Is There A Relationship Between Thyroid Hormone Problems And Pots?

[lynnie22]

I have no thyroid. I had it out six years ago because of cancer and have been on synthroid ever since. Since out, my T4 has been very high, with a normal TSH and has never been able to convert properly to T3 which has gotten lower and lower. My endo says I'm his only patient with this problem. As my conversion got worse, in came the POTS, at least so I was aware of it.

I know there has been some reference to thyroid problems here, and to Armour which my endo has finally and reticently decided to switch me to.

I know that pots has a hormonal component -- and wonder on the correlation between my body's inability to recognize and convert T4 properly and its autonomic dysfunctioning.

I was wondering if anyone else had a similar problem, or knew how they affect each other.

Thanks for your input!

[arizona girl]

Hi lynnie,

You are correct abnormal thyroid function can cause a high heart rate. Before pots is diagnosed it is one of the conditions that should be ruled out. I still have my thyroid, however recently tested positive for autoimmune thyroid disease with a normal tsh. So a normal tsh does not rule out abnormal thyroid function. It would be interesting to know if you could also have positive thyroid antibodies tpo/ab, since your thyroid is all gone. Other signs of abnormal thyroid function are a rise in your cholesterol/lipid panel that is not related to diet, weight gain, dry hair and skin, high heart rate, etc.

Since you require replacement due to loss of your thyroid. I think synthroid is the normal treatment course. There is a something called a reverse T3 test. If this ratio test is wrong it shows that your body is not able to convert the t4 to t3. So what you are describing can happen. You do feel worse when when ft3 and ft4 are at the opposite ends of their ranges. I did when that happened to me.

Your endo did check your free t3 and free t4 right? These test measure the actual active thyroid hormone levels. Regular t4 and t3 are the total amount and useless. After we started treating my hashimoto with synthroid, I had the same labs you have ft4 at the top and ft3 at the bottom of the range. When this happened I had more hypothyroid symptoms then before the synthroid.

For optimal thyroid function they should both be towards the middle of the range. My endo and I are currently trying to do that with me. We reduce my synthroid to .25 and then added in two 5 mcg of cytomel. That stopped the thyroid worst of the thyroid symptoms, but I still didn't feel right. On retest ft3 and ft4 were in the lower part of the range and my tsh was now at the bottom. With those numbers we stopped the synthroid and I am now working up to 3 5mcg pills of cytomel/t3. So we are getting there. My endo did not want to put me on armour as she was concerned with my autoimmunity it would trigger another autoimmune attack. Thus the synthetic cytomel, which seems to be working just fine for me.

So, I am on t3 replacement only, of course there may still some tweaking that needs to be done. Also another thing I found out is that I had to take the brand names of synthyroid and then cytomel as the generic forms are often poor quality. I think armour is brand only, so I you don't need to worry about that.

So yes you can be hypothyroid with just low ft3. It isn't common but it does happen. I said to my endo isn't that unusual? She said well it's not common but I have 3 other patients like you. Oh by the way I also tested positive or homozygous for a gene defect called mthfr. When this happens your body has a switched enzyme that does not allow you to convert folic acid to the active form the body uses called methylfolate. That is considered a conversion issue and my explain why t4 wasn't working for me. So conversion issues do happen. I hope my story helps you out. After starting armour and you do your next set of labs, if they and you haven't had the improvements your looking for maybe, you go to just cytomel, but you will need to discuss that option with your doctor.

I'm still tweaking so I'm not sure what I will be at once we get it right. Good luck and take care.

[margiebee]

I have always been very curious about this. I had a partial thyroidectomy to remove a nodule around 5 years ago, it was benign. They left another small nodule in the other half because they did not want to remove my entire thyroid. I have my levels, TSH along with T4 and T3, tested fairly regularly, every 6 months or so, because every doctor except for my POTS doctor has been convinced that thyroid function is my problem. My tests related to my thyroid are always completely normal though. Like, not even a little out of the range. Perfectly smack dab in the middle normal.

I guess mainly everyone has always been surprised that my throid is functioning so well seeing as I only have half of it. But I also wonder if it has anything to do with my symptoms. I definitely had symptoms before the surgery, so it doesn't completely coincide with the onset, but my symptoms have gotten continuously worse more or less.

[lynnie22]

Thanks. Arizona girl, your details were very helpful. To answer your questions, my FT4 is always a couple of points above the normal range, and my FT3 is below the normal range. My TSH however remains within normal. I do not know if my symptoms are hypo or hyper to be honest -- I am anxious, tired, shaky, sleepless, with of course tachycardia upon standing (the POTS), and have never felt right since being on synthroid and since the T4 has been 14 or so, 11 being high of normal. I hope the armour does not cause an autoimmune reaction as you were warned, not sure how much POTS is related to autoimmune dysfunction. Armour contains all the missing thyroid hormones, like T1,2,3, and 4, since it is taken from the thyroid of a pig. I do not know if any of the tests you mentioned were done. That would be interesting.

One of the pots doctors here said in passing that once one gland goes, they are all susceptible, meaning without a thyroid, the adrenals would easily go out of balance and set off some of the autonomic dysfunctioning possibly.

I am glad to hear that I am not the only one in the universe with a conversion problem. I was on a thyroid site and NO ONE there had this issue either.

It is interesting that you have been taking off T4, and now only on T3 (cytomel). How are you doing?

Margie, what makes the doctors think your thyroid is the problem when your readings are so good? I know you only have half a thyroid but it is obviously functioning quite well....although I would question it too.

[futurehope]

Lynnie22,

I, too, have no thyroid. I had mine out for cancer 41 years ago and I am totally dependent on exogenous hormone. I was diagnosed with POTS in 2002. I was diagosed with MCAS in 2012.

I know exactly what you are talking about with the FT4 being at the high end of normal, the FT3 falling to the low end, and the TSH all over the place. I have seen three different endos because of this. One allowed me to experiment with exogenous Cytomel. I won't go into everything I tried, but I found no benefit.

Surprisingly, after pursuing answers for why my FT4 and FT3's did not match, this past test I had three months ago, everything turned out perfectly fine.....for the first time in years. And......I have no idea why?! Maybe it is because I now exercise 5 days/week. Maybe because I'm taking many antihistamines for MCAS? I really have no idea. But I personally hit a dead end with "correcting" by falling FT3, and mercifully, it corrected itself.

We are at the mercy of the exogenous hormone, and as such we are at a decided disadvantage when our bodies do not convert the T4 to usable form. I do believe it affects us adversely. Having my hormones more normalized has not cured me of anything I have though, as all my complaints are still present.

I wish you better health and better days ahead. I can relate to your issues.

[lynnie22]

Thank you futurehope. It is good not to feel alone. It's so strange when we don't know why things are suddenly normal.

But good for you! I certainly hope whatever you are doing, it just keeps working.

I'm sorry though it didn't change everything else -- maybe in time it will help.

Since my thyroid was removed, things have just been very frustrating. I am nervous to be honest about taking the armor, my endo keeps warning me that it could cause palpitations or make my pots worse....so he has made me anxious! But I'm trying not to listen. After six years of abnormal readings and feeling lousy (whether nor not it's thyroid hormone related) I want to try something else.

How do you find the exercise program for yourself? I can hardly do anything, I am always so tired. I know however it is really important.

[julieph85]

I have a borderline low TSH (but still just normal right above the cut-off), normal T4 and a very low abnormal T3. I've been to a few doctors including 2 endo's about that T3 and they all tell me it means nothing and as long as my TSH, T4 is normal, and i have no antibodies, it is just incidental. That feels wrong to me. I believe in my heart my pots is some how related to thyroid dysfunction. I'm hyper pots and your thyroid regulates your bodie's sensitivity to adrenaline. I am extremely over sensitive to my adrenaline. Also, how can a very low T3 be normal? Not to mention my Dad has Hashimoto's.... it's all very confusing and frustrating. They also always refuse to do the reverse T3 test. They say if my T4, TSH is nomal, there is no point.

[margiebee]

I think that with my strange assortment of symptoms, doctors always thought that it must have something to do with my thyroid because that was the only thing remotely "wrong" with me by their standards. But I do still wonder if it could play a part in it, I don't have the T4 or T3 tested as regularly

[futurehope]

Lynnie- for exercising, I had done Dr. Levine's exercise program. It is 3 months long. I then continued exercising. I do 45 minutes/day at 3.5 MPH on the treadmill. If I cannot go to the fitness center, like today, I walk around my house for a while.

If I had paid attention to my tiredness for the past 14 years, I would have done nothing at all. I am always tired. Nothing new there. Actually, I'm frequently exhausted.

I feel like I cannot give you any advice as to what to do because everything I did, I had a doctor behind it who had tested me and monitored my progress. I had heart tests before beginning, for example.

Some thoughts: I did experiment with a compounded Cytomel (without the additives) that had a "time release" chemical added so it would not be in my system all at once causing heart palps. So, I really did try everything for one half a year. It fixed nothing, and caused me diarrhea. So, I stopped it.

Also, take your hormone on an empty stomach away from calcium or antacids or other medications. I'm sure you know that by now. Everything we take, supplements, meds, estrogen, can affect our use of the hormone.

Also, I will only use name brand Synthroid. The others I do not trust.

Believe me, I was very upset that my FT3 was at the low end, and my FT4 was at the high end. I felt terrible as well. I still do. I also suffer terrible hair loss.

I do not have any answers. I just wanted you to know how much time and energy I put into experimenting with this with no results. Apparently, whatever else is malfunctioning in my body, it is affecting my use of thyroid hormone as well. Dr. Afrin , my hematologist for MCAS, thinks my MCAS plays a role in my body's problem using Synthroid. Who knows? It is all very frustrating.

[lynnie22]

Hi All,

I wanted to respond to your posts alittle. Futurehope, your post about exercising despite exhaustion has encouraged me. Thanks. I have this crazy work schedule that involves hours of sitting. It seems I never have time for me....but I guess it's good my job is sitting since I can't stand easily. But still terrible for my pots and general health. I have a recumbent bike at home which I use way too infrequently. Yes I have always taken brand synthroid, but my numbers have gotten more and more out of whack, so I will try Armour and see what happens. I don't know much about Dr. Levine's program. I have a feeling I'm hardly in shape for it right now.

You really have tried a lot -- but sorry it hasn't yielded results. It is frustrating.

Julie, I personally think your T3 should be normal, it is what the body uses after all. My own endo was trying to explain to me that the numbers at the cellular level may be totally normal even if the blood says otherwise. But he then said if I don't feel well, then we have to keep trying to adjust it.

So maybe there is a relationship between pots and our thyroid hormones. I did the reverse T3 test which was abnormal. Why won't they do it for you, Julie? Of course the fact that it was abnormal still didn't change anything.