I’m hoping someone can shed some light on my problem. My Dr increased my Levothyroxine from 50 to 75mcg two months ago as I was still slightly under-active (6.9tsh)
I know this is only a small increases but In recent weeks I have noticed a few unwanted side effects such as heart palpitations, mild anxiety, irritability and also tiredness but also hyper at the same time. Iv now gone back down to 50mcg to try and balance things out. I’m at my wits end with it, I’m so Close to going privately to see an endocrinologist!
My question is has anyone else had similar side effects? I don’t know what to do next!
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Henson1980
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With a TSH of 6.9, you weren't 'slightly' under-active, you were very under-active. Once you are on thyroid hormone replacement, the TSH should come down to 1 or under, on the right dose. 50 mcg is only a starter dose. How long did your doctor leave you on that? If it was too long, that could be why you're having trouble raising your dose. He should have retested and increase by 25 mcg after six weeks.
So, I doubt what you were feeling was side-effects of anything, but symptoms of under-medication.
So, the question is, why did you get these symptoms when increasing your dose when you were so obviously under-medicated? Well, it could be due to low nutrients. Have you ever had your vit D, vit B12, folate and ferritin tested? If these aren't optimal your body won't be able to cope with the increase in thyroid hormone. Doctors know nothing about nutrition, so rarely think to test for nutrients. You'd have to ask for them. When you get the results, post them on here, with the ranges, and let's have a look.
Thanks Greygoose. I have tried to increase before but after a few months I had to decrease because of the unwanted side effects. Thyroid disorder runs in my family, two members have Hashimotos so I’m wondering if maybe that’s why the meds aren’t working? I have been but d defieicent in the past so I could well be now x would you suggest alternating the dose and if no improvement then see an endo?
They're not side-effects, they're symptoms. And, possibly from under-medication. So, instead of reducing the dose, it might have been a good idea to try increasing again.
Having Hashi's doesn't mean the 'meds' don't 'work'. Of course they're working, if by working you mean doing something. They're not drugs, they're hormones, so they have to be doing their job. But, what you're taking is T4. Does your doctor test your FT4? If so, isn't the level rising? And if it is rising, the levo is doing it's job.
However, what could be happening is that you are unable to convert the T4 - the storage hormone - to the active hormone, T3. That often happens. But, it's not because the levo isn't working, it's because your body isn't working as it should. But, you won't know if you're converting, unless you have your FT4 and FT3 tested at the same time, and compare them.
Sorry to be pendantic, but it really is important that you know how these things work. Otherwise, how can you have a meaningful conversation with your doctor to get what you want/need?
What happens with Hashi's is that the immune system slowly destroys your thyroid, so you become more and more hypo. So, it's important to get proper testing at regular intervals so that your dose can keep up with your increasing hypothyroidism. This is one of the reasons that it's so important to test for antibodies. Doctors just do not understand this, which is why we have to know our disease if we want to get well.
I cannot suggest alternate dosing without seeing full lab results, and you only have a TSH result which says that you are very under-medicated. However, it's worth a try if it helps you to slowly increase your dose. What I would suggest is that you get your vit d retested and also the other nutrients that I mentioned. They are likely to be low and that's more likely the reason that you cannot raise your dose successfully than anything else. So, proper testing is the next important step to take:
TSH
FT4
FT3
TPO antibodies
Tg antibodies
vit D
vit B12
folate
ferritin
If your doctor can't/won't do all these tests, I would suggest you get them done privately. It's very difficult to suggest a way forward without knowing all these variables.
Oh, and I never would suggest anyone sees an endo unless you know what that endo is like. Most of them are diabetes specialist with only a vague idea how the thyroid works. They have been known to completely mess up peoples treatment with no idea how to get them back on track. Try the nutrient/antibody/conversion investigation path first, because it's doubtful an endo would do that.
You are so knowledgeable on this subject, I need to do some reading so I know what I’m dealing with.
My Dr isn’t very helpful which doesn’t help! Iv ordered this test I’m hoping it gives me more insight and a plan to go forward with: Thyroid check plus from medi checks x
Low vitamin levels are especially common with Hashimoto's
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
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
Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first, plus vitamins
Thank you for your reply. I have ordered the thyroid plus test so fingers crossed I’ll be more enlightened in the next week or so! It’s funny you say about dairy intolerance, I use lacto free as dairy doesn’t agree with me.
When we need to supplement, and many of us do then generally it's for life. The thyroid makes us be low on such things and will continue to do so then if we stop we lose the benefits quite quickly. You may, once optimally treated, be able to find a maintenance dose. I spent a long time getting my folate to a good level and now I just need to supplement on alternate days. I expect we can all vary on these things so a bit of trial and error.
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