My daughter of 27yrs with a learning disability has been going through major mood swings and depression for the last 18 months. She can’t sleep and is constantly crying and repeating herself. I managed to get an appointment with our local mental health and she had 2 appointments with a psychiatrist who said she looked clean and tidy and didn’t need any meds. I questioned his report as it read so badly and complained to the psy-heads and asked if this was some kind of joke. Basically, my daughter in their view does not need any mental help support. Well I’ve tried to get her involved with lots of activities but nothing seems to help her focus. I am now looking at her thyroid meds - she takes T4 75mcg per day of Levothyroxine sodium capsules specially made up by Martindale and takes T3 10mcg twice a day lactose and sugar free. I need to speak to Martindale re fillers and check with our GP for advice/help. Not sure where else to focus.
Is thyroid meds causing mental problems - Thyroid UK
Is thyroid meds causing mental problems
What are her most recent
For full Thyroid evaluation she needs TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Does she take any vitamin supplements?
Also both TPO and TG thyroid antibodies tested at least once to see if her hypothyroidism is autoimmune
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
ideally day before split T3 as 10mcg waking, 5mcg mid afternoon and 5mcg at 8pm assuming test 8am following morning
On T3 …..it’s ESSENTIAL to test Ft4 and Ft3
had bloods done May 2022 normally taken once a year but with Covid and NHS strkes things have deteriorated. Bloods then: THS 0.2
Vit D 96
FT4 13.0
FT3 7.5
Cortisol 125
Ferritin 12.1
Sodium 138
Endo registrar was told of her mental state. This was his report: Had a discussion with parent then discussed with Endo Dr - explained TFT suppressed TSH, slightly high TF3, TF4 normal, might need to reduce TF3 but before that we need to repeat TFT again before changes. Patient’s cortisol levels were slightly low which could be physiological. To rule out adrenal insufficiency, needs to be booked in for Short Synacthen Test.
Taking these Vitamins: D, C, omega 3, zinc, Primrose capsules
Thanks again
The FT3 dose appears to be too high at the time of the test and AI needs to be ruled out if it hasn’t been already.
She does have Hashi’s but I’ll have her iron levels done next week.
So very helpful thank you
You need to add the ranges on these results
Ft3 looks over range/too high ……but depends on when she took last dose of T3 before test and wether it was split dose
Assuming Ft3 range 3.1-6.8
If for example she too 10mcg 2-3 hours before test you would expect Ft3 result to be a bit high and probably not an issue
If she took last 5mcg dose 8-12 hours before test….then dose T3 might/probably be too high
Vitamin levels
Vitamin D - good
No B12 or folate
The main thing that stands out is the severe ferritin deficiency
Ferritin 12.1
cks.nice.org.uk/topics/anae...
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
What was done after these results
She should have had full iron panel test for anaemia
INSIST on vitamin retesting NOW including full iron panel for anaemia
May 2022
THS 0.2
FT4 13.0
FT3 7.5
If range on Ft4 is 12-22 and last dose Levo 24 hours before test ….
Then probably Levo dose a little low …..many people on levothyroxine plus small doses of T3 find they need Ft4 and Ft3 at least 50-60% through range
Obviously this test far too old to be relevant
Come back with new post once you get new thyroid and vitamin test results
I’ll have her iron levels checked next week. Thank you again so very very helpful.
Very very poor care from GP if this wasn’t investigated at time of results
Your daughter’s ferritin is low, regardless of the range for that particular test.
My own personal experience with my own daughter - who at this point has no other identified or diagnosed issues although we are vigilant in monitoring- treating her low ferritin has so far appeared to address the feelings of “derealization” , as well as a few others on the list.
My daughter used to say “nothing seems real, I feel like I’m not even here.” Until I saw this symptom chart I didn’t even know “derealization “ was a thing.
As I like to point out, our symptoms could be down to so many different causes.
But I do encourage a full iron panel for anyone with low ferritin as its sure to be causes or making symptoms worse.
Ps. You can’t just treat low ferritin. You must get a full iron panel before to avoid iron toxicity that can result in permanent irreversible organ damage.
Thank you FIR
Bless her she has said some spaced-out things and I thought she was pre-menopause, but blood test was nagative. I’ll get something in progress next week.
Very much appreciate your advice and information. Hope your daughter is in a better place.
GP must retest iron and ferritin
Never supplement iron without doing full iron panel test for anaemia first
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Medichecks iron panel test
medichecks.com/products/iro...
Look at increasing iron rich foods in diet
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/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
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...
Posts discussing Three Arrows as very effective supplement
Great replies from @FallingInReverse
re ferritin and Three arrows
healthunlocked.com/thyroidu......
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Iron patches
healthunlocked.com/thyroidu...
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Good iron but low ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Shellfish and Mussels are excellent source of iron
healthline.com/nutrition/he...
Iron deficiency without anaemia
healthunlocked.com/thyroidu...
Ferritin over 100 to alleviate symptoms
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Great research article discussing similar…..ferritin over 100 often necessary
ncbi.nlm.nih.gov/pmc/articl...
Low Iron implicated in hypothyroidism
healthunlocked.com/thyroidu...
Really interesting talk on YouTube, link in reply by Humanbean discussing both iron deficiency and towards end how inflammation can also be an issue
healthunlocked.com/thyroidu...
Inflammation affecting ferritin
healthunlocked.com/thyroidu...
Updated reference ranges for top of ferritin range depending upon age
healthunlocked.com/thyroidu...
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264l
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
thank you for this SlowDragon. Basically, the health professionals don’t haven a clue
Your daughter is entitled to mental health support. There are specialist disability mental health teams in most local authorities. Find out if yours has one. They pointed out she was ‘clean and tidy’ with no regard for her mental state. Wow what a shocking disregard for her.
Hi anje-blue
I have a daughter with a learning disability aswell (43). She does not take levothyroxine.
I do (150mg) and do not have any mood swings.
My daughter has mood swings which goes with the territory as you know. I think you may have to look elsewhere for depressive traits. Maybe?
We have carer support through direct payments. This enables her to be constantly engaged in what SHE likes to do. Whether that be TV (Gold Channel!), and visiting cafe's, drawing and colouring etc, collecting envelopes etc, craft work etc. She is able to mix with other people apart from ourselves. As you know its trial an error and a lot of patience. Any local learning disability groups?
We avoid as much medication as we can as each one is likely to have a side effect as you know.
I do recall things being more difficult when our daughter was in her 20's. My daughter used to repeat herself. It was caused mainly through anxiety, which is part of the territory as you know. She worries significantly more than us, and we are well aware of that.
We try to minimise the anxiety as much as we can but we know we cannot eliminate it. We have used dummy inhalers to control the breathing and relax her in the past.
Good luck. Your not alone with these type of issues.
Very informative SS.
My daughter actually has Down syndrome, so I expected our borough MH services to provide someone with that experience, but instead my daughter was seen by the same inadequate psychiatrist twice.
She doesn’t want to join any activities and there are plenty to choose from where we are. She doesn’t like the TV anymore and has problems with loud noises. So right now I’m going to have her iron levels checked as she also has an AI condition ‘Hashi’s’. I need to get her into a more stable condition so she is not overthinking and worrying so much.
Yes the Social service support these days is zero. Well it is in Cornwall. They do not have skilled and qualified staff on any level. Very frustrating I know.
My wife is a Mental health counsellor. This does come in useful for her skills. When I get a chance I'll ask her for more information. I just work at a simple level ! I think there are specialist mental health counsellors out there for 'down syndrome'. Psychiatrist sounds a bit heavy duty to me, but I'm no expert.
We have to fund private support these days for specialist services in the absence of any support. I have to raid my bank sometimes ! It is what it is I guess.
My daughter had a phase a few years ago of listening to classical music. so not loud music.
Interesting on the iron levels. I have low hemoglobin which is hereditary. It improved when I increased Thyroid level from 125 to 150 and was much less tired. It did make me grumpy when iron levels were very low. I accept their is no direct correlation but low Thyroid dose did slow everything down.
Just another pointer. I do have on line results from the GP now. So can see the detail and monitor much more closely.
It seems there is only one team in my borough covering all mental health problems and I did request at the time for a psychiatrist who had experience with my daughter’s learning disability, but I got a trainee who was clueless and my daughter is still mentally unwell. I am now looking at my daughter’s iron levels to see if it could be an iron deficiency. My GP should be calling me today.
Can I suggest seeing a therapist or a psychologist with specialism in learning disabilities…they maybe able to feed back to psychiatrist if they think anything else is causing a problem or explain to you what measures you can do to cope also .
This is only my opinion but from what heard psychiatrist have little therapeutic training in comparison to psychologist and therapists and are Psychiatrists are medically trained to diagnose and medicate conditions alongside other therapies, although there’s also specialist qualifications for others to give out medication to, but unfortunately psychiatrists are the hierarchy 🙄 and usually the ones to have more say!
Hope you get some help😊
I actually did ask if my daughter could have CBT but the team were overstretched. My daughter is having more bloods to check her iron level so I’ll see how it goes from there. My GP told me today we live in London and there should be help out there.. I certainly won’t be giving up, she my GP will have to help my daughter.🙏
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