I am new here. I was diagnosed in April this year as Hypothyroid, my TSH was 5.01 and T4 13.5. I was put on 50mcg Levothyroxine (Actavis). All was going ok until 2.5 months in, whereby I developed a shortness of breath, naturally this worried me and hence got myself to the docs, as I thought I may have been having a reaction to one of the excipients, the patient information leaflet did state breathlessness as a side effect. All my vital signs were taken. I was told everything is ok, blood pressure great at 126/79, blood oxygen 99% etc. I was then told I was having an anxiety attack, which I felt hard to believe, prescribed an SSRI and went away. I only took 2 of those pills, never again, stopped them straight away as that made me worse.
I then started to research my condition, thanks to this forum and ThyroidUK, all fantastic. The reason I believe I have shortness of breath is due to a resting pulse rate of 57, it always used to be higher i.e. more in the normal range for a man (66). I am not an athlete or fantastically fit, so researched Bradycardia, now I also know that Hypothyroidism can cause Bradycardia according to the research I have done and also vitamin B12 deficiency cropped up as well. I have had an ecg, all clear. I therefore decided it was time to have a private blood test as the last NHS showed my TSH had dropped to 2.68 but my T4 was still only 13. I had a serum vitamin B12 test done on the NHS as well, the result was normal at 321 ng/L range [180.0 - 800.0]. Below is the latest results from Blue Horizon. The vitamin B12 is of a concern as this is actually showing as low (deficient), it was serum and not the active test, whereas the NHS test a week previous stated normal, but I would still have said it should have stated low.
Test results Blue Horizon, my result followed by range and units:
Can anyone assist with understanding these more, as I have been told to stop the Levothyroxine for a month or so to re-baseline, before restarting again after a further blood test. Due to the half life of the tablet, it takes a long while to get out of the system, also my TSH is still markedly dropping, so something is still working. There was a further comment on vitamin B12, "consider reducing dose >725", I don't understand what that means. As of yesterday I have started to supplement my B12 with lozenges 1000mcg a day, should I be doing this, my diet is almost vegetarian, gluten, wheat and dairy free, only eat chicken and some fish. My next appointment with the doctor is three weeks time, cannot seem to get to see him before then.
Any advice greatly appreciated.
Written by
SteveM
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Hi SteveM Using your Blue Horizon test results, you need more Levo. Generally the aim of a treated hypo patient is for the TSH to be 1 or under or wherever it needs to be for FT4 and FT3 to me in the upper part of their ranges.
Your B12 is very low at 201. The Pernicious Anaemia Society recommends 1000. In your position I would be increasing your lozenges dose to 5000mcg daily for a couple of months to give your level a boost and then dropping back to 1000mcg daily. The Blue Horizon comment of if your level is greater than 725 then reduce dose (of supplement) is not what the PA Society recommends. We generally suggest sticking to the level that the PA Society recommends.
While taking B12 we should also take a B Complex to balance the B vits. Thorne Basic B or Jarrows B Right both contain 400mcg methylfolate which will boost your lowish folate level, it should be at least half way through the range (26).
After diagnosis and being prescribed Levo, your GP should have retested after 6-8 weeks and increased your dose (if necessary), then retested again after another 6-8 weeks, adjust dose, etc.
Actavis may not possibly suit you, due to the side effects you have mentioned, there are other brands you can try to see of you get on any better with them. As you've visited ThyroidUK's main website you might be familiar with their Treatment page which lists the different brands and their ingredients. You could ask your GP to stipulate one of the other brands to try or ask your pharmacy if they will get it in for you.
It would be an idea to get your Vit D tested as well, just to complete the picture.
Optimal levels of vits and mins play an important part in thyroid health and thyroid meds being able to work properly.
Hi SeasideSusie many thanks for your response, much appreciated. I am seeing my GP in three weeks, therefore I shall ask to go back on the Levo then, as it was my suggestion to re-base line. The GP always says three months for blood tests, but I have read and you have so rightly pointed out that it should be quicker than that, he did state that as my TSH had come down from 5.01 to 2.68 that he would not like to increase my dose, but he did mention about testing for T3 next time, I have saved him the bother of that. I shall present my results.
I am supplementing B12 with Jarrows Methylcobalamin 1000mcg, I will look to get the 5000mcg and also the other B complex for folate. He did also mention to speak to the pharmacist about changing manufacturer, it may just have to be another chemist as I use Boots, but worth asking them first.
If you are still on 50mcg of levo, I'd suggest that too low a dose is the cause of breathlessness.
We are now given too low a dose usually these days as most doctors believe keeping the TSH 'anywhere' in range is fine when it isn't. The aim when on levo is a TSH of around 1 or lower and some of us need it suppressed.
One doctor now deceased wrote to the BTA/RCoP etc stating that nowadays our dose is too low when it used to be around 200 to 400mcg. Excerpt:
The Royal Society of Medicine’s reply to Dr Skinner’s repeated request for a conference to address this problem was to organise a conference on thyroid disease and refuse Dr Skinner’s request to speak on his experience in diagnosis and treatment of hypothyroidism. The only Royal College which sent a representative to speak at the World Thyroid Forum organised by Dr Skinner in 2012 was from the Royal College of Obstetrics and Gynaecology to speak on fertility problems in hypothyroid patients.
Dr Skinner vigorously opposed certain aspects of the UK Guidelines at the time they were being formulated and lodged his ‘Document of Record concerning UK Guidelines for thyroid function tests’ in 2005 with all the Royal Colleges, National and Local Health Organisations, the British Medical Association and tried with the Society for Endocrinology who rejected it. He also wrote to Dr G H Beastall, Secretary, Guidelines Development Group, British Thyroid Foundation in 2005 to comment on the pitfalls in the proposed guidelines.
It is disappointing that Dr Skinner’s medical colleagues have been and still are behaving like bullies in a playground forming their gangs and stopping all others from engaging with doctors they have chosen to cast out of their inner circle. Sadly, they have neglected their duty in caring for these patients resulting in a serious shortfall in their medical care leading to unnecessary suffering and years of mental and physical ill health.
Hi shaws agree, before I went on Levo I was ok, it was 2.5 months in it developed. By the time I see my GP it will be about 10 weeks having been off it. It is to prove a point that the Levo is causing me the issue, as it is gradually getting better as time goes by. I will try a different manufacturer once back on. your response is a very interesting read.
Levo doesn't agree with everyone but it does take us time to work that out as it is the only one prescribed and GPs hands are tied. It's not until we do some research we find that there are other thyroid hormone replacements but the NHS rarely prescribed.
It's most likely to be your B12, as that result is far too low. It needs to be over 500 to prevent neurological damage. But it could be because you are still undermedicated - most people feel well with TSH under 1 and Ft4 and Ft3 in the top quarter of their ranges - your FT4 is rock bottom of the range.
Thanks Angel_of_the_North , I am about to start 5000mcg lozenges for B12, the last couple of days I was using 1000mcg, hopefully that should give me a boost, then wait to see how my GP responds to my last set of results in a few weeks time.
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