hashimoto - rage outbursts

[madness07]

Hi

I have hashimoto, currently I'm in minimum dose of leva. If I forget to take it, within few h I have rage outbursts, can't contain my nerves. Is that normal? Is my dose to low?

[greygoose]

By 'minimum' dose, do you mean 25 mcg? That certainly is too low for anyone. How long have you been on that dose?

Anger and rage can be a symptom of hypo. When a pharmacist mistakenly gave me 75 mcg instead of 175 mcg, I was practically homicidal!

[madness07 in reply to greygoose]

I have been hanging for about 3 years with results up and down, not enough for meds. Then I got pregnant, so they put me on 25 and later increased to 50, I was feeding great. After birth, they reduced my dose and later requested to stop. While I wasn't on meds I had tsh suppression to 0 and immediate lift to over 10. So they put me back on 25 coz I was unwell and complaining. After awhile I was feeling unwell again, so I phoned in and they agreed to retest me earlier - in July. I was OK with it, but since about two weeks I notice the rage outbursts if I forget to take meds. I have 8months old, I do my best to remember, but it still happens.

[greygoose in reply to madness07]

So… You haven't said exactly how much you're taking at the moment. Are you still on 25 mcg? Is your doctor dosing by the TSH only? If so, he knows nothing about thyroid. Is there someone else you can see?

Levels fluctuate with Hashi's, but doctors don't understand that. You must learn as much as you can about your disease, and start being proactive about your treatment. You cannot just rely on your doctors to make you well because their education was inadequate.

[madness07 in reply to greygoose]

My bad, yes I'm on 25 mcg. During pregnancy they upped me because of t4, but now they are stubborn with tsh, even although I suggested that t4 is in lower norm and it's not ideal. I educated myself plenty about it and I know about fluctuating levels in hashi, I even had to explain them when tsh was 0 that I'm not overactive but underactive and it happens in hashi. I'm also biomed student and happened to study thyroid too. It's hard to find anyone, my current gp is a bit clueless but more or less cooperates and negotiates with me and if smth goes wrong I got a reasonable endo. Will phone my gp tomorrow and see what they say.

So I'm not crazy and my mood can be explained by thyroid. I knew about depression and anxiety but rage surprised me. Thanks a lot!

[greygoose in reply to madness07]

No, you're definitely not crazy. You're under-medicated. And, an endo that leaves you on 25 mcg levo for any length of time is not 'reasonable', he's pig ignorant and making you sick. Surely, if you're educated in thyroid, you must know yourself that you are grossly under-medicated, no?

[madness07 in reply to greygoose]

I haven't seen my endo for a long time , cuz there was no need ( I don't want to bother him unless it's necessary), the 25 is my gp. Endo knew about fluctuations and that time only observation was needed as I was feeling good and results were not bad, he ordered to treat in case I get pregnant, otherwise I doubt it would go so smoothly. I know it's very low, while pregnant I was great on 50 and after pregnancy 25 at first seemed OK in how I felt, so I didn't push for more, but now I can feel it's not enough for sure and if rage is related than its getting worse I guess. It's one thing to know smth and other to experience it, so I'm very grateful for every advice! Thank you.

[greygoose in reply to madness07]

Hashi's does get worse as the thyroid is slowly destroyed. So, a constant eye should be kept on levels so that you can increase as needed. When did you have your last blood test? You're probably due for another one, aren't you?

[madness07 in reply to greygoose]

I think last one was is April, in may I phoned when I'm due for next. They said in a year, I was shocked, but it was receptionist who told me that. I was feeling fine so I didn't do anything about it, but about two weeks later I started to get mood swings so I phoned gp I suggested upping the dose to see if it helps, gp said it can have adverse effects and ask me what I would like to do. So I said mb another blood test sooner than in a year... She booked me for July. Mood swings weren't too bad so I didn't push and agreed, but now I will definitely push harder. I cant effort rage with a baby at home. So you have any suggestions how to deal with them?

[greygoose in reply to madness07]

Apart from taking your miserable dose of levo regularly, there's not much you can do. You need an increase in dose. And, if they won't test you before July - which is scandalous, by the way - then you're going to have to wait, I'm afraid.

However, you could go to the surgery and get a print-out of your last results - it's your legal right to have one, so don't take any nonsense from receptionists saying you can't. The, post them on here, with the ranges, and let's have a look at exactly what they've tested, and exactly what the results were.

[madness07 in reply to greygoose]

Thanks a lot I will do that! Will talk to them tomorrow and push for upper dose or test To be done sooner.

[greygoose in reply to madness07]

You're welcome.

[madness07 in reply to greygoose]

Lovely, they treated me like an idiot and said to not forget to take meds then. I manage to get blood test tomorrow and I will also get all results from previous tests. I don't understand why they are like this about thyroid treatment... They don't even believe thyroid test is worth doing more often than every three months, even if I had swings from 0-10 in one month. It wasn't my gp tho. If results will be bad I'm gonna complaint.

[greygoose in reply to madness07]

Well, how can I explain this? You're worth more to them sick than you are well. Strange as that may seem. Big Pharma makes an awful lot of nasty drugs to 'treat' thyroid symptoms: statins, PPIs, Beta Blockers, antidepressants, etc. If hypos got well and didn't need all those drugs, then BP would lose an awful lot of money.

BP funds most medical schools, so they get to decide what doctors learn. So, they teach them that hypo is no big deal, all patients are stupid, whingeing attention seekers who exaggerate their symptoms, and all doctors need to do is prescribe enough levo to get the TSH back into range, and their job is done. If the patient still complains, she probably needs to see a psychiatrist. And, no matter their reasons for wanting to be doctors in the first place - helping people, etc. - by the time most doctors leave med school they have such contempt for patients that they totally buy into this and don't look any further. They have no compassion and no understanding because hypothyroidism is really nothing to make a fuss about, is it? The majority of doctors know nothing about science, or economics, they live in little ivory towers, detached from real life and have no idea how this disease affects people on a day-to-day basis. And they just don't care. They feel they are so superior that they are allowed to scoff at patients, laugh at them, ridicule and humiliate them with impunity. And the fact that when someone is hypo, they are at their most vulnerable and defenceless only seems to excite their sadism.

Now, that might seem harsh. But, I've seen a lot of doctors in my time, and I've come across all those nasty characteristics - perhaps not all in the same person, but even so. I can honestly say, with my hand on my heart, that I have never seen a doctor that didn't make my condition worse, rather than better, no matter how good their intentions. Of course, there are good doctors out their, but even they can't do much because their knowledge of thyroid is so limited. And, that is the fault of Big Pharma. And it will never change whilst Big Pharma rules supreme.

[madness07 in reply to greygoose]

Ehh, no idea about medi school but in biomed they teach us a lots of mechanics and disease background. Guess it would do them some good to learn too. Hopefully it will go well somehow. Thanks again for lots of info.

[greygoose in reply to madness07]

You're welcome.

[MaisieGray]

By "leva" do you mean Levo or Teva? If the former, I'd agree that it is very likely you are undermedicated. Although we are individual in how taking or missing doses affect us, once you have reached a steady state on an adequate or better still, optimal dose of T4, because it has a longer half life than say, T3, I would expect it would be less likely (although not impossible) that within only a few hours you would experience such an extreme reaction. So I'd guess the signs point to being undermedicated. What are your latest blood test results? On the other hand, if you meant Teva, some people (not all) report unwanted side effects with that brand.

[madness07 in reply to MaisieGray]

Sorry it was a typo, I mean levo. I am kinda steady already, it happens only occasionally, but has immediate effect on me, very troublesome. My bloods are messy. Latest were in norm, although t4 was on lower side, but my tsh ranges from 0 to over 10 jumping up and down withing two months even. T3 when was tested was on good side.

[SlowDragon Administrator]

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

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).

You are legally entitled to printed copies of your blood test results and ranges

Getting vitamins tested is essential

Low vitamin levels are extremely common with Hashimoto's

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

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

Gluten intolerance is extremely common too

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

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

healthcentral.com/article/t...

[madness07 in reply to SlowDragon]

I fallow the forum so I'm mostly aware, thank you very much in refreshing me. I even got Izabella Wentz book, I read it. I was waiting for this time to come, when management will be needed. I knew it's gonna be hard to deal with doctors, fingers crossed.