I've tried all the Thyroid hormones now, and AL... - Thyroid UK

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I've tried all the Thyroid hormones now, and ALL have made my main symptom of muscle aches worse. Any ideas why please?

Alpsholiday
Alpsholiday

Hi All

My Medichecks results from July this year when I was taking 1.5 NDT

TSH 0.25. (0.27-4.2)

FT4. 11. (12-22)

FT3 4.63 (3.1-6.8)

TPO 209 (<115)

TGO 56 (<34)

Then these results from September, taking 50 Levo and 1 NDT

TSH 0.905 (0.27 - 4.2)

FT4 17 (12-22)

FT3 4.70 (3.1-6.8)

TPO 180 (<115)

TGO 48 (<34)

Then these NHS results from 19 October taking 12.5 T3

TSH 4.87 (0.30-4.8)

FT4 8.3 (7.70-20.6)

TPO 21.6 (<9)

Yes agreed all the numbers could be better

FT4 and FT3 should ideally be in the top third of range and

TSH under 1

TGO and TPO are stable on a GF diet for over a year now

But, my main point is this-

No matter what hormones I take my aches are getting WORSE

Why is that please?

Are there any other checks that may cast a light on thyroid function please?

Adrenals were checked 2 years ago and they were fine btw

Would a parathyroid check be the next step?

Any other tests that may shed light on thyroid function?

Thanks All!

Alps

67 Replies
oldestnewest

I’m working on the idea that if I get my t3 up high in range, that could work. So I recently went from 100t4/10t3 to 50t4/20t3. I did it overnight and had no I’ll effects at all. Do I feel any improvements so far in my pain? No. But it’s only a couple of weeks. I’ll test again in a month. If there’s no room to add more t3 and no improvement then I’ve no idea where to go next. Just accept the pain I guess and assume it’s neuropathy caused by years of no treatment and irreversible. But right now I’m trying to really get the t3 up. My vits are not bad. But my blood is rotten. White blood cells bottom of range. I don’t see anyone talking about that here nor is my Endo concerned. Not sure I e answered your question but as far as I can tell from the thyroid perspective the only thing you can aim for is high t3 whether that’s via t4,t3, ndt or combination. Some talk about the ration with reverse t3 but others say it’s nonsense... In the meantime, I have a bunch of strong painkillers which kill y stomach if I don’t take them after a hefty meal. Agh sorry me me me! Good luck.

Alpsholiday
Alpsholiday in reply to JAmanda

Hi jamanda

Sorry to hear you too are struggling to get back to good health

What do you think caused your pains - mine started with statins for sure

Yes my neutrophils are also like yours - at the bottom of the range 2 (2-10)

And Dr is aware but has not commented

All the best!

Alps

JAmanda
JAmanda in reply to Alpsholiday

My only theory on the pain is neuropathy caused by under treatment. MRIs are ok. I took stains just for a couple of days but my stomach went into spasm. I’ve had lots of muscle cramps and spasms - all low t3 I think plus lack of magnesium etc. If all else fails, I’ll try the dreaded AIP diet! Lol.

Sewit1
Sewit1 in reply to JAmanda

Try cutting out deadly nightshade vegetables this stopped my pains

Kandahar
Kandahar in reply to JAmanda

Or t3 on own, which has worked for me. Fingers crossed!

Kandahar
Kandahar in reply to JAmanda

Hope the painkillers aren’t ibuprofen. Caused bad acidity and burnt my oesophagus.

Forget the ranges: it’s how you feel that’s important.

JAmanda
JAmanda in reply to Kandahar

All painkillers kill my stomach if. Don't have them after a full meal. I've learned the hard way.

SeasideSusie
SeasideSusieAdministrator

Alpsholiday

Then these NHS results from 19 October taking 12.5 T3

TSH 4.87 (0.30-4.8)

FT4 8.3 (7.70-20.6)

Was FT3 tested? Absolutely essential when on T3 only, if NHS wont do it then you should do your own.

Your muscle aches started when you started statins. As you know statins can cause muscle aches. This could be a long term effect of that. Nobody knows exactly how each individual will react to a drug so you can't discount it all being related to the statins.

SlowDragon
SlowDragonAdministrator

I would say

A) your changing dose too much

B) all results show under medicated

It takes minimum 3-6 months to settle on a final dose

Have you actually tried taking the guideline dose of levothyroxine for at least 3-6 months?

(1.6mcg levothyroxine per kilo of your weight)

If after 6 months, and optimal vitamin levels, Ft3 remains too low, adding small doses of T3 alongside the Levothyroxine, typically 3 x 5mcg T3 at 8 hour intervals

If you were going to take just T3, (which only suits a very, very few people) typically would need to slowly increase T3 dose up in 5mcg steps until on 40-60mcg per day.

Taking to little thyroid hormone just shuts down your own thyroid output and doesn’t offer enough replacement thyroid hormones

Even if we 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 on 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.

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.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Hi slowdragon

Thanks for your tips

I am now back on Levo 50 alone, that I took for a good 3 months last year, which certainly made my numbers better, but made the aches worse

So, I stopped Levo.

My thinking then was if you're taking something that doesn't make you better or worse, then no harm in increasing the dose

However, since the aches were worse I reasoned that Levo wasn't for me, so stopped

Now, after many! again encouraging me to persevere, I shall increase the dose at the 3 month mark to 75 instead of stopping

I'm 71 - 10 st 4 and 5ft 10

So, what dose should I be aiming for please?

Thanks!

Alps

SlowDragon
SlowDragonAdministrator in reply to Alpsholiday

Well you should always test first before increasing dose

Guidelines are 1.6mcg per kilo of your weight

But that is only a guideline, some may need more, some less. And age may affect levels too.

Obviously many people find different brands are not interchangeable either, so it’s important to stick on one brand once you work out which suits you best

10st 4lb is 63.31kilo

63.31kilo x 1.6 = approx 105mcg levothyroxine per day

105 x 7 = 735mcg per week

So you might need 100mcg per day and add extra 25mcg once week

But your age might mean you need less

We only increase by 25mcg at any one time. Wait 6-8 weeks and retest

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

Stop taking any supplements that contain biotin a week before ALL BLOOD TESTS

All four vitamins need to be optimal

Thank you slowdragon

Very helpful

Alps

Hi there - as someone who has been diagnosed with adrenal gland issue - sounds like low cortisol to me - don't forget as you put thyroid hormone into your body your adrenals need to up their game - can you tell me what type of adrenal test you had that says your adrenals are OK.

Hi posthinkng

Thanks for your reply

The adrenals were tested by NHS in 2018 by blood tests and a 24 hour urine collection and were fine

Also, a Medichecks saliva test in 2019 that you do 4 times in a day

Thanks

Alps

I suspect statins use

Hi how long did you take statins for - thyroid patients should not really take statins in my opinion as it can affect the muscles - can you try some COQ10 as it could be that your muscles have had COQ10 stripped due to statins. How long were you on them - it can take as little as 48 hours to cause problems - did you take the statins and then the pains or were the pains already there.

Hi posthinking

Took statins for 12 weeks as I was down for a CABG in Feb 17

The aches started on the 3rd dose, but didn't link it to statins

I thought it was because my quad arteries were clogged up, like my cardiac ones were

Nobody took me off them, and I had told everyone I saw

So took myself off them on 11 April 17

If I had come on these forums BEFORE taking those statins, for sure I would not have taken them!

The Biggest mistake of my life and I've made more than my share

Tried 3 months of Ubiquinol 200 mgs to no avail

I was not a thyroid patient back then

Only found out I was hypo in May 19after a Medichecks TSH reading of 4.24 (0.22-4.2) then have tried all the hormones

Thanks

Alps

shaws
shawsAdministrator in reply to Alpsholiday

We expect medical professionals to know how to treat patients who have problems with their thyroid glands. Many seem ill-informed as they cannot answer the patients' queries or know anything much about how to relieve clinical symptoms of hypo patients.

The aim is a TSH of 1 or lower.

posthinking01
posthinking01 in reply to shaws

Hi as someone who had over 100 symptoms of a low thyroid condition which were textbook - it took me 13 years to get help and even then it was not in the UK. This was over 25 years ago and nothing has changed - I am horrified how the field of endocrinology just allow their 'so called expertise' to be kept to themselves instead of making it common knowledge that the heart can develop problems - the kidneys - the liver etc. etc. - in fact I often wonder - what on earth apart from diabetes do they do all day.

Alpsholiday
Alpsholiday in reply to shaws

Thanks shaws for that

Fortunately we can get hold of most of our thyroid treatments privately and self treat

Shall keep looking for an answer

Thanks

Alps

SlowDragon
SlowDragonAdministrator in reply to Alpsholiday

What’s the highest dose levothyroxine you took and for how long were you on that dose ?

Hi

I took 50 Levo for 3 months

Alps

SlowDragon
SlowDragonAdministrator in reply to Alpsholiday

50mcg levothyroxine is only a starter dose

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 on 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.

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.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

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

Weigh yourself in kilo. Multiply kilo x 1.6mcg. This is the daily dose you are likely to need to increase slowly up to

Starting at 50mcg

Wait 6-8 weeks - test thyroid levels

Increase to 75mcg

Wait 6-8 weeks - test thyroid levels

Etc

All blood 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

Repeat steady dose increases until Ft4 is in top third of range and Ft3 is at least 60% through range

Many people find different brands levothyroxine are not interchangeable. Once you find brand that suits you best, always get that brand

Thanks slowdragon for your many points, much appreciated

I Shall try levo 50 again, starting tonight, for a change from the usual morning dose and see if that helps

Thanks

Alps

SlowDragon
SlowDragonAdministrator in reply to Alpsholiday

Get bloods tested after 6-8 weeks on constant unchanging dose and brand of levothyroxine

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Teva, Aristo and Glenmark are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Come back with results when you get them

Early January

Thanks will do

Hi I would definitely say it is statin use - because thyroid patients have issues with their muscles -whether obvious or not - (you did not know at the time) - I would go as far as you are saying - never to take them. The medical profession know that they cause muscle problems by now as it is widely known - I was going to suggest COQ10 or Ubiquinol the purer form and I am disappointed these did not improve the situation - but from research I have done - it can take up to 6 months before the pains subside as the enzymes with the muscles have been depleted or damaged. You might need to go back to your GP or whoever and ask for a short course of steroids to dampen down the inflammation that has been caused.

Thanks for tips posthinking

I've never had high inflammation as I've had C-RP tested more than 10 times and the numbers have always been under 5 (<10)

Also, the same amount of CK tests and levels always unremarkable

So, still looking for the answer!

Thanks

Alps

You’re telling someone to come off statins without asking why they’re taking them! If I’d started taking statins when the doctor recommended them because of raised cholesterol I might have avoided the stroke I had in May. I’ve since been put on a very high dose of statins which I’ve reduced a bit and gone back to the steady diet (slipped during lockdown pre stroke) . I have not had any associated aches and pains, in fact thanks to gradual weight loss I’m feeling loads better than I have in ages!

Hi not sure how much exercise you can do with your CABG issues -

sciencedaily.com/releases/2...

certainly not good reading the above that calcium is involved when you already have an issue with plaques in the arteries which is virtually calcium.

Not sure what you are on - but magnesium could help but be careful - Better you Magnesium spray might help but you have to be careful because of your other health issues. I am so sorry you are suffering like this - I have had all over aching due to Lupus and adrenal issues and it is dreadful - so very painful.

Hi posthinking

Sorry to hear you have long standing issues with lupus - not nice

What helps with that?

I've been a lifelong cyclist, competitive till 45 (now 71)

Still ride as much as I can, and as fast as I can, that will never change!

Aim for 60m every Sunday - Slo is OK!

I tried 500 mgs mag citrate for a week in 18 and my Sunday ride was not good at all

The grafted cardiac arteries are all clear, as evidenced by a stress test scan in June - it's just the quad muscles that don't work as they should!

Thanks

Alps

You are the same age as me - a 48 er - steroids for life I am sorry to say in one way but solved other issues I had suffered with for years.

Honestly... I don’t think you’re sticking with one thing long enough to know whether it’s working. All the chopping and changing is giving you very little information to work with and making it next to impossible for anyone here to suggest a way forward.

posthinking01
posthinking01 in reply to Jazzw

Don't think she is chopping and changing she is doing what I used to do - you know if something is working or not and 3 mnths is long enough to try something out.

Jazzw
Jazzw in reply to posthinking01

He, not she. :). I can’t see that he’s done more than 2 months of anything though. And rather than increasing the dosage of the first medication, he switched to a different combination after 2 months, then another one a month later. Chances in thyroid hormone replacement need to be low and slow, not keep throwing what you’re doing out of the window and doing something different. :) Alpsholiday needs some consistent data to work with. IMHO, of course.

I’ve had a glass of wine. I’m probably being more blunt than usual, cos I hardly ever drink! No offence intended, promise. :)

I change my meds daily - and that is no exaggeration - you don't have to wait months to know if something is working or not.

Jazzw
Jazzw in reply to posthinking01

With thyroid meds I beg to differ.

posthinking01
posthinking01 in reply to Jazzw

Not really I am on liquid levo - it is quite well known that temperature alters thyroid function - after all it is the thermostat of the body - when it is warm I have to reduce and when colder increase - with stress I often have to increase - so it’s quite relevant to tailor to your needs which I have learned to do.

Thyb
Thyb in reply to posthinking01

Which brand/name of liquid levo do you take posthinking01?

I"'m curious as I started on liquid levo couple of weeks ago - Teva Levo Sodium

I also wanted to ask if you take your dose in the Morning or Evening. I just wondered as I understand from this Site that levo could be beneficial if taken at night?

Not sure if it 'could' work better at night? posthinking01

posthinking01
posthinking01 in reply to Thyb

Levo T4 - TEVA - used to have Mercury Pharma which I thought was great until supply issues and then used TEVA which I tried to avoid but actually found better for some reason. No I don't take at night - I would prefer to see what side effects I might have during the day rather than when I am asleep !

Thyb
Thyb in reply to posthinking01

Unerstand, thanks for reply.

I just find liquid has a strong taste and I use the plastic double sided spoon (2.5-5), I haven't tried the syringe yet which comes in the box.

P.s. taste doesn't bother me...but unsure whether spoon is as good as syringe.....meaning when pouring onto spoon I get slightly 'different tastes', whereas, 'possibly' if I used syringe just 'might' get mixture of levo and excipients more accurate.

I just thought it easier to clean spoon each time as opposed to trying to clean 'inside' a syriinge

posthinking01
posthinking01 in reply to Thyb

Hi there - I use the syringe that comes with it - as long as you don't allow the syringe to touch your mouth which would contaminate it - then you would be putting it back into the product which would not be good for hygiene reasons - then it works well - you do not have to wash it - keep it within the cellophane wrapper it comes with and put the end cap back on it. Make sure you shake the bottle first before opening it - my hubby does mine for me as it is a bit difficult to do on your own - I used to end up putting it all over my face.

Thanks jazzw and posthinking for your input, both much appreciated!

I tend to go along with posthinking with this

After a month on something, let alone 3 months, if you are the same as before, then fine, you can try increasing

However, if at the end of the month you are WORSE, then prob it's time to change?

All the best!

Alps

If something is good for you or you are deficient you will feel well almost immediately - if you don't you are possibly doing more harm than good.

When it comes to thyrid treatment you do not feel immediately better -it does take time and has to be done slowly as the body needs time to waken amd adjust. It is a frustrating process but methodcal and careful tiltration every six to eight weeks after blood tests is what wins the race. There are NO instance fixes!!

SlowDragon
SlowDragonAdministrator in reply to Alpsholiday

Typically seems to take around 15 weeks to settle on each dose

Absolute minimum of 8 weeks

Thyroid hormones don’t top up your thyroid, they replace it. So it’s important to take high enough dose

When my tsh is less than 2, I feel hyper and I hate the way I feel.

Hi there - good point - which goes to prove how different we all are - not surprised sometimes that endocrinologists shy away from treating us - it is such a complex disease state.

Kandahar
Kandahar in reply to golzc554

But it’s not the TSH that makes you ‘feel’.

Hello there,

My sympathies go out to you.

I'm not a doctor, but consider it might be something else ...... certain Statins [for high Cholesterol] can cause severe muscle ache too.

Firstly you do need to slow down so many changes of not only meds but doses too its not even possible to evaluate.

When you say you have tried all the thyroid hormone treatments -you haven' t! You need to choose ONE and stick with it for a few months or you will indeed get no where. Thyroid meds have to be slowly increased to allow yor body to adjust to each increase so dose are altered after 6-8 weeks and after blood test for TSH Ft 4 & preferably ft3. Am afraid there is no fast track route though many who are trying to find are optimum dose and type of med wish there was!

Secondly for your bone aching I suggest you have your vit D checked. Low vit D cause awful aching bones, non restorative sleep and fatigue. It is often missed...... I noticed you said you have stopped the statins a while ago but the bone aches havent gone?

Many people do well on levothyroxine and so its a good idea to start with levo. My nextdoor neighbour has faired very well on it for over 20years. Some of us myself included found it didnt work well and had to consider alternatives. .

You need to keep a daily log of your signs symptoms, temp and pulse before rising and the dose of meds, vitamins and minerals, add your blood test results as you get them. This will give you a good record and is useful to spot patterns and trends. You review your medication every 6-8 weeks no earlier. And if needed make ONE change at a time -this is so you know the effect. If you make two changes you wont know which was causing which.

A good book to read is Dr Barry Durrant Peatfield. I think its called You and your thyroid. Knowledge is power!

Hi waveylines

Thanks for your reply

I keep on one hormone for 3 months then if I don't feel better, it may mean the hormone is not for me and I try something else

I have muscle aches not bone aches

Thanks

Alps

Jazzw
Jazzw in reply to Alpsholiday

Having read back through your posts I can see that you have indeed tried staying on one “hormone”. But what you haven’t done is increase your dosage. You jumped from 50mcg of Levo to NDT but then didn’t raise NDT above 1.5 grains, even though your blood tests clearly demonstrated that 1.5 grains wasn’t enough. But instead of raising NDT, you jumped to trying something else, then something else again. You’ve never stuck with something and raised the dosage, you just seem to have assumed that the amount you were taking should have been enough. Maybe on paper it should have been, but thyroid hormone levels are very individual—what works for one person doesn’t work for another.

For example, I need 3 grains of NDT a day to keep me going. It took me a while to discover that and after a couple of years at 2 grains a day, blood tests revealed I was still a little undermedicated. But I didn’t change my meds, I upped my dose.

It takes at least 4 weeks and ideally around 6 weeks for a dosage change to show the full results in your bloodwork. You’re swapping dosages and testing all over the place—you’re not being very scientific about finding your sweet spot.

I’m a bit unclear about what you’re doing at the moment—are you taking 12.5mcg of T3 only? No levothyroxine? 12.5mcg is extremely unlikely to be enough. You’ll most likely need double that, if not more.

Alpsholiday
Alpsholiday in reply to Jazzw

Thanks jazzw for your points

I shall go back on Levo 50 starting tonight and see

I've had the best bloods on Levo alone, with low TSh - and FT3 and FT4 in the upper third of the range

On NDT alone TSH was extremely low, Ft3 was OK but FT4 had hardly risen

So, fingers crossed!

Alps

I really think the best thing you could do is try and improve your patience.

You've only just started to try T3 alone , not had a FT3 test done on it yet to see results , not titrated it up to a reasonable amount yet (presumably as evidenced by TSH 4.87) and not allowed your body time to settle down from the presumably big difference it has noticed from recently changing it from running on synthetic T4 + animal gland T4/T3/T2/T1 to now giving it only synthetic T3 with no T4 of any sort.

And yet you've already decided that T3 alone doesn't work and makes your muscle aches worse ?

Are you really giving anything a fair chance ?

Are you allowing for your body constantly trying to maintain homeostasis ?

I can only assume you HPT axis must be pretty confused by this point .

I reckon that the body likes consistency , and wonder if the more you change things the busier it its trying to catch up with the changes. whereas stability allows gradual improvements, which may take months rather than weeks to fully materialise.

Too Blunt ? i hope not :).... and if you're out for a ride this morning i hope you have a good one.

Thanks tattybogle for your points

Yes I am probably too impatient and need to stick with a particular longer

I shall try levo again as I went to a different chemist this time and got Teva, which I've never tried

I know some say it's not the best

Thanks

Alps

The liquid i found was far better but never tried tabs.

Jazzw
Jazzw in reply to Alpsholiday

So you’ll stop the T3 and switch (yet again) to something else? Or will you add the Levo?

Has your Creatine Kinase been check I know when I was having awful muscle pain it came back high so my Rhumetologist thinks something else is going on.

Hi hmbradley53

Thanks for your reply

How is your muscle pain now?

I have had 10 CK tests over these 4 years and they have all been unremarkable

Thanks

Alps

I was put on Levoxyl and Cytomel and it helped a lot. Have you been checked for other autoimmune diseases ??? I just had a lip biopsy done because I get blisters in my mouth and it's been 5 months and I'm over it. I had a couple things come back low positive and my Rhumy said it can take years before it comes back high positive

Hi.

So many replies and I am so not an expert but I have suffered with joint and muscle pain most of my life. I can say that when I started taking levo 50mcg it did make a difference. I had still had pain but I realised that it was as consistent as it had been. But that did take a few months and a few people commenting on how much better I seemed.

I think I know when I need to alter my dose as it starts to stay bad all the time. I have done alternate 75 and now everyday 75mcg. This is over a few years. I think I am at that stage again but I am just another one that’s going to convince you to stick with it as even I know your levels aren’t great. I really hope you managed to stay on course and that it does improve soon.

Thank you winnienoodle for your encouragement to stick with things a bit longer!

I shall give Levo another go for 3 months and see

The other tweak I Shall try is to take it at night time, instead of the usual morning dose

Thanks

Alps

Really interesting to read all these posts. Initially fatigue, insomnia and feeling cold were my biggest issues. Once I started on Levo muscle/ joint pain kicked in too, lots of tests but nothing conclusive as a cause. I have come to the conclusion that under medication was the issue as the Levo stopped any natural T4/T3 production and Levo on its own wasn’t working for me, this took 2 years. 3m ago I started a T4/T3 combo trial and I am starting to feel a little better but it took 8wks + I have managed to cut down pain relief but fatigue is still an issue especially mid afternoon. Bloods next week lockdown permitting, and then I’m hoping for a further increase in T3 and further reductions in symptoms. Will let u know how I do.

Alpsholiday
Alpsholiday in reply to DM1971

Good luck DM1971 in your health journey!

Alps

Despite your blood results, you could be short of magnesium. Muscle tests are the only reliable ones.

Or are you taking statins? They can cause aches.

Alpsholiday
Alpsholiday in reply to Kandahar

Hi kandahar

My mag results are always at the top of the range

I took a 12 week course of statins, ending in April 17, which started the aches, which haven't gone away.

Still looking for an answer for the aches

Thanks

Alps

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