Hi, recently diagnosed hyperthyroidism. On 40 mg Carbimazole per day, and 60 mg Propranolol. I've been on this for a month (wrong dose to begin, correct dose now for a week of the Carbimazole). I'm still getting out of breath/heart strain on basic exercise like walking from A to B, or tried to do small bit of yoga today and caused issues. Finding this the most frustrating aspect of it all, and aware heart injury/failure is an issue if untreated/over do it. Can anyone give me a sense if this is normal at this point, or if I should be asking doctor for a heart scan of some sort? I'm finding the GP and Consultant advice conflicts and is also not clear on this aspect. Thank you in advance.
Update:
Now have my various levels from blood test of 24th Feb:
T4 - 32.1 (down from 61.6 which is was on 31st January)
T3 - 10.6
TSH - 0.01
I understand the T4, but not the others, but according to the Endo doc - the TSH is still suppressed. Also stated Graves antibodies were high, then low, so inclusive to Graves at this point.
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Mancunian_C
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So we can offer better advice, can you tell us more about your thyroid condition, eg any other ongoing symptoms apart from breath/ heart issue mentioned, plus blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
I do not have any of my test results and no idea if there were wider tests, e.g. vitamins.
Endo at hospital sent letter to my GP stating my FT4 was 61.6 when tested at A&E at end of January and stated that is very high.
Last week's blood tests included FT3 and TSH, and no idea what those are!
It has been quite ad hoc and hit and miss and I only got Endo appointment by going full scale complaining.
I had to go to A&E and that was where I was diagnosed on 31st Jan. I was told I would have to wait 6 months for endo appointment, and I wasn't even on the waiting list by mid-Feb for that.
I was on 30mg for 3 weeks, then 40mg for 1 week so far - that's Carbimazole.
The 60mg of Propranolol is across 3 x 20mg a day.
I am unlikely to be able to provide any of the information you requested as NHS does not like to give that to patients freely. I have submitted SAR to the hospital for last week's blood tests. I did put one in to my GP for the A&E test results but they haven't bothered responding.
No one initially tested for Graves, so that was picked up and tested for last week. Endo promised call back this week, which has not happened, so chased that today and left voice message.
GP said exercise as normal. Endo said no as there is risk for heart failure. It's that kind of conflicting information that makes me not trust any aspect of this system.
I left going to my GP for too long as I had a bad flu in Nov/Dec with chesty cough and assumed the breathlessness and shaking was down to that. I should have acted back in early December, so kicking myself that I may have heart damage as a result and totally freaked as didn't realise heart failure was a risk.
I'm learning as I go at the moment, so great this group exists, and thank you again for reaching out. Much appreciated.
You are legally entitled to a copy of all blood test results, but may need to give your GP practice time to provide this. I would 100% push for this information and share with us in a new post.
Are you monitoring your current heart rate/ pulse? Have these improved on your current medication?
I have improved heart rate wise as on the week before I went to A&E, even briefly mopping the floor left me out of breath. I can now function around the house as norm, and walk around supermarket without feeling like I'm dying, so there is improvement but not the rate I would like as I really like to get outdoors walking.
Swallowing was an issue also before medication, and that is improving. Still not 100% right, but improved.
I have not been monitoring heart rate electronically/by a device, and not sure what the best method is (all suggestions welcome). I do have an oximeter somewhere if I can find it (the device you put on your finger to measure blood oxygen and it has heart rate function), and not sure if that is a good method/device to use. I've looked on Amazon but seems to be a varying range of products.
Checking your heart rate is simple. Count the pulse in your wrist for 15 seconds then multiply by 4. That is your pulse rate which usually is the same as your heart rate.
If it’s very slow or you have skipped beats, you may need to count for 30 seconds or a full minute. This has clear pictures: mayoclinic.org/how-to-take-...
Personally I like to have a blood pressure machine at home, as mine always rises considerably at the GPs (white coat syndrome). I bought one relatively cheaply from Amazon (Omron) that had favourable customer reviews and it works well. Others may have different models that also work well.
Some members like to use FitBits etc to constantly check on pulse. However, I stopped wearing mine as I was becoming fixated on checking it, so it was counter productive!
I think blood pressure confuses me as I haven't got a clue about what the measurements mean, so may opt for fit bit or similar. I just wish the GPs/Endo docs would suggest/recommend as I find this entire thing a stab in the dark.
Hi Buddy, I now have some numbers from Endo doc this morning, and posted in my original. T4 is almost half of what it is a month a go, which is good, and the other numbers of which I'm unsure show TSH still suppressed.
that's all the Endo doc gave me over the phone. I've put a request in for my blood test results in full, and the Endo doc said she sent a letter to me and my GP, so that hopefully may have the ranges in it.
It's a learning curve!
Yes, the FT4 has more of less halved, and that's with being on the incorrect dose of Carbimazole for 3 weeks of the past 5. It will get there eventually to where it needs to be, but I lack patience.
I understand the desire to speed things up in a bid to feel well, but from experience have found ‘low and slow’ approaches are more beneficial to my overall health. I tried eliminating gluten, dairy & sugar at the same- big error, as I couldn’t work out which was beneficial after a 3 months trial!
Remember to put any further questions/ updates in a new post, as this alerts more members (ie some people just look at new postings for the day etc)
Thank you. I've got coeliac and allergic to milk, so appreciate giving them up in one go is a challenge. I'm wedded to sugar and know it needs to go. Hey ho, you're plodding along nicely, and the universe wallops you with a whacky thyroid.
An FT4 of your level you mentioned is extremely high. Hopefully carbimazole will start to bring that down. But it will be gradual.
I have found a fit bit and BP machine helpful. A record of heart rate can show a correlation with levels I've found. Although other factors can be Involved. I measure BP is & record results manually. You soon get to understand what it means. Having some reading will be good starting place.
Your body is under a lot of strain at the moment. Id put exercising on the back burner and focus on ways to relax and de-stress. Are you working / busy? Taking time off might be best.
Hi, thank you. Seems FT4 now half of what it was last month, which is good, but still high.
I asked the Endo doc this morning about the heart issue and she seemed to not have conclusive answer, and surprised I'm having palpitations still, but she said Cardio doc won't look at this until thyroid back to normal. I'm still worried, so will go back to my GP.
I think a FitBit is probably a good option for me as I'm not techy or medically tuned in, so something that gives a running measurement and record will be best.
There is nothing on your Profile page - so to help you better at least share your age, sex, and health history if there is one.
High over range thyroid hormone levels are associated with 2 Auto Immune disease - Graves and Hashimoto's - these can both start off the same way - but are not treated the same way - and why we need to know which antibodies were found positive in your initial blood test and which is the evidence and proof of the diagnosis and generally needed before medication is prescribed.
If you do not have any obvious physical symptoms of a swelling around your neck area or trouble breathing or swallowing we are likely looking at either, or both, of the above mentioned AI diseases.
With high levels of thyroid hormones there can be something of a brain / body mismatch in what you think you should be doing - with a brain in overdrive - but with a body likely totally exhausted sitting on the sofa with no get up and go - and exhausted holding a cup of tea.
Your body is in a ' heightened ' state so please accept where you are and that you are not well and rest as best you can.
Hopefully the Anti Thyroid drug Carbimazole will soon take effect and off set some of your symptoms and the beta blocker Propranolol will also slow down your thyroid hormone conversion and protect your heart better from presumably the palpitations being experienced.
There is an alternative AT drug - Propylthiouracil -PTU - if Carbimazole doesn't suit you - please read the instructions regarding the AT drug -
All the AT drug does is ' buy you time ' and semi-blocks your own new daily thyroid hormone production while we wait for your immune system to calm back down again and your thyroid hopefully reset itself without the need for any drugs.
Please register for online access to your medical records as we need to know your blood test results at diagnosis to help you better understand what is going on and the antibodies found in your bloods that determines your diagnosis and treatment going forward.
Thanks for the prompt to complete profile - I'm female, 51, with good health history but have coeliac which I'm aware can be common precursor to thyroid issues.
The Carbimazole is working out ok so far.
Neck is swollen, but not massively. I had significant swelling issues which are easing up.
The Endo Doc told me the antibodies were high for Graves, then low for Graves, so she was unable to make the call on that. From what I've read on Hashimoto, it doesn't fully fit the bill for that. I did have a bad covid-type flu and I would swear that kicked it off, but I'm not medical expert. No family history of thyroid problems, and I'm from a large family with many cousins and only one has an overactive thryoid.
Yes, will register for access to medical records - are you suggesting via hospital or with my GP.
I 'm not aware you can track results from the hospital website -
I was referring to your primary care doctor -
Please confirm which antibodies are positive and going up and down -
TPO or - TgAB or - TRab or - TSI - or is the endo talking about TSH Thyroid Receptor levels and ranges ?
TPO and TgAB are likely Hashimoto's with Graves being expressed as 1 of these other abbreviations - and when the thyroid malfunctions it's possible for both these AI diseases to be present -
but if with Graves I'm not aware of the antibodies swinging around and Graves abs are generally low suppressed and stay low suppressed -
Graves treatment takes precedence as Graves is considered life threatening if not medicated - with the medication being an Anti Thyroid drug.
I know it's frustrating but this is a long road and you've just started. I was on the same dose of both as you to begin with. It took months for my heart rate to return to normal, and months longer for me to be comfortable exercising.
You need to take it easy and give the medication time to work. Your body is going through a huge adjustment.
Have you had your vitamin levels checked? Getting these to good levels helped everything. I recommend some private blood tests, to include the B vitamins, Vit D, Ferritin, and Folate at least. Then it'll take some trial and error to get the right supplements.
All in all, it took around a year for me to really feel better.
I haven't had vitamin check for this, but aware my ferritin is low on an ongoing basis. I do take extra vitamin D during winter, and my B vitamins are an unknown issue. I will take your advice on having those checked.
Just confuses me as to where this all came from so suddenly - seems to have gone from zero to hundred miles an hour very quickly, as my thyroid was last checked about 12 months ago and entirely in mid-normal range. I'm blaming a flu I had, but no idea if that was it.
A year is a long time to get back to normal! It's a slow road.
The vitamins being in optimal range will help you feel better in numerous ways. Do work on it and continue to listen to your body and rest in the meantime.
You'll likely never know what caused it but it doesn't matter, as long as you feel better. You'll get there. Good luck x
you can have access to all your blood results etc if you use the NHS app. Its amazing, I get the results before my GP so am ready for all the discussions. Any test you have ever had or medical letter from endocrinologist or consultant is stored there for you to see.
I haven't had vitamin check for this, but aware my ferritin is low on an ongoing basis. I do take extra vitamin D during winter, and my B vitamins are an unknown issue. I will take your advice on having those checked.
With coeliac you should get these tested via GP at least annually
Low ferritin is more often linked to Hashimoto’s (hypo autoimmune). More usual to have high ferritin levels with Graves’ disease
Essential to test B12, folate, vitamin D and ferritin levels now
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Recently diagnosed with hyperthyroidism 
Graves disease, confused.....
Recently diagnosed with Hypothyroidism
Recently diagnosed with hashimotos but need some advice/help
Help - T4 low & TSH rising whilst on Carbimazole?! Is this normal?
