Muscle pain with suppressed TSH and FT3 and FT4... - Thyroid UK

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Muscle pain with suppressed TSH and FT3 and FT4 within normal range

Maramonro profile image
30 Replies

Muscle pain with TSH is 0.15? I understand that I had a pain with TSH 27 but now it shouldn’t be an issue? What is going on?

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Maramonro
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30 Replies
greygoose profile image
greygoose

Just because your FT4/3 are in the 'normal' range, doesn't mean they're optimal for you. Do you have the actual numbers: results and ranges? It would sound as if your FT3 is too low. And, it's T3 that causes symptoms if it is too low or too high. TSH doesn't make you feel anything, so won't make you feel better just because it's low. TSH is just a chemical messenger between the pituitary and the thyroid.

Maramonro profile image
Maramonro in reply to greygoose

Thank you for your response. My FT3 is 2.89(2.2-4), and FT4 is 1.09(0.6-1.4) and they are almost the same as when I had my fully functioning healthy thyroid, even a bit higher as my pre op FT3.

greygoose profile image
greygoose in reply to Maramonro

That still doesn't mean your FT3 is at the right level to make you well. Most hypos would need it higher than that.

Maramonro profile image
Maramonro in reply to greygoose

Yeah that is what I thought until I saw my old results from before when I had my thyroid and was healthy and my FT3 was slightly lower, so that is why I suspect I am close to “right” level, especially since my TSH confirms that I have enough. I am not smart anymore...

greygoose profile image
greygoose in reply to Maramonro

You cannot compare yourself now to the way you were when your thyroid was healthy. It doesn't work that way. Hypos need higher levels of thyroid hormone than euthyroid people. :)

Maramonro profile image
Maramonro in reply to greygoose

Yeah, I guess you are right. I thought it would be some clue on where I need to be given that my symptoms are similar or less regardless of dose. Thanks and take care!

SlowDragon profile image
SlowDragonAdministrator

Essential to regularly retest vitamin D, folate, ferritin and B12 too

When were these last tested

Do you have any results to add

What vitamin supplements are you currently taking?

Maramonro profile image
Maramonro in reply to SlowDragon

Thank you so much for your response. My FT3 is 2.89(2.2-4), and FT4 is 1.09(0.6-1.4) and they are almost the same as when I had my fully functioning healthy thyroid, even a bit higher as my pre op FT3. I am taking vit D, E, Selenium and B complex, and they were all also in range. My Calcium is always on lower border, which could be the reason. It has always been like that.

SlowDragon profile image
SlowDragonAdministrator in reply to Maramonro

When was vitamin D tested ...low calcium levels linked to low vitamin D

Important to regularly retest vitamin levels

SlowDragon profile image
SlowDragonAdministrator in reply to Maramonro

Are you on levothyroxine or levothyroxine plus T3?

What dose?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last third or half of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

Ft4 is 61% through range

Ft3 only 38% through range

Most people on hormone replacement would find that ft3 level too low

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Maramonro profile image
Maramonro in reply to SlowDragon

Yes, my calcium is always on the lower end and I am taking vitamin D supplements although not all are very effective. I am taking tyrosint 137 every day and no T3, and I don’t have thyroid. I was on 150 and felt pain even more and my hair was falling off and was really fine, which had never been before so that is why doctor advised me to lower the dose. I felt better in terms of pain in the beginning but other than that the same more or less. I looked my previous results from when I had healthy thyroid and my FT3 was 2.5(now 2.8) and TSH btw 1.6-2.5( now 0.15) so FT3 similar to what I have now. I know it will never be the same as when I had my own but I hoped that i won’t be in pain at least:( thank you so much for your time and response.

SlowDragon profile image
SlowDragonAdministrator in reply to Maramonro

So how much vitamin D are you taking

Obviously you need to retest vitamin D to check taking enough/not too much

vitamindtest.org.uk

There’s no point comparing Ft3 results from before being on replacement hormones.

Most people on thyroid hormone replacement need Ft3 at least in top half of range....often higher ...so with your Ft3 ranges at least over 3 ....maybe over 3.5

Maramonro profile image
Maramonro in reply to SlowDragon

Thanks! I always thought that pre-op results would be the best indicator on where I roughly need to be, in addition to how we feel. In this case my current TSH correlates to these numbers. I don’t know, you could be right, but I have noticed that when I was on 150 my heart rate was much higher and I was losing more hair and had muscle pain, so more or less on whichever dose I was on I felt the same. I am taking Tirosint which is much more absorbable, so I wouldn’t dare to go over 150 because of the heart rate. I don’t know...it’s terrible because I can never guess how much I need in every given day, and daily needs change. Urghhh😫

SlowDragon profile image
SlowDragonAdministrator in reply to Maramonro

That’s the tricky bit...taking a constant dose that’s enough for active busy days...but not too much if you have a few lazy days

One of the reasons perhaps that people often do better with small doses of T3 alongside levothyroxine

Maramonro profile image
Maramonro in reply to SlowDragon

Thank you again! You are absolutely right. You think is better taking T3 in addition? My doctor offered it to me but I thought it would be safer to have my body converts what it and how much it needs so that way I cannot go over. I am taking 137 now, so what would be T3 with that? I would like to explore the options before I see my endo again in a few weeks.

SlowDragon profile image
SlowDragonAdministrator in reply to Maramonro

To see how well you convert...getting FULL thyroid testing 6-8 weeks after being on constant unchanging dose (and brand) of levothyroxine

Make sure to get blood test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Vitamin D, folate, ferritin and B12 all need to be optimal as well

Come back with new post once you get results

You can work out percentage through range using this helpful calculator

chorobytarczycy.eu/kalkulator

Maramonro profile image
Maramonro in reply to SlowDragon

Thank you very much! Take care and be safe!

HashiFedUp profile image
HashiFedUp

I have had joint and muscle pain for years! Its because our autoimmune system attacks healthy muscle cells, along with thyroid and potentially other parts of the body.

I am on a cox-2 inhibitor called Celebrax and it is magic. I did have a low dose of amitripterline (spelling) at night and that also helped.

Batty1 profile image
Batty1 in reply to HashiFedUp

I was on celebrex and it absolutely reeked havoc on my thyroid levels, your lucky to not have issues.

HLAB35 profile image
HLAB35

We'd need more information than TSH to interpret the issues you're having. Quite often though it's low T3 or low vitamin D or B12 that can be behind muscle pain. Remember to take the cofactor of Magnesium with vitamin D or you won't really get the benefits. For short term relief it'd be perfectly safe to try some transdermal magnesium.... the gel and lotion by Better You is very good.

paindoctor.com/what-is-tran...

N.B. People with (untreated) Graves use up Magnesium very quickly and have a lot of obvious Magnesium deficiency symptoms. In Hashi's, the Magnesium deficiency appears to be more nuanced at first (during the long term hypo phase when most of us get diagnosed), but as soon as thyroid replacement begins (especially if it's Levo - T4 only) the demand for Magnesium increases. Anyone experiencing the early Hashi's flare ups with hyper phases will lose a lot of Magnesium from bone and muscle which will go completely undetected by standard serum tests as Magnesium is regulated by the body to remain at a stable level in the serum.

Maramonro profile image
Maramonro in reply to HLAB35

Thank you for your response. My FT3 is 2.89(2.2-4), and FT4 is 1.09(0.6-1.4) and they are almost the same as when I had my fully functioning healthy thyroid, even a bit higher as my pre op FT3.

Gilbo72 profile image
Gilbo72 in reply to Maramonro

I have the same:ie muscle aches. I’ve been ill for 10 years, the last couple of years the aches really started. There were times when I had to take pain killers at night, just so I could sleep. I would hobble during the day and felt very old. My muscles just feel really tight and tendons inflamed. My T3 has always been pretty low. A couple of weeks ago I started taking 2 magnesium citrate pills a day (one in morning and one in evening) based on some advise here. I am definitely sleeping better, no painkillers, I wake up now feeling snuggly and stretchy rather than stiff and achey. Could be a placebo effect of course! But I’m going to continue for at least 12 weeks. I’m hopping it will soften and calm my tendons and joints that still feel a bit sore. Worth a try?

Maramonro profile image
Maramonro in reply to Gilbo72

Yes, absolutely! Thank you so much I will definitely try it as well. All the best!

jamesal0 profile image
jamesal0

Hi Maramonro taking thyroid medication is like being a pool janitor. Your job is to keep the pool chemicals at the right concentration daily. Fresh rain water is diluting the pool, kids are peeing in it some days but not others, sun is killing the chemicals in summer but not spring , water is evaporating etc etc. You have to guesstimate what you will need each day or at least each week. If you over do the chemicals you burn peoples eyes, if you under do you get bacterial problems. With thyroid meds, under and over are just as bad as each other.

I use symptoms and side effects like pains, energy levels, core temperature, feeling in hands/feet, brain fog, heart palps to drive my meds and it alters every few days. If I have a tough 40km road cycle in 5deg C, I use a more, if I'm sitting around watching Youtube in 22deg home I need less, winter I generally need more and so on. For me letting a doctor tell me how much to take from one blood test every 12 months just does not work.

James

madge1979 profile image
madge1979 in reply to jamesal0

Ah James .. 🤭. I enjoyed that Theory very much indeed ... Thank you .

I'm a bit of that way of thinking myself !

I like to picture it all in my mind and for

me its much easier to deal with when I think it out like that !

I think you're absolutely correct .

The muscle pain we get is horrendous and only feels better when we are supplementing ... or medicating at Optimum .. for us .

I have Graves .. and I have felt that pain .. severely .

Good Luck All ..

Luv Mx🌹

Maramonro profile image
Maramonro in reply to madge1979

Thank you and take care!!!

Maramonro profile image
Maramonro in reply to jamesal0

Thank you for your reply. Yes, I know and I agree completely. That is why I am so frustrated with the doctors who scarred me into unnecessary thyroid removal knowing importance of the organ and difficulties on ever finding the right balance for reasons you mentioned. I just don’t know how to determine when I need more or less. I only noticed that I don’t feel right around my periods, but last 6 month tests results were almost exactly the same even though thyroid replacement dosage was slightly different.

Maramonro profile image
Maramonro

Thank you for your reply. I agree completely. How do you know when you need more or less, since tests are done occasionally and not every body is the same? I have noticed that my results were consistent even when dosage was slightly adjusted and I have been tested for over a year now almost every six weeks. Even when I had concussion my tsh, t3 and 4 were exactly the same.

SlowDragon profile image
SlowDragonAdministrator in reply to Maramonro

Traumatic brain injury often affects TSH

Maramonro profile image
Maramonro in reply to SlowDragon

Yeah, that is what I thought but my results were identical before, during and after brain injury. I was really surprised that it didn’t affect my results or my needs given that body would have different needs during injury like that. When I broke my foot my TSH went up as probably my body needed more to heal but not for brain injury. That’s the problem, we cannot possibly guess when we need more or less as only our brain and body know that. It’s frustrating...

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