I have somewhat neglected my hypothyroidism over the last couple of years to concentrate on my more recently diagnosed Pernicious Anaemia, Bile acid malabsorption and atrophic gastritis.
I have been taking 100mcg Levothyroxine and 125mcg Levothyroxine alternating each day and that has seemed pretty successful. I have tried to keep up with the recommended vitamins and minerals to optimise my thyroid health but when I took a larger dose than usual of my iron tablets two days ago it was followed by a racing pulse whenever I lie down to sleep. Could these factors be related?
I do not know if this has anything to do with the iron tablets because when I was iron deficient some years ago I had a racing pulse associated with the anaemia but at that time my racing pulse occured when I was standing/being active not when I laid down.
It has been suggested that my poor conversion of t4 to t3 could be a factor in this but my recent hospital visit has proved useless when the doctor informed me that my TSH was very low, it needed to be about 4 and so I needed more thyroxine in order to raise my TSH!
This test was conducted completely inappropriately and without my knowledge.
Any advice please would be gratefully received.
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yorkshiregirl4
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Are you sure he was talking about the TSH? Taking more levo does not raise the TSH, it reduces it. And no-one's TSH should be 4! Sounds more like the FT3 he's talking about. And if the test was done without the appropriate preparations, it's best ignored, anyway.
I cannot tell you if your rapid pulse has anything to do with thyroid, but most things do, so if you are under-medicated, converting badly, I would assume that it is caused by your low T3.
Can you get properly tested so that you can see what's going on?
Hello Greygoose, Unfortunately the doctor was talking about TSH and it just goes to show how careful we must all be when receiving information from a badly informed doctor. And yes I was extremely ill before my TSH was as high as 4.
Many thanks for your suggestion to get accurate thyroid test results which I will do as soon as I can following a change in dose a short time ago, as recommended by SlowDragon. Many thanks.
Yes I did because I could not believe what I was being told. I was extremely surprised that any doctor would make those totally inaccurate comments and in fact the doctor also said that they never conduct ft3 because those blood tests are too expensive and therefore TSH is used alone there to check thyroid function!
My GP practice confirmed this too by informing me of a medication change on the back of the TSH blood test result.
I totally agree with you and I feel it is vital that these experinces are shared in order to allow other members not to fall into this sort of trap and to have their health woes further exaccerbated by inaccurate advice. Many thanks.
Do you always get same brand levothyroxine at each prescription
what vitamin supplements are you taking
As you are taking iron supplements
How long since you did full iron panel test
Need to test full iron panel at least 3 times a year when supplementing
Thyroid Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
What is reason for your hypothyroidism
Autoimmune?
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Thank you so much SlowDragon. I will now check if the NHS blood tests are as full of the results I know I need. I have used Blue Horizon before for thyroid bloods and will use them again at the correct time following change in dose. No wonder my iron test results were good just a day after taking a higher dose of iron!! It really is both surprising and disappointing that so many doctors give out inaccurate information with such confidence and confuse patients. Excellent advice that is very much appreciated and gives me a positive and well informed way forward.
I have now had a few days of symptoms of too much thyroid hormone, which has seen my heart rate fluctuate, feeling anxious and jittery and my insomnia worsen. This has only happened on one occasion before, in February this year, even though I have been hypothyroid for decades. I have been diagnosed with a number of autoimmune conditions in the last two years but not had a positive test for autoimmune thyroid problem.
I have read about other members autoimmune thyroid experiences but afraid I did not take much notice at that time because I had never experienced anything similar myself. Feeling somewhat improved now and had already taken onboard most of your recommendations although having difficulties absorbing some supplements. Will persevere. Is there any specific low supplement level that tends to trigger an autoimmune episode?
I am wondering when to take a private thyroid test after these last few days of reducing my Levothyroxine to cope with what I now believe was an autoimmune thyroid issue. I suspect the usual 8 week wait would be appropriate but confirmation would be helpful. Thanks.
when the doctor informed me that my TSH was very low, it needed to be about 4 and so I needed more thyroxine in order to raise my TSH!
This test was conducted completely inappropriately and without my knowledge.
The doctor's knowledge of the thyroid is appalling! As Greygoose has said he seems to have got it completely the wrong way round. And the TSH needing to be 4 would be utter torture for many people on this forum.
You might like to keep a copy of this page for any future appointments. Read the blurb before and after the graph too :
It shows you the TSH levels in healthy people with healthy thyroids, and you can see that the most common results for the healthy are around 1 - 2 with the most common value being 1.25, NOT 4.
But people with hypothyroidism aren't healthy. And they often take their thyroid hormones in one big dose, once a day, and doctors then expect the TSH in us to match the TSH of people whose bodies produce TSH in tiny spurts throughout the whole 24 hours a day. And they expect the TSH of hypothyroid patients to be the same as that of healthy people. I can see no justification for that conclusion at all!
Hello humanbean, You clearly share my utter frustration when doctors share their lack of knowledge as if whatever they say is actually true and valid. There is no wonder this forum is so very busy with us seeking helpful, accurate advice and assistance from the people who really know ..... fellow patients. I have found your comments really useful and had never considered that we do take thyroid medication in one dose as compared to healthy people whose bodies produce theirs in tiny spurts.
I now have a completely inaccurate result for TSH and t4 on my medical notes from the hospital doctor which my GP is using to alter my medication dose. Can you believe it!!! I would not normally have allowed that blood test to be carried out at all less than 18 hours after my regular dose of levothyroxine plus subsequent iron tablets and some five hours before the recommended time for these blood tests. Having received such helpful advice from this forum I will now organise a private blood test and get some proper data to allow me to manage my health better. Many thanks for your reply.
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