Thyroid UK
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Muscle and joint pain - I am not getting answers from anyone :(

I have suffered with muscle and joint pain since the age of 15 (now 24). I have been seen by orthopaedic consultants, rheumatology consultants, physiotherapists, and GP's.

My GP's have been great and referred me onto consultants, however, I am struggling with secondary care and not having any answers. I am thinking this is my fault, as maybe I am not asking the right questions.

A bit about myself: 24, pernicious anemia controlled with b12 injections every 12 weeks, Hypothyroidism controlled well with 225 mcg levothyroxine, Vitamin D deficiency on medication. Recently I have been taken off iron supplementation, however, this happens every 6 months, and no doubt I will be back on them in a few months.

Few results I have managed to have released:

"21/12/2015 - Sacroiliac X-ray

Potential Abnormal Normal left SI joint. The right SI joint as possible early sclerosis in

its inferior component. Does the patient have caner the specific site?

This may represent early

sacroiliitis."

- This result was not even commented on when I went to see the rheumatologist, they said not to worry about it.

"26/11/2015 Serum anti-mutated citrullinated vimentin antibody level = 27.7 U/mL High @ Anti-MCV" - Again, I was told this was nothing to be concerned about and was actually quite low.

"02/09/2014 Plain X-ray spine Potential Abnormal XR Lumbar 02/09/2014

XR Thoracic spine 02/09/2014

History: tender stiff back, without radiation

Normal mineralisation. Very slight mid to lower dorsal scoliosis, concave to the right.

Minimal degenerative lipping present anteriorly and right laterally between D7 and D10.

No vertebral compression or disc narrowing. Pedicles symmetrical and normal and no paraspinal mass.

The remainder of the dorsal vertebrae, lumbar vertebrae and discs normal." - I was told to try out pilates or swimming with this result. I was an active swimmer as a young child and up to the age of 14. At 15, that is when I had complaints regarding my back and joints. I have started again recently, but I am struggling with it. I will keep persuing this however.

My main question on here is if anyone is able to shed some light on these results? I am going private with this next month, however, I want to make sure I ask the right questions when I see the Rheumatologist. I am grateful if you have taken the time to comment.

3 Replies
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You really need more blood test results - those are the things we can help with. For example, do you know what your iron and ferritin results have been in recent years? What about vitamin D? Folate? Vitamin B12? Any other nutrients? You also need to know what your thyroid-related results have been over the last few years.

You should phone up your GP surgery - choose a time when the receptionists are not likely to be busy, because they are the people you need to speak to - not the nurses or doctors.

If you live in England then you are legally entitled to have access to your blood test results online. For more info on this see posts and replies on the subject by DJR1 (who has a special interest in people getting access to medical records online) :

healthunlocked.com/user/djr1

The alternative to online access is to get copies of results on paper. Don't let anyone just scribble down some results, you want the numbers and the reference ranges printed out from your medical records. You should ask for results from the few years. Be specific about what you want.

The receptionists will probably tell you that they need permission from the doctor. If that is what they say, then tell them that you will drop in to the surgery to pick up the results in the next day or two. Be specific about the day, don't be vague.

The other thing you might be told is that you will have to pay for paper and ink. The maximum that doctors can charge for a copy of your entire electronic medical records is £10. So if they try to charge you a lot, then point out what I've just written and make it clear that you are only asking for x Years worth.

Another alternative is to write a Subject Access Request (SAR) for copies of all your medical records which are stored electronically.

ico.org.uk/for-the-public/p...

When I wrote an SAR for a copy of my entire GP records stored in all formats I wrote to the Practice Manager. It worked. I got the copies.

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I am not medically qualified to respond to your results above but you state "Hypothyroidism controlled well with 225 mcg levothyroxine". Does that mean you have a TSH of 1 or lower with a Free T4 and Free T3 in the upper part of the range?

Unfortunately blood tests cannot inform how the patient 'feels' on a particular dose. I am not medically qualified but I note you are on a reasonable dose of levothyroxine. However, in order for us to feel well, or reasonably well, we need to be able to convert levothyroxine (T4) into liothyronine (T3) adequately.

If you haven't had a blood test for Free T4, Free T3 and below is an explanation of why I would suggest them. I will also give you a list of clinical symptoms. When on an optumum dose, these are resolved:-

Excerpt:

FT4 = FREE T4

Thyroid hormones not bound to proteins. FT4 lowers when the thyroid is struggling.

The approx. reference range for this test is 10 to 24

FT3 = FREE T3

T4 converts to T3 and is the only thyroid hormone actually used by the body's cells.

The approx. reference range for Free T3 is 4 to 8.3

We at Thyroid UK believe that you need to know your Free T3 level too because this will often show low if you are not converting, and high if you have blocked receptor cells. Even if you are converting, the body needs the extra T3 that a normal thyroid produces. There has been some research to show that people feel better on a mixture of Thyroxine (T4) and Triiodothyronine (T3). Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in patients with hypothyroidism – The New England Journal of Medicine Feb.11, 99 Vol. 340. (Click here for this article).

With all of these tests, your results could be anywhere within the range and you would be classed as "normal". If you are at the very edge of the range, either at the bottom or at the top, you could be classed as "borderline". Neither you nor your doctor truly knows what your normal is, if you did not have a blood test done before you became ill. There are also particular reasons why the blood tests remain in the normal range. If you are not converting from T4 to T3 or if your cells are not taking up the T3 normally, your T4 levels and your TSH levels will still show as normal.

The Broda Barnes Foundation tell us "Dr Barnes found that the primary reason for the inaccuracy of the blood tests for thyroid function is that the thyroid hormones are not utilized in the blood, but are utilized intracellularly. Therefore a patient can have enough thyroid hormones circulating in the blood to give a "normal" reading, but if the hormones are not getting into the cells, the patient will be hypothyroid.

Also, there is a problem of low blood volume in hypothyroid patients. This means that any blood test value will appear higher than it actually is because the patient has a lower than normal blood volume. In many patients with "normal" or "high" thyroid blood levels, but many clinical symptoms, the patient's blood levels actually drop lower once the patient is given thyroid hormones simply because their blood volume increases.

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

Blue Horizon or Medichecks will do private, home pin-prick tests.

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

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

Sometimes 'symptoms of hypo' are treated as due to something 'other than hypo' as our blood results are 'normal'.

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Hi have you tested yourself for a food intolerance some foods can worsen symptoms such as gluten nightshade soy sugar and dairy just to name a few. If you haven’t read Izabella Wentz book I would highly recommend

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