Muscle pains : I’m on combo t4 100mcgs plus... - Thyroid UK

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Muscle pains

Digger031145 profile image
34 Replies

I’m on combo t4 100mcgs plus 15mcgs t3.

My latest blood results are:

Tsh <0.03(0.35-4.74)

Ft4 13(9-19)

Ft3 3.6(2.6-5.7)

These results stay the same at all my blood tests.

The blood is drawn 24 hours after last dose of both t4 and t3.

I suffer a lot with muscle pain in the upper part of my back and don’t know if this is anything to do with my levels??

Are you able to reply and advise please

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Digger031145
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SeasideSusie profile image
SeasideSusieRemembering

Digger031145

The blood is drawn 24 hours after last dose of both t4 and t3.

That is giving you a false low FT3. The time gaps are:

Levo - last dose 24 hours before blood draw

T3 - 8-12 hours before last blood draw

Any longer and you get false low results, any closer and you get false high results.

As for your muscle pain - low Vit D can cause joint and muscle pain.

Many doctors wont test Vit D, but you can ask, also ask for B12, Folate and Ferritin. All need to be optimal for thyroid hormone to work properly.

If GP wont do them, ThyroidUK have recommended labs who do home fingerprick or venous blood draw kits.

Digger031145 profile image
Digger031145 in reply toSeasideSusie

Thank you for your reply.

So would you think my Ft4 level is ok?

And the low Ft3 is because there is a long gap?

Is it likely my “real” Ft3 level is ok?

I will ask my Gp to do the other blood tests too.

SeasideSusie profile image
SeasideSusieRemembering in reply toDigger031145

130396

Tsh <0.03(0.35-4.74)

Ft4 13(9-19)

Ft3 3.6(2.6-5.7)

So would you think my Ft4 level is ok?

Your TSH is fine, your FT4 is 40% through it's range. Both these results are what one would expect to see when on a combination of Levo and T3.

Is it likely my “real” Ft3 level is ok?

That's hard to say because we are all individual as to where we need our FT3 level to be. That result shows it to be 32% through range. I have seen it said that you add 20% to the result if T3 is taken too far away from the blood draw. If that is indeed correct then 20% of 3.6 = 0.72, so adding 20% would take your level to 4.32 and that would be 55% through the range. But who knows, the only way to know for sure is to repeat the test with the correct timing.

When on combination Levo plus T3, where we need our levels is different for everyone. You may be fine with FT4 40% through range but I take Levo plus T3 and I need both my FT4 and FT3 around 75% through range. There's no one size fits all. So only you can say if these levels are OK for you.

Digger031145 profile image
Digger031145 in reply toSeasideSusie

So is my tsh ok at under 0.03?

I’m only concerned as I keep getting muscle pain especially in my shoulders , when I’ve not done anything to cause it....,

Also, I worry about getting RT3 if I were to increase t4 or t3.

How do you dose with yours and st what times?

I appreciate all your help.

Thank you

SeasideSusie profile image
SeasideSusieRemembering in reply toDigger031145

So is my tsh ok at under 0.03?

As I said, it's typical when on combination Levo plus T3, it's the T3 that lowers and can suppress TSH. Your doctor wont like it though, they think we'll get osteoporosis and heart problems but there's no proper evidence of that. My TSH, depending on whether it's a private test or GP test, comes back at <0.02 or <0.005.

I’m only concerned as I keep getting muscle pain especially in my shoulders , when I’ve not done anything to cause it....,

Which might be low Vit D, see what your test comes back at.

Also, I worry about getting RT3 if I were to increase t4 or t3.

There are many, many causes of rT3, only one of which is to do with too much T4 not converting to FT3 and making rT3 instead. I wouldn't worry about this at all because even if you test rT3 and it comes back high, the test wont tell you what caused it.

How do you dose with yours and st what times?

I take my Levo and T3 (one dose of T3, I don't split my dose) at the same time in the early hours of the morning when I need a trip to the bathroom. That suits me but it wouldn't suit everyone. When I do thyroid tests, I alter the timing of my Levo and T3 the day before my test so that I satisfy the advised time gaps.

Digger031145 profile image
Digger031145 in reply toSeasideSusie

So when testing you personally would take your Levo in the morning the day begorr and your T3 just 12 hours before the test?

I always test at 8 am.

SeasideSusie profile image
SeasideSusieRemembering in reply toDigger031145

When testing this is what I do the day before:

Change time of Levo to 9am (instead of my normal 3-6am-ish) - 24 hours before test

Take half my dose of T3 with Levo at 9am

Take second half of T3 between 9pm and bedtime - 8-12 hours before test

I test around 8.30am the next day then I take that day's Levo and T3 straight after the test.

I do this every time so that I can accurately compare results.

Digger031145 profile image
Digger031145 in reply toSeasideSusie

Doesn’t taking your T3 in the evening keep you awake?

I have tried it before, but I was awake nearly all night

SeasideSusie profile image
SeasideSusieRemembering in reply toDigger031145

Doesn’t taking your T3 in the evening keep you awake?

I always take at least a couple of hours to get off to sleep, taking a dose of T3 at night has made no difference one way or the other.

Digger031145 profile image
Digger031145 in reply toSeasideSusie

Thank you for all your help.

Digger031145 profile image
Digger031145 in reply toSeasideSusie

Hi Susie

Have you seen the reply I got from Hashihouseman?

It had totally confused me now.

What are your thoughts on the reply

Many thanks

SeasideSusie profile image
SeasideSusieRemembering in reply toDigger031145

Digger031145

I'm not medically trained so my opinion is my own. If Hashihouseman is medically trained he should say so, it may (or may not) add more credence to what he says.

I don't agree with him but I wont be getting into discussion about it.

Everyone is different, there is never a one size fits all. If there was, why would my TSH have been suppressed on Levo only with

FT4: 23.7 (11.8-24.6)

FT3: 5.2 (2.8-7.1)

then when my dose was reduced by 25mcg and 4 months later I had a measly rise in TSH but devastating FT3 result

TSH: 0.4

(0.27-4.20)

FT4: 15.6

(11.8-24.6)

FT3: 2.8 (2.8-7.1)

And sometimes the signalling between the pituitary and the thyroid just doesn't work properly so for whatever reason the TSH will stay low

I have been told that when taking combo of t4/t3 that it is expected that tsh would be suppressed.

Also, as t4 has a long half life, splitting the dose would not be of any use.

I agree with what you say here, as do the majority of members on the forum.

Taking your replacement hormone too close to the blood draw is going to affect the result, it you tested 2 hours after taking it you would be measuring when the dose is at it's peak level in the blood.

I have read of just one, maybe two members, who have found that splitting dose of Levo helps. I can't see how but if that works for them then that's fine.

Where anyone needs their hormone levels is a very individual thing, I need both mine around 75% even when on Levo plus T3 combination, others are well with a low FT4. We just have to find what suits us as an individual.

Digger031145 profile image
Digger031145 in reply toSeasideSusie

Thank you SeasideSusie for answering me so quickly.

I’ll take a look back to just check what your levels are like on the combo you take and I’ll bare in mind how you are dosing

Many many thanks for your help

Cranio profile image
Cranio in reply toSeasideSusie

Morning susie

So I have a blood test at 8-30am.

My timings are: Levo + t3 at 6am

T3 at 2pm.

Should I alter timings for doses day before?

I notice you say 8-12 before blood for t3.

My last dose of t3 is about 18 hours before?

Thank you 😊

SeasideSusie profile image
SeasideSusieRemembering in reply toCranio

I would alter timings to follow the advice of the time gaps mentioned, any longer and you get false lows, too close to the blood draw you get false highs, so for the most accurate results last doses should be Levo - 24 hours, T3 (and NDT) - 8-12 hours.

Cranio profile image
Cranio in reply toSeasideSusie

Thank you x

JacqS71 profile image
JacqS71

My readings are almost identical to yours. I had terrible upper back pain for years. I have spent a fortune at the chiropractor and on massage. My Vit D was always just in range - 50 (50-200). I was never advised to up my D. Then I joined the Vitamin D council (free) and discovered that D should be above 100, especially if on thyroxine. This has been since Christmas and my D was last at 130 when tested (few weeks ago). It has literally changed my life.

Digger031145 profile image
Digger031145 in reply toJacqS71

Thank you so much for your reply.

The slightest thing starts my back muscles hurting.

I haven’t had my Vit D checked lately but I will now you’ve said.

Are you on combo too?

Jewiemax15 profile image
Jewiemax15 in reply toDigger031145

Taking magnesium and vitamin K2 is also needed when taking vitamin D. This helps ease musculoskeletal pain

JacqS71 profile image
JacqS71 in reply toDigger031145

Like I say, almost the same as you. 100 T4. 10 T3.

I use garden of life D spray. I took 5000 to get to 130 and take 4000 to maintain. High doses. I will get tested soon and adjust accordingly.

Digger031145 profile image
Digger031145 in reply toJacqS71

When do you take your meds?

I’m going to get Vit D tested and then start using it.

JacqS71 profile image
JacqS71 in reply toDigger031145

Both when I wake up at 6 ish. Then I don’t eat for two hours. However, reading other comments on this thread, I am thinking of splitting the T4 and seeing how it goes. I def have conversion issues.

Hashihouseman profile image
Hashihouseman

Here is an alternative view… Your TSH is not fine! It is way too low and consequently could be implicated in attempts at reducing your free hormone levels despite what you may be taking as replacement, in other words your system could be clearing free hormones it thinks it doesn’t need. Moreover, excessive amounts of levothyroxine in one dose could be reducing the rate of cellular T4 to T3 conversion. In any case your system could be profoundly out of balance, not to say confused!. If it is not to do with dosing maybe there is an undiagnosed issue with your TSH response. However I would consider the simple solutions first and try to get your TSH to a more normal level around 1.0. You could try reducing the T3 to something near a physiological amounts I.e. between five and 10 µg per 24 hours and splitting your levothyroxine dose into two or three portions but increasing it to 125 mcg. In my humble opinion your thyroid function tests are showing over replacement of T3 under replacement of T4 and are consequently suppressed TSH. This is unequivocally not normal for healthy thyroid metabolism. I certainly wouldn’t be worried about timing of tests in relation to when you take your doses, it’s also reasonable to take samples at any point because your replacement is your thyroid hormone level and it’s worth seeing what that is at any time Then relating that back to the time of your last dose. for example, if you took a blood test within two hours of a levothyroxine dose and your free levels were skyhigh it would indicate some value in splitting your thyroxine dose. The healthy thyroid gland does not secrete large amount of t4 or T3 at any one point in time it is spread in a pulsatile fashion over 24 hours.

Digger031145 profile image
Digger031145 in reply toHashihouseman

What you have put in your reply is totally different to what I have always been told.

I have been told that when taking combo of t4/t3 that it is expected that tsh would be suppressed.

Also, as t4 has a long half life, splitting the dose would not be of any use.

Hashihouseman profile image
Hashihouseman in reply toDigger031145

Yup that’s the received wisdom but it doesn’t hold true in theory or for me in practice- and I’ve tried all ways and kept detailed symptoms and test results and dosing spreadsheets and I can therefore give a different opinion which is for me at least that suppressed TSH feels bad and T3 replacement is better kept to the minimum that gives symptom relief and a physiological free T3 level and that splitting t4 replacement into smaller doses does not significantly reduce absorption and does Improve t4-T3 conversion.

The interesting thing about t4 half-life is that it is derived from the metabolic clearance rate which is in turn derived from how much T4 is turned into T3 and rT3 and the minority amounts left behind simply excreted. So if the rate of T4 conversion into T3 or reverse T3 is about the same as the replacement dose even small changes can be felt within 7-14 days or less. Complicating this even further, is that the metabolic clearance rate will change slightly depending on the replacement hormone doses so fine-tuning can make a difference even in the short term.

Furthermore the scientific data and published papers regarding T4 to T3 conversion via D I O 2 enzyme indicates that the more T4 there is the lower the rate of conversion, the logic from that is that pumping up T4 will result in diminishing marginal returns of T3 and that therefore there is an optimum somewhere which is quite probably less than the size of a standard Replacement dose!

Batty1 profile image
Batty1

I have suffered massive lower body pains on EVERY combination of synthroid/cytomel and now Armour Thyroid for the past 2.5yrs and Im always told my levels are fine I supplement with Vit D3,magnesium and still have pains . It's life sucking to have so much pain everyday :(

Digger031145 profile image
Digger031145 in reply toBatty1

Yes this pain when it happens makes me feel very down

This time round my muscles have hurt badly since Friday.

Batty1 profile image
Batty1 in reply toDigger031145

It sounds like your at least lucky to not have pain everyday mine is a friend that comes to visit and never leaves....horrible and nothing works for me.

You should look up Hypothyroidism and Hyperthyroidism and body pains and see what pops up.

Digger031145 profile image
Digger031145 in reply toBatty1

Body pains are listed as a hyPO symptom.

I looked this up over the weekend.

Are you hyper or hyPO

Batty1 profile image
Batty1 in reply toDigger031145

I'm hypo (I have no thyroid) this is what I found.

I have hypothyroidism and have been experiencing severe arthritis-like pain in my shoulders and hips. For some people, hypothyroidism can contribute to joint and muscle problems. Specifically, hypothyroidism may lead to: Muscle aches, tenderness and stiffness, especially in the shoulders and hips.

Digger031145 profile image
Digger031145

That’s what I read too.

What are you taking in the way of thyroid meds?

Do you know what your last blood results were?

Do you leave off your meds before your blood tests?

CarmenML profile image
CarmenML

Muscle burning and tingling is terrible!! I get it especially when im stressed and it starts in my throat, then it goes down my neck and arms. I know I'm off when it happens.

juvuk profile image
juvuk

For me all my muscle pain was actually down to Vit D

Digger031145 profile image
Digger031145 in reply tojuvuk

Thank you

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