Graves' Disease with severe Afib: Hello, I was... - Thyroid UK

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Graves' Disease with severe Afib

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Hello, I was diagnosed with Hashimoto's in 2000 (four years after giving birth to my son) with TPO antibodies in the 500 range. Was experiencing hair loss, acne and fatigue. I was treated with Synthroid and Cytomel by a highly respected endocrinologist. In 2009 I became hyperthyroid. Doctor wanted to remove my thyroid but I refused surgery. I went on strict diet and exercise routine, and had some relief for a while.

In 2015 after experiencing a trauma, I became hyperthyroid with heart palpitations, severe heat sensitivity and a tremor. Again, I restricted my diet, this time to gluten and dairy free and began a supplement regimen. Was mostly fine until 2020 when I began experiencing random heart issues (tachycardia and Afib about once every 2 months), but overall I was strong and had plenty of energy. Removed most sugar from my diet and adjusted supplements again in an attempt to achieve optimal health.

Then in 2021 I lost four family members within an 8-month period, including my mom. My family went to 12 funerals that year! I was heartbroken and stunned, and under a tremendous amount of stress. In June of 2021 I developed a tremor, severe hot flashes and have been in Afib since; episodes last for 24-36 hours. I sometimes get a "break" from the Afib for about 36-48 hours before it starts in again. I don't sleep and am severely exhausted. I am a farmer, so the work I do is strenuous and I do not get breaks.

My naturopath retired at the end of 2020, so I've been ordering labs for myself. I have always suspected that I have Graves' disease as well as Hashimoto's but every doctor I ever had told me that was impossible. Well, my latest labs came back positive for Graves', which makes sense to me because I have always been underweight, tremorous, and had other hyperthyroid symptoms.

I've been seeing a cardiologist since December who is concerned about my heart and overall health. He has put me on Metoprolol and Flecainide until I can see an endocrinologist to take over care. Neither is working. optimally. My heart rate still shoots into the 160 BPM range and the Afib is still lasting 12-18 hours (better).

I finally got in to see an endocrinologist who confirmed I have both Hashimoto's and Graves' with a propensity for hyperthyroidism. She will start me on Methimazole next week.

My questions are:

Does anyone here have both thyroid autoimmune diseases?

Does anyone else have Afib, and if so, has it resolved once your lab numbers got to normal levels?

Is anyone treating Graves' and/or Afib naturally?

What foods/drinks do you avoid? Does it really work?

After taking Methimazole, did anyone go into hypothyroid state and not be able to get back to euthyroid state?

I'm scared to take the Methimazole. I don't like being on the heart meds either as I have always had faith in plant and food medicine (I don't even take Advil). I strongly believe our bodies are built to heal themselves. For so long I have been able to manage my thyroid/immune system naturally. I am disappointed to find myself in a state where this is not possible. This situation scares me and makes me sad. Any advice you offer is appreciated!

Here are my latest labs:

TSH: <0.005

T4: 14.8

Free T4: 5.7

T3 Uptake: 42

T3: 307

Reverse T3: 46

TPOab: 41

TSI: 296

Thyroglobulin: <1

Iodine: 74 (low)

Heavy metals: all low or within normal range

Female hormones: all within functional range

Vitamin D: 92

Thank you so much!

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18 Replies
SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

Please add ranges on these results. Figures in brackets after each result

Have you also got B12, folate and ferritin results

We have several members who have Graves and Hashimoto’s

This is complex so always managed by an endocrinologist

“Block and replace” is standard treatment

Block with Carbimazole and replace with levothyroxine

in reply to SlowDragon

Thank you, here are the ranges. And yes, Vitamin B is good. Ferritin and all iron levels are high, as is calcium.

TSH: <0.005 [0.450 - 4.5]

T4: 14.8 [4.5 - 12.0]

Free T4: 5.7 [1.2 - 4.9]

T3 Uptake: 42 [24 - 39]

T3: 307 [71 - 180]

Reverse T3: 46 [8 - 25]

TPOab: 41 [<9]

TSI: 296 [<140]

Thyroglobulin: <1 [< or = 1]

Iodine: 74 [100 - 380]

Heavy metals: all low or within normal range

Female hormones: all within functional range

Vitamin D: 92 [30 - 100]

PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum 

Sorry for your family losses, trauma & health worries.  

Can you add ranges to results, ranges vary between labs.

Being on hormone replacement for 9 years is a strong sign you have Hashimoto’s.

TSH usually becomes low if thyroid hormones are high but it can stay low or appear low when thyroid hormones are not high. 

Methimazole works by temporarily reducing what thyroid can produce.   The effect is temporary - stop the medicine the thyroid will produce naturally again.  If you are naturally hyper it will over produce again.  but if not in a hyper state and Hashimoto’s has left damage it will under function.  

That is from the autoimmune damage not from taking methimazole. 

Methimazole should be prescribed based on high FT4 & FT3 not low TSH.

If you have a propensity for hyper and possibly for hypo you may fluctuate unexpectedly in which case adjusting doses of methimazole (titration) will be difficult to manage and your endocrinologist may suggest ‘block and replace’ regimen,  higher dose or methimazole to fully block function on but a full replacement dose to restore levels.

There are members with both hashi & Graves - but it a case of treatment hypo / hyper levels. 

I don’t know if Afib, resolves once your lab numbers go to normal levels, but it won’t improve if you don’t get control of your thyroid level.

I have not come across anyone successfully treating Graves' and/or Afib naturally.  Their thyroid levels have remained high. 

There are no foods/drinks to avoid?  Although excess iodine usually from supplements is not advised.  Your iodine is low which is unusual.  What is your diet like?   Vegan / veggie? Do you eat gluten, dairy? Have a good diet? 

Nutrients need to be optimal not just in range.  Can you add result and ranges,  particularly B12, folate, ferritin, vitamin D.

Are you in US?

in reply to PurpleNails

Thank you. Yes, I'm in the US.

I eat a mostly Paleo diet. Meat, veggies and fruit, GF, little to no sugar. Very healthy diet and I'm active, though my energy levels are falling quite quickly, most likely due to the Afib keeping me up all night.

I added my ranges above. I don't have the results for the Vitamin Bs, but I can tell you they were within normal range, and a little on the higher end due to supplementation.

My iron levels are high, particularly ferritin: 202 [15 - 150]

Also, here is my TRAB: 5.06 H [< OR = 2.00 IU/L]

PurpleNails profile image
PurpleNailsAdministrator in reply to

TSH: <0.005 [0.450 - 4.5]  

Total T4: 14.8 [4.5 - 12.0] Total T3: 307 [71 - 180]Reverse T3: 46 [8 - 25]

Total measurement ( & reverse T3 levels) are not as useful as Free measures.  

T3 Uptake: 42 [24 - 39] 

T3 Uptake doesn’t measure actual T3 levels. it helps to determine level of Thyroid Binding Globulin & reflects the available binding for thyroid hormone. 

It’s useful to know both FT4 & FT3 - but you only have FT4 result.  

The thyroid produces both hormones - but a very small quantity of T3. Some T4 is converted to T3.  FT3 is the active powerful hormone & most say symptoms are governed by FT3 level & less affected by FT4.  (Everyone is different.)

 Free T4: 5.7 [1.2 - 4.9]  121.62% - Your FT4 is over range.  It’s not unusual for graves levels to be upward or 3x the normal range.  As we don’t know your FT3 it’s difficult to say what dose you should be started on.  

You may have lesser elevation as previous autoimmune damage has lessened the amount of functioning thyroid which is now being over stimulated.  

Any above range elevation requires treatment to bring levels into safe range.  

TPOab: 41 [<9]TSI: 296 [<140]Thyroglobulin: <1 [< or = 1]TRAB: 5.06 H [< OR = 2.00 IU/L]

All antibodies except TGab are positive.  With history of hypo & now hyper it’s fair to conclude your have both autoimmune conditions.  

Iodine: 74 [100 - 380]  - I’m not knowledgeable about iodine results & supplementation.  Hopefully others can comment.  Do a further post specially about iodine if necessary. 

Vitamin D: 92 [30 - 100] - this is good do you supplement?  What other support do you take? 

Next step arrange a test with TSH, FT4 & FT3.  Has doctors advised what dose you should be started on? 

in reply to PurpleNails

Wow! Thank you so much! This is incredibly helpful.

I forgot to list the Free T3 on the previous posts:

T3 FREE 10.5 [2.3-4.2 pg/mL]

I was supplementing with a Vitamin D/K at 10,000 IU a day due to being diagnosed with skin cancer last year (yes, I am currently a wreck). Dermatologist has me taking the Vitamin D along with Nicotinamide to strengthen my immune system in hopes of calming the skin cancer. I have reduced D to 3 X week because the level was on the higher end.

I take several supplements:

NAC

D-Ribose

Krill oil

Selenium

Cranberry extract

NAD

Vitamin D/K

Vitamin C

Royal jelly

Probiotics

L-Carnitine

L-Glutamine

L-Taurine

Alpha Lipoic Acid

Magnesium (slow release)

Thanks again!

PurpleNails profile image
PurpleNailsAdministrator in reply to

Sorry you have further health issues. 

 FT3: 10.5 pmol/l (Range 2.3 - 4.2) 431.58%. So FT3 disproportionately high compared to FT4 (121%).  Further support to use ‘block & replace’ regimen.  Methimazole will lower both FT4 & FT3 your  FT4 will likely fall below range before FT3 drop sufficiently.  

What doses are you taking for supplements.

in reply to PurpleNails

Thank you. I take the recommended doses on the supplement bottles.

So I just got my latest results from the new Endo. T3, T4, TRAB and TPOab have gone up. TSI has gone down. TSH has remained low.

TSH <0.005 uIU/mL [0.450 - 4.500 uIU/mL] L

Free T4 5.98 ng/dL [0.82 - 1.77 ng/dL] H

T3, Total 399 ng/dL [71 - 180 ng/dL] H

TSI 70.10 IU/L [0.00 - 0.55 IU/L] H

Thyrotropin Receptor Ab 7.04 IU/L [0.00 - 1.75 IU/L] H

Thyroid Peroxidase Ab 98 IU/mL [0 - 34 IU/mL] H

Antithyroglobulin Ab <1.0 IU/mL [0.0 - 0.9 IU/mL]

Doctor also ran a complete metabolic panel and ALT is high. I wonder if the Metoprolol and Flecainide might be causing this.

ALT (SGPT) 67 IU/L [0 - 32 IU/L] H

PurpleNails profile image
PurpleNailsAdministrator in reply to

Supplement bottles can provide lower doses than meaningful level. it’s also important which forms are being used.  Bioavailable forms compared to the inexpensive options.

Selenium l-selenomethionine and yeast bound selenium are better than selenite and selenate.

There’s many types of magnesium citrate might be best, oxide is least absorbable. Do you take acetyl or l-cartinine forms? 

The < on TSH denotes test limit. Effectively your TSH is undetectable & this hormone from pituitary is signalling that there is not need to make new hormone. 

Your immune system is stimulating thyroid causing high levels & the feedback loop is broken.

Antibodies are useful for diagnosis but do not alway correlate to the severity of the condition.  This aspect can not be treated.  As such must doctors do not retest regularly.  Once your levels are well controlled and considering stopping treatment treating level are low can be a promising sign.    Most remain on treatment at least 18 months many need longer.  

ALT is part of liver panel.  Doctor may be confirming no concerns before starting carbimazole.  

Usually doctors view in context of full liver panel not in isolation. May be related to thyroid, don’t know if medicines your taking may be affecting ALT.

in reply to PurpleNails

Thank you. I take the following in regards to what you referred to above:

l-selenomethionine 200 mg

Magnesium (as magnesium oxide, magnesium citrate) 250 mg

Acetyl-L Carnitine 500 mg

I have had a lot of counseling on supplement types. I think I'm taking all of the most bio-available types. Maybe not enough though.

How do I fix the feedback loop? I will do some research. Like I told my Endo, I feel like my body is all mixed up. It doesn't know what to do with itself. I've been trying to help it, but the herbs I took for hyperthyroidism clearly didn't help. Numbers are still up. I stopped taking those two months ago when I retested and saw zero change. I was taking motherwort, bugleweed and lemon balm at the time.

PurpleNails profile image
PurpleNailsAdministrator in reply to

l-selenomethionine 200 mg - this would be mcg or ug. 200ug is a max dose & is said to be ok for 6 months then reduce to 100mcg.  If testing you can adjust accordingly.

Magnesium (as magnesium oxide, magnesium citrate) 250 mg - If it’s a mixed magnesium supplement it tend to be higher percentage of less bioavailable forms. 

This article is good explaining which form to select.  You can increase up to 375mg.

Magnesium is important co factor for vitamin D, along with K2 mk7.

naturalnews.com/046401_magn...

Acetyl-L Carnitine 500 mg - this is good, I alternated between the 2 form. 

How do you fix the feedback loop?  - In technical terms it’s the HPT axis (Hypothalamic-Pituitary-Thyroid).  Once your thyroid levels reduce it should respond and rise to signal the thyroid to produce in the normal range. This takes time in healthy individuals and after a period of hyper it can be slower to respond.  

So while the TSH might not return to “normal” quickly adjustments must be by FT4 & FT3.  

My hyper was missed so I had suppressed TSH a long time & even though I’ve taken carbimazole years & FT4 & FT3 been in range my TSH never responded.  

Motherwort, bugleweed and lemon balm are popular remedies for hyper.  Some say they help with the symptoms eg palpitations, digestive complaints & sleep - but no, unfortunately they don’t have any affect of reducing levels.

in reply to PurpleNails

Oops, yes, it's mcg for the selenium. I apologize for the confusion. My brain is not working efficiently at the moment. Thank you for all the info. I appreciate it.

pennyannie profile image
pennyannie

Hello DahliaMay and welcome to the forum :

I have Graves but am post RAI thyroid ablation in 2005 and my trigger was being attacked by a man I employed as my assistant manager - and post my mother, father and brother dying within 6 years of each other and I realise now I have been hypothyroid from a child.

The most all encompassing website I found is that of the Elaine Moore's Graves Disease Foundation - elaine-moore.com - though I only started my research into Graves some 10 years after RAI thyroid ablatio when so unwell and with no answers or help forthcoming from mainstream medical.

There is whole section on treating the whole person and looking at life/work stress and alternative, integrated and more holistic treatment options.

Elaine has Graves and went through RAI thyroid ablation at the turn of the century and finding no help with her continued ill health started researching this poorly understood and badly treated auto immune disease herself and now a well respected authority with a World wide following on her forum.

There are now several books, and a forum much like this one, and Elaine did take an active role in answering private emails on a one to one basis - but now in recovery from stomach surgery not sure if this is still an ongoing option.

Elaine is Stateside so just be aware of the possible time lag:

in reply to pennyannie

I'm sorry about you being attacked! How horrible. And I'm sorry for your family losses. Thank you for the information. I will look into this!

humanbean profile image
humanbean

Having had so many stressors in such a short time there is a possibility that your cortisol level is out of whack. It could be too high or too low and both can affect the heart rhythm. It would be worth getting it tested.

Ideally you would test with a saliva cortisol test :

stopthethyroidmadness.com/s...

Your doctor may do a blood cortisol test for you.

Please note that the blood test for cortisol and the saliva test for cortisol are not testing exactly the same thing, so it is perfectly possible to get high levels for one, and low levels for the other.

.

Have you ever had your potassium levels measured? I thought I was having a heart attack when my potassium was bottom of range.

in reply to humanbean

Thank you. Yes, I have my cortisol tested twice a year, saliva test through ZRT Labs. It's perfectly within range.

I had my potassium tested in December and it's good. All of my nutrient levels are good, except Calcium, which is high.

asiatic profile image
asiatic

Sorry to read your history and how unwell you feel. Although I only have Graves Antibodies, they fluctuate between stimulating and blocking TRab making me hyper or hypo. A block and replace regime for 7 years has kept me feeling well. No two people will have the same thyroid journey. We require a very personalised approach. I lead a healthy lifestyle and would prefer a more natural approach, however only B&R restores me to good health. 7 years of recording doses/blood results/symptoms provides me with a clear picture that my symptoms correlate closely to my fT3 levels which I need to keep at least half way through range. (In UK fT3 is preferred over T3) My mantra has always been to be on THE LOWEST EFFECTIVE DOSE. Rather like a diabetic patient adjusting their insulin, I fine tune to keep my fT3 where I know it needs to be. You are being started on Methimazide alone. With your history I would be concerned that you will become hypo very quickly and need some levo added in.

Thank you. The becoming hypo is my biggest concern because I am super sensitive to medicine and supplements. I have to be mindful of everything I put into my body.

I posted my FT3 above. I had forgotten to do that last night (was tired and up with Afib so not thinking clearly).

T3 FREE 10.5 [2.3-4.2 pg/mL]

I like your mantra. Thank you for sharing with me.

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