(Before I start, apologies if I have repeated a lot of what has been said/asked before. I have spent a few hours reading through various posts and feel like I have a little bit more of an idea of what I am dealing with. )
As the title of my thread suggests I have a couple of things going on!
I was diagnosed with an under active thyroid pretty much at the same time I was told I would have to take a multiple number of injections a day. So as you can imagine- "taking a tablet" to control my thyroid was the least of my worries compared with the 3-6 injections a day.
I have been on a steady dose of 100mc of Levothyroxine- it has never been raised as an issue with my GP or my diabetes team- until recently. Over the last year I have been working on tightening my diabetes control and have lost a considerable amount of weight. This has impacted my thyroid issues. This has been flagged up as I have finally been offered a round of IVF.
10 weeks ago- my IVF clinic refused to let me start a round of IVF because my
TSH4 was 11.4
and my T4 was 14- so my Thyroxine dose was increased from 100 to 125mg daily.
This was retested on Monday and my TSH4 came back as 0.1 and my T4 as 25. My GP was VERY concerned at how 'abnormal' this was.
I am assuming the GP wants me to decrease my Thyroxine dose to 100mg to reduce my T4- will that mean my TSH4 will rise? As I need to keep that as low as possible for IVF. He has asked me to retest after 3 weeks.
I originally posted this on a diabetes forum and some lovely members on there directed me to this site. Since trolling through posts on this site - as far as I am aware- I have not had my T3 tested, I was told briefly over the phone (when I received my results) that my Folate and B12 levels are high but 'nothing to worry about.'
I have an appointment with my GP on Saturday so will hopefully get a copy of my actual results and will push to have T3 and other suggested tests done.
Has anyone had similar experiences? What levels should I be aiming for? I also picked up on the timing of the blood test for TSH4 etc- and I had mine almost midday- after taking my morning dose- would that have impacted my results?
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CranberryIce
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I'm also a T1 & hypothyroid (Hashimoto's). Have your antibodies been tested to know if you have Hashimoto's? Like you, I was diagnosed hypothyroid right after T1. Often common, unfortunately, to have more than one autoimmune disease.
Yes, lab test results were skewed by the timing. TSH is lowered if you ate before the blood draw. Lab results are also effected by when you took your thyroid dose, not that doctors ever tell us. Best to test first thing in the morning with your dose about 12 hours before. TSH is higher in the morning to keep doctors off our backs Yes, since you took your dose in the morning & had labs mid-day, results are not a reflection of accurate values.
Doctors are woefully ignorant & freak at suppressed TSH. That's nothing to be concerned with when people take thyroid meds. You can read a lot here about the uselessness of diagnosing by TSH.
There's no real answer to where levels should be. Some people say T3 should be in the top 3/4 of the range. That's where I feel best. I take T3 in addition to Naturethroid, which is natural dessicated thyroid, so my T4 is always low. The right value for you is where you feel well & experience diminishing symptoms. Takes tweaking to find the correct dose by slowing raising dose. Dosing changes over time, too.
Just in case you don't know, thyroid meds make insulin less effective so you'll probably have to take larger injections when thyroid doses increase. Another important factor that doctors either don't know, or don't tell patients.
Hashimoto's Thyroiditis is an autoimmune disease which is the cause of about 90% of cases of hypothyroidism in the UK and many western countries.
Being hypothyroid means that you produce too little thyroid hormones. But this low level of hormones has a cause. And Hashi's is the cause for many people.
Other causes can be :
1) Iodine deficiency
2) Pituitary disease or damage
3) Hypothalamus disease or damage
I'm sure there are lots of other reasons but those are probably the commonest reasons other than Hashi's.
Doctors never care about the cause of hypothyroidism. They just care about whether TSH is in range or not.
It may well be that 100 is too low and 125 slightly too high for you BUT having tested after taking your tablet and at midday the very low TSH could be due to these things and NOT a true reflection. I would continue on the higher dose and ask to be re-tested and make sure you get a re-test first thing in the morning BEFORE you eat anything and take your thyroxine AFTER the test.
Then if it is still way too high then reduce your dose very slightly, you can for example take 125 / 100 on alternative days as it has a long half life in your body. Changing my dose by 50 mg a week made a huge difference to me! Talk to your doctor about this, the aim is to get a stable TSH at around 1 though in the UK they tend to consider anything in range as fine (you won't feel fine though especially on a value high in range!)
Being hypothyroid in many people reduces stomach acid levels. The burning in the gut and the heartburn that are so common are far more likely to be caused by low stomach acid rather than high stomach acid. Taking PPIs or other acid-blockers or acid-reducers just makes the problem of too little stomach acid worse.
The effect of this is that your body can find it almost impossible to extract nutrients from your food, and so levels of vitamins and minerals in hypothyroid people are often too low. They may be in range or below range. But having a vitamin B12 level (for example) which is in the bottom 10% of the range is not going to make people feel well. The same comment applies to other nutrients such as iron.
If ferrous sulphate gives you stomach issues or doesn't raise your iron levels (some people have trouble absorbing it) try ferrous fumarate (210mg three times a day). It is better absorbed and not so hard on the stomach. There are also other forms of iron you can take if you can't tolerate ferrous fumarate either.
I had my family before a thyroid problem so have only picked up on a few things by looking at posts but I understand TSH has to be lower than 2.5 for a successful pregnancy so yes you TSH was too high for IVF. One other thing worries my yhoughbas your doctor increasing you dose butvthen retesting after 3 weeks. It takes 6 weeks for each new dose to get fully into your system so retesting after 3 weeks may be a guide but not accurate and the levels can keep changing for another 3 weeks yet. So although it could look good now it could be different later. It's better to make sure everything is settled before you start a baby plus less worry for you if you are certain you are where you need to be.
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Yes, since you took your dose in the morning & had labs mid-day, results are not a reflection of accurate values. 
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