Really achy muscles in lower back, and all arou... - Thyroid UK

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Really achy muscles in lower back, and all around my hips.

Petrahorse profile image
15 Replies

Can anyone advise me on whether this is a ‘stage’ of Hashimotos or something that I just have to learn to live with?

I was diagnosed 14 months ago and last had blood tests in October which were all borderline but ok, other than my antibodies which were… Thyroglobulin Antibodies were 268.9 and the Peroxidase ones were 63.2. I take 25mcg Levothyroxine am before food.

Thank you in advance for advice and support.

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Petrahorse
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15 Replies
Buddy195 profile image
Buddy195Administrator

Can you let us know your recent levels for:

TSH

FT4

FT3

(With ranges in brackets after results, as laboratories can vary)

25mcg Levo is a very small dose of medication, usually a starter dose, so it may be that you need an increase. It’s worth bearing in mind that when GPS say results are ‘borderline’ or ‘ok’ this is not the same as ‘optimal’.

Muscle aches could certainly be linked to hypothyroidism. However, I’ve had recent hip/ SI pain post- covid (rheumatologist says inflammatory arthritis) so it could be unrelated. I’d also check your key vitamins are optimal: ferritin, folate, B12 and Vit D.

Petrahorse profile image
Petrahorse in reply to Buddy195

The vitamins and mineral test I had a few months ago was within normal range.

tattybogle profile image
tattybogle

"I was diagnosed 14 months ago and last had blood tests in October which were all borderline but ok, other than my antibodies...."

Borderline is not 'ok' where thyroid bloods are concerned. and 25mcg is a tiny starter dose , which usually needs to be increased after first blood test .

do you have the actual results [and lab ranges] for Octobers TSH and fT4 tests ?

Petrahorse profile image
Petrahorse in reply to tattybogle

I have attached my latest result. My Endo would not prescribe me Levothyroxine, my GP has.

Blood results
tattybogle profile image
tattybogle in reply to Petrahorse

assuming these results are after taking 25mcg for at least 6 weeks... then they do suggest a dose increase is needed . (Did you test as advised here ? ...eg last dose levo 24hrs previous, test @ 9 am ? )

The fT4 is very low (only 12% through range ~ calculator thyroid.dopiaza.org/ ) and the TSH is still higher than than the vast majority of healthy people (most common TSH in healthy people is around 1)

See this post for a list of references to show GP which explain why they should aim to get TSH lowish in patents on Levo. (some of these references are from sources written specifically for GP's) healthunlocked.com/thyroidu...

and use them to ask GP to increase Levo to 50mcg to see if it improves your symptoms and fT4 level.

Petrahorse profile image
Petrahorse in reply to tattybogle

thank you I will do this. Can you recommend an Endo who is informative with Hashimotos? The one that diagnosed me wasn’t very helpful.

tattybogle profile image
tattybogle in reply to Petrahorse

no, sorry ... i've never seen one.

put up a new post with "Endo recommendations please by P.M. " in the title, with rough details of which area you are in ..... then more people will see it and be able to send you a private message with any recommendations they have .

SlowDragon profile image
SlowDragonAdministrator

Levothyroxine doesn’t “top up “ failing thyroid, it replaces it

Standard starter dose of levothyroxine is 50mcg and dose is increased slowly upwards in 25mcg steps over following 6-12 months

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

ALWAYS Test thyroid levels early morning and last dose levothyroxine 24 hours before test

Please add actual results and ranges

Just testing TSH is completely inadequate

You need TSH, Ft4 and Ft3 tested

Looking for Ft4 near top of range and Ft3 at least 50-60% through range minimum

ESSENTIAL to test vitamin D, folate, ferritin and B12

These are frequently low if left on inadequate dose levothyroxine

Low vitamin levels tend to lower TSH

Unless extremely petite likely to eventually need to be on at least 100mcg levothyroxine per day

SlowDragon profile image
SlowDragonAdministrator

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Charlie-Farley profile image
Charlie-Farley

Hi Petrahorse

As others here have highlighted you are being mismanaged. Looks like your doctor is erroneously trying to top you up- yet another one who can’t even read basic guidelines- they really are woeful. I had the same thing done to me - my GP had not a clue and made me very ill and yes, painful joints etc can be symptoms of being hypo and/ or under medicated. Once optimal most faded away the ones that remain are age related I fancy - wear and tear.

I’ve written my bio as a case study which will give you an insight to what we have to deal with. Just click on my face and it will take you to my profile. Popped a few posts, analogies on different things and also my strategy to get on full replacement dose.

They literally have not a clue if they leave you on 25ug and are doing a lot of damage to people’s health.

Take SlowDragon’s advice and please start reading you have to advocate for yourself when they are clueless.

Petrahorse profile image
Petrahorse in reply to Charlie-Farley

I am beginning to realise that I need to understand as self manage more than I have done so far. Clearly I’ve not done enough.

Sparklingsunshine profile image
Sparklingsunshine in reply to Petrahorse

You've made the fatal assumption we all make that doctors know what they are doing and will make you well. The sheer number of members on this forum says otherwise 😀.

Charlie-Farley profile image
Charlie-Farley in reply to Sparklingsunshine

Yes Sparklingsunshine, Petrahorse

We all believe they know what they are doing initially. We are relatively few who self advocate, the tip of the iceberg compared to the majority who might even have an inkling they are being mismanaged, but fearful of ramifications if they rock the boat. From my past experience understandably, as I have had a GP try to punish me for pushing back. However, that did not deter me - you win out with facts and I’m not scared to go head to head if need be. 😂👍

serenfach profile image
serenfach

Keep going with the self knowledge - the more we know the better we can be at fighting for our own health. In the meantime ask for a creatinine test just to check your kidneys. If your kidneys are struggling, this is where the pain is felt. Hug.

Petrahorse profile image
Petrahorse in reply to serenfach

Thank you for this tip.

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