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.
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.
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.
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
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.
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.
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
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 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.
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.
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.
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
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.
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.
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
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
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
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
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.
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!
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.
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.
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.
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.
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.
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
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 !
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
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?
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!!
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.
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!
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.
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.
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.
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
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.
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.
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Alpsholiday needs some consistent data to work with. IMHO, of course. 
Anti bodies
Self treating with NDT, a little advice needed please.
Results 
Any idea what’s going on?
