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[lordrio]

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Hi all,

 

I'm new here and new to the Hyperthyroid disease. I am pretty confused right now from reading stuff on the internet, and what my endo is telling me to what I'm currently experiencing myself right now.

 

So here's a short story plus my numbers, I found out something was wrong with me when I was on a 7 hour plane ride to Abu Dhabi for a bussiness trip, where I had a non stop panic attack, very fast heart rate, palpitations, skipped beats, from take off to landing. I never had any problems in flight before. Then I had to walk around in 40 celcius weather all day which I'm unabled to do since I'm getting skipped beats every 10 steps I take, which scared me to death. I was thinking I'm going to have a heart attack anytime soon and died, but I didn't, luckily. 2 weeks later I got back, with a dose of xanax inside the plane because I thought I only had a bad panic attack and nothing else was wrong. Still have tachycardia at home but ignored it. Few weeks later I was admited to emergency when I was taking my dad to emergency because my heartrate was 130+ bpm and wasnt slowing down. They took my blood and did ECG and I was diagnosed with hyperT

13 July 2013 :Free T3 : 9.28 pmol/L (2.62-5.70)Free T4 : 27.1 pmol/L (9.0-19.0)TSH : <0.01 mIU/L (0.35-4.94)TSH Receptor Antibodies (TRAbs) : 1.4 U/L (<1.0)

At August :Free T4 : 19.4 pmol/L (9.0-19.0)* The endo didn't seem to bother to take FT3 and TSH at this time.

I was started on Propanolol and Carbimazole 2x 5 mg, and after a few month I was able to ween of propanolol and finally be able to feel almost normal again, and no skipped beats and panic attack from just climbing stairs going to my room upstairs. YAY

 

 

On October, I started to feel cold intolerent, and some brain fog here (started a few weeks back) and there but endo didn't care when I told her and insist I continue the meds. Since I was feeling normal heart rate wise, I continued taking 10mg.

On October :Free T4 : 13.1 pmol/L (9.0-19.0)* The endo didn't seem to bother to take FT3 and TSH at this time.

Early November:Free T3 : 4.31 pmol/L (2.62-5.70)Free T4 : 14.1 pmol/L (9.0-19.0)TSH : 1.69 mIU/L (0.35-4.94)

During this moment I still feel somewhat ok. Event more cold intolerant, even rain makes me feel like its winter. But heart rate wise, it kept stable under 90 bpm.

 

Around the end of November, I started to get hyper symptoms again. Panic attack, fast heart rate (over 100 bpm most of the time), skipped beats and palpitations at times. I decide to rough it through thinking it was something else. But it didnt settle down so I went to my GP for a test :

6th of December : (Different Lab)Free T3 : 4.4 pmol/L (3.5-6.5)Free T4 : 14.7 pmol/L (11.5-22.7)TSH : 5.35 mIU/L (0.35-5.50)

After the lab and after reading some stuff on the internet, I decided to reduce my dosage a bit, from 2x 5 mg (10mg) to 1x 5mg 1x 2.5mg (7.5mg) without the consent of my endo, since my appointment with her is in end of Jan 2014, I didn't met with her since 21st of October. I thought I was maybe over medicated, but 10 mg is a very low dosage, and I decided to try anyway. After a few weeks I felt more normal, less cold intolerent, and less tachycandria, but last week, I had a few bouts of palps and tachycandria for a few days which scared the heck out of me.

 

 

So I went to my endo earlier then I should (because I was scared that reducing my dosage might've screwed up something), showed her my 6th Dec report, told her that I had tach and palps, and when I met her my heart rate was over 100 also. I asked her if I might be overmedicated, she brushed me off saying no its not possible with that number. People with low thyroid will have lower heart rate not higher. And went on to say even with TSH over 10 mIU/L you would still feel normal. I told her that I found out on the web there are people with hypo with palps, and she just say no, and just refered me to a cardiologist. She said your tach and palps are not thyroid related anymore now that the numbers are in range and asked me to go back on 10mg per day as she's instructed. She even refused doing blood test when I asked her. Eitherway I still haven't had the chance to meet with the cardio because everyone is on leave till new year.

 

Anyway I went to emergency and ask them to do a test anyway. Just got it back :

27 Dec :Free T3: 3.99 pmol/L (2.62-5.70)Free T4: 14.9 pmol/L (9.0-19.0)TSH 3.27 mIU/L (0.35-4.94)

Anyway my questions is, does anyone have any insight about my prediciment? Is my palps are not thyroid related? Should I go back to 10 mg of Carbimazole per day again? I hate this, I was just about to feel normal again and this happen. I'm clueless on what to do anymore. What the stuff on the internet tells me and what my endo told me is conflicted and I'm confused. Also I just found out that AACE revised their range to [color=#339966;]0.3 – 3.0 mIU/L [/color]like in the year 2003 but my lab still using 0.35-4.94.

 

Also I posted on Elaine Moore Q&A, but I don't quite understand her reply : http://www.elaine-mo...ts/Default.aspx

Thyroiditis is not Graves?

And I can't press the reply button to ask for more clarification and I don't want to bother her more since she's probably busy, so here I am.

 

 

Thanks for reading and I really appreciate any help.

Hope everyone have a better days then I am

[mmztcass]

Hi and welcome:

 

Might it be possible to stick with one lab place to use the same reference ranges for both Free T3 and Free T4?  It's very confusing to go back and forth between both.    

 

The reason for the tachycardia and other symptoms is that your Free Ts are too low - hypO.  You would want to discuss with your doctor about dose reduction to lower than 10 mg for the CBZ (Carbimazole).  

 

I take 1.875 mg of MMI per day so that's a very low dose compared to the 10 mg.

 

Most Endos and other doctors do not know how to dose us properly with the meds, which is why we have the forums to help us.  They also don't know how to lab us properly either.

 

Elaine is saying that your high TSH reading is show you hypO with the Free Ts being too low for your needs.  When the Free Ts are where we are feeling our best within the normal reference ranges, the TSH should be around 1.0, maybe less or a bit higher depending.  If I get my TSH under 1.5, I know I am heading in the right direction to optimal thyroid levels with the Free Ts.    

 

{{{hugs}}}

[Misty]

Good job getting Elaine's opinion, as she really understands Graves and thyroid issues.

 

What she means by thyroiditis is that perhaps your do not have Graves', an autoimmune disease diagnosed with an a TSI antibody test. Instead, she suggests you may have had thyroiditis, which would cause a temporary rise ion thyroid hormones and then resolve, unlike Graves'.

 

Otherwise, Linda has covered your situation above.

 

Best wishes,

Yvonne, remission since 2005

[lordrio]

Hi mmztcass and yvonne,

 

Thank you for replying

Actually I've been talking to my endo on 3 separate occasions trying to tell her that I might be a bit overmedicated, but she says no because as long as my Free Ts is in the normal range, its all good no matter what my TSH is, even if its over 10.0. She's more interested in trying to drug me for my pre-diabetes and elevated LDL cholestrol. sigh.

 

Also I thought I had Graves, since that is what she told by after we did the TRAbs, but we didn't do any other antibodies test or scans. What does elevated TRAbs proof by the way, if its not graves?

 

Only the 6th Dec lab was done at my GP (which takes longer but very much cheaper) all the other is done in the private hospital where my endo is which is further away, only takes 2 hours to get result but way way more expensive. Since I'm paying with my own money and I thought all labs only have slight variation, I went to my GP that time. Now that I read it again, there's a huge different in the range.

 

Thanks for replying Linda, Yvonne.

[fireball]

Yes this has confused me as well. Why are the TRab taken July 13 not a positive confirmation of graves disease?

[Misty]

oops. I missed the TRab reading. That would confirm Graves'.

[lordrio]

Just an update.

 

Went to see the cardiologist yesterday, did an echo and found out that my heart is perfectly normal. Gave me concor to lower my blood pressure, even tho I don't have any high blood pressure history. (I was every anxious when I did the test because I was afraid of my echo would show something bad, so my bp was higher) Tried the meds today, feel really cold, but my heart rate stays at 70+ bpm. Not as tired  as when I took 10mg propanolol.

 

What I realized is this tachycardia is different from when I had hypER. It was a constant 100+ bpm, and goes into overdrive when I do any kind of activity. This one happens for no reason at all. I was sitting infront of my computer just know watching a drama, then suddenly a rush of heat flash, feeling horrible, and heart rate incease slowly to over 110. My heart rate resting is usually hovers around 80+ bpm.

 

Going to meet with a new endo for a second opinion this Friday. I do believe she will have the same opinion with my last endo But I hope she will try to listen. Since my Free Ts is in the mid point and not really that low. Just my TSH is elevated a bit

 

 

Also Happy new year everyone!

May this year will be better then before.

 

Rio

[Simon]

I was going to contradict above and say - yes the tachycardia you had when hyper is clearly hyperthyroidism, exactly as I experienced it.

 

The tachycardia whilst mildly hypothyroid (which I'll hazard as a description - technically it is called sub-clinical hypothyroidism) is less clear cut. Could be hypo, could be something else, but sounds like the cardiologist doesn't think it is something else.

 

The relationship between heart rhythm and thyroid hormones is REALLY complex. The beat can respond to differences in both fT4 and fT3 independently. The normal defect in hypothyroidism is bradycardia (abnormally slow heart beat), something I suspect I have as my resting heart rate suggests I'm super fit (and I'm not).

 

Heart epidemiology in sub-clinical hypothyroidism shows that all is not well within the reference range for thyroid tests. This doesn't really help other than to suggest your current levels may be too hypothyroid for YOU.

 

As regards Cholesterol, this will go down if your thyroid hormones increase slightly. The inverse relationship between cholesterol and thyroid hormone is well documented.

[fireball]

Please read my thread   http://www.livingwit...ed-dosage-help/

 

I,like you and apparently others, have an elevated heart rate and an increase in diastolic pressure when the FT4 is too low for our body's needs. My endo and GP have never heard of this yet it is well documented within this board. Because 80% of the thyroid receptor sites are in the heart, the heart beat changes in relation to the amount of thyroxin in our bodies. When hyper my heart contracts strongly, jerking my body off the bed. When hypo it is a dull pound.The reason why your heart rate elevates when the FT4 is too low for your body's needs is that there is less strength to the heart contraction( lower ejection fraction) so it has to beat more often ( tachycardia). I'm looking for my reference but seem to have lost it in my brain fog LOL. 

 

I, like you, were extremely anxious ( hypo): I saw cardiologists and had an echo and stress test. My heart is normal. I have been to 2 endocrinologists and about 5 different gps. None offered any reassurance. Since I started a modified block and replace by adding synthyroid 50 mcg my heart pounding has started to recede. 

 

You may have to dictate to the endo your treatment plan by insisting your FT4 is too low for your body's needs. It is a mistake to assume the DR. knows more than you do.

[fireball]

[color=rgb(51,51,51);font-family:'Trebuchet MS', Arial, Helvetica, sans-serif;font-size:13px;] [/color]http://www.endocrine.../ea0020p165.htm[color=rgb(51,51,51);font-family:'Trebuchet MS', Arial, Helvetica, sans-serif;font-size:13px;]                [/color]

 

 

[color=rgb(51,51,51);font-family:'Trebuchet MS', Arial, Helvetica, sans-serif;font-size:13px;]Conclusions: Prolonged conduction, low voltage, sinus bradycardia and different atrio-ventricular or brunched blocks are classical sings of hypothyroidism, however, our case suggests that PSVT can also be part of the cardio-vascular anomalies during hypothyroidism. The mechanisms involved in the occurrence of tachyarrhythmia in hypothyroidism could be: alteration of myocyte-specific gene expression, interstitial oedema, myofibril swelling with loss of striation, increased arterial stiffness, endothelial dysfunction, premature atherosclerosis, disturbances of the sympathetic-vagal tone with a relative increase in sympathetic tone and autoimmunity.[/color]

 

[color=rgb(51,51,51);font-family:'Trebuchet MS', Arial, Helvetica, sans-serif;font-size:13px;]Clear as mud? LOL[/color]

[lordrio]

Hiya Simon, and Fireball

 

Thanks for the reply and advises I really really really appreciate it.

 

I've just read your thread fire, it was an eye opener, lots of info. It's really makes me sad that the endo that I rely on to help me off this horrible disease is clueless of what she's trying to fix. Its nuts that she saw my result and say take the same amount of Carbimazole that brought me down this fast and stay on it for 3 month more.

 

Thanks to your thread, now I have more info to talk to the new endo tomorrow. Hopefully this one will listen, as I'm really tired maxing out my credit card just to meet with docs that rather drug me with statin then trying to fix my thyroid. (No insurance, and won't get it now that I have thyroid as pre-conditions) sigh

I'm only half a year in the treatment and they don't even see it weird that my TSH is soaring up. Also she is pissing me off everytime I met with her, keep bugging me why my weight is going up since I started Carbimazole. Why won't I exercise etc. I can't even move normally without a panic attack and skipped beats which scared me like crazy thinking that I might have a heart attack, and she just keep bugging me to do more exercise. And I'm so scared of those episode that I bring my propanolol to everywhere I go.

 

If this new endo is like the old one I'm pretty much screwed since there's not many endo around me. I might have to try to fix myself if it comes to that

 

Also its really reassuring seeing people who had the same problem as me as of right now. Thanks Fire and Simon

 

 

Since I have done 7.5mg CBZ for 3 weeks and my 27 Dec result still show that I'm hypO and still have tachycardia at times, going to try 5mg CBZ and 7.5mg CBZ altenately, or maybe go directly to 5mg per day. And do a blood test again in a month. Still scared of going to hypER again.

 

 

Update :

The new endo agreed with the assesement that I've been over medicated. What a relieve~. She also agree that I should cut down to 5mg Carbimazole and do testing in a month.

Edited by lordrio, 11 January 2014 - 03:31 AM.

[lordrio]

Hi all,

 

I'm down with a fever (flu maybe?) for the past few days, around 38.5 Celcius, and having tachycardia episodes non-stop. I've started with 5mg CBZ since early Jan, is there any chance for me to get hypER again this fast, and should I be doing a thyroid blood test? I was a bit worried because Friday night I had a huge anxiety attack with 145 bpm and 170/90 bp. Which was luckily controlled by 40mg of propranolol. I do worried if I'm hypER again and I heard Thyroid Storm is triggered by infection. With this fever I feel like I'm hypER all over again.

 

 

Thanks

Rio

[mmztcass]

Is the CBZ (Carbimazole) being taken in divided doses of twice a day, at least?  How about the Propranolol, how often are you taking it?  

 

{{{hugs}}}

[lordrio]

Hi Linda

 

CBZ is taken once in the morning (as instructed by the endo)

 

I've been taking propranolol as needed before, but since the fever is causing huge heart rate increase I'm taking 10mg once at morning and once at night.

[mmztcass]

You might want to take the CBZ in divided doses of at least twice a day to three times a day.  It will help to lessen the roller coaster effect of hypER/hypO through out the day.

 

Once a day dosing didn't work for me in going through similar symptoms as you are having.  I had to divide into three times a day and take every 8 hours.

 

http://www.medicines...icine/26934/spc

 

{{{hugs}}}

[fireball]

Sorry you are sick...

 

CBZ is best divided into at least 2 . I divided it into 3 to provide 24hr coverage. It ensures your thyroid has even even levels that way you don't feel the hypo/hyper symptoms. It lessens the roller coaster ride. It provides even stimuli. It's a better environment for the thyroid to heal.

 

There are 2 types of propanolol slow release and immediate release. Most DR.s know our metabolism is revved meaning I can metabolize meds faster ( they are less effective) so immediate release is proscribed. Propanolol immediate release is usually proscribed 40 mg every 8 hrs for high heart rates. If you are taking the immediate release of 10 mg pills you can certainly take more. For the sick period I would double the dose. I would take my heart rate and miss or decrease a dose  if my beats per minute were less than 60. http://www.medicinen...lol/article.htm  Keep in mind only you know your cardiac history. 

 

I would also make sure I drank 2 litres of water a day (or more if I lived in a hot climate). Also take an antipyretic like tylenol to bring down the  low grade fever.

 

It's hard to guess if your levels have gone up. I suspect you are feeling rebounding coupled with the flu? It takes the body a while to adjust. Everybody says 3 days but it takes me 2 weeks to adjust to a dosage change. It sucks being sick and you may be feeling anxious due to less than perfect (hypo) thyroid levels. Time will help.

 

Once you are feeling better you can start a walking program but if you felt anything like I did the idea of exercise is ludicrous. This will get better.

[lordrio]

Hi Fire and Linda,

 

Thanks for the advice. I will try to split the CBZ tomorrow. I forgot to mention that I was feeling a lot more better when I reduced my dosage to 5mg a week and a half ago and heart rate was slowly averaging around 80 even without propranolol, I just started having a more hypER symptoms when the fever start with very itchy throat and running nose a few days ago. I'm just worried that the infection might screw up my thyroid by causing it to over produce or maybe the antibiotic I'm taking is screwing up with the CBZ or thyroid.

 

One question though, if I cut my dosage of 5mg to 2, it will be 2.5mg. Wouldn't that be too low to have any effect on the thyroid and might cause me to go even more hypER?

From Linda's link :

 

Carbimazole has a half-life of 5.3 to 5.4 hours. It is possible that the plasma half-life may also be prolonged by renal or hepatic disease. See Section 4.2. Posology and method of administration.

 

If I split it to day and night, its like I'm taking 2.5 mg CBZ per day? (I'm a bit confused)

 

 

Thanks

Rio

[Harpy]

 

One question though, if I cut my dosage of 5mg to 2, it will be 2.5mg. Wouldn't that be too low to have any effect on the thyroid and might cause me to go even more hypER?

 

Dose is still the same for the entire 24 hour period, 1 x 5 = 5,   2 x 2.5 = 5, you will still get the same 5mg/day, but the concentration in your blood will remain more stable during the day and hence thyroid response will also be more stable, this will help stabilise symptoms as well, the body is a bit edgy at this stage and any wobbles are accentuated, so maintaining stability is very important.

[lordrio]

Well, I went to the endo today for a follow up after reducing my CBZ to 5mg (2.5mg x 2) for a month.

3 Feb 2014Free T3 3.88 pmol/L (2.62-5.70)Free T4 15.5 pmol/L (9.0-19.0)TSH       5.01 mIU/L (0.35-4.95)

My heartrate is on the high side, 90+ bpm, I don't get palpitations except when I sick and have fever, or feel like getting sick. I'm feeling a bit better, not feeling too cold anymore. I do feel abit hypER, but that might be just normal, since I forgot what normal feels like anymore.

 

The doc still thinks I'm overmedicated and want me to stop CBZ right away and see her in a month, and if TSH is still high and FT4 is not going up at that point she will add in T4 med. I talk to her about weaning it off, but she said 5mg CBZ is already the minimum dosage and I can just drop it off. Well at least this doc have the brain to say I'm over medicated when compared to the old one.

 

I guess I could just stop it and do a blood test in 2 weeks to see just in case I went hypER again.

[fireball]

 I'm not sure I would stop abruptly. I would be too worried about rebounding. Yes I think it is a good idea to decrease but the lowest I would go is 1.25mg per day. That way you can see if your FT4 rises. I'm sure a more conservative person would say to take 1.25 twice a day. ( carefully cut your pills into 1/4 with a razor or pill cutter...use up all the little bits before you cut more pills) Studies show that even a low dose like 1mg lasts in your blood for 20hrs.

 

 

I think it is time to get your trabs. I would need confirmation that I am less than 1  before I considered stopping and even then I would do a slow taper. I would also get a TSI if possible that way I could figure out if I had blocking trabs.

 

Is your heart rate always high? Or special times like when you eat processed food, seafood and alcohol? I could be because you are triggering it or that your thyroxine is too low. I would take this opportunity to figure things out while you are still very sensitive to foods. 

 

Going on thyroxine, I think is debatable. If you have blocking trabs or your FT3 and FT4  drop more than yes. If you believe that a low dose will further shut down your thyroid allowing it to heal more than yes a low dose will help. The studies are controversial. I hope others have more insight on this.

 

For me I went through so much to get to this point that I would want to make sure my remission is permanent. People who stay  in remission are aware of their dietary sensitivities, stop exposure to toxins and manage their life better meaning less stress. Stress or being too busy is the number 1 reason for reoccurrence.

 

Good Luck