Major hyperthyroidism issues!

[Mumoftwomonkeys]

Hi everyone 👋 I'm really needing advice before we go on a big family holiday at Easter. This is a long one.... please bear with me 🫶🏻

I've had hyperthyroidism ever since I had my second son 11 years ago, I had a lot of symptoms, but only got diagnosed when my tsh went down to 0, 3 years ago, as the nhs only rely on tests, and not symptoms.

When I started carbrimazole at 25mg, I believe, the main symptom that stopped was the night sweats, which I'd had for 8 years! When my tsh stabilised, they kept trying to take me off my meds, and I'd crash badly, even my tsh going down to 0.7, I'd be more unwell then when it was first 0, no strength in my muscles at all, but the Dr's didn't care, as it wasn't below the danger zone of below 0.27, and t3 and t4 weren't dangerous either.

I managed to get back on the meds, but sought help elsewhere, as my specialist wasnt understanding that what was normal for others, wasn't normal, or ok for me.

A natural practitioner told me I needed iodine for my thyroid health, which I took for a year, I went from 8 stone 4, my normal weight, to 9 stone 6 - I have never lost weight with my hyperthyroidism, this weight gain was weird. I thought the natural practitioner was resolving my hyperthyroidism naturally, also with diet and detox, so I agreed with my endocrinologist to come off my carbrimazole. This was last October when I got so sick, I'd had low cortisol as well, and I had every single terrible symptom of Addisons disease. I got so unwell, and very scared, I went to hospital. My cortisol had raised though, so I didn't have addisons, and they did the SST test too, that's when I realised it was my hyperthyroidism again!! As soon as I went back onto my carbrimazole, I started functioning again. I also stopped the iodine straight away, when I read that was the worst thing for hyperthyroidism, and I lost the weight I'd gained, on the iodine, straight away!

My worst symptom with hyperthyroidism has always been muscle weakness, especially in my legs, and leg pain. So now I'm on 15mg of carbrimazole. However, In Feb my tsh was 0.8, which means that as the tests are through my GP, the lab will not bother testing t3 or t4, as it's not below 0.27!

Now, the muscle weakness is back badly, and i know this feeling so well, even though I'm on 15mg carbrimazole. My GP isn't listening, and I called the hospital, and they said there's no way it's down to hyperthyroidism, my tsh was 0.8 in Feb, and my symptoms of muscle weakness are not to do with hyperthyroidism! When I'm on the meds, and its more under control, my tsh is late 1s and early 2s, when it goes below 1, I get really unwell. I don't have data on my t3 or t4, as only the hospital has this information, not my GP.

In desperation, as we go away on a big holiday in 2 weeks, I've ordered a private thyroid test with antibodies, including the Trab, looking for graves disease too. Also, I've upped the protein in my diet, as I had so little, and didn't realise how important protein is for the thyroid.

I'm desperate to improve my health before my holiday. Any advice of how I can do that would be massively appreciated, any advice on what's going on with me too, what I can do, anything at all, would mean the world right now, maybe dosage advice too 🙏

Thank you in advance.

Rachel x

[SlowDragon Administrator]

welcome to the forum

Without Ft4 and Ft3 it’s difficult to say much

Hopefully you are also testing Vitamin D, folate, ferritin and B12

What vitamin supplements are you taking

When were vitamin levels last tested

[Mumoftwomonkeys in reply to SlowDragon]

Originally, when my tsh went down to 0, T4 was high, but on the carbrimazole it came down. Now they've had me off and on the carbrimazole again, and haven't tested t3 and t4 regularly.

So I have my private tests early next week, and hospital tests before my next appointment with the consultant, but I've booked them in before we go away. Those ones will just be tsh, t3 and t4. But my concern is, that they will still show tsh a little low, but not dangerous, and the hospital won't care. They just don't accept that I get really ill with hyperthyroidism symptoms even when my results show "normal", but low.

I take a lot of supplements, I have vitamin d with calcium, as I have osteopenia. I take iron, but that's always fairly low, considering, and I have high b12, due to supplements. I'm just increasing protein at the moment.

Any other advice? Thank you x

[Dizzy2016]

Hi, I'm in the exact same situation as you and it is relentless. Have you had any scans on your thyroid? I ask because it sounds like you're going through flares of thyroiditis, which I am as well - levels never drop seriously low or go up enough- but the thyroid dumps hormones and it's horrific.

[Mumoftwomonkeys in reply to Dizzy2016]

Hi, sorry to hear you're also feeling so awful. What dose of carbrimazole are you on? what other symptoms do you have with that? My neck doesn't feel swollen or sore. Off the medicine I have every single symptom, apart from weight change, on a low dose of carbrimazole I have major muscle weakness and leg pain and it's getting more and more debilitating.

[Dizzy2016 in reply to Mumoftwomonkeys]

I'm not on any meds, they won't give me anything- they wouldn't even give me propranolol when my HR was over 160bpm! I have had soo many symptoms- muscle loss, muscle weakness, severe anxiety (housebound 2 years now agrophobia) jittery, nervousness, weight loss - i lost 3 stone, now started to lose again, poor balance/dizziness, tremors, leg pains too thighs will hurt and tops of my legs, tops of my arms hurt, I've had burning thighs, muscle twitches, muscle cramps, poor sleep, sometimes no sleep for days, I've had one swollen eye and eye lid on and off, hair loss, oh gosh the list goes on

[Mumoftwomonkeys in reply to Dizzy2016]

Sorry to hear you're having such a frustrating and terrible time. I had hyperthyroidism for 8 years before my blood tests showed i had it. Apparently, a htma test will show if your thyroid is working properly, what about the functional medicine route, if the traditional route isn't helping? Do any supplements help? Xx

[Dizzy2016 in reply to Mumoftwomonkeys]

I've been swinging hyper as well, for alot of years but Covid really upped the ticker with it! I've had a HTMA - didnt really explain much I've tried naturopaths I've spent thousands (like £9000) alone trying to get help private drs, surgeons, naturopaths ect. Did only carbi help you? I'm taking a complex, iron, vitamin d, magnesium soaks, omega 3. I dont know what else to try, been looking at L-carnite? Have you tried anything??

[Mumoftwomonkeys in reply to Dizzy2016]

Have you had epstein barr? That mixed with covid can cause terrible illness. I know so many people who have had epstien barr and other viruses from the same family, and they've then got long covid, ME, POTS, fibromyalgia, Lyme Disease, MS, all sorts of terrible illnesses, and it can be very hard to get help and recover.

Ive been advised to increase my protein, as that helps the thyroid, I've heard good reports about Thorne Mediclear sgs powder, reviews on iHerb are good, with 20% discount on the app, but super expensive, sadly. Also, perfect aminos coated tablets. Along with iron and vitamins d, magnesium bisglycinate for muscle strength too.x

[Dizzy2016 in reply to Mumoftwomonkeys]

I haven't had epstein barr, I've never really had any issues, 2 weeks after covid i developed urticuria (thyroid) and it's been a battle ever since.

I'll have a look at them, I haven't actually looked for thyroid support, I'm scared to make the hyper any worse, it's relentless isn't it. xx

[pennyannie]

Hello Mumoftwomonkeys -

To be prescribed Carbimazole - an Anti Thyroid drug - there is generally a diagnosis of Graves Disease -

Do you have this AI disease - as generally the treatment with the AT drug is for 15-18 months and if remission not found - definitive treatment - RAI thyroid ablation or a thyroidectomy suggested ?

Or have you been diagnosed with Hashimoto's - a thyroid specific AI disease where you experience ' swings in hyper ' type symptoms as this AI disease systematically destroys and disables your thyroid with you becoming increasingly hypothyroid and an AT drug generally not prescribed ?

When the thyroid malfunctions several sets of antibodies can be found positive and over range in your blood - which abs are you dealing with - TPO - TgAB - TRab - TSI - TSH Thyroid Receptors and if so what results and ranges do you have on any of these - so we can better understand what you are dealing with and offer considered opinion.

[Mumoftwomonkeys]

They've never mentioned a positive autoimmune test result to me, but mentioned graves disease in a letter to my doctor, so that was confusing for me. I had to change hospitals, as the one they gave me was too far away for me to travel to, but the new one is just as bad. She won't accept that when my tsh is on a downward trajectory, I get really ill, even when it isn't below 0.27, it's very frustrating. They haven't mentioned other treatments to me, as all they want to do is get rid of me.

So my private tests this week will test Trab, Thyroglobulin and Thyroid peroxidase. Also, tsh, t3 and t4 vitamin d.

This weekend in desperation, I'm upping my vitamin d and protein. I need to feel better asap, or our holiday of a lifetime will be ruined.

Thanks for your advice and info x