Have just started Levo. How long for symptoms to improve and hopefully disappear please?

MUSCLE ACHES ARE MY MAIN SYMPTOM

Had an appointment with an excellent endo today who I was extremely impressed with. This was because he put me at ease, had great eye contact, let me explain in my own words the health problems I have been having for over 2 1/2 years now

Which briefly are, after a short 12 week course of statins ending in April 17 I have had muscle aches that have got progressively worse by the week.

I have had very many tests under neurology and rheumatology, but nothing was found.

However, the rheumatologist did say that he was sure that statins caused the muscle aches, but that has resolved but something else was continuing to make my muscles ache, but he was not sure what

So, I posted my Medichecks thyroid results from 25/2/19 here and was very surprised that 6 people said that my TSH was too high and should be under 2 and my FT4 was too low and should be in the upper half of the range, as is the case with healthy people

So, I did another Medichecks thyroid on 13/5/19 and here are the results

TSH 4.24 (0.27-4.2) on 25/2/19 this was 3.71 (0.27-4.2)

free T3 5.18 (3.1-6.8) on 25/2/19 this was 4.97 (3.1-6.8)

Free thyroxine 12.7 (12-22) on 25/2/19 this was 13.400 (12-22)

Thyroglobulin antibodies 113 (0-115) on 25/2/19 this was 105 (<115)

Thyroxine peroxidase antibodies 9.7 (0-34) on 25/2/19 this was 19.3 (<34)

So, it seems that TSH, FT3, thyroglobulin have gone up and FT4 and peroxidase have come down

I took these results to my endo today and after patiently listening to my story, he has started me on 50 mcg levothyroxine, which I shall take first thing in the morning

As a first timer on levo, I would really welcome any comments at all as to what to expect and how long it will take to feel better

Thank you very much

Alps Holiday

[SeasideSusie Remembering]

As a first timer on levo, I would really welcome any comments at all as to what to expect and how long it will take to feel better

Take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

It's not a quick fix. It takes up to 6 weeks for the full effects of starting Levo, or a dose change, and levels to stabilise.

After starting Levo, protocol is to retest after 6 weeks, increase dose by 25mcg, continue retesting/increasing every 6-8 weeks until levels are where you need them to feel well.

It can take many months to find your optimal dose.

Low Vit D can cause muscle and joint aches and pains. If not already tested, I'd make this a priority. Easily and quickly done (within a week) with a home blood spot fingerprick test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

(£29) if your GP wont do it.

[Hidden in reply to SeasideSusie]

Thank you seasidesusie for a detailed reply as usual

I had bit d tested on 25/2/19 it was 70

I am now supplementing 200 mcg daily

What puzzles me I since I took the tablet at 0400 this morning my muscle aches have increased!!

I certainly wasn’t Expecting this

I was expecting either nothing at all or a slight improvement

Thoughts please ?

Thank you

Alps holiday

[SeasideSusie Remembering in reply to Hidden]

I had bit d tested on 25/2/19 it was 70

Is that 70nmol/L, I imagine it is as you're in the UK.

The Vit D Council recommends a level of 125nmol/L (50ng/ml) and the Vit D Society recommends a level of 100-150nmol/L (40-60ng/ml). For your current level of 70nmol/L (28ng/ml), the Vit D Council recommends taking 3,700iu D3 daily (nearest is 4,000iu). Your 200mcg daily is equal to 4,000iu so you are taking the advised dose.

What puzzles me I since I took the tablet at 0400 this morning my muscle aches have increased!!

But if your levels are low, you have to wait until they've built up for any symptoms of low levels to improve.

Are you taking D3's important cofactors as recommended by the Vit D Council -

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking tablets/capsules/softgels, no necessity if using an oral spray

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

Check out the other cofactors too (some of which can be obtained from food).

[Hidden in reply to SeasideSusie]

Thank you once again for a comprehensive reply seasidesusie

Btw When I said I took the tablet at 0400 this morning, I meant the levo, not the D, which has left my muscles the most achy They have ever been

Why do you think that is please?

Thank you

Alps holiday

[SeasideSusie Remembering in reply to Hidden]

"When I said I took the tablet at 0400 this morning, I meant the levo,"

Ah, sorry, I misunderstood.

I can't think why taking your Levo at that time would cause a problem, I'd be surprised if it's connected.

[Hidden in reply to SeasideSusie]

Thank you seasidesusie

Jnetti has suggested that some people my need to start lower nd see how they react, then if Ok, to build up

So, I shall miss tonight’s dose nd reommnce on 25 mcg tomorrow night

Thank you

Alps holiday

[Hidden in reply to SeasideSusie]

Hi Seaside susie

Thank for all your tips, much appreciated!

I have now taken levo 50 mcg every morning at about 0400 for the last 7 days

To start on the plus side, as I keep reminding myself to be positive, I have had 2 episodes where my muscle aches were so much better, that it really lifted my mood!

These were for an hour last Saturday morning and for 12hours on Tuesday

However, the rest of the time my aches have got worser than before I started taking levo

To the point that I’m considering stopping it altogether

I would welcome your thoughts on this please seasidesusie

Thank you

Alps holiday

[SeasideSusie Remembering in reply to Hidden]

To be honest, I don't know but these are my thoughts.

It may be the statins.

Another thing to consider is the brand of Levo. If you have stayed on the same brand all along, maybe it doesn't suit you and you are reacting to one of the excipients. Maybe try another brand.

What stands out to me most is that Vit D not yet being optimal may be involved. It would appear that you may not be taking enough looking back at some of your comments:

To me and HLAB35 you said "I am now supplementing 200 mcg daily" and to VocalEK you said "I meant to say I take 200 iu and not mcg" then "however, following your advice, I shall double that"

You will see from my reply to you above, the Vit D Council recommend, for your level, 3,700iu D3 daily. So what you are taking is a drop in the ocean and really wouldn't help a sunburnt flea. I dare say you're not getting any benefit from the amount of Vit D you are taking, it's not even a maintenance dose for someone who has a good level already.

You also said "Several times I have tried 500 mgs magnesium citrate for up to a week at a time, to no avail". You need to give things time. A one week trial is no good, you can't expect things to change that quickly. It's essential to take magnesium when taking Vit D because it aids the body in conversion of Vit D to the active form.

[Hidden in reply to SeasideSusie]

Thank you seasidesusie for comprehensive reply as usual

The last time the vits/minerals were checked by medichecks was on 25/2/19 as follows

D 69.7 (50-175)

B12 200 (37.5-188)

Magnesium 0.93 (0.66-0.99)

Folate 14.34 >3.80

Ferritin 99 (30-400)

I was taking 200 out vit D3 at the time and 100 mag citrate, plus b12 in my fortified soya milk

Currently I take 400 vit D3, 100 mag, 1800 ca/d combo, K2 mk 7

I shall repeat the medichecks test at the 6 week mark, as the endo suggested, so 5 weeks to go

So, I expect the D to rise then as I've doubled my 200iu to 400

Why does the Vit D council recommend such a high intake of 4000iu?

Thanks once again seasidesusie

Alps holiday

[SeasideSusie Remembering in reply to Hidden]

Why does the Vit D council recommend such a high intake of 4000iu?

That is not a high intake. 200iu and 400iu are very, very low. When I had Vit D deficiency, I started with 40,000iu daily for a week or so, then reduced to 10,000iu daily, then 5,000iu daily. I quickly reached the recommended level and now my maintenance dose is 5,000iu daily. Not everyone needs that amount, some find their maintenance dose is 1,000-2,000iu daily.

You will get all the information you need about Vit D and the doses they suggest by visiting the their website.

Magnesium testing is known to be unreliable. As a supplement, 100mg of magnesium is low. Most supplements are between 350-450mg.

1800 ca/d combo

Presumably this is a calcium/Vitamin D supplement. What is the reason for supplementing with calcium? Have you tested and found to be deficiency? If not then you shouldn't supplement with calcium.

And if you are calcium deficient and it is prescribed, you should take it 4 hours away from thyroid meds.

plus b12 in my fortified soya milk

Soya is not recommended unless it's fermented, eg Natto, and even then some people say we shouldn't take that.

From British Thyroid Foundation btf-thyroid.org/information...

Soya

Soya interferes with thyroxine absorption, therefore if you are taking thyroxine you should try to avoid soya. If you wish to take soya, there should be as long a time interval as possible between eating the soya and taking the thyroxine.

There is evidence of certain brands of soya milk being withdrawn from sale by authorities in countries such as Ireland, Australia, New Zealand and Japan because they contained excessive amounts of iodine or being highly enriched with seaweed products that naturally contain iodine.

[tinkerbell22 in reply to Hidden]

Just seen your message. I have found vitamin D makes my muscles ache when I take it in tablet form! I get so stiff and painful from that type of vit D it's awful. So maybe it's the vit D causing it not the levo? It's easier to stop and start a vitamin than levo, so maybe try stopping the vit D and see if the aches wear off but keep on the levo. I now happily take vit D in spray form no more aches!

[Hidden in reply to tinkerbell22]

Thank you tinkerbell22 - most interesting!

I have to say that does make sense

This is because I increased my vitamin D this week to 3 times what I was taking before to 800 iu and my usual Sunday 60 m ride today was the worst I have ever done ever, as my muscles, the vastus medialis mainly, (the main cycling muscles) were so achy both during the ride and now

I noticed this in fact 2 years ago, when I had a similar experience after taking 1000iu Vit d for a few days before my Sunday ride, but didn't link the 2 together

Thank you so much for pointing this out!

Please can I ask where you get your spray?

What is your thyroid issue and how are you managing it tinkerbell22 please?

Thank you again!

Alps holiday

[tinkerbell22 in reply to Hidden]

Ohh yes that does match, Alpsholiday. A friend of mine has the same problem with vit D tablets causing muscle pains and tension too.

The spray I use is DLux 1000 Daily Vitamin D Oral Spray. It's by BetterYou. I buy mine from Holland and Barrett online. There's a higher dose one but because of my experience of the vit D tablets (and general sensitivity to many things) I take the lower dose for now. This one is 1000iu.

I've heard of a vit D and K spray but I haven't tried this myself yet but would like to try it out sometime.

I have Hashimoto's and a heavy metal toxicity (that either triggered my thyroid problem or my thyroid problem caused the toxicity ... Chicken and egg situation!) My mum has Hashimoto's too. My vitamins and minerals are all low. I discovered most of my important bits of my journey through self testing, as doctors have been Useless all my life (I'm early 40s). Blue Horizon blood tests for thyroid and vitamins have helped me more than any doctor ever has. And hair analysis showed my heavy metal toxicity and low minerals.

I am in a pickle with my thyroid meds currently after taking too big a leap up on my levo That was months ago and I've been flailing ever since I was on T4 and T3 when I was stable before this shift. But I think I need more focus on my heavy metal detox to make better progress on feeling well.

[Hidden in reply to tinkerbell22]

Thank you tinker bell for alerting me to the fact that Vit d in tablet form can cause muscle aches, so, tablets in the bin!

So sorry to hear about your toxicity problems

Not really in a position to help here

But, did read something years ago that did help some people

This was drastic, but involves cutting right back on the variety of foods you eat

And, starting with about 5 basic foods

Say, rice, eggs, milk, 1 veg and 1 fruit and lots of water

Then see how you go for a few days

If not better, rejig the basic diet to another 5 foods

If better, then add 1 item at a time for the next few days, until you are eating lots of varieties

ETc, boring I admit!

But it has helped some people

I have even a vegan diet from age 40, 69 now

Thanks to you, I have posted this on the forum last night

Does Vitamin D in Tablet form make your muscles achy?

And already 6 replies have come in!

Thank you again tinkerbell22

[tinkerbell22 in reply to Hidden]

Hope this is a solution to you, re the vitamin D!

Yeah I've tried a lot of diets but end up more exhausted lol. But thank you for your suggestions xx Hopefully we will all find our ways. Oh fab re your new thread re vit D.

[HLAB35]

I used to take a lot of Ibuprofen for my muscle aches not realising it was mineral and vitamin deficiencies caused by having low thyroid function. Eventually I had to stop taking it as it was contributing to very painful gut issues ( also caused by low thyroid). Now, I am gluten free, also I take 1,000 iu of Vit D daily ( you need more if deficient) and over 300 mg of Magnesium (the type of Magnesium matters though). Not only do I have more energy, but I also have far less pain and inflammation unless I overdo it and then an Epsom Salt bath helps. Read the Magnesium Miracle by Dr Dean from a library, you will be amazed how transformative it is AND it is vital to vitamin D absorption and utilisation which in itself is vital to hormonal and immune health. Statins drastically reduce Magnesium by drawing if out of cells and bones due to a high fluoride content ( read Dr Dean) they are also known to reduce other vitamins and cofactors such as Coenzyme Q10 which is vital for energy levels and ATP production. Look up Magnesium and Vitamin D deficiency symptoms. (Watch out for Fluoride in general as it is known to harm the thyroid.)

[Hidden in reply to HLAB35]

Thank you hlab35 for your reply

Several times I have tried 500 mgs magnesium citrate for up to a week at a time, to no avail

I have also tried 8 weeks of ubiquinol 200 mgs, also to no avail

My vitamin d was 70 on 25/2/19 and I have been taking 200 mcg since then, so it must be much higher now

Thank you

Alps holiday

[vocalEK in reply to Hidden]

I take Bone and Heart Health Formula - 5000 IU Vitamin D3 & 90 mcg Vitamin K2 MK-7. Vitamin D: 1 IU is the biological equivalent of 0.025 mcg cholecalciferol or ergocalciferol

Here is what Vitamin D council recommends. vitamindcouncil.org/how-muc...

[Hidden in reply to vocalEK]

thank you for your reply vocalek

I meant to say I take 200 iu and not mcg

however, following your advice, I shall double that

not sure how you can tolerate 5000iu!

I took 1000 iu once and felt not good at all

thank you

alps holiday

[vocalEK in reply to Hidden]

I suggest you have your blood levels tested again before changing anything. Here's an article about the side effects of too much Vitamin D (which appears to be extremely rare.) "Many side effects of too much vitamin D are related to excessive calcium in the blood.

These include nausea, vomiting and poor appetite." healthline.com/nutrition/vi...

Is it possible that there was something else going on when you took 1000 IU and felt not good? Maybe an infection of some type? Also remember that the addition of K2 MK7 will make sure the calcium gets to your bones instead of hanging around in your blood. It seems logical that this would reduce the odds of side effects from excessive calcium.

[Hidden in reply to vocalEK]

Thank you for your helpful reply vocalek

[valjo18]

I always take my Levo when I wake up during the night, which most of us with thyroid issues do, usually between 3 and 4 am. That way I know it's well away from food or caffeine/milk etc and (may be my imagination) seems to work more efficiently. Hope you feel better soon.

[helvella in reply to valjo18]

I know quite a few members take their levothyroxine when they wake up in the night - but I'd be surprised if it is "most"!

A poll on this forum, from three years ago, showed the majority taking it on waking.

healthunlocked.com/thyroidu...

I take mine at bed-time.

[valjo18 in reply to helvella]

Sorry, what I meant was that most of us with thyroid problems wake up during the night for one reason or another, not that most of us take Levo during the night!

[helvella in reply to valjo18]

Sorry if I misinterpreted!

Still, clarified now.

(Actually, while I do sometimes wake up - mostly I don't.)

[valjo18 in reply to helvella]

Lucky you! 🙂

[Hidden in reply to valjo18]

Thank you valjo18

I took the tablet at 0400 today and my muscle aches are much worse now.

Not sure if I should continue or not

What do you think?

Alps holiday

[valjo18 in reply to Hidden]

You need to continue with the Levo, firstly because from your blood results your thyroid is underactive and secondly Levo takes time to take effect, so you wouldn't see much in the way of improvement for at the very least a couple of weeks. You must be guided by your Endo, as members can only advise from experience. When do you see him again? I assume it would be about four to six weeks, with a blood test a few days before your appointment. By the way 4 a.m. is great, can't possibly be affected by food/drink at that time.There could be a little bit of anxiety going on, I know I don't like taking any new meds and refuse to read the leaflet because I think I've got all the side effects! Anxiety can do funny things. Hope you start to feel better soon. Good luck

[Hidden in reply to valjo18]

Thank you for your reply valjo18

I shall continue

Alps holiday

[Redditch]

Hello

Well firstly well done to the endo who started you on 50, most unfortunately start you on 25 and leave you for three months feeling worse until they go to 50.

However you are unlikely to have a miraculous recovery quickly.

The drugs will take about three weeks to properly embed but it's still probably not enough and he'll raise you to 75 next visit.

For muscle cramps you can take magnesium citrate, codliver oil, and vitamin C.

Good luck

[Hidden in reply to Redditch]

Thank you Reddit has

I have tried magnesium 500 mg for a week at a time, to no avail

Since I took the tablet at 0400 today, my muscle ache are much worse now

Any thoughts please?

Thank you

Alps holiday

[Redditch in reply to Hidden]

OK.. what's your vitamin d3 level in your blood? vitamin D deficiency really gives you pains.

vitamin C at 3g a day for 10 days would be a good idea

Turmeric is favoured by some people.

I used to have dreadful pain, particularly at night, it was miserable, I don't have any now.

I take 1 g vitamin C, I keep my blood levels of vitamin D at around 100, as when diagnosed, mine was 13 and I was in big trouble.

I take magnesium citrate, make sure it's that one and not magnesium stearate or any other derivatives

I also take codliver oil, and turmeric..

My original pains were much improved getting the vitamin D up, then a recent relapse of pain was sorted by the magnesium citrate..

I feel for you, it's absolutely miserable, just keep trying stuff... don't let your doctor put you on amyltriptaline. You can fix this.

Good luck

[MMaud]

Hello there Alpsholiday

I appreciate it is some time since you stopped your statin, but on another health forum, where many have been prescribed statins, for one reason or another, some of those experienceing issues report that it takes years for their symptoms to resolve.

Please don't think I say that to rain on your BBQ, but more to just say that if your muscle aches are statin related, then starting on Levothyroxine may not resolve them at all.

I do hope I'm wrong in your case.

[Hidden in reply to MMaud]

Thank you Mmaud for your reply

I fully understand the long term side effect of statins on muscles

That’s why I have spent the last 2 years and Lots of £££’s to see if there is any muscle damage remaining - there isn’t

I have had 4 mri’s, biopsy, 2 emg’s, 10 CK tests and nothing has been found

So, I have to go along with what the rheumatologist said

That though the statins were the original cause of the muscle aches

That has resolved and something else is now causing it

And, as my thyroid TSH numbers have increased, I am hoping that is the key?

So, hopefully levo will help!

Thank you

Alps holiday

[silverfox7]

Welcome to the forum! Lots of good advice but everything in the Thyroid world moves slowly. We can't speed it up so often patience is needed. We start low on medication so our body gets used to it but rest assured it will be helping you.

Get into the habit of asking for a printout of any testing results so you can see how things are improving. You can always post your results with the ranges and we can help ecplain them to you. The ranges are always important, often in brackets after your results, as they differ from lab to lab so each time we need to see the ranges that go with your results.

It's a big learning curve but keep asking questions and we can help with those. Not all doctors are up to scratch unfortunately but again we can advise.

On the subject of advice and passing it onto your Doctor then be aware this forum is run by Thyroid U.K. and is recommended by NHS Choices for information on thyroid problems. So if you look at their site there is lots of info which may be a bit daunting at the moment but useful to know that there is help for problems you may come acoss and more importantly how to improve things so as well as learning yourself then passing a copy to your doctor can help if there are things he's not up to speed with. Again anything you don't understand, shout out! We have all been there!!!

[Hidden in reply to silverfox7]

Thank you silverfox7 for your reply

One thing I absolutely don’t understand is I took the tablet at 0400 toDay and now my aches are much worse

Any ideas please?

Thank you

Alps holiday

[silverfox7 in reply to Hidden]

It takes a full 6 weeks to get each new dose fully into your system hence retesting in 6-8 weeks plus you need to build up to the dose that is best for you so you may not feel any different for about another 3 weeksbut it takes longer to feel the benefits. So you may feel a bit worse before you feel better but often we react different to another so just be patient. Keep a diary to jot down your symptoms and once you get your next text result annotate that so you have a note of what happened when-your Thyroid story! If you are still feeling it's more of a problem after a week then start another thread and talk to us about it. It may be something in the fillers that is upsetting you-not unusual. But it might just a getting used to the medication issue which it that's the case should ease off. You can test for an allergy but taking an anti histamine one hour before you take your medication and if it stops the problem then it it an allergy and you would need to ask for another prescription and try a different brand. But try to with what you have already started on as it might just be getting used to the medication and if so it will sort inself out. Medication has fillers to bulk it up and keep it stable and has various fillers so if that's the problem it's a case of trying another brand to find the one that suits you.

[Hidden in reply to silverfox7]

Thank you silver fox for some helpful pointers

The tablets are by North Star

I shall miss tonight’s dose andrecommence on 25 mcg tomorrow night and build up,slowly

Thank you silver fox

Alps holiday

[Hidden]

It may be good to have your Vitamin B12, Folate, Ferritin and Vitamin D tested, low levels can contribute to muscle aches too. Post the results with the ranges for answers.

[Hidden in reply to Hidden]

Thank you for your reply bunnyjean

I had all those done on 25/2\19 with medichecks and they are all in range

Thank you

Alps holiday

[Hidden in reply to Hidden]

Thank you bunny jean

Thank for all your tips, much appreciated!

I have now taken levo 50 mcg every morning at about 0400 for the last 7 days

To start on the plus side, as I keep reminding myself to be positive, I have had 2 episodes where my muscle aches were so much better, that it really lifted my mood!

These were for an hour last Saturday morning and for 12hours on Tuesday

However, at the moment, my aches have got worse than before I started taking levo

To the point that I’m considering stopping it altogether

I would welcome your thoughts on this please

Thank you

Alps holiday

[Hidden in reply to Hidden]

Hi greygoose has a good tip for you regarding low zinc try it and see. Sometimes after starting on Levo you own thyroid gives up for a short time to compensate it could be that, don't give up on your medication, it took me nearly two years to get my dosage sorted out.

[Hidden in reply to Hidden]

Thank you bunny jean for your support

Yes I am taking 15 mgs zinc daily, without any result at the moment

What was your thyroid problem and how have you addressed it please?

Thank you

Alps holiday

[Hidden in reply to Hidden]

Hi I will keep it short. I was feeling very well swimming, Yoga, walking back in 2014.

No health issues that I knew about and not on any meds. I was on a weekend to Bath when walking up a very steep hill I couldn't breathe, it was bad and it took me about 3/4 hours to feel slightly better. When back home I went to my GP in Southampton and he sent me for an ultrasound. I was found to have a deviated trachea cause by a large lump on my thyroid. Nothing was done about it including any blood tests. I was moving to France and in early 2015 went to a French GP who passed me on to a thyroid surgeon, where I had a TT at that time I knew nothing about the thyroid. In France the health care system is fantastic, apart from treating Hypo, which they use the old Levo meds. I was on this for 8 months and feeling bad also lots of aching muscles too. I joined this site and never looked back after a full blood test and answers I started on NDT (thyroid s ) from Thailand. It took nearly two years to sort out the correct dose and I am still learning. I have no other health issues at all only the lack of my thyroid. Sorry it's was too long an answer.

It's never easy treating a thyroid problem and a lack of constructive help from the health system doesn't make it easy.

[greygoose]

You probably have low zinc - most hypos do. In which case, taking some zinc can relieve the muscle pains. Mine disappeared almost over-night when I started taking zinc.

[Hidden in reply to greygoose]

Thank you grey goose for the tip

I have now had zinc 150 mgs with my Meal and will continue

Thank you

Alps holiday

[greygoose in reply to Hidden]

150 mg might be a little too much. Normally, one takes 15 mg.

[Hidden in reply to greygoose]

I meant 15 Mgs grey goose !

Thank you

Alps holiday

[greygoose in reply to Hidden]

OK That's better!

[Hidden]

It sounds like you have a decent endo (rare as hens teeth). Getting better from thyroid issues can take a good dose of patience, there are no quick fixes I am afraid. Looking at your blood results it appears that you may have T4 to T3 reversal. T4 should normally be higher than T3. This can indicate some form of thyroid resistance which means that you have a healthy thyroid gland but that the cells in your body struggle to use the thyroid hormones your gland produces. You endo will probably want to give the levo a good chance to work and you will probably need a few dose increases along the way but it may come to you needing some T3. Early days as yet but it might be worth mentioning T4/ t3 reversal to your endo. They might not have heard of it or know much about resistance but it would be worth giving them an opportunity to look into it.

[Hidden in reply to Hidden]

Thank you for getting back mandyjane

Yes it was great to find someone who listens to the patient first, then looks at the numbers

My Free thyroxine (FT4) is higher than FT3 on both dates btw

Thank you

Alps holiday

[Hidden]

Lots of good advice already, just a couple of things to add or confirm - learned from the folk here and by experience.

Q10 (ubiquinone), is lowered by taking statins - apparently they compete for the active sites on the cells that ubiquinone uses. I took statins for a number of years before deciding to stop. But that's another story.

For several years I began to get joint stiffness after lying in bed and even sitting down for a while. I assumed it was just a sign of ageing and didn't really worry as there was no pain. But after starting on thyroxine treatment I suddenly realised I was far less stiff!

You might wonder why your muscle aches haven't gone away, and even got worse. As already said, getting vitamin and mineral levels optimised should help. Another possible reason for feeling worse could be that taking thyroxine has suppressed your natural thyroid function. It's as if the struggling thyroid stops working so hard to produce it and relies on the outside supply instead.

Other possible reasons might be that although 50mcg is the usual starting dose (except for older folk or those with heart problems) it is too high to suit you (some of us are more sensitive than others) and you may need a smaller starting dose. Or the brand of Levo is causing side effects (they use different fillers). A lot of people seem to react against Teva for example.

All the best, and hope you do improve very soon x

[Hidden in reply to Hidden]

Thank you Jnetti for some very useful tips

- the tablet is made by North Star

- I am 69, in reasonable health except for this muscle stiffness

Yes I probably agree with you that the 50 mcg is too high and I need to build up

So, I shall miss out tonight’s dose and recommence on 25 mcg at 0400 monDay morning and see how it goes

How long have you been on levo and what dose, for how long and what was your diagnosis how are you now please?

Thank you very much for your tips - very helpful

I would Be lost without this forum and the helpful people like you!

Thank you

Alps holiday

[Hidden in reply to Hidden]

I started on 25mcg Levo almost a year ago after being diagnosed with "Subclinical" hypothyroidism, (Hashimoto's) but only after an infection that sent everything haywire. After 2 monthly blood tests (or occasionally bit sooner) the Levo was finally increased to 100mcg. Then, though I still felt a little bit hypo, I was told my TSH was "Rock bottom" at 0.01, so told to decrease to 75/100 on alternate days. My T3 and T4 were still within range but I decided to give it a go. This was partly to show willing and partly because I've been supplementing more consistently and this may have improved things anyway.

The next test showed TSH higher but still below range, (and of course T4 lower), so they want to decrease even more!!! This was put off for another couple of months, but the "Threat" of having to decrease Levo even further is not a nice thought. I can function fairly well but hypo symptoms are still present and probably worse than when on 100mcg. I see the practice pharmacist not a doctor. She is a nice person and mostly willing to listen, but like nearly everyone goes by TSH instead of T3 and how we actually feel. So I'm making a list of hypo symptoms I still have and hope she will let me go back to 100mcg after all. Maybe if I offer to sign a disclaimer and promise to reduce again if I get hyper symptoms...

[Hidden in reply to Hidden]

Thank you Jnetti for an informative reply

I hope you get treated for your symptoms, as we all do, and not your “numbers” which lead to them saying we are “normal” and therefore no/less treatment is required

I was indeed fortunate to be recommended this endo by somebody here. He was extremely patient as he listened to my story first before looking at my numbers

Can I ask what your latest numbers are please?

Many people here have said that TSH should be around 1 and FT4 in the top half of the range, if that is where you feel ok

Thank you

Alps holiday

[Hidden in reply to Hidden]

Can I also ask what hypo symptoms you have Jnetti ?

Thank you

[Hidden in reply to Hidden]

Everyone's symptoms are different so I don't know if it will be any help. And mine are nothing compared to what so many others suffer, as I am probably only slightly undermedicated. But if you really want to know...

A certain amount of "Brain fog" is still present, especially when tired. It can be hard to concentrate on tasks that need a lot of mental effort, such as typing (lots of typos that need to be corrected). I still can't drive all that far, especially in heavy traffic or unfamiliar roads, or when tired of course. Occasionally I have an episode of being almost unable to coordinate physically or mentally. The last bad one was around Easter when trying to help a friend put leaflets ready for one of the services at her church. Laying three pieces of paper on top of one another in the right order was almost as hard as trying to run through deep snow! But after an hour or so I was almost back to normal and OK to drive home (with care!)

The other main symptom is difficulty breathing deeply. I used to get attacks of obvious breathlessness but haven't had one for a long time. Then I realised that it usually seemed to happen in church on a Sunday! Normal breathing is fine, except maybe trying to run, or going upstairs too quickly, but singing involves filling your lungs properly. My voice is hoarse anyway but it's still possible to sing sometimes - if there's enough breath.

I also have blepharitis (dry eyes), but drops help control that.

There are a few minor annoyances. Some days my legs ache a bit when going upstairs, other days they are fine. And the usual rough throat and skin, slow growing hair etc...

[Hidden in reply to Hidden]

so sorry you still have lots of symptoms jnetti despite taking levo

I do not understand all the factors that ply their part in optimal thyroid function

so, suggest you PM one of the administrators, who are extremely knowledgeable

as they too have thyroid issues

silverfox7 for example has always given me good advice

good luck

alps holiday

[Hidden in reply to Hidden]

Please don't fuss, because I'm fine really, just with a few lingering symptoms that are more of a nuisance than anything. I mentioned them because you asked and because I want to make a list for the next appointment so reminding myself too!

I will have to fight to try an increase in Levo instead of the decrease they want to give me, which is worrying. But otherwise I have no real problems.

I almost feel guilty knowing that so many folk on here, including yourself, are far worse off. I never had muscle aches, only stiffness.

So thank you for your concern but please don't think I need sympathy! xxx

[Hidden in reply to Hidden]

The thing about Hashimoto's is that it's so variable. Even on an optimum dose of Levo we may go from having symptoms to feeling great, and back again. But I'm determined to get as well as possible.

You will need lots of determination too. It's a very long slow journey for most of us, and the main thing is not to give up.

[Hidden in reply to Hidden]

Thank you for your words of encouragement Jnetti and pleased you are managing your symptoms

And yes, it has been a long 2 1/2 year journey thus far, since the muscle aches started

However, since I saw that great Dr Kelly last week and been started on levo, I do feel optimistic for the future, as I do note a very s-l-i-g-h-t improvement

Thank you

Alps holiday

[Hidden in reply to Hidden]

I'm surprised you were started on 50mcg as you are nearly as old as me

The usual practice if someone is older (over 50!) or has heart trouble is to start on 25mcg, because us oldies are less able to adjust to the sudden introduction of extra hormone.

Check with your doctor though before doing this. As someone said, nothing happens quickly with thyroid. It is totally different from having something like diabetes for example.

[silverfox7]

Keep in touch with your progress.

[Hidden in reply to silverfox7]

Ok will do silver fox