Flare up: Hi, I havnt posted for a while as been... - Thyroid UK

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Cmoor profile image
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Hi, I havnt posted for a while as been ok but this week I'm not well and only assume it's a hashi flare up. I've had a breakdown 2 weeks ago with just everything getting on top of me family problems and to be honest my thyroid and hashi is a major factor. The doctor back in August put me down to 75mcg from 100mcg as my result was 0.02 one of my symptoms was exsesive sweating and just thought it was due to the heat wave were having at the time. My weight is still going up to now near 4 stone In Just over a year and this is a major factor to my break down as all I'm doing is trying to find a solution by searching the internet and it's taken over my life. My anxiety has gone through the roof I can't go out and I've even left my job as I just want to curl up and not face the world! The doctor has put me on double the dose of antidepressants and I'm slowly feeling less anxious but I think stress has made me have a flare up oh and also my acne is got so bad and i think this is the Levothyroxin. I'm 40 next month and I'm dreading seeing people as I'm just not myself and i know there are worse people out there with awful diseases but weight gain is awful for me especially someone who is body conscience. My next blood test is in a couple of weeks, I take Vit C, magnesium, Zinc, selinium, have 3/12 B12 injections. Is there anybody that can help me whether it's someone that's been through this and now feeling better or just friendly advice.

Many thanks 😌

Clare x

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Cmoor
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humanbean profile image
humanbean

In your last post you said that you felt you needed an increase in your Levo because of the symptoms you were having. But now I see that you had your dose reduced instead because of your low TSH. This is almost certainly a cause or the cause of your current problems. The brain needs adequate thyroid hormones to work properly. Low levels can cause depression, anxiety, psychosis and bipolar. Many people on this forum have written about being diagnosed with one or more of these and when they get their doses of thyroid hormones correct then the psychiatric symptoms start to disappear.

Have you ever had your Free T4 and Free T3 measured? Do you know if you have positive antibodies? Do you know if your nutrient levels are optimal?

Cmoor profile image
Cmoor in reply to humanbean

Hi thanks for your reply, yes I thought I would need an Increase but when I got results doctor called to say I need to come off 100.mcg. straight away because of TSH result, yes I have positive antibodies, on my blood sheet I have here he's asked for free T3 and free T4 but as I remember last time it was asked for they never did it.

Can I ask you a question?

Before going on levothyroxine I was doing ok but since taking it my health has deteriorated do you know why? I'm thinking of slowly coming off it and seeing homeopath May be levo dosnt suit me

Regards

Clare.

SlowDragon profile image
SlowDragonAdministrator

You really need FULL testing including FT3 and FT4 plus vitamin D, folate, ferritin and B12 plus antibodies

Not just TSH or TSH plus FT4

Can you persuade GP to do this

If not, can you afford to get private testing

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

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

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 money off offers.

Have you recently had change in brand of Levothyroxine?

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you do your tests?

Cmoor profile image
Cmoor in reply to SlowDragon

Thank you very much for getting back to me, I am seeing to doctor tomorrow for a review and will take blood form with me to see if he will add the rest and i will leave the levo for 24 hours prior to blood test this time as I didn't last time.

Kind regards

Sveistre profile image
Sveistre

Hi Clare, I’m reading your post and it seems I’m reading about myself half year ago..the doctors never told me to leave 24h (after last Levo tablet) before doing your bloods. Thanks to the people here I found this info and finally got my blood tests right - Hashi’s and the dose is too low. But even before knowing the results I totally changed my diet - went Keto, added adaptogenic berbs and medicinal mushrooms complex pills along with B12, vitamin D, selenium, magnesium etc.. and I have to say I’m starting to feel much better and the weight comes off (16lbs in 2 months). I hope that helps

Cmoor profile image
Cmoor in reply to Sveistre

Thanks for your reply it's very positive to hear, so did you get the information regarding what to do from your endo? Mine was a complete waste of time and money. Glad your better x

Kind regards

Clare x

Sveistre profile image
Sveistre in reply to Cmoor

No not from the endo, I found this info on the internet, actually I found dr Eric Berg on youtube and he has plenty of videos related to hypo, causes etc...that’s why I decides to went Keto

SlowDragon profile image
SlowDragonAdministrator

Very few endocrinologist understand the link between the gut and thyroid

Or how important OPTIMAL vitamin levels are and although, some endo's test for coeliac disease, they rarely suggest trying strictly gluten free diet, even if Coeliac test is negative

Yet we see hundreds of Hashimoto's patients on here find strictly gluten free diet helps, sometimes very significantly

bevlah profile image
bevlah

Hi I’ve been diagnosed for almost 12 years I’ve never been “well” for more than a few months of the year at any one time. Just before my diagnosis I thought I was going mad and went to gp negging to be sectioned ! Luckily the psychiatrist I was referred to insisted on a full blood screen and low and behold the all important tsh was through the roof I think it was in mid 80,s I remember my gp commenting that he didn’t know how I was putting one foot in front of the other never mind working full time and raising 2 young children . It took six months to get well . I’ve recently had a relapse I know I am very attuned to drop in temperature . Sometimes this condition is overwhelming and the road to being well is difficult and there is no one size fits all remedy because we are all unique. I’m now waiting to see endo who has no idea bless him . I think we don’t realise how unwell we are until we start to feel a bit better and unless you suffer yourself it is hard to understand or comprehend how shocking we can feel at times . I got really upset because I couldn’t remember my sisters name and just sat and cried. I’ve had an increase in meds and three weeks in am starting to feel a bit better . Having bloods taken in 3 weeks and going to insist on everything ! I don’t even know if I have hashis? I’ve learnt al lot through this forum but just hang in there we will get there in the end . Knowledge is power you just have to use it wisely when dealing with consultants egos . Take care

Cmoor profile image
Cmoor in reply to bevlah

Thank you for your reply, I really do hope you feel much better soon.

Yes this is a wonderful forum and I'm learning quite alot 😀

Take care xx

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