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Have you managed to get a balance?

(11 Posts)
KinkyDoritowithsparkleson Tue 13-Mar-18 09:57:41

Having a hard time at the moment with Hashimoto's and Fibro.

I just wondered if anyone has managed to feel better and get more of a life with an autoimmune condition and, if so, how you've managed it?

timeistight Tue 13-Mar-18 13:25:00

Yes, I take 2.5 grains of natural desiccated thyroid extract every day, vitamin B12, B complex, selenium, vitamin D and vitamin K2. I had had thyroid problems for a very long time before I was eventually diagnosed and treated and now feel better in my sixties than I did in my twenties.

What's happening with you?

KinkyDoritowithsparkleson Tue 13-Mar-18 14:44:35

Thank you for this.

Just up to 175mg Levo - I asked for this raise as bloods were in range but T4 and T3 could do with being a bit higher. I've felt really ill the past few months and picked up every bug going which hasn't helped.

I'm now taking a vast cocktail of supplements to try and feel better - D3, Vit B1, B12, B complex, selenium, magnesium, vit k, iron, vit C, zinc, various omegas, ashwanga, liver care tabs. I'm now gluten free, sugar free, dairy free.

I was starting to feel better but feel like I've been hit by a bus today. I'm just so exhausted and wiped out. I have zero resilience - I'm just shattered.

I'm 38 and I feel like my life is over.

SluttyButty Tue 13-Mar-18 20:16:23

Taking too much thyroxine can make you feel really crappy too, I’ve been overmedicated on it and I felt really unwell. I have hashis and fibro and other autoimmune diseases too and I’ve had to accept my new normal. I have to pace, for me I’m never going to feel truly well again.

I’d ask to have your tsh and t4 tested again.

KinkyDoritowithsparkleson Tue 13-Mar-18 21:19:39

Thanks Slutty - what symptoms did you have on overmedication? I'm very hypo at the moment - tired, cold, not losing weight. My T4 was mid range and TSH was 0.26. people on Health Unlocked forum advised asking for a slight raise to try and get T4 a bit higher. I am conscious of not wanting to overdo it.

SluttyButty Wed 14-Mar-18 08:33:07

Kinky you don’t necessarily lose weight when you’re overmedicated. Your tsh was on the low side of normal so definitely get it checked again because you could have slipped into hyper. I tend to avoid any thyroid groups because when I did join a few I read some really dangerous advice.
Symptoms I had when hyper were that I felt very poorly, my insides were shaking like an (genuine) anxiety feeling, internal vibrations is how I described it to the rheumatology nurse who’d discovered I was over medicated. I also had heart palpitations. Never lost any weight and still felt cold and incredibly tired.
I feel best when my tsh is around 0.4ish and have to change my dose periodically with my Gp to keep it in check.

timeistight Wed 14-Mar-18 12:52:24

Just to say that you can't be over-replaced if your FT4 is mid-range.

You're only hyper if your TSH is suppressed and both FT3 and FT4 are above the reference ranges, but if that's because you're taking too much thyroid replacement, you're over-replaced, not strictly hyper.

KinkyDoritowithsparkleson Mon 19-Mar-18 15:40:07

Thanks both. No palpitations/anxiety, but still feeling incredibly wiped out. sad

Don't know what else to do.

Ekphrasis Tue 03-Apr-18 08:27:46

It's tricky as t4 does vary a lot during the day, t3 varies even more.

I agree with slutty. I find health unlocked can be misleading regarding the t4 and t3 as they don't take into account natural variations during the day. Which is why drs do look at tsh; where drs went wrong in the past is a) recognising that tsh needs to be a tad lower if on thyroxine and b) listening to the patient's symptoms.

There are some people who really do not respond to thyroxine and do need t3, but there's ways of working that out with an endo.

I did find their advice on ferritin was correct for me, something a relative who researches thyroid and iodine confirmed to me recently. I have to keep that above 70.

I do feel wiped easily if a little over medicated, no palpitations, I tend to wake around 2-3 am for an hour or two then feel exhausted all day and need naps. I did feel as cold actually, weeing a lot in the night. It can affect your blood sugar/ insulin levels. I think I got more dehydrated more easily which made me feel crap (this makes sense as when hypo you tend to retain water).

I've recently started to learn that my best level is around tsh 0.8 -1.

I'm taking 175 as I'm pregnant and my tsh was 0.2 though t4 was mid range. Despite them all saying it was fine, I wasn't sleeping great and having bursts of energy then being wiped and foggy headed for a couple of days. I've knocked it down really slightly to alternate days of 150 and 175 and started feeling better in about 10 days. Joints feel better too.

An endocrinologist told me a couple of years ago some people do need to be really suppressed to feel well; I tried it for a long time but looking back I think I was struggling. I was living in a slight chronic fatigue state and I did have muscle aches that matched fibro symptoms.

I've found some advice on health unlocked to be a bit erroneous. Through my own research I learnt that a slightly hyper state means the half life of the t4 is less, which make sense as everything is going 'faster'. To me I feel that reflects the ups and downs I get if a bit over medicated. So I do think there's a sweet spot for individuals. It's trying to work it out though.

But also, you can't blame everything on thyroid. There are so many other things that cause these symptoms.

Only do the dairy and gluten free thing if you've identified a clear stomach issue with those things, or your fibro. I did develop ibs for a while; going dairy free (lactose free really) helped and now I'm fine again. My iron went up during that time, I think as calcium can block absorption. (I was drinking a lot in decaf and red bush tea all day).

Health unlocked talk a lot about gluten but the actual proven link is if you're an undiagnosed coeliac. Coeliacs are more likely to develop an under active thyroid esp if not treated.

And it sounds like your thyroid has totally given up so nothing is going to get it going again. And you are absorbing the thyroxine. Tbh most gut research points to good gut bacteria affecting most things these days including weight, health, even anxiety and mood. So eating a really wide range of foods and some fermented ones really helps.

As said above, get another test and think about what you might do. Ironically I remember in the past my t3 being no different on different doses of thyroxine while the tsh was and the t4 was too.

Ekphrasis Tue 03-Apr-18 08:38:06

Sorry, to add, I have some hypermobility which is worse post children. That definitely is hard to deal with pain wise (I think there are bits of fibro in there) and pacing and acceptance have had to be a big part of my 'regime'.

I think hormones affect it too.

Thyroid adds an extra annoyance as going either way affects muscle strength- so my priorities are trying to keep strong. And I do have to have the odd day where I do hardly anything in order to reserve energy. And looking back, I've always been a bit like this, even as a child.

Being hyper made muscle cramps much worse.

Sunshineworshipper Wed 04-Apr-18 22:52:39

I'd love to say yes but unfortunately no. I have had a total thyroidectomy and thats when all my fibro and other autoimmune issues started. I'm only early 30s and can't work and constantly battle with fatigue and pain.
Things that have helped: hyperbaric oxygen, cbd oil and cbd teabags, amitryptaline and taking thyroxine on empty stomach in morning half hour before brekkie, gentle exercise, dihydrocodiene low dose. ViTAMINS wow they woke me up...vit d and b12 daily I take at dinner time with food. Never take them within 4 hours of your thyroxine.
Things that haven't worked: pregabalin, gabapentin, duloxetine, tramadol, psychology therapies, intense exercise.

Hope some of this helps. Mine hasn't gone away or worsened but I've learned to live with it.

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