Hi folks.
My Kidney function (GFR) has decreased quite rapidly since taking Levothyroxine regularly. It also caused my joints and muscles to become so painful I've had to stop taking it. I was on Mercury 75mg p/day. I'm due for a re-test in a few weeks.
I have a medication review this week so I will see what the outcome of that is.
I wondered if anyone else had experienced this?
thanks Sallybones
Previous post shows you were extremely hypothyroid
healthunlocked.com/thyroidu...
How much levothyroxine are you currently taking?
Obviously dose needs to be increased slowly upwards until on full replacement dose....typically that’s 1.6mcg per kilo of your weight ....for most , unless very petite that is going to be over 100mcg per day
Low GFR is linked to being hypothyroid and should improve as dose of levothyroxine increases
Obviously essential to maintain optimal vitamin D, folate, ferritin and B12 levels
Being hypothyroid causes low vitamins, so it’s frequently necessary to supplement virtually continuously to maintain optimal vitamin levels
Link re GFR
ncbi.nlm.nih.gov/pmc/articl...
The GFR is reversibly reduced (by about 40%) in more than 55% of adults with hypothyroidism[40] due to several reasons.
Hi SlowDragon and Nandeke I could cry. I've just done a post that took ages to do and its simply disappeared. I don't know what I did or pressed but its gone!! I'm too tired to do it again tonight but I will reply as your replies have been very helpful and most of all supportive in this time of isolation.
I live on my own so there is no-one home to bounce things off and this isolation is beginning to get to me.
I always hope people who reply don't think I'm ignoring them as I can't always respond the same day as I post & have to pace myself & I'm so slow these days and frustrated that any little thing that goes wrong just gets to me.
Goodnight you lovely people xxx
Suggest you write out any long reply on a notes page...not on the actual forum ....Then copy and paste what you wrote into forum page ....once your happy with what you have written...that way it doesn’t disappear
(It happens to us all!)
No rush
Take care
thanks SlowDragon I will do that xx
When you have been on the correct dose of levothyroxine for at least 3 - 6 months, then, if GFR doesn't improve and you still have joint bone pain, ask GP to investigate further.
Joint pain is frequently low vitamin D ....and/or gluten intolerance
You really need to stick on 75mcg dose levothyroxine for minimum 6-8 weeks ...then get retested
Watch out for different brands of levothyroxine
Work out which brand suits you best and always get that at each prescription
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Hi folks thanks so much for replying. I've been unwell with migraine stomach since I posted but just wanted to respond. I think I needed reassurance really and probably still do but you probably can't add any more to what you've said already.
I've got complex health problems going way back and don't seem to be moving forward again at the mo.
I was doing really well with the Mercury Levo and did persevere to increase it very gradually to 75 mcg p/day, as prescription meds really don't 'like' me. If only they did!!
However the joint and muscle stiffness and pain just stopped me in my tracks in the end and as I live alone its up to me to keep myself from going right under and keep afloat.
I had a feeling it was the Levo making things worse because that was the only new thing to my body, so I stopped it and gradually the stiffness and pain returned to what I call my usual Fibromyalgia symptoms CFS ME call it what you will. Which are bad enough anyway.
My recent bloods done by my GP are: I'm 5'2" 10stone 64 years old
TSH 0.03 (0.34 - 5.6)
FT4 9.1 (7.5 - 21.1) still not up very much
T3 not tested of course!
Serum Ferritin 40 (10 - 180)
Iron 17.5 (10.7 - 32.20 (seem to only tolerate Spatone)
Vit D 93 (60 - 150) was taking 2000 units p/day
B12 I self inject so alway high end of range
Folate 6.8 (3.1 - 19.9)
Haemoglobin 119 (115 - 160) always low or just below range
Haematocrit 0.353 (0.37 - 0.48) always just below range
GFR 63 (90 - 500)
I struggle to get my Vit D, Iron, Folate higher, so need to up my intake of those supplements somehow without upsetting my stomach again.
I don't get enough Vitamin C as fruit upsets my stomach. Have tried Lipsomal Vit C but upsets my stomach too.
'They' keep saying certain aspects point to Anaemia but don't seem to take that further.
I really struggle to eat properly at all because of Slow Gut Motility nausea. Tis a vicious circle really and I'm always looking for a way to break it. Not got there yet!!
A GP rang me end of last week, not my usual one who was on leave unfortunately, but the plan is to see how I go without Levo for 6 weeks then re-test, as they are concerned my TSH is now too low. But of course they didn't test my T3 level. My usual GP normally does.
I've to have my GFR for kidney function retested in 2 weeks because its fallen rather suddenly and I've been getting swollen stomach and ankles.
So there is a plan of sorts. I'm doing my own Medichecks Well Woman UltraVit test soon, which I find really useful as everything gets tested at once and I feel more in control again then.
The virus situation just compounds everything and I know I'm not alone there.
Hope that all makes sense as sometimes when I look back I've made loads of typos and put something really silly!
If you've any more comments do please tell me. It helps to know someone is listening out there.
Sallybones xx
So 10 stone is 63.5 kilo x 1.6. = likely dose levothyroxine required is 100mcg
Certainly your Ft4 is currently far too low and vitamins too
Low vitamins suggests under medicated and it’s important to get vitamins OPTIMAL to help tolerate high levothyroxine doses
Thyroid disease is as much about optimising vitamins as thyroid hormones
Low ferritin
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/Websites/...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
healthunlocked.com/thyroidu...
Helpful post about iron supplements and testing
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post about iron supplements
How long have you now been on 75mcg levothyroxine?
Bloods should be retested 6-8 weeks after each dose increase
Thyroid tests should always be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Important to always stick to same brand of levothyroxine
Low folate
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and may improve B12 levels between injections
chriskresser.com/folate-vs-...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
The very last thing you need is to reduce dose....far more likely need dose increase in levothyroxine
Low GFR is linked to being under medicated and still hypothyroid
Strongly recommend getting TSH, Ft4 and Ft3 together BEFORE reducing dose
Think you will find you have low Ft3 and need dose increase in levothyroxine or addition of small doses of T3 alongside levothyroxine
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...
Fibromyalgia is frequently linked to low Ft3
It’s extremely common to feel worse when initially increase dose of levothyroxine....especially weeks 5-12 approx
Which brand of levothyroxine are you currently taking
Are you on strictly gluten free diet? Or ever tried it....frequently gluten is cause of joint pain
I seemed to tolerate 50mcg of Mercury Levo but not the increase. I'd say in all I started on Levo 25mg about last October then was on 2 tablets one day and 1 tablet the next. Then increased to 2 tablets per day. I've only been on 75mcg for about a month. One problem is that when I get a migraine or digestive blockage I can't keep anything down for several days. So it gets a bit hap-hazzard then.
People generally seem to say Mercury is better tolerated than Teva but I guess its down to the individual.
I've been gluten free for a long time now.
Thanks for giving me the information and support. Sometimes I just need reminding about things and don't have the energy to trawl through older posts.
The main thing seems to be to drastically up my vitamins/iron intake, which I can do straight away.
Thanks for the link to TUK testing companies. I am a member and that test is much cheaper than Medichecks.
I will do the GPs re-test but do my own as well and take it from there with the surgery. I'll wait to see my own GP as she knows my history and she's very accomodating of any ideas i go to her with.
If I could put my feelings on my health in a nutshell and I have said this to various consultants because I've done the rounds - it feels like my body is just shutting down!
Q: One question if you can answer me this SlowDragon because sometimes I think I'm being a bit dumb when its probably really obvious. Is Hashimotos just another name for Hypothyroidism or is it one type of underactive thyroid disease?
I'll re-read your info and thank you for lifting my spirits tonight
xxxx
Suggest trying splitting levothyroxine into 2 doses per day ....can make it easier to tolerate increase
Or increase in smaller steps....if been left under medicated for long time it can be really difficult to increase dose upwards...doing it by splitting levothyroxine dose ..or increase up in 12.5mcg steps
Ideally hang on at 75mcg every day and retest after 6-8 weeks
If you really can’t tolerate .....reduce to alternate 50mcg/75mcg for 6-8 weeks and retest
Always get same brand of levothyroxine
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)
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is very often a hidden issue.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/signs-symptom...
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of where TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
20% of Hashimoto's patients never have raised antibodies
healthunlocked.com/thyroidu...
Paul Robson on atrophied thyroid - especially if no TPO antibodies
paulrobinsonthyroid.com/cou...
thanks SlowDragon. Bear with me. I haven't had antibodies checked for quite some time. If they are 'normal' does that mean there's another reason for underactive thyroid?
Well you need BOTH TPO and TG antibodies tested ....but 1 in 5 Hashimoto’s patients NEVER have raised antibodies
As it’s TPO antibodies that reduce on strictly gluten free diet, it’s not surprising to have low TPO antibodies as you are gluten free
NHS refuses to test TG antibodies if TPO antibodies are negative
It’s only really relevant to know if cause is Hashimoto’s...if patient is NOT on strictly gluten free diet and wondering if going strictly gluten free would help
You already are gluten free... .......
as you have gluten intolerance it is highly likely the cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s
Technically here in the UK autoimmune thyroid disease without a goitre is called Ord’s thyroiditis
en.wikipedia.org/wiki/Ord%2...
Only autoimmune thyroid disease with a goitre is called hashimoto’s by UK medics
But the rest of world calls BOTH varieties of autoimmune thyroid disease Hashimoto’s
Here in UK and Northern Europe Ord’s thyroiditis is more common than Hashimoto’s with goitre
thats a great explanation thanks Slowdragon. You're very busy tonight replying to posters. I've just been reading a few. Anyway time for bed for me but thanks once again for your support. Take care and goodnight. xx
Good luck, I'm sure you'll see improvement by following Slowdragon's advice and learning more about your condition. Lots of little changes add up to a big improvement although it can take time to see results. You'll feel a bit better with each small change.
Nausea on Levo?
Hypo and Kidney function?
Stopped levo - now only on T3
Levo
