Breathlessness and chest pain

[romyhorse]

I have a telephone consultation with my doctor on Friday and I am looking for some advice on what to ask. Apologies in advance for the essay!

ETA, I have Hashimoto's and am on a gluten free diet.

My levothyroxine has been increased from 50mcg to 150mcg in the past 2 years. My thyroid function results for that time are below:

June 2017 - increased to 75mcg levo

TSH 9.76 (0.55-4.78)

T4 14 (10-25)

Aug 2017 - increased to 100mcg levo

TSH 2.52

T4 17

Sep 2017

TSH 0.25

T4 21

May 2018 - increased to 125mcg levo

TSH 4.34

T4 16

Aug 2018

TSH 0.51

T4 19

Feb 2019 - increased to 150mcg levo

TSH 1.05

T4 19

I have never felt "normal" during this time, I always feel tired and find it hard to concentrate. This got worse at the beginning of this year and I was falling asleep for 2-3 hours in an afternoon. I went back for blood tests and was surprised when my results came back and they were okay, my TSH was above 1 but it's been higher than that before and I'd not felt this bad. I went to my doctor and she reluctantly agreed to increase my dose to 150mcg as my symptoms were so bad. Since the increase my exhaustion has improved but I have been suffering from breathlessness (I have been training for Manchester and London marathons and only feel breathless when I run) but I thought I might be coming down with a virus. I ran Manchester Marathon on Sunday, or at least I ran the first 5 miles then started suffering from breathlessness, I tried to push through and keep running but I started getting chest pains. I walked for a bit them tried to run again but the same thing happened. I did manage to finish using a walk/run strategy. So I have this telephone consultation with my doctor on Friday, it is regarding my cholesterol levels which I got checked 4 weeks ago and they were high. I know that high cholesterol is related to low thyroid, as is breathlessness and chest pain. Because my symptoms got worse when my levothyroxine was increased I think I need to get my T3 and rT3 tested. I have had my T3 tested once before, 2 years ago, and it was low but within range and I was told I would not be prescribed loithyronine unless I was in thyroid crisis. I do get my vitamin/minerals levels checked regularly and they are all good. And I should add that I've been running for years and have run marathons before, this is not something new for me. I have also been on Teva brand for about 6 months, I've told my pharmacist I want a different brand but have to wait till my next prescription is due so I was also going to ask my doctor if I can get a new prescription now rather than waiting. So if I ask for T3 and rT3 testing and switch from Teva is that a good starting point? Is there anything else I should ask?

[SeasideSusie Remembering]

I think I need to get my T3 and rT3 tested.

Good idea to get FT3 tested at the same time as TSH and FT4 to see how well you convert T4 to T3. NHS don't, as far as I know, test rT3 and don't bother spending money on a private test. There are many reasons for high rT3, one of them is high FT4 and low FT3 (poor conversion) but you can tell that from your FT4/FT3 results anyway.

High rT3 can be caused by many things, apart from poor conversion. You could have low FT4 and still have high rT3. It could be caused by low ferritin, or high cortisol, by an infection, by low-calorie diets, etc

Other conditions that contribute to increased Reverse T3 levels include:

Chronic fatigue

Acute illness and injury

Chronic disease

Increased cortisol (stress)

Low cortisol (adrenal fatigue)

Low iron

Lyme disease

Chronic inflammation

What I would suggest needs testing are thyroid antibodies:

Thyroid Peroxidase (TPO)

Thyroglobulin (Tg)

This will tell you if you have autoimmune thyroid disease aka Hashimoto's. This is where the immune system attacks and destroys the thyroid gland. With Hashi's, symptoms and test results fluctuate, this could be the reason for the differences in your results when on the same dose.

However, to compare results accurately, tests need to be done under the same conditions every time. When booking thyroid tests, we advise:

* Book the first appointment of the morning. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* Leave off Levo for 24 hours before blood draw, if taking NDT or T3 then leave that off for 8-12 hours. Take after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

Are your tests done like this every time?

I do get my vitamin/minerals levels checked regularly and they are all good.

Can you post these "good" results. Optimal results are needed when we are hypothyroid, and just being within the range isn't necessarily optimal.

If Teva brand was a problem, you would most likely have had adverse effects from when you started it, but it's worth trying a different brand to see if it helps.

[romyhorse in reply to SeasideSusie]

Thanks for your reply SeasideSusie. I did edit my post to say I have Hashimoto's and am on a gluten free diet but this must have been after you read my post. I do fast/leave off levothyroxine before my blood tests and all of the above tests were done first thing except the one in February this year (I normally get them done before 9am but the Feb ones was done at 11am as I was desperate for an appointment and that was all they had available).

I can't find my results for my ferritin etc (think my husband has been "tidying") but my vitamin D and folate are at the top of the range and my ferritin and B12 are getting there (I am on prescription iron and cyanocobalamin). I will ask for my T3, T4 and TSH to be tested, I am due to have T4 and TSH re-tested in a couple of months so will ask for it to be brought forward.

[SeasideSusie Remembering in reply to romyhorse]

I am due to have T4 and TSH re-tested in a couple of months so will ask for it to be brought forward.

If GP can't get FT3 tested with the others (and it's the lab which decides if it's done even when requested by a doctor), I would consider getting a private test with one of our recommended labs.

As you've now confirmed that you have Hashi's, then the Hashi's activity is going to cause fluctuations. Gluten free helps reduce antibodies in some people, some need to also be dairy free. Are you supplementing with selenium l-selenomethionine 200mcg daily as this is supposed to also help reduce the antibodies, as can keeping TSH suppressed.

[romyhorse in reply to SeasideSusie]

Thank you, if they won't test T3 I will order a private test, I'm in Scotland so if I don't know if that makes a difference. I used to take selenium but keep forgetting to order some more, will get that done.

[SeasideSusie Remembering in reply to romyhorse]

I don't think Scotland is a problem for either Medichecks or Blue Horizon

[Murphysmum in reply to romyhorse]

I’m in Scotland and have never managed to have T3 tested by the gp. Even when I’ve specifically asked for it 😢

[romyhorse in reply to Murphysmum]

I must have been lucky to get it tested last time!

[winjy]

I guess it is the side effect of levo. I have the same symptom.

According to some articles and study, levo keeps adrenaline and cortisol high. Cortisol gets low later after some period of time (a few years) and excessive adrenaline is released.You can even check this out with stopthyroidmadness.

In my case reverse T3 is getting higher and higher and T3 is not converted well.T3 was added and then dosage of T4 was reduced. T3 is also cortisol sensitive but symptom from T4 was a little reduced.

I got fast heart beat and irregular heart (test result) beat & anxiety(including internal tremor, stiff body, bad blood circulation) due to levo but could not take beta blocker so I am taking coQ10 and lorazepam. CoQ10 was created for chest pain customer as you know and it works for me.

[romyhorse in reply to winjy]

Sorry, I've been away for a few days and just reading this now. Thanks for your reply, I have a friend who suffered the same as you, her T3 was low and rT3 high. She was taken off levo and just given T3 and her symptoms went away, but now her doctor has taken her off T3 and put her back on levo and the breathlessness and chest pain has come back. It's so frustrating isn't it! I don't have a high HR, my resting HR has been 47 for a couple of years, I have been suffering from anxiety recently but I don't think it's related to my medication. I spoke to my doctor on Friday and she made me an appointment to see another doctor on Monday as she's not in till Thursday and thinks I need to be seen sooner. I said I think it's related to my thyroid and I wanted to have my T3 tested but she doesn't want to assume it's my thyroid and miss something else.