Untangling: not sure where to turn next!

[Staffsgirl]

Do any of you wise people have any advice on untangling the awful symptoms of extreme anxiety, atrial fibrillation and Hashimoto’s?

[Hidden]

I’m so sorry that you’re unwell.

What is your current dose of Levothyroxine? It would also be helpful to see latest blood tests with ranges.

[Lalatoot]

For me the anxiety, fast and irregular heartbeat went when I was found the right doses of levo and lio and the hormone levels that suited.Tells us more about your treatment so we can help

[Staffsgirl in reply to Lalatoot]

Currently and for last two months: 75/50 levo alternate days, and 10 lio daily. Prior to that I’d had an increase of lio to 15 for a few months earlier this year, but found that AF and palpitations were worse on that dose. Hence the dose was lowered.

[Lalatoot in reply to Staffsgirl]

You could try 7.5 mcg lio. You could try splitting your levo dose to see if that is gentler on the body.

It took me 2 years of trial and error to find my doses.

[Buddy195 Administrator]

Increased anxiety has been the worst symptom of having a thyroid condition for me and it is always worse if thyroid medication or key vitamins (ferritin, folate, vitamins B12 and D) are not optimal. Although I don’t have AF, I have ended up in A and E with very fast pulse, palpitations & tremor when my thyroid medication has been out of kilter.

My GP initially diagnosed me with ‘ health anxiety’, suggested I saw a psychotherapist & offered me anti depressants. Joining this forum helped me realise that my symptoms were related to being under medicated and I followed forum advice to improve this.

I’ve also found that my anxiety flares if I increase (or decrease) thyroid medication too quickly. I’ve found being more of a tortoise than a hare has helped ease my anxiety symptoms.

Can you share your most blood results with us, so we can best advise you, Staffsgirl.

[waveylines]

Are you on any heart medication? Many of these work by lowering conversion of T4 to T3...... I found this out as I have Afib too. Are you P-Afib (intermitant), persistent Afib, happens most of the time or permenant Afib?

I found Verapamil which lowers conversion selectively in heart only worked well for several years Verapamil is a calcium channel blocker.

Bet blockers made me ill causing palpitations. I assume due to lowering of conversion of thyroid hormones, may have caused back stacking of T4.

Afib in itself causes anxiety because your heart rhythm beats differently, often faster but can be slower and it feels weird. Fatigue is a feature, as is reduced exercise tolerance.

[Staffsgirl in reply to waveylines]

Only an anticoagulant, since BB and CC blockers don’t agree with me, and I’m all too aware of their effects on thyroid.

EP calls it permanent. Was asymptomatic for a number of years, but now have symptoms. Fatigue is familiar, and of course, this goes with the territory of both thyroid and AF! Unsurprisingly, I’m getting very little sleep.

[waveylines in reply to Staffsgirl]

Sorry to hear this. Are they going to try ablation? Or a mini maze?Sympathise re heart drugs. I've been OK on Verapamil (Didn't affect my thyroid levels as its heart specific) but after a few years my Afib progressed so have had a mini maze which went well - in NSR - but the drug was put on afterwards for a short while, while heart heals (which I didn't realise I would be put on!) Lol.... 🫣😬 causing me loads of thyroid problems as it pumped me full of Iodine which takes ages to leave the system. Sigh....

[Staffsgirl in reply to waveylines]

So sorry to hear of your treatment and effects on thyroid.

No treatment offered me for AF. Been told there’s nothing that would work.

[waveylines in reply to Staffsgirl]

Oh Nooo surely not. I know several people who've had a mini maze for permenant Afib, one for 12yrs! It sorted it. I was also told ablation would not work for me too as my Afib is due to cardiotoxicity from cancer treatment. EP said he would not be to get to all the rogue impulses to stop them being triggered so didn't want to try. Mini-maze works from the outside of the heart. It's surgery but keyhole. Only a few specialist cardiothoraisic surgeins can do it. Ops been around for well over 20yrs and is established in America, Europe, Japan. Feel free to PM if u want the name of surgeon who did mine. I'd moved into persistant Afib.

[Staffsgirl in reply to waveylines]

Hi DippyDame and waveylines,

I finally put my results up. Sorry it took awhile.

[waveylines in reply to Staffsgirl]

Hello Staffs girl. I know you said you'd added Liothyronine in? Can you say how much lio & how much levo. I can't find it on your post? Also was your blood test 6-8 weeks post increase or adding of liothyronine?

If so Your Ft4 has room to move. I'd increase your levo by 12.5mcg and leave lio alone as its likely to increase with the extra levothyroxine. And test again in 6-8 weeks.

Did you originally try increasing levo on its own first before adding lio in?

Mor importantly how do you feel. Signs symptoms?

Its tricky finding that sweet point.... And more tricky if you have Hashi with swings as you do have to alter doses more frequent. My thyroid levels flatlined pretty quickly but I did get a very late diagnosis so my issues were mainly about getting to my optimum level on the best type of thyroid hormones for me.

[Staffsgirl in reply to waveylines]

This blood test was 8 weeks after reducing lio from 15 to 10 because the earlier increase from 10 to 15 had resulted in bad palpitations and no sleep. Fatigue.

Levo currently 50/75 alternate days. Conversion is poor.

Strongly suspect Hashi swings…much unavoidable stress.

Big thanks for your input. 🙏

[waveylines in reply to Staffsgirl]

Ah OK. Tricky. I'd still increase levo to 75mcg everyday (12.5mcg) Now you have some Liothyronine going in your body may accept the increase & be able to convert it. If it doesn't then it would definately be lio increase next time.I'm a poor converter too.... But like everything in life it's shades of grey. So in your case it really is about finding what shade, of grey your conversion is. Slowly slowly catchy monkey. (incredible frustrating!!) Stay with it.

With your Afib you will have to be even more careful with adding Liothyronine to avoid upsetting further.

[DippyDame in reply to Staffsgirl]

Currently and for last two months: 75/50 levo alternate days, and 10 lio daily

The labs you have just posted on that dose show...

FT4. 47.69% through the ref range

FT3. 45.45% ditto

The T3 has possibly lowered FT4 ...but FT3 is the important result

FT3 is still too low despite additional 10mcg T3

Looking at your labs 2 years ago your T4 to T3 conversion looks poor.

Did your Dio2 test show you inherited the snp from both parents....if so conversion likely to be worse than if from one.

academic.oup.com/jcem/artic...

Re TSH...it is too high, suggesting undermedication

TSH: 2.4 (0.38-5.33)

When medicated TSH should be 1 or under.....not 2.4 despite what ref range shows!

thyroidpatients.ca/2021/07/...

Re both FT3 and AF this may be of interest..

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann

( All eminent in the field!)

The cause of atrial fibrillation poses a complex problem, as its occurrence has been physiologically and statistically associated with both high and low FT3 concentrations [68].

*****

Note waveylines comment re AF...

It would worry me that if someone just thought it is due to being Hypothyroid may not seek a timely proper assessment & potential risk of stroke because they may think Thyroid treatment will correct it.

I'd suggest you need more T3...you need to speak to your endo about an increase

You might use the above links as evidence

You will not be over medicated if FT3 remains in range.

Just a few thought that might help you decide how you wish to proceed

[Staffsgirl in reply to DippyDame]

Thank you so much…I’ll look into all this. Am aware that percentages are quite low, but I’m also very nervous of increasing T3, since I did that earlier in year, at suggestion of endo, (felt over medicated), and experienced very bad palpitations/AF (who knows?).

DIO2 was one parent. I have already quite a lot of info re the T3 / AF link, but I’ll look at all you suggest.

Thanks again.🙏

[DippyDame in reply to Staffsgirl]

Maybe you just need to increase T3 very slowly by a tiny amount.

FT3 has likely been low for some time so the dose (?) of extra T3 was maybe more than it could adjust to at that point.....low and slow!

It is possible that the reaction was caused by the body's need for more T3...a cry for help!!

It's a difficult balancing act!

Take care

[DippyDame]

I'm afraid we need a lot more info to help you untangle your health concerns.

Is there any reason why your Levo dose wasn't higher before adding T3?

Do you have any recent test results that you can post?

If not the aim for a full thyroid test to include...

TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroud antibodies TPO and Tg

Without, at minimum both Frees, we cannot accurately analyse thyroid function

Are you totally gluten free to help Hashi's?

Bear in mind Hashi swings can mess things up and brief periods of hyperthyroidism may then occur, but this is transient.

Anxiety and AF are both symptoms of hypothyroidism.

Research has shown that both hypothyroidism and hyperthyroidism can increase AF vulnerability. To avoid AF, thyroid hormone levels should be "normal"/ neither hypo nor hyper thyroid.

Your current medication appears to be incorrect.

Up to date lab results should help to point the way forward

[Staffsgirl in reply to DippyDame]

Thanks. I may well have had Hashi swing…been under many stresses. Tried gluten free for a couple of years (a few years ago) but felt no benefit.

Levo dose had been lowered when I first started lio.

Will post bloods later.

[DippyDame in reply to Staffsgirl]

How much levo were you taking before T3 was added?

T3 naturally lowers both FT4 and TSH....not always necessary to reduce Levo when adding.

Good! Post new labs for more help.

Take care

[Staffsgirl in reply to DippyDame]

Had been on 100 levo before T3. Initially had felt really well on T3.

(Struggling to get my screenshots of tests onto this forum! 🙄 Must try harder…can get the screenshot onto the page, but the send button won’t work once the screenshot is there.)

[Staffsgirl in reply to DippyDame]

TSH: 2.4 (0.38-5.33)

T4: 11.0 (7.9-14.4)

T3: 4.8 (3.8-6.0)

Serum B12: 626 (133-675)

Serum folate: 20.0. (3.10-19.9)

Serum ferritin: 73 (11.0-306.8) have been working on this and it’s a work in progress

Vit D. 126.1

[Staffsgirl in reply to DippyDame]

Hi DippyDame and waveylines,

I finally put my results up. Sorry it took awhile.

[waveylines in reply to DippyDame]

"Anxiety and AF are both symptoms of Hypothyroidism."Sorry Dippy, have to disagree with you over Afib being a symptom of Hypothyroidism. Palpitations can be a symptom of Hypothyroidism. Afib is due to rogue signals in the heart triggering the heart to beat erratically, causing the heart chambers to pump too fast so they do not fully fill and empty and not in sequence.

Afib is different to palpitations. Many people have developed Afib but don't have Hypothyroidism & vice versa.

If someone feel they are having irregular heart beats or their tracker watches flag up Afib it does need checking out. You can have both conditions (Afib & Hypothyroidism) separately....like me.

[DippyDame in reply to waveylines]

waveylines Clearly I cannot claim to be an expert on this subject but it cannot be ruled out that AF and hypothyroidism can/do co-exist.

The appended studies indicate that there is a risk, albeit much less than with hyperthyroidism. Is that a reason to rule out the possibility, as you seem to be doing?

From my own experience of (cellular) hypothyroidism it seems clear to me that little can be ruled out during diagnoses.

Neither Staffsgirl nor I mentioned palpitations but you seem to suggest that I am confusing those with AF....I understand that they are different.

You say,

Afib is due to rogue signals in the heart triggering the heart to beat erratically, causing the heart chambers to pump too fast so they do not fully fill and empty and not in sequence.

Fine, but folowing on....

Can you explain what causes those rogue signals?

Let's, for example, not forget the importance of adequate T3 to the health of the heart....it needs a huge amount.

Perhaps it may have been less confusing had I said that AF CAN be a symptom of hypothyroidism rather than inferring that it IS a symptom. My mistake!

Best...

DD

bmj.com/content/345/bmj.e7895

The spectrum of thyroid disease and risk of new onset atrial fibrillation: a large population cohort study

Our results showed that even discrete subclinical hyperthyroidism was associated with increased risk of atrial fibrillation. Notably, both subclinical and overt hypothyroidism were associated with lower risk of atrial fibrillation. These results support long term screening for atrial fibrillation in patients with thyroid disease.

We might also refer to this study

ahajournals.org/doi/10.1161...

Both Hypothyroidism and Hyperthyroidism Increase Atrial Fibrillation Inducibility in Rats

We have demonstrated that in a rat thyroidectomy model, both hypothyroidism and hyperthyroidism can increase AF vulnerability, indicating that normal TH levels are required to prevent cardiac arrhythmias and AF, especially in conditions when cardiac tissue hypothyroidism may be present.

[waveylines in reply to DippyDame]

Thanks Dippy. Yes I can explain. I had a very large fast growing muti focal breast cancer tumour that required very aggressive cancer treatment involving 6 high dose rounds of FEC-T (3 of these chemicals known to damage to the heart), Followed by Herceptin also linked to heart damage, followed by 15,rounds of radiotherapy on the left breast, likely to have links to heart damage as its caused lung scarring & 7yrs of hormone blocking treatment which probably did not help heart health. I developed a fast heart rate during chemotherapy which did not abate but worsened.

Received no treatment for nearly 8months post bc treatment as back then they didnt believe BC treatment affected the heart. It's now recognised.

I had been diagnosed with Hypothyroidism & optimally treated10yrs before BC after been mistakenly told I had ME/CFS. Through that time when I was hypothyroid but not diagnosed, and when I was woefully undertreated, I did not develop Afib or fast heart rate. I had a very slow heart rate which came up slowly into low 70s once optimally.

Prior to BC treatment I had to have several heart scans and checks. No Afib. Health strong heart. It's medically been diagnosed that my Afib is a consequence of BC treatment which I agree with. Now stage 2, heart failure as a consequence. One of the big killers of post bc cancer survivors is dying from cardiotoxicity.

As far as hypothyroidism in general is concerned a body of research on people would really need to be put together that Hypothyroidism specifically causes Afib, though it is agreed not receiving treatment long termly causes multiple health problems including heart disease. My limited understanding is that this is due to the high cholesterol levels that it causes which does affect the heart functioning leading eventually to a heart attack if not addressed. There is evidence that over treatment, especially of T3 is linked to Afib if Ft 4 & Ft3 are not kept in range... this from two highly regarded thyroid doctors. .

I acknowledge that Hypothyroidism is well known for the diversity of how it can present so can't say it would not result in Afib but it isn't a main symptom. It would worry me that if someone just thought it is due to being Hypothyroid may not seek a timely proper assessment & potential risk of stroke because they may think Thyroid treatment will correct it.

[DippyDame in reply to waveylines]

Goodness you've had a hard time and I can understand why you feel so strongly about this. I agree that AF is not a main symptom of hypo but I wasn't suggesting that....only that it can be a symptom. As I said my wording may not have been clear enough.

I appreciate you sharing your very personal experience and hope it raises awareness here, of the potential dangers of missing/ overlooking AFsymptoms.

From my position I feel very strongly about the importance of adequate cellular T3 having been left very ill as a consequence of deficiency. Also diagnosed wrongly as FM and CFS!

That deficiency resulted in numerous health issues over decades ( possibly all my life) some of which have caused lasting damage.

This is a contentious issue, T3 is not a hot topic with medics as you know, yet it needs to be the subject of further research. Given the relatively low cohort involved this is not of high interest despite its importance to nearly every cell and organ in the body.

Regarding cholesterol, T3 plays an essential role in helping the liver process and remove excess cholesterol from the body - I understand that when the body does not produce enough thyroid hormone the liver cannot process as much cholesterol as usual which causes a build up in the arteries. This as you say does affect the heart functioning leading eventually to a heart attack if not addressed.

T3 is linked to Afib if Ft 4 & Ft3 are not kept in range... this from two highly regarded thyroid doctors. .

Like any other medication excess to requirement can be problematic ...but we need what we need

In many ways this issue seems to be a chicken and egg situation so the more research that can be carried out the more the AF / hypo issue might be understood

I'm not in a position to doubt what you say and I apologise if it sounds as if I do.

So, wishing you well and many thanks for your reply, I'm full of admiration for your courage.

[waveylines in reply to DippyDame]

Awww thanks DippyDame for your kind words. And I know you've had a a very hard time too. We are both warriors....& had to find our own way, kicking & screaming! Good job too.I actually think we are both more or less on the same page. I know you had to go T3 only route and it opened the golden door. I'm a very strong believer in T3 and it beggars belief that GPs now are not allowed to ask for a blood test to test it on the NHS. So important to know.

I find so many if your posts so interesting and informative. Always look forward to your contributions. You are far better read than me.

The cholesterol I knew about once a barometer as we're symptoms and signs. I still go on the latter two before a blood test.

Thank you. ❤️❤️