After starting on 25mcg of Levothyroxine for Hashimotos diagnosis I actually feel worse. Painful joints, aching muscles generally feeling off not much energy. Just wondering if the doses is actually too low? I've been reading different links from the forum and they seem to suggest under 60 should start at near to maximum dose for body weight which would be 108 mcg for my body weight. I've been on the medication for 5 weeks only improvement I've noticed is in my very dry skin on my face has improved. I've also been taking Vit D and K oral spray the same amount of time. Any idea if my thoughts could be right.
Feel worse since starting Levothyroxine - Thyroid UK
Feel worse since starting Levothyroxine
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Katrina999666
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In the same boat... i'm 90kgs, Male & 54.
Started on 25mcg Levo 6 weeks ago then put up to 50mcg 2 weeks ago.
Feel more fatigued, strong headache one side & worse joint / muscle pain.
Endo wants me to wait another 4 weeks on this 50 mcg (6 weeks total) ... so i'm going to try tough it out and get a full set of bloods for valuable data in order to decide action going forward.
Not sure if my body, like yours is rejecting this Levo or that its just adapting to it.
One thing for sure... is that we're under medicated at this dose & Levo replaces rather than 'tops up' i believe... so we could actually have less Thyroid hormone in us now than before starting Levo.
Horrible state to be in !
I feel the same hoping that my body is getting used to the Levo and yes I've read that too that it's merely topping up not replacing which makes me think that I need to be on a higher dose. Will be interesting to follow your journey to see how you feel along the way
I'm not medically qualified but usually a starting dose is 50mcg of levothyroxine (unless you have a heart condition) and every six weeks a 25mcg increase until you feel well again. It can be slow-going but it allows your body to gradually accept synthetic thyroid hormones.
I hope you feel better soon as it is an awful experience when first diagnosed and a surprise to find that our prescribed replacement doesn't improve our health initially.
Thank you for replying fingers crossed
Cola what brand of Levo are you taking?
Euthyrox
Just wondered if you too were on Tevo brand as there seems to be a considerable amount of information saying many people don't do well on this brand
Thanks Katrina... that's useful info for future
Katrina No to start on a bodyweight dose would be too much. We don't always end up on our bodyweight dose anyway.
However starting on a 50mcg is what you should have been given if you have no underlying health problems.
What happens is that your thyroid has been struggling for some time. When the starting dose of levothyroxine hits the system the thyroid goes "Phew, I can take a rest now!". It takes a rest but the 25mcg dose is not enough to replace what the thyroid was putting out by way of hormones so you end up feeling worse.
As soon as you can 8 weeks or 12 if the GP insists go back for blood tests and an increase.
Increases should be done in 25mcg every 8 weeks.
thanks for replying I am going to have repeat bloods week 7 I'm going to take in the evidence that this is not replacing just topping up and I feel worse not better so request that they increase the dose if not I will increase it myself to see if it makes a difference
Remember to make the earliest appointment (even if you have to make it weeks ahead) and it is a fasting test (doctors unaware of this point) and allow a gap of 24 hours between last dose and test and take it afterwards.
A lot of people do feel worse when first start taking Levothyroxine but once you get to a optimal dose you should feel better.
Thanks for replying I'm hoping that's the case hopefully this dose will be increased and I will start to feel more benefit
SlowDragonAdministrator
What were your results BEFORE Starting on levothyroxine?
Bloods should be retested 6-8 weeks after each dose increase
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test B12, folate and ferritin levels at next blood test
How low was vitamin D
How much vitamin D are you taking
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus ultra vitamin (doesn’t include folate)
medichecks.com/products/thy...
Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Medichecks - JUST vitamin testing including folate - DIY finger prick test
medichecks.com/products/nut...
Medichecks often have special offers, if order on Thursdays
Thriva Thyroid plus vitamins
Blue Horizon Thyroid Premium Gold includes vitamins
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Prior to starting on Levo my GP results that I have
TSH 6.5 April'20
TSH 4.21 June'20
The first result was when I was taking supplements with Biotin
The second result was when I had ceased supplements with Biotin
I have requested my results from the GP to see if T3 and T4 were requested I obviously currently don't have the markers from the Lab.
Results from private testing after taking 25mcg of Levothyroxine (Tevo) brand
CRP HS 3.18 < (5)
FERRITIN 183 (13-150)
FOLATE-SERUM 10.69 > (3.89)
VITAMIN B12 ACTIVE 48.9 > (37.5)
VITAMIN D 39.5 (50-175)
TSH 3.1 (0.27-4.2)
FREE T3 3.97 (3.1-6.8)
FREE THYROXINE 15.7 (12-22)
THYROGLOBULIN ANTIBODIES 14.6 < (115)
THYROID PEROXIDASE 127 < (34)
Vitamin D+K2 oral supplement spray I have been taking just 1 spray of that as per the advice given on the Medicheck results.
How long had you been on 25mcg when this test was done?
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?
Ft4 only 37% through range
Ft3 only 24% through range
Helpful calculator for working out percentage through range
See GP for 25mcg dose increase in levothyroxine
Bloods should be retested 6-8 weeks after each dose increase
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Vitamins
Vitamin D needs improving to at least around 80nmol and around 100nmol maybe better
How much vitamin D are you currently taking?
One spray of Better You vitamin D with vitamin K2 is only 1000iu
Likely to need at least 3000iu - 5000iu per day to improve levels
Then ongoing maintenance dose - perhaps 1000-2000iu daily
It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average
Also read up on importance of magnesium when taking vitamin D
Magnesium supplement must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
B12 is low ...active B12 under 70 is considered suspect
Do you have any Low B12 symptoms ?
b12deficiency.info/signs-an...
Ask GP for full testing for Pernicious Anaemia before starting any B vitamin supplements
ncbi.nlm.nih.gov/pubmed/186...
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
Ferritin is often high due to inflammation of Hashimoto’s
GP should do full iron panel test to see if iron is high too
I was on Levo for 12 days when the private test results from Medicheck were done
Followed advice early blood draw with nothing to eat or drink and 24 hr clear of last dose of Levo.
Does that mean FT3 and FT4 they are not in the desired range? How would that improve? increase in medication?
I will increase the Vit D K2 to 2 sprays a day
B12 only main symptoms possibly burning in feet and as I said painful joints and fatigue
I'm going to ask GP for dose increase of 25 to take me to 50 to see if I feel any improvement
If GP doesn't do full Iron panel I'm going to seek to get it done through private testing
Bloods should be retested 6-8 weeks after each dose increase
So this test was done too soon. But as standard starter dose of levothyroxine is 50mcg and you feel awful, ask GP for dose increase
Suggest you try a different brand of levothyroxine
Accord or Mercury Pharma
Thanks interested to see what the next lot of results will provide. Will def be requesting an increase in Levo after next blood draw
Stay on the current dose get re tested in 6 weeks. Make sure you don’t take your medication 24 hours before your blood test If you want an accurate TSH reading. I don’t think iodine is great so don’t over do it with foods that contain this. I have also adapted my diet by removing gluten from it and I feel a lot better. Stress and infections will also worsen Hashimoto.
Just for information, the 24 hrs post Levo is to give an accurate FT4 result that is not spiked by recent ingestion of Levo.
An accurate TSH is done by waiting 6 weeks on a stable dose.
Thanks for replying I had taken the measures previously re the blood draw and will be retested next week to see if the previous results have reduced
Hi Katrina999666,
I was diagnosed in April and initially struggled a lot when I started on Levo. I ached everywhere, cried, couldn't get out of bed etc.
This all sounds awful BUT I am now much improved and have been able to do some gardening and a little decorating, I happily meet friends rather than put them off because I feel so tired, in fact most of the time I enjoy life which I hadn't done for years.
Granted, I'd find it very difficult to work at the moment as I still have off days, usually when I've done too much, but I really believe that I am getting there now.
Keep going, your body will adjust and hopefully, like me, you will start to feel better than you did previously.
Good luck and try to stay positive, it's a journey not a quick fix. 🤓🌈
Thanks for replying were you started on a low doses too? I am convinced that the small dose of 25 has just encouraged my body to have a rest from producing Thyroxine so that might be why I feel worse that I did previously.
That’s exactly what’s happening. That’s why you need 25mcg dose increase in levothyroxine
I feel exactly like this. Did your symptoms ever improve on the higher dose?
Hi no I am still having issues on the 50 so much so I have booked to see an Endocrinologist privately next week in my opinion the GP's don't know enough and don't adequately treat the condition.
I’ve just gone to 75 and really struggling! I also booked to see an endocrinologist last week and he says I’m severely under medicated and need to be on at least 100-125mcg but it’s going to take time to get there I just hope when I’m there the aches and pains go away! I really want to get back to exercise and I agree GPs know very little.
They rely too much on TSH when really they should be paying more attention to T3 T4 I actually feel worse since commencing the medication they should according to nice guidelines start us on the dose for our weight and then titrate the dosage so for my weight I should be on 125 apparently so Im interested to hear what this specialist has to say when I see him next week. Have you had your vitamin D and Vitamin B panel checked to see if you have optimal levels? I was low Vitamin D so supplemented but it hasn't changed anything in how I feel and I have been supplementing Vitamin B too
Yeah my endocrinologist said I need to be on a much higher dose at least 1.66mcg/kg but since the GP started from 25 up I need to keep going up every 6 weeks. After a week on 25 I felt great then bad again same with 50 but 75 just bad.....I’m waiting for my vit D results and ordered a b12 test today - I will supplement based on these results. I just want the joint and muscle pain to go.....my endocrinologist seems really good though 🤞🏻He said TSH needs to be 0.2-1.0 and T4 and T3 in upper range so hoping I’m in good hands and hope you get a good endocrinologist too!
Yep that's what I have found when I have researched that the optimal levels lie in the higher end of the scale with the TSH being usually below 1 I will forget so nudge me in about 10 days time and I'll update you on what he says or what his views are on the ranges. xx
Thanks I will do! Hope it goes well for you and he listens to your symptoms like mine did xx
Just replying about my vitamin D it was 92.5nmol/l so I believe from advice on here that’s okay! I’m waiting for active B12!
I was started on 50 and raised to 100 4 weeks later, but I did have extremely low FT4 and very high TSH when I started. I think the Dr was worried I'd become comatose!
Your body is going to have a period of adjustment but keep trying to remember that it'll get better.
Hugs to you 🤗🤓
Thanks although m y TSH wasn't that high and my T4 was within their labs normal limits I was told as I don't have a copy of the results yet from the GP they said I was subclinical. Initially they weren't going to treat until the Antibodies came back positive and I expressed the concerns I had from approx 3 -4 years re extremely dry skin, loss of body hair, loss of eye brows from outer edge, moods, fatigue amongst other symptoms they decided it might be a good idea to put me on a dose of Levothyroxine. So much to read up on this condition I have also read that the brand Tevo can be an issue for some people and that is what I am on too.
What was your TSH?
April was 6.5 but I was taking Biotin supplement
June 4.21 after having stopped Biotin in the April
July 3.1 after being on Levo for 11 days
I'm not keen on Tevo but that may be because it was the first one I had when I felt awful. I'll see what happens if I'm prescribed it again.
That's interesting you say about Tevo too
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
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 and Aristo are the only lactose free tablets
healthunlocked.com/thyroidu...
Teva poll
healthunlocked.com/thyroidu...
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
SlowDragonAdministrator
So you have high antibodies this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
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...
drknews.com/changing-your-d...
restartmed.com/hashimotos-g...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
ncbi.nlm.nih.gov/pubmed/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
ncbi.nlm.nih.gov/pubmed/300...
The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
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