I have had subclinical hypothyroidism since I was teenager (TSH levels anywhere between 4,5 – 6,5, all other levels within usual ranges). I have never been treated, as it apparently wasn’t necessary. Last year I became pregnant (fertility treatment), and still wasn’t treated. I then miscarried at 7weeks. After that I pushed my doctor to start treatment.
I started taking Levothyroxine 25mcg in January. In March I had first check-up. I don’t have the exact result, but my TSH levels were around 3,5. As I am still planning to try to get pregnant again, this result wasn’t ideal and my Levothyroxine dose has been increased to 50mcg.
In May my blood results were:
TSH: 0.238 [0.27 – 4.2]
Free T4: 22.53 [12 – 22]
Free T3: 5.6 [3.1-6.8]
The doctor confirmed it looks like my dosage was little bit too high, so he told me to alternate between Levothyroxine 50mcg and Levothyroxine 25mcg.
A week ago I had another test and the results are:
TSH: 0.010 [0.27 – 4.2]
Free T4: 31.61 [12 – 22]
Free T3: 7.2 [3.1-6.8]
Just FYI – all tests have been done early in the morning (8am) and I didn’t take the medication before the test (last pill is usually more than 24hours before the test). I also take the medication correctly (empty stomach, don’t eat for the next hour etc.).
Also, it might be worth noticing that the last blood test was a disaster – the nurse couldn’t find a “suitable” vein, so stabbed me blindly – well, that didn’t work and no blood was coming. So then she had to call a doctor, who was tiny little bit better and eventually after about 20 minutes managed to take the blood (stabbed me blindly as well, but was lucky to hit the vein). Overall, really bad experience – never happened to me before.
Long story short – I am very confused as why my hormone levels still keep rising (T3 + T4) and lowering (TSH) despite lowering the Levothyroxine dosage. It feels like that as it stands now I am basically hyperthyroid? Could it be that the medication somehow screwed up my thyroid? Or could it be that because the blood test experience was really awful, it somehow gave false results?
I obviously tried to answer these questions to the doctor; however without any success – he just wanted to push me out the door. I also tried to look online, but I cannot find any relevant information.
Any information, tip, suggestion would therefore be very appreciated.
Hello both, as far as I know nobody has tested the antibodies...However the Hashimoto is usually treated by Levothyroxine anyway....So I still don't understand why my levels are getting worse despite change in the dosage?
Yes it is - but there are things you can do to help yourself if it is Hashimotos TPO & Tg are the anti-bodies that should be tested. Rarely are both done in the NHS.
One of the very sad things is that I am actually treated privately, so I am paying for all this I can get the antibodies tested; however I am not sure if it makes any difference now that I am on Levothyroxine and the basic hormone levels are screwed up anyway (which makes me think that all the other levels might be well off too)
Well, yes, it is, but that's not the point. The point is that after an immune system attack on the thyroid, the level of FT4 and FT3 will suddenly rise sharply, and the TSH will therefore drop. Which is what appears to have happened in your case. It has nothing to do with your dose. You haven't 'gone hyper' and you haven't suddenly become under-medicated, you've just has an immune system attack on your thyroid. And, if you don't know that that can happen, you ask questions like the questions you're asking above - and your doctor will have absolutely no clue.
If that happens, what you do is stop your levo for a short period, until the levels go down by themselves - which they will as the excess hormone is used up or excreted - and then go back on the same dose when you become hypo again - which you will. But, if you don't know how Hashi's works, then it can be confusing.
thank you for explaining the problem - it makes little bit more sense I think. So do you think that I should stop taking the Levothyroxine now (without telling the doctor)? Or shall I see what the 25mcg dose does and if it doesn't get better next time I have my blood test (early September), I talk to the endocrinologist? And re the antibodies - do you think I should get them tested now? I am unfortunately still little bit confused about the "plan of action" and unfortunately there is no support from the endocrinologist....Thanks again for your help!
Yes, you should definitely get them tested, but be aware that the test can only prove if you have it, not if you don't have it. Antibodies fluctuate all the time, so might not be high on the particular day you have your blood draw.
As to whether you should take your levo or stop it, depends on how you feel. Do you feel over-medicated? If not, carry on taking it.
Thank you for your explanation and patience I’ll definitely get the antibodies tested and see. Re the overmedication - I’m not sure to be honest,I wouldnt say I feel the greatest,but not quite sure if it is because of the medication (I have quite lot of other stressful events happening in my life)...Do you know what are the signs of overmedication? What should I be looking at? Thanks again!
Thank you Greygoose. Do you think that the overdose could also prevent me from ovulating? I’m tracking my cycle every month and so far I havent had any problems;but this month for the first time ever it looks like I am not getting an estrogen and LH surge... Not sure if it has something to do with it...Thank you
I doubt it was an over-dose, highly unlikely, but I'm afraid I don't know that much about sex hormones to be able to reply to that question. But, it could very well be connected, yes.
The point is that when you have an autoimmune attack, the thyroid tissue is destroyed and release all its stored hormone into the blood stream making you have tests that look as though you are overactive. As the hormones clear out of the blood, you'll become more hypo and have tests showing that you are underactive again
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Mepnet, when we have Hashimotos, the thyroid function will slowly reduce over time, as the thyroid gets nibbled away. As well as making thyroid hormone, the thyroid also stores some. This means when it gets nibbled it can dump extra hormone out into the bloodstream.
This then raises the hormone temporarily, which will show up in a blood test, and can give you overmedicated symptoms. These would be feeling uncomfortable in a speeded-up kind of way, hot, restless, loose bowels, fast heartrate, etc if you don't feel uncomfortable I don't think you need to adjust your dose, as symptoms are really the most important thing. Some Hashi's sufferers get these very frequently and it can make it difficult to tune up a Levothyroxine dose. It can also give very unpleasant symptoms. Others only get them rarely or don't have a problem with them.
Doctors will often say it's not worth testing antibodies because the treatment is the same whether they're there or not. They'll also tell you that antibodies don't cause any symptoms. Many patients disagree, and some get terrible symptoms from antibodies. There are a number of things that can reduce them, the first to try is going gluten free and some people also benefit from dairy free. The antibody test can have false negatives, so it can prove you have Hashi's, but can't prove that you don't.
I would say your May results are more like undermedicated. Your freeT3 is only halfway through the range, and most people feel better with it in the top third. You might need to take T3 to get you there.
If you decide to adjust your dose remember that you need to stay stable for 6 weeks before a blood test.
Hello Silver Avocado,thank you very much for explaining the issue. I think I might get some of these symptoms;however because I am having quite difficult time in general,I’m not sure if it it because of it or because of the thyroid. The only thing I have noticed this month is that it looks like I might not be ovulating? I’m tracking the ovulation every month via the tests and so far I have been pretty regular,but this month I just cannot get the the estrogen and LH peak. Could it do something with it? Thanks again!
I think it probably could have something to do with it. Thyroid hormone and sex hormones are very linked. When I was very hypothyroid I used to be very ill over my whole period and my usual fatigue and hypo symptoms would all increase.
I know that heavy periods are associated with being hypothyroid, and light or no period is associated with being hyperthyroid, but there's probably a lot of crossover between the two. Unfortunatly I don't know any more of the detail of how it impacts all the different hormone cycles. You may be able to find more knowledgeable members if you make a brand new post asking about sex hormones.
I've just reread your original post and seen how much you've suffered With a TSH of 4.5 you almost certainly needed treatment, but doctors fob us off with all this guff about sub clinical and 'normal' to avoid treating us
Being hypothyroid causes miscarriages and fertility problems, so it's possible you could have been spared all of this if you'd been treated properly from the start. The system of treating thyroid really is very very cruel
It's best to wait until your thyroid hormone is optimal before trying to get pregnant again. I think you will almost certainly end up needing some T3. Its very hard to get on the NHS. If time is of the essence you could go private, or buy your own and self treat. Also make sure vitsmins are optimal, folate, ferritin, vit D, vit B12.
Hi SilverAvocado,thank you very much for your answer.
Yes,I also think it could somehow be linked even though I cannot find a definitive answer anywhere....My period became lighter since the miscarriage,which +- coincides with the start of the Levothyroxine treatment as I started it roughly 1,5 months after the miscarriage,so not sure what had more impact... However up till now the period has been regular as well as the ovulation tests showed the hormones peak regularly...This month is the first month I am having issues...I will see how it goes and will update this post just in case it can be helpful for somebody. Plus as you suggest, might try to ask other members under different post. I’m actually not sure if I need extra T3 - at the moment it looks like my levels are above the range?
Yes,I havent had the best experience with the doctors - as you said they just tried to fob me off... The ridicolous thing is that now I am seeing a private endocrinologist, but still feel as I am just “bothering” him. If we dont conclude the appointment within max. 2 minutes and dare to ask some additional questions, I get those really poisonous looks. I was able to find more information here and on other websites than from healthcare professionals
Doctors are very negligent and cruel over hypothyroid, I think. The treatment is just shocking and people can be left ill for years.
Your May and July results are very different. I think others are probably right that the July result is a flare up of hormones caused by an autoimmune attack on your thyroid. This means that theoretically the May result is your true baseline.
But if I were you I wouldn't trust that theory. I would hold on your current dose (unless you feel a need to temporarily reduce), and then retest in a few weeks to see if the flare has passed. You could go to Medichecks or Bluehorizon for a finger prick test.
If you're taking a lot of measures to monitor fertility you will hopefully be in a good position to detect ups and downs in metabolism, too. Do you do pulse, blood pressure and temperature? These are good to monitor thyroid hormone levels/metabolism. I tend to do morning and bedtime, but that's because that's what I've always done, there are probably better protocols to follow.
Then its a bit of a judgement call whether to tune your dose perfectly to your 'baseline', or if flares are very common you might find you are adjusting to accommodate those a lot of the time. Hopefully flares won't be too much of a bother for you and you can tune the dose to your baseline measure.
There are things you can do to reduce autoimmune activity/antibodies and in turn flares. Being gluten free is the biggest one that helps many Hashis sufferers, dairy helps something like 20%, and there is a whole paleo autoimmune protocol diet that helps some. I believe there are additional herbs and things you can look into.
If I were to make an educated guess about sex hormone/fertility measures just based on my experience with metabolism measures, my guess would be that things will go from being more ordered before you started to being a bit chaotic and up and down as you start thyroid treatment. I'd expect to see more unexplained, temporary changes, because your body will be shaken out of the rhythm it's been in before. This will probably continue to some extent while you are tuning your dose and getting things optimal. Then it might be that once you've been on a given dose for 4 weeks or more it will start to look a bit more settled, and will probably show something more consistent with what you'd expect the change in hormone to have done. On a dose up to about 50mcg thyroid hormone can be a bit disruptive rather than helping anything, so as you raise above that you can expect to see improvements.
I'd usually say it takes about 6 months from starting thyroid hormone to get onto a stable dose, assuming no big obstacles come up. Your flare up will slow you down a bit, but it looks like you will need quite a low dose, so that may make the process a bit quicker. Don't be surprised if you feel a bit worse, or a bit weird for the first few months.
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TPO & Tg are the anti-bodies that should be tested. Rarely are both done in the NHS.
I can get the antibodies tested; however I am not sure if it makes any difference now that I am on Levothyroxine and the basic hormone levels are screwed up anyway (which makes me think that all the other levels might be well off too)
Still freezing cold on Levothyroxine will I need T3
Levothyroxine not working for me- increased dose to 100mcg caused 2 stone weight gain. I don't know what to do. PLEASE HELP
Thyroid levels
Nothing appears to work
Do I need T3 medication too? 
