Depression : Hello, I'm looking for some advice... - Thyroid UK

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Depression

Liam12 profile image
25 Replies

Hello, I'm looking for some advice please as I'm struggling with severe depression and anxiety and I don't understand why. I was thinking perimenopause as I'm 48, I recently had my hormone levels checked with medichecks inc. thyroid levels (TT 5 years ago) I'm currently on 100mg thyroxine daily.

TSH is 4.97 (range 0.27 - 4.2)

Free T3 is 2.99 (range 3.1 - 6.8)

Free thyroxine 17.2 (12 - 22)

I'm very tired, muscle tension in shoulders, neck and upper arms, headaches, pins and needles and stiff aching fingers. I can cope with all this but the awful pit of depression I feel is crushing. I can't stop crying. Can someone tell me if this could be because of my thyroid levels? My GP isn't very knowledgeable and wants to increase my anti depressants

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Liam12
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Lalatoot profile image
Lalatoot

I am sorry you are going through this. Your symptoms could be caused by being on too low a dose of levothyroxine.When on levo TSH should be under 2 and around 1. NICE guidelines state this so the GP can look it up.

Low FT3 can cause a lot of hypo symptoms and yours is under range.

I think you need an increase in levo.

Please also get vitamin b12, vit d, ferritin and folate levels tested as hypo folks tend to be low on those.

You are not alone in your search for better health - you will get lots of help and advice on here.

shaws profile image
shawsAdministrator

First of all, I am really sorry that you had to have your thyroid gland removed.

It's bad enough even if the hypo person still has their thyroid gland.

Request GP to increase your levothyroxine. Also ask GP to prescribe some T3 to add to your T4 as yours is below the bottom of the range. He should aim for it to be towards the top.

You are on an insufficient dose of thyroid hormones and levothyroxine (T4) is supposed to convert to T3 - the Active thyroid hormone and we have T3 receptor cells throughout our body and brain and heart have the most.

Request a T4/T3 combination.

Tell GP you are a member of Healthunlocked Thyroiduk and the aim is to bring down TSH to around 1 or lower with both FT3 and FT4 towards the top of the ranges.

Ask GP to check Vitamin D, B12, iron, ferritin and folate at your next test.

Do you follow this procedure when having a blood test for thyroid hormones? Always get the earliest possible appointment - even if made weeks ahead. It is a fasting test (you can drink water) and don't take thyroid hormones before the test but afterwards. Take hormones with one glass of water and wait an hour before you eat.

SlowDragon profile image
SlowDragonAdministrator

On levothyroxine TSH should ALWAYS be below 2

Make an appointment with GP and request/insist on 25mcg dose increase in levothyroxine up to 125mcg daily

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Many people find different brands are not interchangeable

Was this test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test?

When adequately treated on just levothyroxine Ft4 should be at least 70% through range and most importantly Ft3 at least 50% through range

Request GP test vitamin D, folate, ferritin and B12

Low vitamin levels are EXTREMELY common, especially when under medicated

Optimal vitamin levels are

Vitamin D at least around 80nmol and around 100nmol maybe better

Serum B12 at least over 500

Folate and ferritin at least half way through range

Getting vitamins tested and improving by supplements to optimal can help increase Ft3 levels

What was reason for thyroidectomy?

Liam12 profile image
Liam12 in reply to SlowDragon

Oh my gosh, Thankyou all so much. Your advice has given me hope. I will request a GP appointment in the morning and ask for an extra 25 mg plus T3. I don't get my vitamin levels checked usually. My chemist gives me different brands of thyroxine, I'm currently taking a brand by mercury pharma. Also I didn't know i was meant to fast before tests. I've had more advice here already than I get from my GP and oncologist.I had my thyroid removed as I had follicular papillary cancer.

SlowDragon profile image
SlowDragonAdministrator in reply to Liam12

Work out which brand levothyroxine suits you best and always get same brand

Many people find Levothyroxine brands are not interchangeable.

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

But for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, or Aristo (100mcg only) are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord only make 50mcg and 100mcg tablets

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

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.

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

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)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Liam12 profile image
Liam12 in reply to SlowDragon

Thankyou for this! I really appreciate it

SlowDragon profile image
SlowDragonAdministrator in reply to Liam12

Request GP test vitamin levels….or test privately

Come back with new post once you get results after 6-8 weeks on increased dose levothyroxine

If Ft3 is still low …you may have room for further increase in levothyroxine

Or you may need addition of T3 prescribed alongside levothyroxine

There are two specialists who can initially prescribe T3

Endocrinologist

Or

Psychiatrist

Psychiatrist can prescribe T3 for antidepressant resistant depression

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3 if you need it

tukadmin@thyroiduk.org

Meanwhile read posts on here daily

Learn how essential it is to

Fine tune levothyroxine dose

Always get same brand

Regularly retest vitamin levels and maintain optimal levels

You might benefit from strictly gluten free diet ……always worth trying…but get coeliac blood test done before considering cutting gluten out

SlowDragon profile image
SlowDragonAdministrator in reply to Liam12

GP can’t initiate prescribing T3 (liothyronine)

You’re not ready for that anyway

Getting next dose increase in levothyroxine is first step

Bloods should be retested 6-8 weeks later

If Ft3 remains low once dose levothyroxine is fine tuned and all four vitamins optimal

Then Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

tukadmin@thyroiduk.org

Buddy195 profile image
Buddy195Administrator

Hi Donna,When I had a look at your previous posts from a couple of years ago, you were on a slightly higher dose of Levothyroxine. Was there a reason this was reduced?

I definitely think your depression and physical symptoms are related to your thyroid. Your thyroid medication and key vitamins need to be optimal. I have experienced all the symptoms you outline when I’ve been under medicated.

As Lalatoot suggests, an increase in Levothyroxine is needed in the first instance, After this, you may need to look to adding some Liothyronine to further raise your Ft3. For me, like many others on this forum, I needed combination therapy (Levo and Lio) to ‘feel well’ and get my Ft3 higher in the range.

When did you last see an endocrinologist? Like GPS, some are more knowledgeable & enlightened than others.

Remember that forum members are here to help and support; so do keep posting!

Liam12 profile image
Liam12 in reply to Buddy195

Thankyou Buddy195, i see my oncologist every 6 months , he must have told me to decrease the thyroxine going on blood tests, Im usually a nervous wreck when I see him and dont generally ask questions. Ridiculous really. So do most people stay on one continuous dose?

Buddy195 profile image
Buddy195Administrator in reply to Liam12

Hi Donna,

Always ask for a print out of your results and post on the forum for advice and comments. Definitely don’t accept any reductions in Levo, as you are currently undermedicated. Many members do stay on a continuous dose of Levo for a long time, if their thyroid blood tests remain optimal, whereas others need to tweak doses upwards or downwards to achieve this. I seem to be in the latter camp at the moment, as my levels are fluctuating/ slightly over range.

If your GP is unsupportive of T3/T4 combination treatment (after you’ve tried an increase in Levo first, rechecked levels and posted results on the forum ), I would try to see an endocrinologist supportive of T3 privately if you are able (TUK have a list of patient recommendations that can be requested). I took the private route and (thankfully) my GP followed the endos advice and prescribed T3 on the NHS.

Do keep posting…. We are here to support each other in achieving better health & wellbeing.

HashiFedUp profile image
HashiFedUp

I know exactly how you feel. Went through something similar before diagnosis. And you have my sincere sympathies. Your TSH is way too high. Ideally for thyroid patients, it should be below 1.0. I need mine to be below 0.6 to feel anything like well. If your gp has no knowledge how to manage your condition i would find another.

General tips on fighting depression: you have to eat super healthy no processed or junk food. Exercise and make sure you get eight hours sleep. Very important. Maybe ask for a referral to an endo or even go private. I see my private endo about two three times a year at £100 a time so it’s affordable. Take care and come back to us with progress. You won’t feel depressed forever. It will pass. Give yourself time and ease any pressure as best you can x

CaroMaxx profile image
CaroMaxx

Sorry you’re feeling the way you do

I’m not an expert, just a fellow sufferer but I could have written your post myself. I’m 47, 48 in November and had my little boy late so struggling with all that you wrote and still having to manage a 4 1/2 year old with Autism. It’s the depression that I worry about the most… I have moments of light relief when I take large doses of Vit D3 and Vit B complex. I use the BetterYou sprays. The ache in your fingers sounds very much like Vit D deficiency. For pain relief I take turmeric capsules. I have days that feel a bit better but sorry to say it’s always short lived. I saw a kinesiologist who said it’s the drop in progesterone and over production of oestrogen that’s causing a lot of these symptoms. How to get a GP to be interested and proactive to support us, I haven’t yet worked out. Mine just offered counselling, antidepressants or a conversation about HRT

If your GP is not allowed to prescribe T3 because of cost you can buy it yourself and use a private testing service to check your TSH, FT4 and FT3 levels. I used one this month and it cost less than £30 with a discount code from this forum.

My negative thoughts at night are helped by taking the T4 last thing and then T3 during the night. I also keep a date by my bedside. If my mind's on a negative spiral I take the date and within about twenty minutes my body relaxes and I sleep soundly. I assume it's a sugar level low. Good ground coffee generally helps my mood but of course it doesn't help to drink it later in the day.

I like to think of our bodies as finely tuned racing cars, highly strung race horses or complicated watch mechanisms. So a 'one size fits all' medical approach doesn't work for all of us.

If your depression is caused in part by other factors then balancing your hormones may not provide a complete cure but is an important part of the jigsaw.

pennyannie profile image
pennyannie

Hello Liam :

A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.

T4 is inert and needs to be converted by your body into T3 the active hormone that runs every part of your body, including your physical, emotional, mental, and spiritual well being, and makes ' you ' who you are.

T3 is said to be around 4 times more powerful than T4 with the average person needing to convert / find around 50 T3 daily just to function without the disabling symptoms of hypothyroidism creeping up and swallowing them up.

Your TSH needs to be down to under around 1 and currently shouting out for more thyroid hormones.

Your T4 is just around 52% through the range and we generally feel better when this is uo in, towards, the top quadrant :

Your T3 is not even in the range and why you are so poorly - it is low T3 that causes all the symptoms you are currently dealing with.

No thyroid hormone works well until your core strength vitamins and minerals especially those of ferritin, folate, B12 and vitamin D are up and maintained at optimal so this is an area that also likely needs to b addressed.

Some people can get by on T4 only :

Some people need to have added back in that little bit of T3 that they " lost " when having had a TT - making a T3/T4 combo : and you will need a referral to endocrinology to have a trial of T3 - Liothyronine run along side your T4 Levothyroxine :

Some people can't tolerate T4 and need to take T3 only :

Some people feel at their best taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland.

I too do not have a thyroid any longer, though I'm with Graves Disease post RAI thyroid ablation, and I can totally sympathize with your situation and had severe cognitive impairment and prescribed anti depressants which did absolutely nothing and just masked the ever decreasing circle of wellness I had fallen into.

Start reading up, and I know this is difficult, but it does all make sense eventually :

First and foremost you need to start building up your dose of T4 - Levothyroxine, ask for a referral to endocrinology and ask your doctor to run blood tests on your ferritin, folate, B12 and vitamin D .

If s/he can't do this there are private companies listed on the Thyroid UK website who can and are the charity who support this forum and where you can read up further on all things thyroid.

Then start a new post with the results and ranges and you will be talked through all that you need to do to regain " yourself " and take your steps back to better health.

Shazy-B profile image
Shazy-B

Hi 👋🏼 Are you taking your Levo on an empty stomach, ideally first thing of a morning at least an hour (preferably 2) before you drink or eat anything? Even milk in tea/coffee can interfere with absorption. Always stick with the same brand. I take Accord but I know they don’t do 25’s so you may need to alternate between 100 & 150 every other day. Get your folate checked as deficiency can add to mental health issues, dizziness, air hunger.

Also have you considered HRT? You can still take it even if peri. I would recommend a patch as there are much less risks associated and no problems interfering with Levo when not in tablet form.

Are you taking any other meds/supplements? You should leave at least 4 hours after taking Levo before taking anything else….even vitamins!

Also consider some self help regarding the anxiety, once you understand what’s happening in your brain/mind you can definitely get it under control. There is an app called ‘Dare’ that is brilliant.

Hope this helps…I’ve been exactly where you are, the anxiety is crippling but you can get it under control I promise ☺️

Cornwaller profile image
Cornwaller

Hi, in addition to the advice you've been given I would suggest a b12 test (plus folate D etc as detailed above) asap. Your symptoms are consistent with B12 deficiency: see B12d.org for symptom diagnosis. Don’t supplement before testing. See the b12d.org and Health unlocked for interpretation of the results in conjunction with your symptoms and then work out a way forward as appropriate. Good luck.

Sboop profile image
Sboop

I found that when I went through similar issues when first diagnosed with Hashimotos, Magnesium changed everything for the better.

Liam12 profile image
Liam12

Thankyou all so much for taking time to reply to me. I'm currently trying to get my GP to increase my thyroxine to 125mg. Spoke to him this morning he said he'd need to check a colleague and call me straight back. This was hours ago. Currently trying to call the surgery. If he won't prescribe I'll have to quarter a 100mg tablet. Not ideal but feeling so poorly. I've slept all afternoon, it's such a waste of a lovely day but I can't function

Berry007 profile image
Berry007

Hi, I had the exact same going on, it was so bad and then my legs started cramping up, was on 100 eltroxin, docs did bloods and found b12 deficiency (Pernicious Anemia) which unfortunately is common with in who have Hashimoto’s thyroiditis/hypothyroidism etcI now need injections for life, if you’re getting bloods done make sure you’re not taking any b12 supplements for 4 months or energy drinks etc… as this can skew the results, ask them to check for b12 deficiency… antibodies for intrinsic factor and parietal cells, mine were positive for Parietal Cells, my pins n needles were gone after the loading injections of b12 (5 injection if in ireland over 2 weeks) then it’s one every 2 or 3 months depending on symptoms, very best of luck to you, definitely sounds like this

Liam12 profile image
Liam12

Thankyou all. No joy with the GP, he wants me to wait 2 weeks then have more blood tests and then he may consider upping my dose. I've decided to go private as recommended. Will need to get my head round the info you've all given me, I'll make a list of all the tests I need and make sure I get them. I'm blown away by the help you've offered me thank you so much.

Lulu2607 profile image
Lulu2607 in reply to Liam12

Hi Liam12. I can't think why your GP refuses a dose increase given your current results? As Lalatoot said at the start of the replies, NICE guidance is to get TSH under 2.5 and T4 near top of range when a patient is on levothyroxine treatment. It was the clinical pharmacist at the surgery that told me that. I think sometimes they can be better than GPs when it comes to drug treatments. Good luck. You will feel better when you are properly medicated but it will take time for it to have the full effect.

SlowDragon profile image
SlowDragonAdministrator

Make another appointment

Request/insist on having vitamin D, folate, ferritin and B12 levels tested

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Persevere - have all guidelines printed and be ready to quote them

healthunlocked.com/thyroidu...

If GP won’t test use Medichecks or Blue horizon

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

List of private testing options and money off codes

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...

Only test early Monday or Tuesday morning

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Or pay extra for private blood draw at near to you clinic

Are you currently taking any other medications or supplements

This must be well away from taking levothyroxine

Oatcake profile image
Oatcake

As you have had thyroid cancer you may find this link useful regarding TSH levels.

thyca.org/pap-fol/more/tsh-...

klr31 profile image
klr31

Yes, it might well be. You sound to me like you need an increased dose of thyroxine, along with checks of your B12, D, ferritin and folate.

Karen

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