Hypothyroidism

[Endocaro]

I have Hypothyroidism which has been linked to long term Lithium medication use, my blood levels have been high since October, which is impacting badly on my mental health. My query is how can my gp be so sure that it's linked to Lithium intake if nothing else has been investigated? How do I question her findings when I'm filled with anxiety because I feel like its due to something more serious, I have a neck lump and changes in my neck/throat that I can feel and see, how do I ask for more investigations? Thank you

[SarahJane1471]

HelloTo start with it would be helpful if you could post any recent tests you have with the ranges in brackets included.

There are many knowledgeable people on here who can advise but without test results it’s different to answer your question.

Please post and someone will get back to you

[pennyannie]

Hello Endocaro and welcome to the forum :

The link between Lithium and thyroid health issues, both hyper and hypothyroidism is well documented.

Thyroid UK who are the charity who support this forum are an excellent source of further information plus you can simply search on the panel top right " Search Healthlocked " and just highlight you want to focus your search of the Thyroid forum.

I would think the next step is for your doctor to run a full thyroid blood panel to include your TSH, T3 and T4 and thyroid antibodies and logically arrange a referral for a scan on your neck and depending on the results a referral to endocrinology might be the next step.

[helvella Administrator Thyroid UK]

My query is how can my gp be so sure that it's linked to Lithium intake if nothing else has been investigated?

Your GP cannot be sure.

There is a saying often used in medicine:

When you hear hoofbeats think of horses, not zebras

Unfortunately, it might be a zebra. Even a zebra is a herd of horses. You really do need to look to be sure. The impact of this is to avoid the costs (not just financial, but also emotional, time, etc. to the patient) at the expense of possibly missing that zebra.

Where there is a simple, quick, inexpensive test for horses, it makes sense. Especially if that can be done and then almost immediately go on to look for zebras.

As far as I am aware, you would have a similar risk of every other cause of thyroid issues as well as the impact of lithium.

This is a short blog:

caringpractitioner.co.uk/in...

[Sparklingsunshine]

Hi

Lithium is a well known cause of thyroid problems but unless she investigates whether you have an underactive thyroid or an underactive thyroid due to Hashimotos, which is an autoimmune condition where the immune system repeatedly attacks the thyroid, then its just speculation. Most people diagnosed with an underactive thyroid have Hashis.

It's about 90% or so of cases. But there are other causes, pituitary problems, too much or too little iodine, some medications, or sometimes they don't know. The only way to see if its autoimmune is to screen for thyroid antibodies and even then not everyone with Hashis will show high levels of antibodies. I think around 20% of Hashimotos cases don't show high antibody levels.

I had to push to get my antibodies tested and because I'm treated by injections for very low B12, its assumed I have pernicious anemia , another autoimmune condition. If you have one AI condition you often have another. As it happens mine were negative.

At the end of the day, whether it's due to autoimmune thyroid or due to your medication, the treatment is the same. Levothyroxine as a first treatment and with the NHS, most often the only one offered.

[tattybogle]

welcome Endocaro...

Hypothyroidism has a few causes. ~The majority of people become hypothyroid because of autoimmune disease (Hashimoto's) where the immune system attacks thyroid . This is usually diagnosed by raised antibodies. and is permanent.

~'Drug induced' is the other well known cause of hypothyroidism .... of which lithium is the major one .

~ Some people get post partum thyroiditis . ( thyroid goes temporarily wrong after pregnancy) this usually gets better in time , but sometimes becomes permanent .

~ Some people get viral induced thyroiditis (de quervains thyroiditis / sub acute thyroiditis / silent thyroiditis .. these are usually temporary, but occasionally become permanent.

~a few people become hypothyroid because of iodine insufficiency, but this is not common nowadays .. not here anyway . it is usually fixed by fixing the iodine deficiency.

If you used lithium and then become hypothyroid ... it is most likely to be lithium that caused it.

in a way , it doesn't matter whether autoimmune disease or lithium use caused it .. because there treatment is the same anyway. There is no 'treatment for the 'autoimmune' part of it.. you are prescribed Levo to deal with the resulting hypothyroidism ..... and there is no fix for the lithium part of it .. you are prescribed levo to deal with the resulting hypothyroidism. .

if you explain you can feel changes in your neck ( and emphasis that they are causing you problems) , GP may be able to organise an ultrasound scan of thyroid to see what size it is etc .

They won't do one just for diagnosis of hypothyroidism , they do that by blood tests , but i think they can order one if they suspect there is an enlarged thyroid or nodules on the thyroid which might be causing problems swallowing etc.

Ultrasound scans can also usually see if there is damage typical of Autoimune dsease ( hashimoto's)

GP's budget are restricted , so spending money to find the cause of the hypothyroidism (when they already have a probable reason) is not usually seen as necessary , because it doesn't affect the treatment offered.

In your case the probable reason is lithium.

When you say 'your levels have been high since october. i presume you mean your TSH levels ?

TSH (Thyroid Stimulating Hormone) is a signal from the pituitary to the thyroid asking it to produce more (or less) thyroid Hormones (T4 and T3).

When the thyroid hormones T4 or T3 become too low (hypothyroidism)... the TSH rises.

It rises to ask the thyroid to make more T4/ T3 .. but if the thyroid is unable to make enough T4/T3 , the TSH stays high and gets higher ... and if it stays over range for a few months, then Levo will be prescribed to replace the low T4... and then when the right dose is found ,,,the TSH will go down .

(** note ..it is not the high TSH that causes symptoms of hypothyroidism , it's the low T4/T3)

Finding the right dose of Levo does take several months . and TSH may not come down straight away. it is slow to move sometimes. This is why you have to wait 6 weeks for a blood test after you start Levo .

Hope this explanation is helpful in understanding what's happening to you .

It will be useful if you get hold of your actual thyroid blood test results like this ( but with numbers ) :

TSH (Thyroid Stimulating Hormone) Result [and lab range] eg. 0.0 [0.0- 0.0]

fT4 (Free T4 / thyroxine) eg 0.0 [ 0.0-0.0]

ask if antibodies were tested :

TPOab ( Thyroid Peroxidase antibodies ) eg 000 [< 00 ]

Once the GP has seen the thyroid blood test results from the lab , you are allowed to have them yourself ( but some receptionists may not know this , so don't be surprised if they give you the run around for a while .. just be calm and persistent ,They may say they need to ask the doctor's permission first,,, in which case say you'll come in a day or two to collect a printout of you latest results once they have spoken to GP)

(** They shouldn't really ask why you want them , but if they do , 'for my own records ' is the best response.)

Make sure they give you the lab ranges that come with the test results . the result are no use without the ranges .

Receptionists are used to just giving out the 'comment ' part of result ie. 'normal , or 'high '

But you want the actual results , not just the comment .

Having your results and learning how to understand what they mean for yourself can be very helpful in feeling more in control of the situation. And also it allows people here to give much better replies to your questions.

... you have come to a good place here , with people who can help you understand it all

.

What dose of Levo have you been put on and how long have you been on that dose ?

[Endocaro in reply to tattybogle]

Thank you for that information, I've been on Levothyroxine for 11 years, reduced twice recently because of high levels. I think what I don't get is what has caused the level change after 11 years, concerned that something's been overlooked . My anxiety is not helping at all

[tattybogle in reply to Endocaro]

my previously stable dose of 150mcg for 15 years went wrong shortly after menopause age about 50 . I ended up with symptoms of overmedication and slightly higher fT4 than i usually had , and had to reduce dose to 125mcg .... was then ok on that for about 3 years, then my fT4 increased again and went stupidly high over range , but i felt ok at that time ... there was a bit of messing around for a year and a half while GP reduced dose to 112.5mcg then 100mcg because fT4 kept going up even higher even on 112.5mcg...... any way i now take 112.5mcg again , and have been ok on that for a couple of years, fT4 is still a little bit over rage but not too silly anymore .

So if you're around that age and female it, could be just what happens to some of us.. for some reason we need , or use, less than we used to .

Estrogen affects thyroid hormone transport and binding, so the 'menopause explanation' has some basis in logic.

[nellie237 in reply to Endocaro]

Hi Endocaro,

I have been reducing Levo for the past 3yrs or so. I was stable on 200mcg for 6yrs, and am now down to 100mcg. I don't know why, unless it is somehow connected to a coeliac dx in 2020.🤦‍♀️ I was dx Hashi's and started Levo in 2007.