High TSH despite levothyroxine 100mcg
Hi there, I am confused because my TSH is 10.82... - Thyroid UK
Hi there, I am confused because my TSH is 10.82 and I already take 100mcg per day levothyroxine. I feel generally unwell, could this be why?
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Thecandlemaker
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Hi Thecandlemaker, welcome to the forum.
I imagine that would be because you're not on the right dose yet. You need an increase in dose.
But was TSH the only test done? No FT4?
Thank you for your reply, ft4 8.8. I have been stable on this dose for 5 years and the tsh suddenly jumped. Is this how things progress? I've been very tired. 🙂
Without more information, it's impossible to say. Do you have a range for that FT4? It looks like it could be pretty low, which would explain the high TSH.
Do you have Hashi's?
Hi, FT4 range is 7.7- 15.1. I don't know if I have hashi's but I am on lithium. My mother and grandmother both have this and lupus. Not sure if they're related?
So, your FT4 is only 14.86% through the range, which is very low. So, yes, that would explain why your TSH has risen.
To know if you have Hashi's, you would have to have your TPO and Tg antibodies tested, and/or an ultrasound on your thyroid. But, if you're taking lithium, that could be the cause of your hypothyroidism. How long have you been taking lithium? And how long ago were you diagnosed hypo?
Goosie doesn’t lithium reduce conversion of T4 to T3?
It does adversely affect thyroid somehow, but I can't remember how. It's worth this patient finding out though.
I think lithium actually stops the thyroid working.
looks like it can mess with thyroid process in all sorts of ways .
psychiatrictimes.com/view/c...
Large incidence of hypothyrodism
impact on conversion of T4-T3,
and even occasionally associated with development of hyperthyroid . (?multinodular rather than graves, i think )
I get the impression that lithium/thyroid is in the 'we don't know how that works' box.
that one is a bit old 2002 .. maybe they know more now
Thank you😊 will take a look next
The question here, that isn't being answered, is: has the lithium caused the thyroid problems, or did hypothyroidism cause the mental health problems that resulted in a prescription for lithium? Personally, I'd put my money on the latter.
Sorry, no the hypo started after I started taking lithium in 2013.
the hypo started after I started taking lithium in 2013.
yes ,but the pertinent question is "did anyone ever test you (properly) for hypothyroidism before they decided to give you lithium ?
There is a long sad history of people being misdiagnosed as MH patients when the issue is hypothyroidism ,, and the MH issue is fixed by treating the hypo.
So it's a bit chicken and egg unless you had proper thyroid testing before lithium
OK, so it probably is the lithium causing the thyroid problem. Have you ever tried coming off it? It's possible that if you did, your thyroid function would return to normal.
Are you sure you didn't have a thyroid problem before starting lithium? Were you ever tested for thyroid function beforehand? Because ADHD and bi-polar can be hypo symptoms.
i agree .... probably be much less lithium prescribed if they tested thyroid (properly!) first.
Hi Thecandlemaker,
I am a mental health nurse, I have been doing research recently for a client of mine who is taking lithium and has issues with hypothyroidism, which is currently not being treated unfortunately and is having a huge impact upon her current mental health.
I have found that lithium definitely has an impact upon thyroid function in some people, female participant seems to be affected the most. I don’t have links to the papers I found at the moment, I will do my best to attach them later today.
This may be some to explore with any health professionals involved in your care. I know from experience (even as a health professional myself) that this can be difficult, primary care/ endocrinologist see thyroid as their side and mental health see lithium and associated mental health issues as theirs. I have come up against much resistance as a professional, and have been told not to involve myself in issues outside my remit. I can’t see people suffer though, so I try educating clients as much as possible and usually point them in the direction of this forum.
Thank you for your reply. I have experienced the same as you many times and I am sure they just think I'm being difficult. I think it's time to revaluate situation with my GP as MH discharge me in 2019. I am waiting for an assessment for ADHD so maybe I don't need lithium anyway? I do feel like I get an energy kick after taking levothyroxine 100mcg for a few days and then 10 days of extreme fatigue. I just can't plan my life like this? And actually my MH has never been better, 8 years no Mania. I believe I have only one episode of psychotic mania in my life and they said I'm bipolar! I think I reacted badly to high cortisone injections for spinal injury, and tramadol. Why would anyone in their right mind trade off thyroid function for mental health? It's no trade off, it's a sacrifice that they impose on us with their poor selection of MH medication with all its crippling side effects. Well maybe I can repair my thyroid? Idk.
Thanks for reading☺️
Has anyone taken you through a thorough diagnostic for Bi-polar? One episode is not enough on its own normally, as it could have been caused by something else (stress etc). You don’t want to be on lithium unless its essential and there are now many other mood stabling drugs that are better and have fewer longterm side effects. Low Calcium is also a big problem with lithium which causes other health issues, including problems with parathyroid (unrelated to thyroid though).
No I don't think they have, they didn't tell me at first when I was hospitalised. The previous psychiatrist has her doubts and sent me for psychological assessment which resulted in a referral for ADHD and ASC. Me being dumb didn't ever question it? This is going to be even more crazy if I've been damaging my thyroid for no good reason at all. Thank you for your help😊
I have articles if you would like me to add them. I appreciate that they are sometimes hard to read as they can be full of medical terminology. I am also aware that you have been given a lot of information to digest today.
You need T3 and T4 testing. T3 is really important so you can know if your body is converting the T4 (thyroxine the storage hormone ) into T3 the form your body can use. Do you have results for those as well as TSH?
Hi there,FT4 range is 7.7- 15.1 but they didn't do FT3😕 but I will ask GP on Monday. TSH 10.83. is that high or am I being OTT?
Thank you☺️
yes 10 is quite high....
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
To put it in context :see this graph of levels in healthy people without thyroid problems:
healthunlocked.com/thyroidu.... most have TSH around 1
In untreated hypothyroid people it can get up to 150 even more.
But over 10 is high enough that if someone went to the GP they would be started on Levo .
If they had 7 or 8 they would wait and see for a few months.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Your free T4 is quite low .
(T4 is one of the thyroid hormones produced by your thyroid, and is also what Levo contains) .
The low T4 explains why your TSH has gone so high.
An increase in dose of Levo will raise the fT4 , which will lower the TSH (Thyroid Stimulating Hormone)
It's hard to say why you have now got less fT4 / higher TSH after being stable for 5 yrs on 100mcg.... there could be a few reasons for this .
It is well known that lithium can sometimes mess with thyroid function it can cause hypothyroidism, or hyperthroidism , or a goitre( enlarged thyroid).
if you do a search for lithium / hypothyroidism you will find lots of references . here's one plucked at random ..I haven' t read it fully ncbi.nlm.nih.gov/labs/pmc/a...
How should lithium-induced thyroid dysfunction be managed in patients with bipolar disorder?
Russell T. Joffe Journal of Psychiatry and Neuroscience 2002
or , it could be something simple meaning you are just not absorbing as much of the Levo tablet from your stomach ... have you changed anything over the last few months ?...like starting to drink coffee too close to taking the tablet, or taking iron tablets, or taking it close to eating etc ... all these would mean you get a bit less T4 from the levo tablet.
or, have you been less reliable about taking levo everyday , and have you checked the tablets are the correct size as prescribed ? ( unlikely , but mistakes occasionally happen at chemist .... i presume you've already thought of these two , but we have to ask )
or, if the cause of your hypothyroidism is Autoimmune, this causes progressive damage to thyroid tissue ,meaning it can't produce as much T4 as time goes on.
People with autoimmune hypothyroidism do sometimes have inexplicable ups and downs in thyroid hormone levels.
(the immune system damages a bit of thyroid, that bit dumps all it's T4 in the blood , so their T4 goes up and TSH goes down ,.... later on the 'extra' T4 is used up , but that bit of thyroid is damaged now and can't make as much T4 as it did before,, so T4 level goes down, and TSH goes high ... and the dose might need increasing to compensate.
did you get diagnosed hypothyroid before you started lithium ?
Thank you so much for this information, it's really helpful. I had constipation for 1 week, I don't know if that can cause malabsorption. I suspect the lithium contributes largely. You have really put my mind at rest with your well thought out logical response that puts it in perspective for me, I really appreciate you. I am really surprised that so many people have been so helpful on a forum, that I haven't experienced before☺️💞your all so lovely
"You're all so nice " lol .. is the rest of the internet not like this place then ?
.. i haven't been anywhere else .. shall i just give it a miss ?
is the rest of the internet not like this place then
Go and read Youtube comments then answer your own question. 
no thanks 
i always thought the invention of the interweb would be like humanity opening pandora's box. .. i can find enough things to get cross about by walking along the beach.
No I got hypo after starting lithium in 2013
I never get issued with the same manufactured refills for 100mcg levothyroxine. I get mecury, accord, Teva and I don't know the others off the top but I have changed pharmacist 4 times in 1 year because I never got any consistency with any of my medications except lithium.
Constipation is more likely to happen BECAUSE you're so low in T4.... but it shouldn't affect absorption much (if at all ?) .
Becoming hypothyroid after using lithium is very common .. one reference i saw said up to 40 % of people on lithium become hypo later.
If you have always been getting different brands and that's not just a recent problem then it doesn't account for the lower T4/higher TSH now.
most likely you just need a Levo dose increase ...
Thank you so much 💞
So that you will at least know what is what - even if the pharmacies get in the way of delivering what you want.
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
From Dropbox:
dropbox.com/s/shcwdwpedzr93...
From Google Drive:
Hi, I don’t know about the effects of lithium on thyroxine dosage, but that aside, I needed to be on a dose of 200mcg of thyroxine before I started to feel well. So you do have some leeway. But it certainly sounds as though you need more
SlowDragonAdministrator
90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s
Hashimoto’s is frequently misdiagnosed as bipolar
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels common as we get older too or if u Dee medicated as you currently are
100mcg levothyroxine may simply not be adequate dose for you
TSH should ALWAYS be under 2 maximum on levothyroxine
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 and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
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 down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
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 often a hidden issue too
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Mental issues including Bi-polar and Hashimoto's
drknews.com/when-hashimotos...
holtorfmed.com/mental-illne...
thyroidpharmacist.com/artic...
hypothyroidmom.com/miss-dia...
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
Lithium will very likely be upsetting thyroid
thyroid.org/patient-thyroid...
I am so grateful for the helpful links, thanks everso much. I have GP on Monday and will ask about the tests, I'd prefer it if nurse gets blood out of me. Hopefully they will do that and work out a way forward💐😊
Insist on thyroid antibodies, all four vitamins, Ft4 and Ft3 testing
Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Approx how much do you weigh in kilo
guidelines on dose levothyroxine by weight
Even if we frequently 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 eventually on, or near 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.
Also here
cks.nice.org.uk/topics/hypo...
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.
BMJ also clear on dose required
Welcome Thecandlemaker
Until you have full thyroid test results we can only make an educated guess...not the most helpful way forward.
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and antibodies all need to be tested
Many of us do this privately ( not eye wateringly expensive) because GPs refuse to do so.
See SlowDragon's reply
thyroiduk.org/help-and-supp...
FT4 is miserably low so FT3 will also be low (because T4 converts to T3)...explains high TSH
Low hormones = high TSH
High hormone = low TSH
The brain is very hungry for T3 and if level is low cognitive function can/will suffer. This could explain a lot.
Lithium can impact on T4 to T3 conversion but if T4 is low in the first place T3 will still be low!
You say the hypo started after taking lithium but do you have any historic lab results to indicate the level of your thyroid hormones before starting the lithium.
You may have had low thyroid hormones for some time before this was revealed.
I suggest that you are now suffering the consequences of long term undiagnosed and untreated low T3....it happens, and mental health suffers. We start to suffer "brain fog" which can get worse until confusion sets in making rational decisions becomes impossible.
Right now your medics are just looking for a way forward through the dark ( lack of knowledge!) without using a torch (full labs, signs and symptoms!) to light the way ... to prevent you falling over (getting better!!)
TSH of 10.83 should be investigated asap...you are seriously hypothyroid!
The only way forward is a full thyroid test as detailed above, Post those results, we will have a look and see what is going on then hopefully we can offer some positive help that will lead to positive results.
Thank you 😊
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