done CBT (as a psychiatric nurse, I am pretty familiar with this anyway!) These have not improved my sleep, fatigue or flushing etc at all.

Recently, I managed to persuade my GP to refer me to a endocrinologist, but won't be seen until March.

Thanks again x

[shaws in reply to whisperit]

First, you have had a good range of tests above which show that you have hashimoto's (the commonest form of hypothyroidism) and it is the antibodies which wax and wane attacking gland until you are hypo and I don't think you need to ask GP for more re thyroid but B12, Vit D, iron, ferritin and folate. Also your TSH is above range but the 'powers that be' have deemed a diagnosis to be made when it reaches 10. I think the fact that you are over-range should be treated with levothyroxine.

[greygoose]

You are hypo, you have Hashi's and your cortisol is much too low. Your diagnosis of fibro is just a cop-out because your rheumatologist knows nothing about thyroid. Have you shown him these results? Have you shown your GP? You should be started on treatment right away.

[whisperit in reply to greygoose]

Thanks, I have repeatedly suggested to my rheumatologist that thyroid/adrenal problems may lie at the root of my main symptoms, and told him that I don't believe I have fibro. His response has been that the two TSH bloods that have been taken in the past 12 months showed nothing wrong, so there's no other possible diagnosis.

One would have thought that my GP would have gotten fed up with seeing me on multiple occasions during this period, but he continues to insist that he must defer to the specialist (ie the rheumatologist) and try various fibro treatments (ie physio, OT, CBT, sleep hygiene).

I will be seeing a new GP this Wednesday and hope that these results will prompt a rethink. My fear is that - as shaws suggests - they might still be considered as below the usual thresholds for diagnosing a thyroid problem.

[shaws in reply to whisperit]

If I was a betting woman, I'd put a lot of money on the fact that this man has only taken a TSH and T4 (if he did do T4) and because your TSH is in the range he hasn't taken any notice at all.

If Endocrinologists who are supposed to be the experts don't diagnose us, then how can other medical 'experts'.

Blood tests for thyroid hormones have to be at the very earliest possible, fasting (you can drink water) and if you take thyroid hromone replacements you allow a gap of 24 hours between last dose and test and take afterwards. This keeps the TSH at its highest as it reduces gradually throughout the day.

Tick off symptoms you have but 'modern training' misses this important part from their training:

thyroiduk.org.uk/tuk/about_...

Thankfully we don't get all of the symptoms

[SlowDragon Ambassador]

Essential to also test vitamin D, Folate, ferritin and B12

You have autoimmune thyroid disease also called Hashimoto's and vitamin levels are very common to be too low.

Did you do this test early in morning and fasting? This gives highest TSH (all most medics look at)

Medichecks can test vitamins if your GP won't

[whisperit in reply to SlowDragon]

Thanks, yes, the thyroid levels were done early in the morning. I will ask the GP about these tests - I can't afford to rely on the private testing! x

[Barrister]

You’re taking prednisolone and this causes flushing and nausea.

Clemmie

[whisperit in reply to Barrister]

Thanks, yes, that was my first thought when I began to get those symptoms. So I steadily reduced from 20mg to 4mg a day. Unfortunately, even after 4 months on 4mg, I still get those symptoms. So I'm a bit puzzled about them...

[Barrister in reply to whisperit]

Well, I have been unwell for nearly 5 months. Severe headaches and nausea started on 1st August within a couple of hours of having a steroid injection and my first methotrexate injection. I put it down to the Methotrexate injection but have since begun to think that maybe it was the steroid injection. I am only now, within the last few weeks, actually able to stop taking strong anti emetics and have actually lost 2stones in weight because of the nausea and loss of appetite. I’m having a short synactin test on Thursday to see if my adrenal glands have been affected. Clemmie

[whisperit in reply to Barrister]

That's interesting; it's got to be helpful to have a synactin test. My rheumy has said that after only 18 months on prednisolone, it is inconceivable that they could have caused an adrenal problem. I've also had a full-body MRI which showed no adrenal tumours, so his conclusion is that there cannot be anything wrong with my adrenals...

It's so difficult and wearing when we start to distrust our specialist medics' opinions?! Hope your test goes well, anyway x

[shaws in reply to Barrister]

I am sorry you have had a horrible five months and do hope you are able to recover quite soon.