I just spoke to my doctor and my recent results showed that my TSH is 9 point something despite being on 150mcg of levo per day. She said to repeat in two months. Blood test was taken at 5.45pm with last dose being about 22 hours before. She said to repeat the test in two months.
I recently came off T3 (end of Jan) that I was sourcing myself after being told it caused a heart attack (I’ve posted before). It was <0.005 then. Is the high TSH a sign that I’m not converting T4 to T3 or just that I need more T4 due to high BMI? Levo has never done anything for my symptoms. I’m considering getting the test for the faulty gene in hope that NHS might prescribe me T3. Is TSH likely to go down with a higher dose or T4 even if I’m not converting?
I’m going to get a full thyroid panel done myself once pay day arrives.
Thanks
Melissa
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DownAndDesperate
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Is the high TSH a sign that I’m not converting T4 to T3 or just that I need more T4 due to high BMI?
It's not necessarily a sign of anything. Could just be a laboratory blip. To know if you need more T4, you need to have your FT4 tested. And to know if you're converting or not, you need your FT3 tested at the same time as your FT4. It could be either or a combination of the two. I'm afraid TSH alone does not 'tell you everything you need to know', as doctors think. It tells you precious little because there are so many variables that can affect it. So we won't know what it does tell us until you get your private results.
Thanks for your reply. I know that it doesn’t tell us a whole lot, I guess I more wondered what the doctors would conclude from it since it’s the only test they’ll do. 🙂
I doubt they would conclude anything - they don't do much in the way of concluding. They'd probably just give you an increase in dose and think no more about it. They just don't know that much about thyroid and have little idea how to interpret blood test results at the best of times, and with only a TSH to go on...
No, they don't. About the same as GPs, really, except they believe they know it all because they're endos. But they don't get any extra training on the thyroid because they're almost all diabetes 'specialists'.
and noticed the long list of your health interests. If that is a true representation of all your health issues then I don't know why your doctors picked on your thyroid treatment as being to blame for your heart attack when it could have been so many other things.
Blaming your heart attack on your T3 is suspicious. Low T3 is often considered to be more dangerous for the heart than slightly over range T3. Do you have the results of your TSH, Free T4, and Free T3 at the time of your heart attack?
Some links that you might find interesting and/or relevant :
I don't know much (or anything) about some of the things you've listed in your health interests. I would have guessed that your Antiphospholipid Syndrome gave a greater risk for having heart attacks than low TSH. Isn't it a clotting disorder?
Then there is B12 deficiency. In this link of symptoms
Thanks for your very thorough reply! The list is reflective of my long list of conditions. I also believe I have POTS but they’re being very slow about looking into that. I plan to do a bio with conditions and latest results when I have access to them.
Yes, that is exactly my thinking! Which is why I’d like to go back on T3 or start again myself if need be. I believe that, since I was self sourcing, that they chose the option that put the blame on me. I was told that my TSH was suppressed so I was taking too much T3 and that caused thyrotoxicosis which caused the heart attack. I was only on two tablets which is a relatively low dose. I have requested my full hospital records and I’m waiting on a response from that as my GP has said that they don’t have access and PALS have ignored everything I’ve sent. The tests were taken just before the heart attack as I had an Endo app (they picked up on my very high heart rate and I had the heart attack on my way home). I told them about the T3 at the app and asked to be put on it through NHS, they said no but yes to monitoring so I’m hoping they took a full panel because of this.
I spoke to APS Support UK and they think it is likely that it was caused by that, which is what I think is the case given my age (38) and strong family history of blood clots. I’ve read recent research and articles that suggest that minute blood clots that can not be seen on standard tests could cause a heart attack. It doesn’t seem to be related to thickening of the arteries or heart disease in any way as they didn’t see any evidence of this on the scans - heart function was fine and ECG didn’t show AF which I would think it would if it was caused by T3. I’ve had heart palpitations for years (which I keep telling them and they’ve ignored) and if anything the T3 improved this (I could shower again without wanting to faint/vomit).
You’re correct - several of my conditions increase chances of heart attack. Including PCOS. The APS people suggested a referral to a specialist and said they would be able to look into it. Doctors won’t do it via econsult for some reason and getting an appointment is a nightmare and I have about 10 things that need discussing. I’m booked in for a scan on my liver now because the results were three times as high as they should be, apparently. And the statins they gave me after the heart attack have shot up mu blood sugar numbers so I’ve been diagnosed as diabetic. They haven’t prescribed blood thinners for the APS though.
The above two things are far more likely to cause palpitations than a low TSH. They are the reason why your Thyroid Function Tests results on the day of your heart attack are so essential for you to know.
How much T4 and T3 were you taking?
Oops - I posted before I had finished.
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Low iron can cause palpitations. Doctors will usually only test Ferritin (iron stores), but getting serum iron, transferrin saturation, TIBC (Total Iron Binding Capacity) , and CRP tested is also a good idea. Ferritin and iron can both be high, both be low, or one high, and the other low, and depending on the combination of results it can tell you different things about your results.
Low iron and/or ferritin can cause anaemia. So can low B12 and/or folate. Note that anaemia is usually diagnosed by GPs by testing a Full Blood Count. If Haemoglobin is below range they diagnose anaemia. People can be deficient in iron/ferritin/B12/folate without anaemia - but the deficiencies need to be treated anyway.
See the NICE guidelines for these forms of anaemia here :
And the statins they gave me after the heart attack have shot up mu blood sugar numbers so I’ve been diagnosed as diabetic.
People who are hypothyroid are not advised to take statins, but since you've had a heart attack I doubt doctors would pay attention to that. But here is where the NHS says to avoid them :
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
The fact that statins have pushed your blood sugar up, does that mean you only became diabetic since taking them? Because diabetes is itself a major red flag for developing heart disease and/or having heart attacks. I'm no expert on diabetes though, so you would need to research diabetes and statins yourself. Or you could ask on a diabetes forum. This is the best one I know of, and you could ask for help on their forum :
50 mcg T3 is really quite a high dose. It was silly of the doctors (in my non-medically-trained opinion) to have removed your T3 completely but they could have suggested reducing the dose.
I've lost track of whether you have got results of a TFT (Thyroid Function Test) on the day of, or since your heart attack.
Normal ferritin levels for women are between 20 and 200 ng/mL. According to some experts, ferritin levels of at least 40 ng/ml are required to stop hair loss, while levels of at least 70 ng/ml are needed for hair regrowth. The optimal ferritin level for thyroid function is between 90-110 ng/ml.
Note : ng/mL are exactly the same measurement as ug/L.
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Folate - serum 3.59 ug/l (>3.89)
Among other things, folate is required by the body to help it make use of B12. Your level is below range. Ranges with no upper level are useless in my opinion. We usually suggest getting your level up to 15 - 20 ug/L. The best supplement for folate is methylfolate (dose = 1000mcg per day) or metfolin. Avoid folic acid. Once level is optimal reduce the number of days that folate is taken to maintain your level where you want it.
Vitamin B12 -active >150 pmol/l (37.5-150)
This level is good.
Vitamin D 46 nmol/l (50-200)
Too low. Optimal is 100 - 150 nmol/L. There is a lot of info on vitamin D supplements on the forum so do a search for recommendations. Vitamin D increases the amount of calcium absorbed from the diet. To make that calcium go into bones and teeth you need to take magnesium and vitamin K2.
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Have you ever had your calcium levels measured? Too high a level can end up lining your arteries.
Thanks. I need to work on several levels. I’ve been prescribed vitamin D for years. They were low when tested by the GP ages ago but they didn’t believe me that I was taking them so swapped me from 800iu a day to 20,000iu a month which seems counter productive. Can you tell me how much K2 I need and what/how much magnesium please?
I read that selenium is helpful but I don’t know if need tests before starting this?
I asked about the b12 on the PA board because I was diagnosed with PA but my levels seem fine as you said even though the doctors stopped my injections. I’ve been taking LDN for a couple of years which have greatly reduced my thyroid antibodies so I wonder if they’ve reduced the PA ones to the point I’m now absorbing b12 again? The group suggested that I may not be getting the b12 into my cells though and recommended a couple of very expensive tests that I need to look into.
I imagine I’ve had calcium levels done at some point as I was put on calcichew during pregnancy due to having the blood thinners but I was never given any results if they did. I don’t think thickening of arteries seems to be a problem as they said that I don’t have any heart disease or problems with heart function.
I’ve been taking LDN for a couple of years which have greatly reduced my thyroid antibodies so I wonder if they’ve reduced the PA ones to the point I’m now absorbing b12 again?
I don't know if that ever happens - the PA community is the best place to ask about that.
They didn’t actually tell me what the blood test was for until after I took it so I assumed it was something else.
They usually give me Teva.
I’ve been prescribed folic acid. I’ve been on vitamin D for years but it doesn’t seem to go up. Doctors assumed it was because I wasn’t taking it even though I told them otherwise.
Thanks for the advice. I started at a quarter of a tablet and went up by a quarter each time. I did this over 2 years and tested once I’d been on 1 tablet for 8 weeks. I didn’t have the money for lots of testing so otherwise went by how I felt.
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