I’m new here! Stop taking Levothyroxine altogether?

[Dawnjoyce]

My TSH had varied from 8.5 to 6.2 over the last 18 months. I also have the antibodies. Two months ago my GP put me on 25 mcg Levothyroxine. I had a blood test after 6 weeks and my TSH had dropped to 0.5. Good news! But now my GP has told me to stop taking Levothyroxine altogether, and only restart it twice a week should my symptoms return (tiredness, depression, weight gain). She will restest my TSH in 3-4 months time. I realise that 25mcg is the lowest dose available but his doesn’t make sense to me. Won’t I end up back where I started? And, if I do end up taking the medication only twice a week, what effect will that uneven intake have on me? Advice appreciated!

[Mary-intussuception]

Have you only had TSH tested?

How are you feeling now? Symptoms?

You could ask for referal to an Endocrinologist or /and the following tests:

Thyroid Antibodies TPO and Tg

FreeT3

FreeT4

T3 & T4

TSH

Make sure you get the blood test appointment for early in the morning and fast.

The Thyroid Antibodies are important as they may confirm if you have Hashimoto's Autoimmune Thyroiditis.

Did your GP give you a diagnosis?

You could also ask for tests of some nutrients levels :

Vitamin D, Calcium

B12 and Folate

also Ferritin.

Look up symptoms of deficiencies in each of these nutrients on NHS choices and other sites.

[Mary-intussuception in reply to Mary-intussuception]

Sorry Dawn, I've just read (agsin). You ". . also have antibodies . . "

Did GP mention Autoimmune Thyroiditis?

Do you have your results details - all numbers including ranges and dates of tests please?

[Dawnjoyce in reply to Mary-intussuception]

Hi Mary. Thanks so much for your reply. I have had other blood tests done, but I am really ignorant abloht what they all are. I have photos of the result sheets but I odnt know how to put them into my reply to you. Can you help with that?

[Dawnjoyce in reply to Dawnjoyce]

Sorry for the typos!

[Mary-intussuception in reply to Dawnjoyce]

Sorry Dawn, I've just seen this . I'm afraid I haven't figured out how to put photos on here yet either.

I See you've added your T4 result. You should really have had FreeT3 tested. If your symptoms return then I would ask to be referred to an Endocrinologist. If GP told you "you have Antibodies" I am assuming he means that your Thyroid Antibodies test (TPO - Thyroid Peroxidase ) gave a raised result? This means that you have Hashimoto's Autoimmune Thyroiditis. Which is the cause of Hypothyroidism in most cases.

Keep an eye on your symptoms, they may come on after a cold or other infection.

Ask your GP to do those Nutrients tests some time.

I would be wanting full Thyroid Function blood tests (including FreeT3) in 6 weeks time. If you feel well and are happy to wait the 3 - 4 months then ok, whatever you think is best for you.

[Dawnjoyce in reply to Mary-intussuception]

No apologies are ever necessary, I am grateful for your advice Mary, and I don’t look everyday anyway. Last time it was tested, my Se thyroid peroxidase Ab conc (DMR) was 98 iu/ml (range shown was 0:00 - 50:00 iu/ml). There was also a comment underneath the reading which said ">75 iu/ml = raised antibody level, suggestive of auto immune thyroid disease". This being the case, is it inevitable that my symptoms will come back now I have stopped taking Levothyroxine? Or not necessarily?

I also notice another "positive" on my results sheet, it’s for "Parietal Cell Autoantibodies". When I looked this up on Google, it says that it is an indicator of a possible lack of Vit B12. However, a comment underneath the result says "Gastric parietal cell antibodies are no longer recommended for the diagnosis of Pernicious Anaemia due to their low specificity of about 50%”. Am I going off track with this particular thing? Just I gnore it if I am! I will take your advice and get tests done on those nutrients, thank you Mary.

[Mary-intussuception in reply to Dawnjoyce]

That's very interesting, about the Positive result on the Parietal Cell Autoantibodies.

No, I don't think you're going off track. Did your GP do that or a Gastroenterologist or other Specialist? I'll have to look it up too! Definitely ask one of your GPs about it sometime.

Asking for the nutrients tests may be a good place to start, but I wonder if you should ask for tests for Pernicious Anemia also? I'm not sure, or wait and see if your Folate result is low and your B12 is low in range, then ask. I'm not familiar enough with these tests to say, really.

What symptoms do you have now or have they resolved?

[Dawnjoyce in reply to Mary-intussuception]

My symptoms have gone! It was my normal GP that asked for the test for Parietal cell autoantibodies. I think she was looking for other possible causes to my headaches but since taking LT they, together with my other symptoms of tiredness, depression, and weight gain, have disappeared!

I think I will wait for the results of the nutrients tests before going down the PA route, but I will ask my GP about the positive result next time I see her.

[Mary-intussuception in reply to Dawnjoyce]

Yes, get the B12 test (and others) as soon as you can.

I looked it up and it says if you are positive and have low Vitamin B12 then it is probably Pernicious Anemia.

You've also Googled it so you know what it says about the Intrinsic factor antibodies test and MMA tests.

x🐥

[Dawnjoyce in reply to Mary-intussuception]

You’re a star, thank you! And I’ll let you know how it goes. 🤩

[SilverAvocado]

I agree that what this doctor is doing makes no sense. The big drop in TSH is a little puzzling, so you really need to fill thyroid panel: TSH, freeT4, and freeT3.

0.5 isn't that low a TSH, and probably isn't even below the range, so it doesn't really indicate a reduction anyway!

But much more importantly, how are your symptoms? I guess you were feeling a bit rubbish before the treatment, but did it improve anything? Did you feel worse on the tablets?

[Dawnjoyce in reply to SilverAvocado]

Thanks for your reply! I had continual headaches, which have gone, I was putting on weight, which I have now lost, and I feel less tired. So, all in all, I feel better than before I started to take levothyroxine. The range that appears on my blood results sheet for "Serum TSH level" shows 0.35 - 5.00, so my last reading of 0.05 is below the range (I made a mistake with my last TSH Reading in my first post, it was 0.05 and not 0.5, sorry about that). My free T4 Reading is 20.1 ( the range shown on the results sheet is 9.00 - 24.00). I can't see a test on the sheet for free T3.

[SilverAvocado in reply to Dawnjoyce]

Ash, this TSH makes a bit more sense! 0.05 is an actual low result. Doctors tend to dislike this, but often you need a very low TSH to get your freeT4 and freeT3 up high enough.

That's a fairly respectable freeT4. Generally you want this high-ish in the range, and yours is almost in the top quarter. You've got a tiny bit of room for increase, but I wouldn't be surprised if you feel well with that result.

FreeT3 is often not done It's the most important because T3 is the active hormone. Levothyroxine contains T4, and your body has to turn it into T3 as needed. But often when we're ill that doesn't work very effectively. So this test tells us whether enough active hormone is being made.

If you feel much better, staying on 25mcg is probably the right thing for you to do. You're unusual in that you can manage on a very low amount of hormone, something between 75mcg and 200mcg is more common. I'm a person that needs a very high dose, you're a person that needs a very low dose. I don't know what the mechanism for needing a low dose is. It would be interesting if something turns up.

You also ask if taking only a few times a week would work. The answer is it would be fine. This is a very slow acting medicine, with about a 6 day half life. Taking different doses on alternate days is common. Or you could tune your dose by maybe taking 25mcg 6 days a week and then skipping one day.

But based on these blood tests, as a patient I think it is fine, doctors often do freak out at low TSHs

[Dawnjoyce in reply to SilverAvocado]

Hi Silver avocado! Thanks so much for your reply. Yes I do feel well now. I haven’t had my T3 tested so I think I will ask for that when I have my next lot of bloods. As I have just explained to Mary, Last time it was tested, my Se thyroid peroxidase Ab conc (DMR) was 98 iu/ml (range shown was 0:00 - 50:00 iu/ml). There was also a comment underneath the reading which said ">75 iu/ml = raised antibody level, suggestive of auto immune thyroid disease". This being the case, is it inevitable that my symptoms will come back now I have stopped taking Levothyroxine? Or not necessarily?

I also notice another "positive" on my results sheet, it’s for "Parietal Cell Autoantibodies". When I looked this up on Google, it says that it is an indicator of a possible lack of Vit B12. However, a comment underneath the result says "Gastric parietal cell antibodies are no longer recommended for the diagnosis of Pernicious Anaemia due to their low specificity of about 50%”.

I stopped taking LT on Monday because I didn’t know what to do, and was concerned that my TSH level might really get too low, and I don’t understand the implications of that (hyperthyroidism??). In your reply you say that you "think it’s fine", do you mean to continue to take LT daily? Or to stop LT altogether? or to take a tablet a few times a week? Sorry, I wasn’t sure what you meant. Thanks again for your advice, it’s greatly appreciated!

[SilverAvocado in reply to Dawnjoyce]

No problem, I'll try to clarify.

The dose you were on is a completely fine dose. There's nothing over medicated about it. You would be better off staying on that dose, particularly if you feel well on it. You've even got room for an increase of you wanted it due to symptoms, as your freeT4 is 20 and the top of the range is 24.

Unfortunately, doctors tend to only look at TSH, which is less useful than the freeT4 and freeT3. You've got a low-ish TSH, but many people need their TSH very low in order to get their levels up high enough to feel well. So your doctor has panicked and taken you off Levo.

Your TSH will almost certainly return to what it was before, and you'll go back to feeling unwell without it. Hypothyroidism isn't cured by the medication, the tablets just replace the hormone your thyroid would have been making, so we have to stay on it forever. Thyroid peroxidase antibodies mean your thyroid function will slowly deteriorate and get worse, so you'll need a small raise of thyroxine every now and again.

The doctor may have been alarmed that such a small dose of Levo caused such big changes in your numbers. This is very unusual, but everyone is different.

Often we have to jump through a lot of hoops with doctors in order to get treatment Make sure to go back straight away as soon as you get any symptoms. Or if you're brave, stick with the dose and argue with them! Hyperthyroidism is the opposite of hypothyroidism, when the thyroid becomes overactive. Levels then are extremely high and make you feel sick similar to having too lightly hormone. And doctors often get confused and say that someone on a decent dose of thyroid hormone will get sick like that, too.

I'm afraid I don't know anything about pernicious anaemia. There is a forum for it on health unlocked that is also good. If I were you I'd make a post on there to ask about it. B12 deficiency can be very dangerous.

[Lily288]

If it was me, I'd go by how I feel. That is, if I feel ok on the 25mcg, I'd continue taking the 25mcg.

I'm not an expert but sharing from my own experience. I'd been Hypothyroidism and on 100mcg Levothyroxine for many years, but then a couple of years ago, I became, what I thought was hyperthyroidism but in fact from what I learnt on this list it's that my dosage was way too high. Nonetheless I felt like jumping out the window plus I was losing weight and just plainly felt awful.

But like you, my TSH read high as 8.9 and I felt way hyper, so a higher dosage would have driven me even more hyper. So I reduced my 100mcg Levothyroxine down to half and later down to one quarter of my dosage.. that is.. 25mcg. I've stayed at 25 mcg for over a year now and I feel so much better. Maybe this happens as we get older, I'm not sure but I feel much better or balanced.

And just to add, my doctor told me that antibodies do not matter... she won't even bother having mine checked... It's also best to change our diet and get exercise and to not worry so much about our thyroid problem. I go for walks with my little dog. "no choice" 😝.....and never eat fast foods...

[SilverAvocado in reply to Lily288]

Very interesting to hear that some people do better on a very low dose!

[Dawnjoyce]

Whoops, I made a mistake with my last TSH Reading in my first post, it was 0.05 (not 0.5). Sorry about that.