I’ve not been diagnosed with Hashimoto’s/hypothyroidism for long so I’m not sure how it works!
Over the past year my symptoms have fluctuated along with my blood test results but I’ve felt fairly well since May. I had my last blood tests mid-December and the results are the best they’ve been (see below) and I’ve been feeling really good.
TSH 0.45 (0.27-4.2)
T4 22 (12-22)
T3 5.1 (3.1-6.8)
Therefore, it’s taken me by surprise that over the past week I suddenly feel awful again! All my symptoms have returned with a vengeance (extreme fatigue, memory issues, anxiety, dry skin, being freezing cold). It seems completely out of the blue - I haven’t been doing anything differently. I’ve heard of flare ups but have no clue what triggers them/what to do about them!
I’m really frustrated - I’ve spent the past year trying to get my levels close to optimal and then when they’re as good as they’ve been, this happens! I feel miserable - it’s been a week now and I have no idea what to do to feel better.
Any advice/tips/reassurance would be most welcome!
Thanks in advance.
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Flossiewestie2020
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OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can try for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
Thanks for this. I think I understand! So you think I’m in the hypo phase after a ‘hyper swing’? I’m definitely having hypo rather than hyper symptoms! Are you saying this happens for no reason rather than it being triggered by something? Should I just carry on taking the same dose and hope it passes soon?
So you think I’m in the hypo phase after a ‘hyper swing’?
I really have no idea about that. I don't think you've told us what you're taking, have you? Did I miss that somewhere? But, if you're taking thyroid hormone replacement, I would think that your lab results are due to what you're taking, rather than any sort of 'hyper' swing.
Are you saying this happens for no reason rather than it being triggered by something?
That's what I'm saying yes. Or, if it is triggered by something, no-one knows what it is.
Should I just carry on taking the same dose and hope it passes soon?
You should definitely carry on with your thyroid hormone replacement, but I don't think it's going to 'pass', because the default position for Hashi's is hypo. Actually, I don't really think you did understand my explanation... The phase that passes is the 'hyper' phase, not the hypo. And, I think the reason your feeling bad at the moment is due you your FT3 being a bit low - could very well be you need it higher. What are you taking, and how much?
Ok, thanks for this. I currently take 125mcg of Levothyroxine. I’m just confused as I felt much better when my lab results were much worse! I felt great last week and then awful this week seemingly for no reason as lab results are better than they’ve ever been.
Well, it's not unusual that lab results don't reflect thyroid status/symptoms. How long have you been on 125 mcg? And, it could be that your FT4 is now so high that it is having an adverse effect on your conversion, so your FT3 is now lower than it was before. What were your last labs like? And how much were you taking when they were done?
No, your TSH is not suppressed. It's still in-range. Doctors tend to consider 0.1 is a suppressed TSH, But, I'm more inclined to think that suppressed is 0.01.
TSH has nothing to do with how you feel. It isn't even a thyroid hormone, it's a pituitary hormone. And very unreliable for indicating thyroid status. The most important number is the FT3, because it's low T3 that causes symptoms. And, yours is only 51.05% through the range. Most hypos need it higher than that to feel well.
My previous blood tests were in October. I was taking 100mcg and my results were: TSH 3.25, T4 15.1 and T3 3.7. At that point I was feeling much better than I am now and my T3 was much lower 🤷♀️
OK, so if we compare the two sets of results, and the difference in dose, it would seem possible that you have had a bit of a Hashi's swing, and that you're now swinging back to hypo again. But, stay on that dose until your next blood test and see what the results are then. It is difficult to find the right dose with Hashi's, I'm afraid. But, not impossible. In the meantime, concentrate on optimising all your nutrient levels, because deficiencies will make things worse.
Yes, Vit D was 97 in December, B12 428 in August, Folate 14.1 in August and Ferritin 32 in October. I know Ferritin is low but that’s the highest it’s been in a year (it was 2 at one point) and I’ve felt well with it at this level previously.
Vit D and Folate are ok, but I would want my B12 higher than that. I would suggest taking a good B complex for a while, one that contains methylcobalamin (B12) and methylfolate.
Did you have a full iron panel done when your ferritin was at 2?
Ok, thanks. My nutritionist suggested a B complex with those ingredients - I wanted to use up what I had already but think I’ll change now! Yes, I was severely anaemic - I’ve been on iron tablets since November 2019 but my ferritin levels have never got above 32.
Probably. But, do they contain enough. I always take at least 1000 mcg vit C with my iron.
Actually, given how iron tends to bind to calcium and block vitamins, it might be a good idea to try taking it away from meals, completely on its own. You might absorb more that way.
'Flare', not 'flare up'. That's where the confusion comes in. People think of a flare up such as you might have with arthritis, or something. But a Hashi's flare is something completely different. Which is why I prefer to call it a Hashi's 'hyper' swing, which is more descriptive of what actually happens - i.e. a period of temporary hyperthyroidism. Calling it a flare, or flare-up seems to suggest that it's a period of hypothyroidism getting worse, when it's actually the opposite.
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