Short question to see if people with Hashis have experienced this and if they have strategies to minimise headaches/nausea.
I have Hashimotos, take levothyroxine and Lyothyronine (T4 and T3) and feel fine on medication, that I’ve been taken since 5 years. Last year I’ve stopped gluten and dairy, and 6 weeks ago started C25k, running 30 min 2 to 3 times a week. I have a desk job, and now work from home during locked down. Usually I feel fine, but am overweight and have been struggling with weight (like many Hashis)
However, I have begun to have severe hang-over like episodes with headaches and nausea on the mornings (and often throughout the day) after I have to work late. It is only on days after days where I have to work until 10pm, work that does have some stresses involved (recording podcasts with co-hosts).
So questions:
- I have heard that headaches and nausea sometimes occurs when you go from hypo to hyper, so could it be that my nutritional changes and running made my medication more effective and thus switching me to hyper, experienced as episodes of headaches
- I take supplements (C, D, B, omega3, selenium) but are there nutritional deficiencies that together with stress cause nausea/headaches (I don’t take iron at the moment, but maybe should?)
- does late night work affect others like this?
Would love to hear from Hypo sufferers that have experienced similar symptoms.
I don’t have recent tests but last tests DEC 2019 were:
TSH: 0.76 mIU/L
FT4: 9.7 pmol/L
Ft3: 5.8 pmol/L
TPO Ab: 100 IU/ml
Have been working to lower antibodies over the years but only slow reduction. This is the lowest AB level I’ve had for since start of testing.
Many thanks
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CBDB
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How about getting FULL Thyroid and vitamin testing privately
For full Thyroid evaluation you need TSH, FT4 and FT3 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 before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
If/when also on T3, make sure to take last third or half of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
Obviously at moment only DIY finger prick options available
Cheers. Yes, these were NHS tests, and I had to fight really hard for Antibody tests. So thanks for links and will probably do one of these. Wanted to check anyway if my D supplements have made a difference.
- I have heard that headaches and nausea sometimes occurs when you go from hypo to hyper, so could it be that my nutritional changes and running made my medication more effective and thus switching me to hyper, experienced as episodes of headaches
Nutritional changes are not likely to make that much of a difference. However, as you have Hashi's, it is possible that you've had a Hashi's 'hyper' swing. Do you know how Hashi's works?
Have been working to lower antibodies over the years but only slow reduction.
Lowering antibodies is not going to make any difference to your Hashi's. It will still be there. Even if you managed to get rid of them completely, you would still have Hashi's. Contrary to popular belief, it is not the TPO/Tg antibodies that attack the thyroid. And 20% of Hashi's people never even have raised TPO/Tg antibodies. Antibodies fluctuate all the time, anyway, so it's really not worth keep testing them. It in no way changes your disease.
Thanks for the response. Not sure what a Hashi hyperswing is, but could the symptoms be headache and nausea? And what causes the swing? And in terms of antibodies, apologies for my ignorance, but under my impression the existence of antibodies defines the condition, e.g. if you have a thyroid inflammation than there will be antibodies? And lowering antibodies strategies lower the inflammation? But I am not a thyroid expert, so it might be more complex?
I wouldn't claim to be an expert, either. But, inflammation can be caused by all sorts of things, not just antibodies. And, as I said, 20% of Hashi's people never have raised antibodies. The presence of antibodies can confirm Hashi's, but lack of antibodies doesn't mean you don't have Hashi's.
Here's a brief explanation of how Hashi's works - and, yes, headaches and nausea could be a symptom of a 'hyper' swing, but could also be a symptom of under-medication.
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 do 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.
Thank you so much! This helps in understanding. Many things suggested I’m already doing, so just have to consider further implications. Sounds like further thyroid and nutrient test might be good here. Many thanks.
On the subject of antibodies, just to play devil's advocate. I have never changed anything to try and lower mine ,as i didnt know what level they were until recently, but they lowered over time anyway
2003 aug TPOab 2499[0-50]
2003 nov TPOab >3000 [0-50]
2016 TPOab 195 [no range] but assume it's similar, notwithstanding the dangers of making assumtions !
I realise many people would say they are still very high now.
They are indeed still very high. But that's of no significance. Antibodies do reduce with time, as there is less and less thyroid to attack, so less TPO/Tg for them to clear up. They disappear when the thyroid is completely dead. But, also they fluctuate. So, their level is not really an indication of anything significant.
An ultrasound will show up any damage done to the thyroid by Hashi's. Also, you can tell from blood test results of FT4/3. If they suddenly rise without any increase in dose, then it is usually due to Hashi's.
And , just so you are forewarned CBDB ,in case it ever happens to you, FT4 going higher/TSH going lower on same dose will often result in your GP thinking you have been taking more than your prescribed dose, by accident or otherwise ..... the conversation usually start's "Do you ever forget to take your tablets ...etc "
I'm not sure all Gp's understand how hashi's works.
Hi. I had a horrid reaction when over medicated. I had terrible dizzy spells and vertigo also palpitations. Went when my thyroxine was reduced. Also soya can play havoc with hashi so try not to eat soy. Sent my numbers all over the place.
Like you I fight to get my thyroid antibody tested but they have done it twice. My TPO are still at 306 !! I am also gluten free and feel better for it. Not made the leap to dairy free I love cream and butter to much. But having says that don’t often have either. More yogurt than anything else
Thanks @Delgirl82 ( and fellow 🏃🏻♀️👋🏽), yes I keep discovering that it is so hard to go gluten and dairy free without encountering products enriched with some form of soya. But I will make more effort. And I did think to reduce temporarily levothyroxine to see. Thx! Upwards and onwards. (And yes, i used to love milk yoghurt AND Kefir, but coconut yoghurt is fabulous as well. I miss cheese, though)
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