Really suffering. Switched from Levo 50mcg to eltroxin 50mcg year due to extreme muscle pain in legs - originally first few months made a good difference - no leg pain .
7 months on ive Gained over a stone in weight and joints have started really hurting again
I can’t bare being so fat - and pain is getting unbearable. I’m getting blood tests next week but I think I want to just stop the medication now 😞😣 it’s really causing me stress.
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.
Plus, especially as you have Hashimoto's you need vitamin D, folate, ferritin and B12 tested.
Low vitamin levels are extremely common with Hashimoto's
Essential to test FT3 and FT4, plus vitamins
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3
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 money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting.
If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Are you on strictly gluten free diet as you have Hashimoto's?
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, often 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
Ideally ask GP for coeliac blood test first
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
thyroidpharmacist.com/artic...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
thyroidpharmacist.com/artic...
Thank you so much
Going to try and get a private blood test as I KNOW my gp surgery won’t do such a thorough test 😕
Why are you on such a low dose, i.e. 50mcg of Eltroxin a day. It should be increased every six weeks by 25mcg until your TSH is 1 or lower with FT4 and FT3 in the upper part of the range.
Is your doctor another who believes that once the TSH is in range - even the top i.e. around 5 - that the patient is on sufficient? They shouldn't be treating people who are hypo as they've no knowledge at all. I think I would remove their licence.
Pretty much .... they have been shocking tbh made a fuss when I e asked for regular blood tests 😞
Inform the doctor that you need a blood test every six weeks with a 25mcg increase in levo until your TSH is 1 or lower with FT4 and FT3 in the upper part of the ranges (they've been told not to do the Frees) so just tell him if you have heart problems in the future it will be down to too low a dose of thyroid hormones and too high a TSH.
Also ask for B12, Vit D, iron, ferritin and folate. All have to be at an optimal level.
So can my regular gp do thyroid tests that cover what I need to know ? Or do I definitely need the free’s to get a clear picture?)
Thank you so so much
As your dose is so low, just get the usual ones from GP. They only do the very basic, i.e. TSH and T4. Ask for B12, Vit D, iron, ferritin and folate as deficiencies can also cause symptoms.
The aim is a TSH of 1 or lower and T4 should be in the upper part of the range. We usually have to get the Frees through a private lab. So concentrate in getting TSH to 1. Your GP hasn't a clue so tell him what you've been advised by Thyroiduk.org.uk who are recommended to help/advise.
If necessary, later on you can get a Full Thyroid Function Test from one of the private labs. Tell your GP that we're shocked you are still on a starting dose and that has probably caused your unnecessary weight gain as your metabolism hasn't been raised enough by a low dose. Remember you need the earliest test possible (you may have to make it a few weeks ahead as surgery is busy) it should be a fasting test and allow a gap of 24 hours between your last dose of levo and test and take afterwards.
Get print-out of results with the ranges (some charge a nominal sum for paper/ink). Put them on a new post for comments.
Thank you so much for all your help . I have an apt on Thursday morning so the following week I will be able to post results .....
so depressing 😞
Well it looks like these are great results
Albeit I took it upon myself to up my eltroxin to 75 Mcg rather than 50 from 7 days before test. Says antibodies ..... negative!! They were high before?? I’m
Confused! I have felt much better on 75 Mcg and as the results say normal I think doc will just say Carry on with 75.
2018
THYROID STIMULATING HORM. - (KT) - Tell patient normal
Serum TSH level
0.96
mIU/L
0.35 - 4.94mIU/L
Comment
Euthyroid or adequate replacement.
Rarely, patients with pituitary/hypothalamic
hypothyroidism can have a normal TSH.
17-May-2018
ANTI THYROID PEROXIDASE - (KT) - Tell patient normal
Anti-Thyroid Microsomal Ab
<0.5
IU/mL
Anti-TPO RESULT
Negative
My TSH was 0.26 so my gp called and told me to reduce from 100 to 75 Eltroxin but still getting palpitations.so confused.....
Have you always had palpitations when on levothyroxine? They should not reduce our dose according to the TSH. We need a TSH of 1 or lower. They make the mistake of believing a very low or suppressed TSH will cause heart problems but if someone has had Thyroid Cancer and thyroid removed they have to have a suppressed TSH, as far as I know.
Put up a fresh post for yourself and if you have the ranges (figures in brackets after results) state them and more members will comment.
Will do when I return from holidays.
Well, you're under-medicated! 50 mcg is only a starter dose. You're not supposed to stay on it for years on end. Your doctor should have retested you after six weeks, and increased your dose by 25 mcg. And he should have repeated that process until all your symptoms have gone. 
😣 thanks
I read somewhere that eltroxin CAUSES weight gain ... terrified that upping the dose is gonna make me balloon even more 😰
Will get a private blood test and continue to take my 50mcg and will post my results here as soon as poss then will look for more advice from
Yourself and everyone else here that are much more helpful than my gp!
GPs don't know enough to be helpful.
Weight gain is a hypo symptoms. Eltroxin might sometimes cause weight gain in some people, but it's not automatic that you gain weight just because you take it. But, you need to take enough of it to raise your FT3, so that you can lose weight.
Thank you - gosh I hope I can sort this out. It’s completely ruining my life . I’m
A former prof dancer and now teach and actually cannot demonstrate anymore what with the pain and excess weight. Wearing baggy clothes to disguise the massive weight gain is becoming so depressing 😓
Yes, it would be. I know what you mean. Have you been on 50 mcg since your diagnosis? When was that?
Been on 50mcg for 1.5 years
Then your doctor has been very negligent. Can you see someone else? In any case, I would write to the practice manager and make a formal complaint. This doctor isn't fit for purpose!
I’m tempted 😣 the practise overall are making people wait 3 weeks for appts 🙄 it’s in a bad state
Then do it! Don't let them get away with it. If your doctor didn't know how to treat a hypo patient properly, then he should have referred you to someone who did, or asked advice. He has seriously endangered your health! What would have happened if you hadn't found this forum?
Hypothyroidism causes low metabolism which in turn can cause weight gain.
Taking thyroid hormones replaces our defunct thyroid and increases our metabolism to normal IF doctors know what they are doing. Thus weight should decrease. I am sure you will have more than a couple of the following symptoms:-
thyroiduk.org.uk/tuk/about_...
Blood tests for thyroid hormones have to be at the earliest possible, fasting, you can drink water, and allow a gap of 24 hours between last dose and test and take it afterwards. Otherwise your results will be skewed and may not get the increase you need, i.e. the aim is a TSH of 1 or lower - not somewhere in the range as most doctors believe. They will be happy if it is somewhere in the range but patient will be symptomatic. The aim is to be symptom-free and feel well.
50mcg is a starting dose and should be increased every six weeks by 25mcg until TSH is 1 or lower.
Hi have you been tested for vitamin d deficiency. If you haven't ask your doctor this might help.
Nope they literally only tested tsh about a year ago ( last blood test I had) - will ask them to do this !
It sounds as if you are Vit D deficient. That can cause dreadful musculoskeletal pain. I only went to my GP when my Osteopath persuaded me my intense pain wasn't all caused by my long term spinal condition. I was diagnosed Hypo and very deficient in Vit D so put on 10,000 daily for two months. I can't tell you how much better I felt fairly quickly. Do ask your Dr for a test. I hope you feel a lot better soon. I can sympathise with the weight gain, I have the same problem but ever hopeful things might improve eventually.
I suffered from bone and joint pain as well and I asked my doctor I wanted a vitamin d test it came back I was deficient In vit D he put me on 1600 iu for 2 months then reduce to 800 iu once a day. It made such a difference really quickly. Good luck
Sorry just seen slow dragon gave me the list of things I need! Plus private blood test companies - will have a browse
Do u think I should start taking a spray of 3,000 from
Today to see if it makes a difference or wait until my blood tests on Thursday and ask for a vid d test and see then where I’m at ? - so desperate to get rid of the pain 😣
Medichecks and Bluehorizon are mail order companies. The blood tests are ass finger prick, you fill a tiny tube, and post them back.
If on a budget go to a Medichecks on Thursday, they have a thyroid Thursday sale.
Ideally it's good to test before you supplement, that way you can retest in a year/6 months and confirm you've had good improvement. But if you want a more rough and ready approach, you could go straight into it, and see if you feel improvement.
Personally, I would try and sit it out until the test ~ although you could get out in this sun for a bit if we have some☀️ Make sure you get a copy of all the results, though, to post on here. My GP told me mine were 'fine' for years😕 ~ when I eventually got copies of my medical notes, I could see that my Vit D levels were 19, 18, and finally, 4 😳.
At the last test Vit D test they were 100, thanks to Better You spray, which was the only thing that increased my levels, due to poor absorption ~ I use all their sprays now. Don't forget if you're taking Vit D you need to take Vit K2 MK7 and magnesium, I think SeasideSusie has posted details of the different types so you can choose the one that suits you. I found the magnesium helped me enormously, and also B12 ~ I was/am obviously very deficient, although again, GP said I wasn't ~ useless! Good luck ~ hope you get it sorted out and soon feel better 🍀 x
Thabk you so much - will look into all this - really appreciate your help
I was exactly same as Mamapea1 - Doc never told me I was very vitamin D deficient. Was vitamin D deficient for YEARS. Turned out to be low in B vitamins too and gluten intolerance. More on my profile
Yes, SlowDragon, I have noticed your Vit D fiasco also! GPs are dangerous in their attitude to depleted vitamins. My rheumatologist was just as bad ~ he was the one who was requesting the testing ~ GP herself had NO interest in it at all😳.
She always said they were all 'fine' ~ I was so naive and ill I just accepted it, especially when I was always considered to be a neurotic malingerer, albeit one that couldn't b****y walk!! I later read letters between the two of them in my notes re Vit D ~ GP was concerned that she would have to prescribe Better You spray, and was stressing about the cost ~ Rheumy was replying saying that although (name of eminent prof who had recently given them all advice on Vit D deficiencies via conference at large midland hospital) had suggested that prescribing Better You spray was the best way forward, he didn't believe it was "set in stone" so she needn't worry, (re cost), he would "sort it out". He 'sorted it out' by giving me injections that had NO EFFECT WHATSOEVER.
Even this only came about because one of my daughters (a feisty one😊) came to GP with me and demanded a vitamin test as she thought I had SIBO and pointed out my deformed bones. GP said she'd never heard of SIBO, and hadn't my skull, etc., always been like that??? 😱. But at this point, she knew my level was 18! So Vit D then came back as 4 and and all others dangerously low ~ GP wrote in my notes 'don't know what her daughters talking about ~ I'll look into it'.
When injections didn't work, (I think after the first 6 it went up to 5) I was given the horrible, IMO Fultium 800iu ~ oh the stomach and bone pain!😩. I tried so hard to take them, but in the end gave up and spotted the Better You spray in Revital and bought some.
Problem over🎉levels were raised to 100 and I've used it ever since. When GP was surprised at my results, I showed her my spray, and she opened her desk drawer and showed me hers! "Oh yes, I use that! good, isn't it?" Wtf?? Why didn't she tell ME?? God only knows, but it looks like she was worried about having to prescribe it, in retrospect. Disgusting!
Sorry for the long rant, but this particular deficiency has had such a detrimental effect on my health, and had I been more aware of the indifference of medics and taken control earlier, I would have saved myself a lot of suffering. Same can be said for B12 for me. It can't be emphasised enough how important it is to have optimal levels of all vits and minerals, and how most Drs WON'T help you with it. xx
PS. In another response to GP from Rheumy re injections not working : "there has been a disappointing response to the intramuscular injection with vitamin D but this is not unusual in patients as we know" 😳. So, if they KNOW this, why was I travelling each week for months, (and my daughter had to take me because I couldn't walk, so she took time off work), to have Ergocalciferol 600,000 injected just to raise it from 4 to 5??? It gets weirder and weirder ~ perhaps some 💰 involved somewhere?? xx
PPS ~ have you always been admin SlowDragon, and I've got brain fog, or are congrats in order here? xx
Hi
No ...your brain is obviously in top gear....my admin label is new and shiny!
It's appalling isn't it. They worry about the cost of Better You vitamin D spray...its only a few quid.
I only found out about Better You mouth spray by accident. A friends son had been recommended it by nutritionist in response to very low vitamin D levels causing insomnia. I recommend it a LOT on here
It took 4-6 months of terrible bone pain as my bones remineralised.
easy-immune-health.com/pain...
I don't think most GP's even know that vitamin D and B12 are actually closer to being hormones, and essential for life.
Yes my low B vitamin levels did not appear until vitamin D started to repair everything. Peripheral neuropathy etc. Good vitamin B complex plus sublingual B12 soon improved all that
Fortunately discovered Dr Gominack's website about how vitamins B and D are interlinked.
drgominak.com/sleep/vitamin...
It's the same with FT3 test. Costs 92p for NHS to do. Will they test? Even if on T3....no the test is "too expensive"
Congratulations 🎉 and very well deserved IMO! 😊 I have been helped enormously by your sage advice and posts.👍
Yes, I too came across it by pure chance, but according to the correspondence between the devious ones on my notes, we made a good choice. It apparently has been studied (NHS?) and proved to be superior treatment for extreme deficiencies. Despite this, Rheumy had a quick check of the 'area prescribing committee guidelines' and found it wasn't 'set in stone'.
When you think I've been with this GP for 20 years of the 25 that I've been ill, and dx with a myriad of AI disorders, it really does show an appalling lack of care, and extreme penny pinching, as you say. I too suffered with the terrible pain of remineralisation, to add to the 'FM' muscular pain I already had! Of course, at that time I was unaware of co factors, and wasn't taking K2 or magnesium, (although I always enjoy a bit of the latter in the bath), but I worry about the lack of these, when I was upping the Vit D so dramatically😳
I have just bought Better You Vit K2 spray ~ I was taking higher nature before, but thought I'd give it a try, even though gut issues are much improved, metabolism is still at a snails pace!🐌.
I get through gallons of the B12 spray, and recently was reading a link recommending a B12 supplement that was found to be 'as good as injections', (which I'd love) but now can't find the link.
I don't suppose you happen to have seen/read it? It wasn't the Jarrows, which I'm about to buy because I can't find it. I'm beginning to think I dreamt it lol! I wonder if I saw it on the PA site? Oh dear ~ I watch the same films over and over as well, and often still don't remember the end!
Thank you for links ~ I'll have a read, regardless of whether or not I already have😊. I'm toying with the idea of taking 92p down to the surgery and asking her to test my T3! ~ she'll get a double shock ~ I'm on T3 only now! lol! Thank you for all your help and good luck in your new role🍀 💕xx
PS ~ I'm pretty sure my brain hasn't been in top gear since the early 1990's but thanks for the compliment. 🌹 x
Here's a link about oral being as good as injections
aafp.org/afp/2003/0301/p979...
I was using Jarrow sublingual, 1000mcg daily plus Igennus Super B complex.
Now a year later and better dose adjustments on T3 & T4, just using B complex and Better You vitamin D at 3000-5000iu daily, K2 Mk7, magnesium and vitamin C.
Reduced selenium to just twice week after recent testing showed levels slightly high. Was supplementing selenium for almost 2 years, gastroenterologist recommended it after endoscopy.
Few more B12 links
Using test of Homocysteine levels to check for low b12
Good explanation on homocysteine
B12 generally
drjockers.com/warning-signs...
Thank you so much for taking the time SlowDragon! I really appreciate it ~ I'll have a read.... 💕xx
wait till see GP and push for testing first.
I also had a problem with Eltroxin, Dietroxin etc. I am now much happier on Natural Thiroyd from Greater Pharma in Thailand....BUT I am having enormous issues with receiving my tablets because of our horrendous postal service in South Africa. I have been waiting 6 weeks now and still no tabs have arrived.! Anyone else had the same problem?
I went off Levo and switched to Nature Thyroid, I feel much better
Just making sure that you do realise that Eltroxin is just a brand name for levothyroxine?
If you swapped from 50 microgram Mercury Pharma levothyroxine to 50 microgram Eltroxin, they would be the exact same tablets!
What make were you on? Lots of people have issues when they change make.
(This is not to disagree with those suggesting you need a dose increase - almost certainly you do.)
Thanks for responding - yes I did know it’s levothyroxine but the eltroxin and levothyroxine have different fillers ( I had wockhardt Levo)
The muscle pain in my legs disappeared within 2 days of switching to eltroxin - so that’s why I’ve stick with that brand x
I’m
Thinking it may be a case of needing to increase the dose but I guess I’ll know after blood tests next week x
Iam sufferng from same but no solution i just wana dye.. But scaring of death.
Well i believe theseresults are great?! Also Weird as my antibodies were positive previously .....
does this mean I don’t actually have auto immune thyroid disorder??!
I actually started taking 75 Mcg eltroxin a week before tests and felt way better on that dose -
2018
THYROID STIMULATING HORM. - (KT) - Tell patient normal
Serum TSH level
0.96
mIU/L
0.35 - 4.94mIU/L
Comment
Euthyroid or adequate replacement.
Rarely, patients with pituitary/hypothalamic
hypothyroidism can have a normal TSH.
17-May-2018
ANTI THYROID PEROXIDASE - (KT) - Tell patient normal
Anti-Thyroid Microsomal Ab
<0.5
IU/mL
Anti-TPO RESULT
Negative
Now confused as to massive weight gain and painful joints/ligaments 😰
Is there anything that can be done to stop this tiredness, no energy, pain and weight gain.
Bone Pain tingling in fingers and excessive weight gain
Levothyroxine and muscle aches back bone pain :(
Hypothyroidism problems
Such bad pain in legs - could it be NDT or supplements?
