Muscle and joint pain: Hi, I would appreciate any... - Thyroid UK

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Muscle and joint pain

Kathryn1818 profile image

Hi, I would appreciate any advice on HypoThyroid symptoms. I have been on 50mcgs of levothyroxine since 2008. Tested annually and and results always within range, until a month ago when TSH came back borderline. now suffering badly with joint pain, muscle pain, lethargy, tiredness, which has come on in the last 3/4 weeks. I’m struggling to walk, get out of bed and basically do any normal everyday tasks. Dr has increased my meds to 75 mcg and is re testing bloods. I also take Bisoprolol 2.5 mcgs for heart palpitations

25 Replies

Hi Kathryne1818, welcome to the forum.

Sounds as if your doctor has been rather negligent! 50 mcg is only a starter dose, and should have been increased to 75 mcg six weeks after starting it. Is TSH all that your doctor tests? If so, that is totaly inadequate.

a month ago when TSH came back borderline.

Borderline what? Borderline hypo? Wouldn't be surprising on only 50 mcg levo. Do you have the exact number? What is your TSH when it's not borderline?

Your heart palps are more than likely due to being under-medicated. As are all your aches and pains. But, to really know what's going on, you need more in-depth labs:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

So, if your doctor won't do them all, it would be a very good idea to get them done privately. Details of private labs here:

thyroiduk.org/help-and-supp...

:)

shaws profile image
shawsAdministrator

I agree with greygoose that your doctor has been negligent. It is no surprise as I think many GPs have absolutely no knowledge of how to diagnose/treat/prescribe for someone who has a dysfunctional thyroid gland.

All members on this forum are very helpful. Some know more than the medical professionals and we are fortunate that they're on this site (not including myself).

shaws profile image
shawsAdministrator

My goodness - "diagnosed in 2008 and still on 50mcg of levothyroxine!

Once we are diagnosed with hypothyroidism, the aim is a TSH of 1 or lower. We do not want a number 'which is within the range'.

When we are initially diagnosed as being hypothyroid, the aim is that our TSH reduces to 1 or lower as we should have small increases in dose until 1 is reached.

Levothyroxine gave me awful heart palpitations. When T3 was added to T4 (levo) the palpitations ceased.

Your palpitations could have been caused by being on too low a dose of levo.

Kathryn1818 profile image
Kathryn1818 in reply to shaws

Hi

Latest test results from 19/6 -

Test result Thyroid function test Report, Borderline, No Further Action

Coded entry Thyroid function test (X77Wg) Information about this test

Coded entry Serum free T4 level (XaERr) 12 pmol/L [9 - 25] Information about this test

Coded entry Serum TSH level (XaELV) 5.7 miu/L [0.3 - 5] Information about this test

SeasideSusie profile image
SeasideSusieAdministrator in reply to Kathryn1818

Kathyryn1818

TSH: 5.7 (0.3-5)

FT4: 12 (9-25)

And thereyou have it. Not borderline but your TSH is over range. What on earth is your GP thinking?

You need an immediate increase in your Levo, 25mcg now, retest in 6-8 weeks, another increase of 25mcg, another test 6-8 weeks later, repeat until your levels are where you need them to be for you to feel well. Generally, most Hypo patients on Levo only find they need TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.

TSH should be 2 maximum according to GP Online:

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

And this is what the British Thyroid Foundation say:

btf-thyroid.org/thyroid-fun...

How can blood tests be used to manage thyroid disorders?

.....

Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.

There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.

.....

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors) in answer to Question 6:

"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).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of this article from Dionne at ThyroidUK:

tukadmin@thyroiduk.org

Show all these to your GP to support you getting enough Levo to bring your TSH right down.

**

By the way, I see you posted this on the BHF forum:

I also noticed this past week my medication that I have been taking, is out of date by 6 months. (My error).

I am taking T3 with an expiry date of October 2019, there is plenty of leeway with dates of tablets, they may lose some potency but mine haven't and they're 21 months past their expiry date.

I do wonder though how you come to have Levo 6 months out of date. Surely you were getting a monthly prescription from your GP and collecting your Levo every month?

Don't forget to ask for key nutrients to be tested, they play a big part in how our thyroid hormone works and low levels bring their own symptoms, particularly low Vit D can cause muscle and joint aches and pains:

Vit D

B12

Folate

Ferritin

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine were you taking when on 50mcg

Have you had different brand now on 75mcg

Many people find different brands are not interchangeable

50mcg levothyroxine is only a STARTER dose

You have been left woefully under medicated

The aim of levothyroxine is to increase the dose slowly upwards in 25mcg steps until TSH is ALWAYS under 2

Frequently TSH will be below one when adequately treated

Most important results are ALWAYS Ft3 followed by Ft4

Typically when adequately treated Ft3 will be at least 50% through range and Ft4 will be at least 60-70% through range

Absolutely ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12

If left under medicated, vitamin levels frequently drop very low due to low stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result

Palpitations are often due to under medication

Low vitamin D, leads to low magnesium

Low magnesium often causes irregular heartbeat

Request GP test vitamin D, folate, ferritin and B12 NOW

Or if not now when thyroid levels are retested 6-8 weeks after each dose increase

ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

SlowDragon profile image
SlowDragonAdministrator

Having been left far too long on extremely inadequate dose levothyroxine it can be very difficult to tolerate increasing dose upwards

Getting vitamin levels tested and improving to optimal can significantly reduce symptoms

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more ……some less

healthunlocked.com/thyroidu...

Hi, thanks for your comprehensive reply. Just returned from having bloods re taken.

Pathology Request (Request Sent):

Bone Profile (Requested), Creatine Kinase (Requested), C reactive protein (Requested), Full Blood Count (Requested), Liver Function Test (Requested), Plasma viscosity (Requested), Urea & electrolytes (Requested), Urate/uric acid (Requested)

SlowDragon profile image
SlowDragonAdministrator in reply to Kathryn1818

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

How long have you been on 75mcg

Which brand of levothyroxine is it?

Teva brand upsets many many people and is the only brand that makes 75mcg tablets

Tested at 1030. Last dose of levo was yesterday morning at 0800. I am taking 50 m g of accord and 25 mcg (as from 3 days ago) Mercurypharma. No food before testing.

SlowDragon profile image
SlowDragonAdministrator in reply to Kathryn1818

How long since you got dose increase

Mercury Pharma and Accord are most easily tolerated

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord don’t make 25mcg tablets

Bone and joint pain usually low vitamin D

SlowDragon profile image
SlowDragonAdministrator in reply to Kathryn1818

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse 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)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

tukadmin@thyroiduk.org

SlowDragon profile image
SlowDragonAdministrator in reply to Kathryn1818

Come back with new post once you get results

Rarely do NHS test vitamin D, thyroid antibodies, Ft3 or ferritin

Vast numbers of U.K. members forced to test privately to make progress

Just thought I’d share these with you. Results from NHS bloodtest.private test being done on 9/8.

Full blood count;Plasma viscosity Report, Abnormal, No Further Action

Coded entry Mean cell haemoglobin level (XE2pb) 30.2 pg [27 - 32]

Coded entry Mean cell volume (42A..) 96 fL [80 - 99]

Coded entry Platelet count - observation (42P..) 400 10^9/L [140 - 400] Information about this test

Coded entry Monocyte count - observation (42N..) 0.56 10^9/L [0.2 - 0.8]

Coded entry Neutrophil count (42J..) 6.47 10^9/L [1.5 - 7.5]

Coded entry Total white blood count (XaIdY) 10.3 10^9/L [4 - 11] Information about this test

Coded entry Full blood count (424..) Information about this test

Coded entry Red blood cell count (426..) 4.29 10^12/L [3.9 - 5.6] Information about this test

Coded entry Haematocrit (X76tb) 0.411 [0.37 - 0.47] Information about this test

Coded entry Haemoglobin concentration (Xa96v) 130 g/L [115 - 165] Information about this test

Coded entry Nucleated red blood cell count (4266.) < 0.2 10^9/L [0 - 0.2]

Coded entry Plasma viscosity (XE2pd) 1.98 mPas [1.5 - 1.72] Information about this test

Coded entry Lymphocyte count (42M..) 2.95 10^9/L [1 - 4]

Coded entry Eosinophil count - observation (42K..) 0.15 10^9/L [0.04 - 0.4]

Coded entry Basophil count (42L..) 0.12 10^9/L [0.02 - 0.1]

SlowDragon profile image
SlowDragonAdministrator in reply to Kathryn1818

No vitamin D, folate, ferritin and B12 results in here

Nope, private testing for them next week

SlowDragon profile image
SlowDragonAdministrator in reply to Kathryn1818

What vitamin supplements are you currently taking, if any

Important to stop taking any supplements that contain biotin a week before all blood tests

Only do private testing early Monday or Tuesday morning and then post back via tracked postal service

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Come back with new post once you get results

Appointment with private nurse 1000hrs to take the bloods, ordered via Medicheck - Monday next.Only take Vitamin D at the moment but feel terrible. Pain is horrendous and no pain killers touch it.

SlowDragon profile image
SlowDragonAdministrator in reply to Kathryn1818

How much vitamin D are you currently taking

When was it last tested

Never had any vitamins tested. 1000 iu, self administered.

SlowDragon profile image
SlowDragonAdministrator in reply to Kathryn1818

Ok

Come back with new post once you get results from Medichecks

I will. I have ordered a vit d test as you suggested. Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply to Kathryn1818

Medichecks test includes vitamin D

But you will need to retest vitamin D twice year when supplementing

Many of us use Medichecks or Blue horizon once year to test everything

Monitor My Health to test TSH, Ft4 and Ft3 6-8 weeks after any dose change or brand change in levothyroxine

And separate vitamin D test once year

SlowDragon profile image
SlowDragonAdministrator in reply to Kathryn1818

Suggest you consider getting vitamin D tested now separately

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

If under 25nmol GP should prescribe LOADING dose vitamin D (300,000iu over 6-8 weeks) plus ongoing daily vitamin D for life

If under 50nmol GP should prescribe 1600iu daily for 6 months

If under 75-80nmol they should advise self supplement, but rarely do

Then do FULL thyroid and vitamins test around 8 weeks after dose increase in levothyroxine

Thank you, I will. Private testing is going to be the way forward, I think. Just git to try and stick out this pain for a bit longer.

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