What’s at the root of this awful anxiety? - Thyroid UK

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What’s at the root of this awful anxiety?

Staffsgirl profile image
50 Replies

I am experiencing intense anxiety, alongside insomnia. Last year, after a few months on T3, I eventually felt really well: best I’d felt for many years. Earlier this year the T3 was changed from Morningside tablets to Roma capsules. Slowly I went downhill. After a couple of months I had the T3 tablets reinstated, and at an increased dose: 15mcg, split 10mcg at 6am and 5mcg at 5pm. Levo is 50mcg at 6am.

I don’t know whether this is simple anxiety, whether it’s caused by thyroid, or else is it atrial fibrillation, (diagnosed 5 years ago)? Feel constantly shaky. Am functioning, but only just. Take anticoagulant but no other meds for AF. (I should add that there have been a lot of inevitable life stresses in the last months. Have lost appetite, and lost a few pounds, but was never overweight.)

Any thoughts would be most welcome. I am mid seventies, and have never felt these awful anxiety-like symptoms before. I’ve dealt with many life stresses in the past without suffering these current symptoms. Having AF alongside Hashi makes the whole meds picture confusing of course.

Results May23 Feeling unwell

TSH: 2.3 (0.38-5.33) 38.79%

T4: 11.8 (7.90-14.40) 60.00%

T3: 4.4 (3.80-6.00) 27.27%

B12/: 308 (133.0-675.00)

Ferritin: 35 (11.00-306.80) ….am addressing this.

Folate: 16.6 (3.10-19.90)

Vit D: not done

Recent results. Feeling worse still

TSH:1.1 (0.38-5.33) 14.55%

T4: 9.8 (7.90-14.40) 29.23%

T3: 5 (3.80-6.00) 54.55%

B12: 356 (133-675)

Ferritin: 42 (11.00-306.80) ….still working on this

Folate: 17. (3.10-19.90)

Vit D:126.1 (50.00-150.00)

Any thoughts you wise folk?

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Staffsgirl
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50 Replies
SlowDragon profile image
SlowDragonAdministrator

You’re likely under medicated

Most people when adequately treated will have Ft4 and Ft3 around 60-70% through range

Suggest you increase levothyroxine by 25mcg per day to 75mcg per day

Do you always get same brand levothyroxine at each prescription

B12 is too low

What vitamin supplements are you taking

Ferritin still poor

Try splitting the T3 as 3 doses of 5mcg

Try Dose waking, mid afternoon and bedtime

Staffsgirl profile image
Staffsgirl in reply toSlowDragon

Thanks. Yes same brand. Taking Vit D, Magnesium. Selenium, Coenzyme Q10, B Complex, B12 sublingual. Will try splitting into three doses. Surprised you say B12 too low. What do you suggest? Suspect my gut isn’t absorbing adequately.

The increase in T3 (and change back )was 10 weeks ago, so had been expecting to begin to feel better instead of worse by now.

SlowDragon profile image
SlowDragonAdministrator in reply toStaffsgirl

T3 doesn’t last long in blood

Many people find it better to split as 3 doses roughly 8 hours apart…..especially early on

B12 is recommended to be over 500

Which B12 are you taking and which vitamin B complex

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

Vitamin levels should improve as you get thyroid levels better maintained

Staffsgirl profile image
Staffsgirl in reply toSlowDragon

Taking Cytoplan B12 and Cytoplan B Complex. Previously took Thorne B Complex recommended here (by you I think.) I take after breakfast anyway. Might need to change back to Thorne. Many thanks.

Staffsgirl profile image
Staffsgirl in reply toSlowDragon

Would you recommend alternating days with 50 µg and 100 µg? What is it better to have 75 each day?

SlowDragon profile image
SlowDragonAdministrator in reply toStaffsgirl

Personally I would want 75mcg daily

Cut 50mcg in half with pill cutter or sharp craft scalpel

Save spare half in weekly pill dispenser

Staffsgirl profile image
Staffsgirl in reply toSlowDragon

Ok, thanks.

Buddy195 profile image
Buddy195Administrator

I experienced a massive spike in anxiety when my T3 prescription was changed from Morningside to Roma, so I now have ‘Morningside only’ on my prescription. Many surgeries are requesting the change as Roma is a cheaper option. I would contact your GP and asked to be swapped back. My anxiety also increases when my thyroid medication is not optimal.

As Slowdragon has highlighted, it’s likely you will also need an increase in dose. I’d make one change at one though; first change back to Morningside and then look to increase thyroid medication.

Staffsgirl profile image
Staffsgirl in reply toBuddy195

Yes…I did this, and have been back on Morningside now for over ten weeks. (The problem is that I feel even worse now. )

I have Morningside on my prescription. Interesting that you too had a bad experience with Roma: I realise it was a cost saving reason. I took advice from HU at the time and split the Morningside 20 size, thereby saving the NHS even more money!

SlowDragon profile image
SlowDragonAdministrator in reply toStaffsgirl

How much levothyroxine were you taking BEFORE adding T3

Approximately how much do you weigh in kilo

Staffsgirl profile image
Staffsgirl in reply toSlowDragon

65 kg

75mcg levo

BMI 21.4

SlowDragon profile image
SlowDragonAdministrator in reply toStaffsgirl

So what were you prescribed bed

5mcg tablets?

Would definitely try cutting 20mcg into 4 x 5mcg

Taking as 5mcg roughly at equal 8 hour intervals

That’s likely too long between 5pm and 6am with just 5mcg

Staffsgirl profile image
Staffsgirl in reply toSlowDragon

I do cut into 5 mcg.

SlowDragon profile image
SlowDragonAdministrator

so you were never on high enough Levo

1.6mcg x 65kilo = 104mcg per day

104mcg x 7 days = 728mcg

So 100mcg 6 days per week and 125mcg once week likely daily dose of JUST levothyroxine required

Adding T3 …..Levothyroxine is usually reduced by 25mcg when adding 2 x 5mcg or 3 x 5mcg T3

Staffsgirl profile image
Staffsgirl in reply toSlowDragon

Prior to 75 µg dose, had been on 100 µg, but that had been reduced because T4 was well over a range, and I have AF. I was then on 75 µg for sometime.

Levo was reduced by 25 µg to 50 when I was initially started on 10 µg of lio.

The existence of AF really seems to complicate matters.

SlowDragon profile image
SlowDragonAdministrator in reply toStaffsgirl

Prior to 75 µg dose, had been on 100 µg, but that had been reduced because T4 was well over a range,

but what was Ft3 result

Very common to have poor conversion of Ft4 to Ft3…..especially if vitamin levels are low

What was Ft4 and Ft3 results and ranges on 75mcg BEFORE adding T3

You quite possibly didn’t need to reduce dose levothyroxine at all

Staffsgirl profile image
Staffsgirl in reply toSlowDragon

Prior to adding T3

T3 had been: 3.7 (3.80-6.00)

T4: 17.9 (7.90-14.40)

Had done DIO2 test and have the heterozygous polymorphism. Had had very elevated cholesterol for years, which improved greatly when T3 added.

Also have gut issues which will affect uptake of nutrients.

SlowDragon profile image
SlowDragonAdministrator in reply toStaffsgirl

Do you always test as recommended …..early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

On T3 day before test always split T3 as 3 doses spread through the day with last dose 8-12 hours before test

Staffsgirl profile image
Staffsgirl in reply toSlowDragon

Yes…always

SlowDragon profile image
SlowDragonAdministrator in reply toStaffsgirl

Prior to 75 µg dose, had been on 100 µg, but that had been reduced because T4 was well over a range

was test done correctly

With poor vitamin levels you would have had poor conversion of Ft4 to Ft3

Were Ft4 and Ft3 tested together when on just 100mcg levothyroxine

Staffsgirl profile image
Staffsgirl in reply toSlowDragon

Yes test was as protocol. Vitamins had been fine. And yes to last question.

Staffsgirl profile image
Staffsgirl in reply toSlowDragon

Looking again at this thread: you think I was never on a high enough dose of T4, but when on 100 mcg I was well over range and feeling unwell. It’s all so puzzling! Could you enlighten me with regard to this please?

AF bad.

( Feeling considerably worse and not sure what to do.)

SlowDragon profile image
SlowDragonAdministrator in reply toStaffsgirl

You need FULL Thyroid and vitamin testing 6-8 weeks after any dose change or brand change in levothyroxine or T3

Test early morning, just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

Day before test split T3 as 2 or 3 smaller doses spread across the day with last dose 8-12 hours before test

Stop any supplements that contain biotin 5 days before test

Staffsgirl profile image
Staffsgirl in reply toSlowDragon

I did this before my latest test as posted on the thread

SlowDragon profile image
SlowDragonAdministrator in reply toStaffsgirl

So have you now increased Levo by 12.5mcg daily

Are you taking daily B12 and daily B complex

Staffsgirl profile image
Staffsgirl in reply toSlowDragon

Yes to all

TiggerMe profile image
TiggerMeAmbassador

Sounds like you have had a similar year to mine... started well, they interfered, felt awful, gave us back what we needed and the crawl back up is harder the second time...

I've ended up with my T4 back where it was before adding T3 and that is back to the level before they interfered though I stuck with the Roma, I'd got the important Vits & Mins in a good place but still had the judders which turns out to be my adrenals reeling from having to cope with underdosing... cortisol levels dropped even lower than they had been at the beginning of the year, supporting them has gotten rid of the judders 🤗

A year ago you posted some pretty low cortisol result which have likely taken another hit, are you feeding you adrenals with Vit C and salt? Or even better an adrenal cocktail 🍹

Staffsgirl profile image
Staffsgirl in reply toTiggerMe

Yes…low cortisol some time ago, and have been mostly continuing with adrenal cocktails. Thanks for the reminder. Are you still taking T3?

TiggerMe profile image
TiggerMeAmbassador in reply toStaffsgirl

Yes, I battled on with Roma and found that if I take it in one dose (15mcg) it seems to work rather better than splitting, I think I felt most tragic when my fT4 had dropped below 25% so once this improved the Roma seemed to settle in, I take it when my cortisol level is as good as it gets first thing in the morning, this help get the T3 to the cells

janeroar profile image
janeroar in reply toTiggerMe

What’s the adrenal cocktail 🍹?!

TiggerMe profile image
TiggerMeAmbassador in reply tojaneroar

It's a rather pleasant mix of orange juice (Vit C) salt and potassium (cream of tartar) which is food for your adrenals... there are more exotic mixtures 🍹

janeroar profile image
janeroar in reply toTiggerMe

Ooh sounds interesting. So cream of tartar contains potassium? Didn’t know that!

helvella profile image
helvellaAdministrator in reply tojaneroar

More information here:

en.wikipedia.org/wiki/Potas...

janeroar profile image
janeroar in reply tohelvella

Thanks helvella !

waveylines profile image
waveylines

My low B12 really affected me badly. I ended up on b12 jabs, despite taking a very high dose B12 supplements, sublingual . I also had a lot of neurological symptoms. B12d. org has a symptom checker. This made a huge difference and my shakiness stopped. In addition you are low in range with your Ft4. I agree with Slow dragon that needs an increase.

I have P-Afib too.

I assume your GP has checked for PA with Intrinsic Factor blood test (only picks up 50%.)? Positive is reliable negative doesn't mean you don't have it.

Doctors are more cautious with thyroid meds when you are diagnosed with Afib. Unfortunately under treating doesn't help!! Lol....

Staffsgirl profile image
Staffsgirl in reply towaveylines

Thanks for your comments.

I realise the caution with AF.

For many years now Ive queried B12, but Dr never seems interested, (nor did neurologist.)

PA checked.

There must be many of us on here who also have AF! It certainly complicates matters doesn’t it?

SilverSavvy profile image
SilverSavvy in reply toStaffsgirl

Slow Dragon's advice bang on I reckon. I've been titrating up on Levo for two years now and I always get anxiety and insomnia when the dose stops working after a few months and I'm undermedicated. I also have problems with B12 and have PA in the family so use methylated versions of B Complex vits and that helps.

Optimising vitamins and having the correct dose removes the anxiety and helps me become functional. Though too much B12 also causes me problems with anxiety so it's a fine line.....still working on where that is for me. But Slow Dragon's advice is brill so listen to her not me. :)

Staffsgirl profile image
Staffsgirl in reply toSilverSavvy

Thanks SilverSavvy…your comments much appreciated.

waveylines profile image
waveylines in reply toStaffsgirl

Yes it all adds to the fun for sure!! I felt very ill when my B12 dropped to 235 but doctor wouldnt prescribe b12. Referred me to neurologist. I started jabs while I waited. & told her I would. (7 month wait for neuro ) after three months self treating went back to doctors - she saw the difference the minute I walked in..... Still wouldn't prescribe so had to wait for neurologist to recommend them!!

Bulgari profile image
Bulgari in reply towaveylines

Sorry to butt in on this post! I’ve been wanting to ask you for quite some time, where do you buy your B12 injections? I don’t think the rely would be allowed. So would be extremely grateful if you could DM me.🤞🤗

Staffsgirl profile image
Staffsgirl in reply toBulgari

I would be interested to know this, too, please!

waveylines profile image
waveylines in reply toBulgari

So sorry been away. Have PM you. 😊

Staffsgirl profile image
Staffsgirl in reply towaveylines

Can’t find your PM

Staffsgirl profile image
Staffsgirl in reply towaveylines

I wonder if you could PM me with B12 info please? Didn’t get the last one you sent.

humanbean profile image
humanbean

In my case my anxiety was virtually eliminated by optimising my ferritin (iron stores). Not only that I also maintained my ferritin as close to optimal as I could with a maintenance dose of iron supplements. While this was going on my serum iron stayed low for years. But then it started rising. Once my serum iron and ferritin were not too bad I stopped taking iron altogether.

I spent nearly two years taking maximum dose iron supplements, then a further five years of maintenance dose while my serum iron stayed low.

I still get an iron panel done a couple of times a year just in case something goes wrong, but I haven't felt the need to start taking regular iron again, and it's been three years now.

Staffsgirl profile image
Staffsgirl in reply tohumanbean

Thanks for these ideas humanbean. Much appreciated. Am quite nervous of taking iron without Dr suggesting/agreeing. My serum iron is at higher end of range.

humanbean profile image
humanbean in reply toStaffsgirl

Do you have numbers for your serum iron or a full iron panel?

I see that your ferritin is low.

Staffsgirl profile image
Staffsgirl in reply tohumanbean

Serum iron: 23.5 (10.70-32.20)

Latest ferritin: 45 (11.00-306.80)

ThyroidalLinda profile image
ThyroidalLinda

Hi, i've researched for 10 years, been to 8 docs and 5 endos and 2 gynos...Your symtoms are showing classic over active thyroid.. you are dosed too high for your current situation.

Stress/ chronic stress/PTSD etc all elevate your thyroid.

To easily test this.. if you can, ie no peanut allergies, eat peanuts or peanut butter and see how you feel.. it brings down the thyroid for nearly a day. So eat daily when your body craves it.

If allergic to peanuts.. corn/popcorn reduces thyroid too.

Hashimotos does swing high and low depending on diet, stress, sleep, excercise and other hormones such as estrogen and progesterone etc

It could swing in a day, a week or months.

(Thyroxine is released twice a day but unnecessary to split-take levothyroxine)

T3 meds may differ.

I suggest you look at overactive thyroid symptoms, talk to your doctor or endocrinologist and reduce your t3 dose slightly. It should take 2 weeks to reduce in your system.

Heart issues and atrial fibrillation symptoms can be caused by overactive thyroid.. it should return to normal as dose is correct.

Thyroid adjusts the speed in the body.. it affects every cell.

I hope this sorts you out.. i've been there and experienced this and finally sorted through my own research.

It took 10 years of me fighting against docs/endos who don't have much knowledge or incentive to sort it.

You should be optimal not just ok.

Sending healing hugs. X x

Staffsgirl profile image
Staffsgirl in reply toThyroidalLinda

Thanks for your input. Surely my latest results don’t support the idea of reducing T3?

When I first added T3 there was a great improvement in my AF symptoms, so I am reluctant to reduce it.

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