Low mood

[Familyguy1]

Hi all, I have suffered with low mood and 'grumpiness' despite having good blood levels. I have struggled with coming to terms with my diagnosis which was 4 years ago. Has anyone had this and if so, is there anything else which could be the issue if not the levels? Thanks

[greygoose]

Hi Familyguy1, welcome to the forum.

What do you call 'good levels'? Can you give us the actual numbers, please: results and ranges? Was it your doctor that told you your levels are good? They don't always understand what a good level is, so best if we can see them before making any suggestions.

[Familyguy1 in reply to greygoose]

Hi, my tsh was 1.07 miu/l, normal range 0.35 to 4.94. The doctor said this was where it should be. I didn't get any other results from the test. This was from my regular check. In 2023 it was 0.19.

[Familyguy1 in reply to Familyguy1]

Currently on 125mg of levo. It's been up and down as they were trying to find my level. When it was at 150mg I had heart palpatations so they reduced it. Also, since I've been on it I get quite a few spots on my face like a teenager. Anyone had this?

[SlowDragon Administrator in reply to Familyguy1]

Welcome to the forum

Just testing TSH is totally inadequate

Spots/acne suggests B12 issues

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS only tests TG antibodies if TPO are high

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Also VERY important to test TSH, Ft4 and Ft3 together

What is reason for your hypothyroidism

Autoimmune?

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)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Come back with new post once you get results

[greygoose in reply to Familyguy1]

Also, since I've been on it I get quite a few spots on my face

You probably have low zinc. Most hypos do. Best to get it tested.

When it was at 150mg I had heart palpatations so they reduced it.

Well, just goes to show how much they know! Palpitations are more often than not under-medication symptoms. Did they do any tests before reducing it?

[Familyguy1 in reply to greygoose]

No, they have just said to try different doses until it is correct and I just yo-yo.

[greygoose in reply to Familyguy1]

Well, that's not how it's supposed to work. You start off low and retest six weeks later and increase by 25 mcg and continue like that until you reach your sweet-spot. If you hit a problem, like your palps, you look for possible reasons, like low nutrients or cortisol. You don't just yo-yo. What's that going to achieve? It may be nothing to do with your dose. Do you know if you have Hashi's? Have you had your antibodies tested?

[Familyguy1 in reply to greygoose]

It did start like that until I was taking a too high dosage, then I've been up and down or they said take 2 days of low dose and therestofthe week highfor example. Not had antibodies tested, no. I'm looking to go private in January to find a specialist.

[SlowDragon Administrator in reply to Familyguy1]

I'm looking to go private in January to find a specialist.

Before booking any specialist

Get FULL thyroid and vitamin testing done

Work on improving low vitamin levels

Then retest thyroid and vitamin levels again in 6-8 weeks

If cause of your hypothyroidism is autoimmune, get coeliac blood test BEFORE trialing strictly gluten free diet

[elaar]

Hi Familyguy1, if possible it's worth getting private blood testing, which shows the levels of the T3/T4 hormones. The TSH level alone doesn't tell us much.

Insufficient levels of FT3/FT4 can have a knock-on effect with other hormones, such as Cortisol and indirectly Testosterone, the whole Endocrine system is very finely balanced. We often get other blood measurements done (Vitamins,Minerals, Cholesterol etc) which are involved or affected by the T4->T3 conversion process.

Being grumpy, anxious, and depressed are all symptoms of being under medicated.

[jgelliss]

Did you have labs done with vitamin D? Low vitamin D I found can be one of the causes for depression.Best Wishes for Happy days a head.

[Familyguy1 in reply to jgelliss]

I haven't, no. Hoping to go back to have blood tests for everything soon.

[SlowDragon Administrator in reply to Familyguy1]

Either see GP now and request/politely insist on further testing including vitamin D, folate, ferritin and B12 and testosterone

Or test privately

NHS rarely tests Ft3 and increasingly unusual to even get Ft4 tested

Very important to test thyroid early morning, and last dose levothyroxine 24 hours before test

Which brand levothyroxine are you taking. Do you always get same brand

Do you take levothyroxine waking or bedtime

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...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

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

examples of posts discussing private test results

Medichecks

healthunlocked.com/search/p...

Blue Horizon

healthunlocked.com/search/p...

[Familyguy1 in reply to SlowDragon]

Amazing, thanks for the info. I take in the morning when I wake up and leave a 30 min to 1 hr gap before food or anything else as stated on the med. I also have different brands depending on where I get it from or availability. Not currently taking supplements but have requested an appointment to test for vitamin levels etc based on everybody's info on here.

[Familyguy1]

Thanks everyone, it just shows how little I know. I've been going insane trying to understand what is going on and all of this is having an impact on my marrige. I didn't know there were support forums like this one either. I feel like a newbie even though I've had this for 4 years.

[SlowDragon Administrator in reply to Familyguy1]

I've been going insane trying to understand what is going on and all of this is having an impact on my marrige.

Ask your wife to read forum too, and this may help her understand how grim you are feeling

Many thyroid patients need to

1) fine tune dose of Levo

If 125mcg is too low and 150mcg too high

You might need 137mcg or even more fine tuning

Eg 137mcg 5 days and 150mcg 2 days per week

and very important to take levothyroxine everyday, on empty stomach

2) many thyroid patients need same brand Levo at every prescription

3) low vitamin levels extremely common on Levo. Important to retest at least annually and maintain at GOOD levels by supplementing (but NOT a multivitamin)

4) important to know if cause of your hypothyroidism is autoimmune

How much do you weigh in kilo

Is your weight stable

[Familyguy1 in reply to SlowDragon]

Weight is stable, I'm 82kg which is overweight for my height (around 170cm) but has not really changed in the last few years. I've tried fine tuning but it's not really worked. Found that anything above 125 brings me out in spots. 150mg gave me heart palps and I gave up with the doctor as they just kept changing the dosage eg, they suggested every other day etc but then went ba k to 125, then suggested something else and on it went without any real 'interest' I felt.

[SlowDragon Administrator in reply to Familyguy1]

So guidelines suggest around 131mcg per day for your weight

82 x 1.6mcg per kilo of your weight per day

However it’s ESSENTIAL to maintain GOOD vitamin levels otherwise we can’t convert Levo (Ft4) into active hormone (Ft3)

Absolutely essential to test TSH, Ft4 and Ft3 together.

A correctly working thyroid makes 80-90% Ft4 and 10-20% Ft3

On just Levo we frequently end up with high Ft4 and low Ft3

High Ft4 can make you feel hyper and anxious, but low Ft3 results in actually still being hypo

Low Ft3 results in lower stomach acid, poor nutrient absorption and low vitamin levels

Low vitamin levels results in worse conversion of Ft4 to Ft3 …..becomes a vicious circle downwards

Many (most?) U.K. patients have to test privately to make progress

See if GP will test vitamin levels and testosterone for you

You can then get just thyroid levels tested here cheaply, including thyroid antibodies

Randox FULL thyroid test including both thyroid antibodies just £29

Test at home or in clinic

randoxhealth.com/en-GB/at-h...

come back with new post once you get results

Meanwhile pay attention to brand of Levo

Which brands are you currently taking

Many, many people react badly to Teva brand. But for some people it’s excellent

Many, many members are finding Vencamil is best option as is lactose free and mannitol free

[humanbean]

Based on posts I've read on this forum over the years I have come to the conclusion that what causes low mood varies from person to person.

In some people it is low thyroid hormone levels (T4 and T3), in others it is strictly T3 levels, in others it can be cortisol being too low or too high, or too low a level of vitamin D, serum iron, ferritin, Vitamin B12, or folate.

In my own experience my problems were mostly related to iron and ferritin levels. (Ferritin is a measure of iron stores.) It took me nearly 2 years to raise my ferritin to mid-range which helped but wasn't the complete solution to my low mood. I had to wait for my serum iron to start rising as well, and that took several more years.

[Sleepman]

Hi Familyguy1 welcome. I have found this group amazingly insightful and kind - I am only 2 years in but my Mum suffers the same.

I have just been a bit under as I tried to get TSH to something the doctors like - I was low mood and grumpy. I apologies to my loved ones but it is not right ... It happened last Nov/Dec too. I will take @slowdragons advice and share this with them.

How long on 150 mg did you get the heart palps, it may be it would have settled after a bit and you got used to it ?

It may be that you are low on T3 which many on this forum are - T3 and T4 blood readings help.

a) gluten is often an issue for autoimmune underactive - sometimes Dairy too

Do you know if you are autoimmune type - most are.

I think theory is low stomach acid stops you getting as many nutrients out of your food I think

b) you end up doing a lot of blood tests as trend is as important as one result

Home blood tests with Christmas post likely to need to act quick.

NHS not likely to test T4 or T3. You send them in Mon or Tues so they do not sit over the weekend. I would be trying to get T3 and T4 readings as quick as you can. Monitor my health are NHS lab which are lower end of costs and pretty quick.

Folate tests are very difficult at home. Walk in test with lots of bloods might be a good option to see what is low on Ferritin, Folate Vit D and B12. Medichecks seems popular - not used as too far away from me.

The wise ones have found if you test about 09:00 fasting then you get more reliable consistent results. If taking B7/biotin in high doses stop some days before as it distorts the results. There are priority NHS post boxes if you do at home.

My cholesterol and prediabetes got a bit worse while running lower thyroid levels too.

Good luck.

[CallMeSunny]

Hi Familyguy1. FYI…check out Lola for blood tests. They are very well priced, the price includes a phlebotomist to your house for blood draw (best before 9am Monday or Tuesday …to reach labs well before weekend…nil by mouth except water…and plenty of that to help blood flow). Their results are prompt, extremely easy to understand, you’re kept in touch with any updates/progress by email plus you receive a full report by a doctor. When you have your results, post them here along with the ranges. Best of luck….I felt very sad when you mentioned the affect on your marriage. Hopefully all the expert help on this forum will help improve matters!