Stiff/Aching/Painful Muscles and Bones - Thyroid UK

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Stiff/Aching/Painful Muscles and Bones

Pambrun profile image
11 Replies

Hi All,. I have just had further blood tests as asked for T3 to be checked because of worsening symptoms since thyroid removed over 2 years ago. GP was reluctant to ask clinic to do T3 (why is this???). Anyway blood tests came back apparently stating 'normal' but GP reducing Levo dosage from 125 to 100 immediately and further blood test in 6 weeks. I asked why the aches muscle and bone pain, tiredness, feeling lethargic, painful Achilles Heels, painful bursitis in elbow and so on were getting worse and why I am feeling this way, shuffling around like an old lady and always feeling like I am coming down with something! I was advised to exercise! Wish I could!! Told my bloods didn't reveal rheumatoid arthritis or any signs that I was fighting off any illness! Left feeling even more low and wondering if this is it now for the rest of my life!

Does anyone else have these symptoms? I have been reading up on the internet lately and it seems a lot of them go hand in hand with thyroid problems yet GP's don't seem to want to act on it??

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Pambrun
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Clutter profile image
Clutter

Pambrun,

I don't understand why your GP would reduce your dose if your results are 'normal' ie you are not over medicated.

I suggest you ask your GP receptionist for a printout of your results and the ref ranges (figures in brackets after results) and post them in a new question for comment.

Musculoskeletal pain, aches, fatigue and lethargy are typical symptoms of under medication but can also be due to low or deficient ferritin, vitamin D, B12 and folate. If they've not been tested request your GP does them. If they have been tested post the results and ranges in a new question for advice.

Pambrun profile image
Pambrun in reply to Clutter

Thank you I will do that! I am equally as confused about the reduction in dosage! So fed up 😔

Pambrun profile image
Pambrun in reply to Clutter

Hi, my thyroid was removed due to swelling, consultant said after 3 biopsies were inconclusive that there was a 20% risk of cancer so complete removal was recommended. I have had symptoms building up gradually ever since but didn't connect them to thyroid removal until I started searching the internet for answers. GP does not feel there is a connection?!

Pambrun profile image
Pambrun in reply to Clutter

Hi Clutter Administrator, I have now obtained copy of my blood test results for thyroid function today. I have typed them here as it reads o the form as I have no idea what it means. Can you or someone advise please? The increasing muscle and bone pain is so depressing. I didn't mention last time I posted that my HRT was stopped earlier this year and I phased out and completely stopped taking anti depressants completely at the end of August but have felt worse since.

Thyroid function test (vj15623) - Abnormal - needs to see GP

Serum TSH level 0.1 mu/L (0.30 - 5.50)

Slight over replacement of thyroxine as ideally the TSH should be in the lower part of the reference range.

Serum free T4 level 18.4 pmol/L (11.5 - 22.7)

EMIS Report ID:1605754 Lab Report

Issued 07/10/16

GP informed informed me the T3 and T4 tests had been done but can't see T3 results here?

Clutter profile image
Clutter in reply to Pambrun

Pambrun,

The lab has flagged your TSH as below range and suggested you are mildly over replaced. You are NOT over replaced because Free T4 is within range. If you are feeling worse after the dose reduction advise your GP and ask for 125mcg to be reinstated. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

I would also ask your GP to do the vitamin and mineral tests I recommended above.

___________________________________________________________________________

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

Pambrun profile image
Pambrun in reply to Clutter

Ok thank you. I am so full of aches I just want to curl up but that is uncomfortable too! I am so shocked that my GP told me the T3 test had been done and was normal but their is no mention of it on test results?

SmallBlueThing profile image
SmallBlueThing

Assuming your thyroid was removed due to hyperthyroidism, you may now be lumbered with reduced sensitivity to thyroid hormone, triggered by the body as a protective mechanism. Perhaps a (private) reverse T3 test would be helpful?

We hypothesise that observed clinical symptoms of hypothyroidism in chemically euthyroid patients are typically caused by changes in hormonal systems, autoimmune antibodies, metabolites or other substances in the body, leading to reduced sensitivity to thyroid hormone in peripheral tissues. These changes may be a by-product of other processes and a reversible biological response in the body, and may also result in chronic acquired resistance to thyroid hormone. Antibodies may prove to be the most common cause of chronic reduction in thyroid hormone sensitivity. It is argued that the acquired form of resistance to thyroid hormone, caused by endogenous and exogenous sources, may indeed be more common than the congenital, as in insulin resistance. If acquired resistance to thyroid hormone exists, then it may not be picked up by blood assays of thyroid hormone and TSH. An appropriate test to assess thyroid hormone action in peripheral tissues is therefore greatly desired.

medical-hypotheses.com/arti...

Pambrun profile image
Pambrun in reply to SmallBlueThing

Hi, my thyroid was removed due to swelling, consultant said after 3 biopsies were inconclusive that there was a 20% risk of cancer so complete removal was recommended. I have had symptoms building up gradually ever since but didn't connect them to thyroid removal until I started searching the internet for answers. GP does not feel there is a connection?!

SlowDragon profile image
SlowDragonAdministrator

Always make sure you get the actual figures from tests (including ranges - figures in brackets). Never accept "normal" as a result - it's only an opinion.

You are entitled to copies of your own results. Some surgeries make nominal charge for printing out. Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online.

When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

If you can not get GP to do these tests, then like many of us, you can get them done privately

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

Blue Horizon - Thyroid plus eleven tests all these.

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

If your thyroid was removed due to raised antibodies (Graves or Hashimoto's) then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of GOOD levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.

hypothyroidmom.com/92-of-ha...

vitamindcouncil.org/tag/aut...

chriskresser.com/the-gluten...

Pambrun profile image
Pambrun in reply to SlowDragon

Thank you so much, I will contact GP office on Monday!

Pambrun profile image
Pambrun

Paid privately to have blood tests done. Can anyone advise me on these results please? I go back o see m GP next week. I am still suffering muscle ache and stiffness and feel foggy and lifeless etc....................................................................

SummaryPam, your TSH level is high, suggesting that the dose of thyroxin that your are currently taking is slightly low. Many of the symptoms you have described could be due to this finding. You should discuss this with your GP for an alteration in your dose of levothyroxine.

Thyroid function

Thyroid Stimulating Hormone (TSH)* 18.26 mIU/L0.27 - 4.3 mIU/L

Free Thyroxine (FT4)* 11.3 pmol/L12.0 - 23.0 pmol/L

Triiodothyronine (FT3)3.3 pmol/L3.1 - 6.8 pmol/L

Thyroxine (T4)89.0 nmol/L64.5 - 142.0 nmol/L

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