Hi everyone, I am in urgent need of advice. I was diagnosed in 2013 hypothyroid and prescribed levo. I then had a downward spiral of health and i was then diagnosed with fibo then lupus and some mystery connective tissue disease. Years later and a million visits to hospital i was told i do not have lupus, my bloods have changed and just get on with it even though i felt really ill. At the beginning of this year i came off levo as the endo agreed i could try as i do not have hashimoto i have a problem with my pituitary gland. Well here's a suprise my painful joints/bones subsided and i felt a lot better. Now the bad news is my thyroid has now given up after a few months of feeling great i have now been put back onto levothyroxine. After the first night of taking it i knew my problem for all those years was actually the levothyroxine and for whatever reason it does not agree with me. Where do i go from here. My GP is ringing tommorow and i need to know what i am asking for. I do not want to take levothyroxine and i believe it was this medication that caused the auto immune response in my body. Any advice gratefully received, thank you xxx
Pain with Levothroxine: Hi everyone, I am in... - Thyroid UK
Pain with Levothroxine
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
You say you don't have Hashimoto's....but have BOTH TPO and TG thyroid antibodies tested?
NHS refuses to test TG antibodies if TPO antibodies are negative. Many Hashimoto's patients only have raised TG antibodies
20% of Hashimoto's patients never have raised antibodies at all
healthunlocked.com/thyroidu...
Hashimoto's can cause symptoms similar to Lupus. Eg rash on face
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 . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.
So it's important to get TPO and TG thyroid antibodies tested at least once .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
List of hypothyroid symptoms
thyroiduk.org.uk/tuk/about_...
Joint pain on Levothyroxine is extremely common. This is often low vitamin D and/or gluten intolerance
Or different brands of Levothyroxine affect people differently. Many people react badly to Teva brand of Levothyroxine
Important to test 6-8 weeks after each dose increase or brand change in Levothyroxine
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
How much Levothyroxine were you on previously and what were blood test results? Extremely common to be left on far too low a dose
Thank you so much for your reply. There is a lot of info there for me to digest. I know i have folic, b12, vit d and iron deficiencies as i have been taking supplements for the last three months and GP wants me to continue for another three. I know mysTSH was 4.00 and serium free T4 level was 8.0 on recent bloods but that is all they checked. I was previously on 75mg and GP told me to take that dose as from now. Thank you
TSH should be under 2. Many people need TSH significantly under 1
FT4 should be in top third of range and essential to test FT3
There's are over 102,000 members on here, because large numbers of GP's have little idea how to manage Thyroid Treatment to provide optimal results
Just testing TSH and FT4 is completely inadequate
Vitamin deficiencies are usually as result of being under treated for hypothyroidism and are especially common if you have autoimmune thyroid disease (Hashimoto's)
Hashimoto's is often linked to gluten intolerance
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist
approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
When you speak to GP Request coeliac blood test and thyroid should be retested 6-8 weeks after each dose (or brand) change in Levothyroxine
Most patients need somewhere between 100mcg and 200mcg Levothyroxine so you are likely to need dose increase in Levothyroxine after next blood test
What brand of Levothyroxine are you currently taking?
Teva brand upsets many people and Teva is only brand that makes 75mcg. Many people take alternate brands as 50mcg plus 25mcg or 50mcg plus a half tablet of 50mcg
List of brands available
thyroiduk.org.uk/tuk/treatm...
I used to only take teva but they just gave me 50mg avatis and 25mg teva. I know they say you should not mix them but i felt like this all the time on teva only. I have only taken the med's for a few days and feel like poop. It feels like bone pain but probably more tissue pain all over body and feel really stiff like the tin man on over the rainbow lol
I did not have any pain though until i started taking the levothyroxine last thursday night? The only reason i went to the GP and asked for blood tests on thyroid was because i felt a lump on swallowing. Other than than that i did not feel too bad at all although i had gained a little weight and slightly tired. I feel like i have been hit by a bus since taking the levothyroxine and definately feel worse on it than off.
I'm sorry your not feeling well with your Levo . You might ask your Dr to switch you to another brand and see if that improves your symptoms too . It's possible that fillers in one brand can be better than fillers in another brand . I was on one brand of Levo and felt absolutely awful once my Dr switched me to another brand many of my symptoms resolved . It does take time for our system to acclimate with new meds and doses .
Suggest you try just the Activis - by cutting a 50mcg tablet in half each day to add to the 50mcg tablet
Assuming that on just Activis symptoms improve, when asking for new prescription request note added to all future prescriptions "No Teva"
Also put in yellow card
Teva is Marmite brand......many hate it....a few love it
When we come off levo, and there are quite a few on here who have got that t shirt, we feel great-better than before. Don't know why but that is how it is. After a while the reality of the thyroid condition hits and we realise tha we cannot do without medication.
Joint pain and bone pain are one of the symptoms of undermedication. Knees and shins are worst for me.
You need to have your vitamin levels optimal and know your results and ranges for tsh, ft4 and Ft3. Once you can see where all those levels are then you can begin to look at the type of medication you are taking.
Having aid that different brands of levo have different fillers in them. I presume you have tried different brands to eliminate a filler problem.
Yes, I got that T-shirt too early on!
Made myself extremely ill stopping Levothyroxine 26 years ago......quite extraordinary how well you can feel, for very short time after stopping Levothyroxine .....then can rapidly feel terrible soon after. Can take months to recover.
I think your problem probably was that you were never properly medicated. So many people think it's the levo making them ill when actually they're just under-medicated; and/or they don't convert very well; and/or they don't absorb very well. There are all this things that should have been investigated before you took the drastic action of stopping it (not lecturing, I did it too - not levo, but T3 as I was/am on T3 only). If you have the right lab results, we could look into it now if you post your results. But, if you never took more than 75 mcg levo you were probably just plain under-medicated.
Unless, of course, it was the Teva that didn't agree with you. That disagrees with a lot of people. So, trying another brand would be good. There are almost always solutions. 
Wise words we'll put as always Grey.
Hi, thank you for your reply. My current bloods are TSH 4.00 and Free T4 level 8.00. That is all the GP tested. I have been on B12, Vit D, Folic and iron for the last 3 months and DR wants me to continue for another three months. It was the GP who suggested i came off med's as i had said i hated taking tablets and even the endo said it was ok to try. Hindsight is a wonderful thing i guess. It could be the Teva as that is the brand i always took. I used to take 75mg and they just told me to re start on the same dose. Unfortunately the pharmacy mixed 25mg teva and 50mg avatis on this pescription. Any idea what most people struggle with on teva?
Frankly, your GP and endo both want shooting! That was very, very unprofessional to suggest you stop your levo. I can understand you wanting to try, but they should have known better.
Taking tablets is a bind, I know. But, it's better than the alternative! It's also better than having to inject daily - I'd much rather take a pill.
You are now grossly under-medicated. TSH is much too high at 4, should be 1 or under. But, need the range to say how low the FT4 is - it certainly looks low. Do you have the range?
But, with just TSH and FT4, I'm afraid it's impossible to tell how well you convert. It could be the Teva upsetting you, though. And it's rarely a good idea to mix brands - that also upsets a lot of people, and I don't know why pharmacists can't understand that. So, before doing anything else, what you need is an increase to 100, which means that they wouldn't be mixing brands, and you could get a brand other than Teva. See how that suits you.
Tell me about your supplements. How much are you taking of each, and when do you take them?
If you are taking B12, it would be better to also take a B complex that contains at least 400 mcg methylfolate, rather than folic acid. All the Bs work together and need to be kept balanced. But I wouldn't expect a mere endo to know that. Is your B12 sublingual methylcobalamin?
Do you take your vit D four hours away from your levo?
Do you take your iron four hours away from levo and two hours away from everything else?
I generally take my levo on a night, I always have done so i space the suppliments through the day normally 210mg ferrous fumarate first thing, fultium d 800 mid morning, cynocominn 1mg mid afternoon and folic acid 5mg tea time. GP just rang and she says i was just out of range? and to try 50mg of activis and cut out the levo. Try that and then give her a ring in a few days. Also suggested i could get my private bloods done to check t3. I am not sure what the range means?
The range is usually the number in brackets after the results.
e.g. TSH 4.00 (0.2 - 5.00) or whatever.
I'm afraid your doctor is an idiot. With a TSH of 4, the last thing you want to do is reduce the dose, you need to increase it. And, Activis is levo, so, how can you take 50 mcg Activis and cut out the levo?
No, you should be on 100 mcg by now, as I said before. Cutting out the Teva is probably a good idea because it could be that that's upsetting you. But, it needs to be replaced by another 50 mcg Activis, making 100 mcg.
As for the supplements, you're probably not taking enough vit d to raise levels - it's not enough to raise the level of a sunburnt gnat! And, cynocominn is the wrong form of B12. You need methylcobalamin and a B complex with methylfolate, as I said above.
Doctors are notorious for prescribing the wrong supplements, because they just don't know anything about them (same goes for hormones!) because they just don't do them in med school. You'd be far better off buying your own and getting the right thing, that would raise your level far faster. And, if she thinks that just taking them for three or six months is going to be enough, I think she's kidding herself. You're probably going to have to supplement for life. That's what being hypo does to you.
You can take your Bs altogether with your vit d. It's just the iron that needs to be away from everything else - oh! did your doctor not tell you to take your iron with 1000 mg vit C? You should be doing that. It stops you getting constipated and protects your stomach. And, with vit D, you should be taking vit K2-MK7 and magnesium. They all work together. We really should respect the co-factors of vitamins and minerals when we take them.
The range for the TSH was (0.35 - 4.7) and the serum free T4 was (7.8 - 21.0). I took 50mg activis last night but still feel awful and had palps and sob in bed. I don't seem to be able to take any levo to be honest as i spent 6 years complaining how ill i felt and it was only this short break this year that made me realise it was due to the meds. Doctor says take it but i cant seem to tolerate it. Thank you for your advice x
Your FT4 is right at the bottom of the range. Hardly surprising you don't feel well. Your problem is far more likely to be that you are under-medicated, rather than that you can't tolerate levo. You won't know if you can tolerate it until you get onto a decent dose. 50 mcg is just a starter dose. Palps are a symptom of under-medication. They won't go away until your dose is increased. As I said before, you should be on 100 mcg by now.
Did you read what I said about the supplements? Taking the wrong supplements won't help you. And, if you took some magnesium taurate, it would probably help calm your heart.
Hi, yes thanks i have taken into account what you have said about the suppliments and i shall look at buying the ones you said. I was obviously on them before they re- took the thyroid bloods. My GP led me to believe my readings were not that bad but funny enough a couple of months ago she said i could start taking the levo then. Then she said "well stay off them and lets see what happens". Maybe she doesn't know what she is talking about, no wonder i am confused by it all. Thanks for your advice.
Sorry you are feeling so rough maple wood. We can all relate. I’m currently waking up from a nap and won’t leave the sofa until bedtime probably. There are alternatives to levo such as NDT. So as a last resort if you tried all the above and it really is an aversion to it, you have other options. If your Drs won’t test your T3 (mine won’t) you can order a private blood test in the post then get a private blood draw done and post it back. I’ve used blue horizon now a few times and it is easy.
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