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
Muscle and joint pain: Hi, I would appreciate any... - Thyroid UK
Muscle and joint pain
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:
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).
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.
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
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
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
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
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)
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.
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
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]
No vitamin D, folate, ferritin and B12 results in here
Nope, private testing for them next week
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.
How much vitamin D are you currently taking
When was it last tested
Never had any vitamins tested. 1000 iu, self administered.
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.
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
Suggest you consider getting vitamin D tested now separately
NHS easy postal kit vitamin D test £29 via
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.