Continuing Muscle Pain and Stiffness. Feeling ... - Thyroid UK

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Continuing Muscle Pain and Stiffness. Feeling Foggy and no Energy, feeling low.

Pambrun profile image
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I had my thyroid removed 3 years ago this month. Most of the time since I have been on 125 levothyroxine. A year ago I was taken of HRT and a few months ago I stopped antidepressants and have during this period I have experienced increasing muscle pains and stiffness to the point that at times I can barely get down stairs or rise from a sitting position. I feel very low and always feel foggy and tired. My GP says bloods normal range and suggests light exercise. I have been pushing for more help, have asked to try T3 but no joy. I had a blood test and although I was again told normal, my meds were reduced by 25. After a further 6 weeks I had a further blood test, GP agreed to my request to test for vitamin deficiencies too. The results stated very slightly low Iron level so given supplements to try and also due to these results my meds were put back up to 125 again! A further 6 weeks have now passed so I have had had another blood test and am due to go to GP for results. I have also had blood tests done privately and have those results here. Can anyone give me some advise on what to say to my GP so she will listen. I still feel bad, I have been reading up on so much but it gets confusing :-(

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Pambrun profile image
Pambrun

Sorry - these are my private blood test results I need help with.......................................

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

Clutter profile image
Clutter in reply toPambrun

Pambrun,

You were very under medicated to have TSH 18.26 and low FT4 and FT3 and that'll be why you are experiencing muscle pain and stiffness but it would be helpful to see your vitamin and mineral results and ranges too.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. 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.

SeasideSusie profile image
SeasideSusieRemembering in reply toPambrun

Your dose of thyroxine isn't slightly low, it is far too low.

Your TSH is way, way over range. Your FT4 is below range. Your FT3 is right at the bottom of it's range. Your total T4 shows you have some but not a great deal.

The aim of a treated hypo patient is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges.

Are these your latest results? What dose of Levo?

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, said in Pulse Online magazine:

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can email louise.roberts@thyroiduk.org.uk for a copy ofthe article, print it off and show it to your GP. Use it as evidence that you need a dose increase and the results to aim for.

What were your vitamin and mineral levels? Your muscle pains and stiffness would suggest that there's more than just low iron levels.

shaws profile image
shawsAdministrator

Your doctor is ruining your health. Your TSH is far above the extremely high figure the BTA recommend before someone is diagnosed and that's bad enough at 10.

Joint and muscle pains are also clinical symptoms and you have them due to your dire dose of levothyroxine. Besides, my own personal view, is that anyone whose had their thyroid gland or part of it removed should always have T3 added to the T4.

Everything in your body is struggling due to incompetence.

Pambrun profile image
Pambrun

Thank you so much everyone. Below is a lengthy list of past two blood test results. I thank you so much for your patience and any advice you can offer as totally confused. Cannot understand the fluctuation in results, just know I am poorly but being told I am Normal :-(

I finally obtained a T3 test which came back normal but even it it hadnt I doubt my GP would given me T3 as she said no one gets perscribed it?

___________________________________________________________

On 6/10/16 my blood results stated a slight over replacement of thyroxine so my Levo was reduced to 100 mcg from 125 mcg. the reading was:

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

Serum FT4 18.4 pmol/L (11.5 - 22.7)

__________________________________________________________

Six weeks later (22/11/16) my last bloods were tested via GP clinic, I gave my GP a list of extra tests I would like done (again requesting T3) in addition to TSH explaining that I had done some reading up - these are the results typed here as are they are shown on my copy.

Serum TSH level 13.98 mu/L 0.30 - 5.50mu/L

(Clinical information provided suggests patient is on thyroxine. If so, then the results suggest suboptimal replacement or failure of compliance)

Serum FT3 3.4 pmo/L 0.00 - 7.00pmol/L

Serum FT4 11.4 pmo/L 11.50- 22.70pmo/L

Serum vit B12 - (vj15623) - Normal 384 ng/L 223.00 - 1132.00ng/L

" folate - " - Normal 3.9 ug/L 3.90 - 20.00ug/L

" ferritin - " - Normal 14 ug/L 14.00 - 186.00ug/L

Se Thyroid

peroxidase Ab conc " - Normal <25.0 iu/mL 0.00 - 33.90iu/mL

Vitamin D level blood - Normal 51 nmol/L 50.00- 125.00nmol/L

Serum Iron Test - Abnormal

Iron Level 8 umol/L 11.00 - 30.00umol/L

Saturation iron binding capac 71 " 45.00 - 72.00umol/L

Percentage iron saturation 11%

Se CA 124 level - Normal 14 ku/L 0.00 - 35.00 ku/L

(A result within the reference range does not exclude disease if there is a clinical suspicion of this)

Serum Calcium - Normal

Serum calcium 2.26 mmol/L 2.13 - 2.63 mmol/L

Serum adjusted calcium conc 2.18 " 2.13 - 2.63 mmol/L

Serum albumin 44 g/l 36.00 - 52.00g/l

Chem miscellaneous panel - (vj15623) - see TFT result

Unspecified Biochemistry - See TFT report

I was put back to 125 mcg Levothyroxine after these results and Ferrous fumarate 305mg caps 1 per day for iron.

AS EXPLAINED, THE BLOOD TEST RESULTS GIVEN AT THE START OF MY POST ARE FROM A PRIVATE CLINIC, I DONT RECEIVE MY GP CLINIC RESULTS UNTIL I GO TO GP LATER THIS WEEK. THE GP CLINIC BLOODS WERE TAKEN THE DAY BEFORE THE PRIVATE BLOODS. BOTH TAKEN AT THE SAME TIME OF DAY (EARLY MORNING BEFORE EATING/DRINKING AND PRIOR TO TAKING MY LEVO MED)

I am also confused about generic meds as have read that they can contain different fillers which can has side effects, any idea if this is correct? Looking back on my last three perscriptions I have had levothyroxine produced by Mercury/Pharma - Wockhardt and TEVA UK.

Huge thanks again!

silverfox7 profile image
silverfox7

Although it's a long time ago now I think I had to have a dose increase when I stopped HRT but do get you folate, B12, VitD and ferritin checked out and remember they have to be optimal to be helpful, not just in range. You also mention you have had a variety of different brands over the last few months. They. An vary slightly in strength and tgecfilkers can be different. I always try to keep as much as I can consistent and then if something isn't right then it can be easier to sort out what is causing it so I should find a brand that agrees with you then ask the pharmacy to always get that brand for you. If they are funny about it ask your doctors to ask in the next prescription

Pambrun profile image
Pambrun in reply tosilverfox7

Thank you.

Pambrun profile image
Pambrun

Can anyone give me some advice on the additional blood test results I have posted? x

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