I thought I’d join as I’ve been diagnosed with hyperthyroidism and desperately seeking something positive out of this ... and of course hopefully my post will help others
I was diagnosed with hyperthyroidism after going docs and having blood tests .. I’m 51 so I thought my irritability and feeling hot all the time was the menopause
I had loads of blood tests and a few days later doc rang me to say I need to get some meds as I had hyper thyroid so collected carbimazole the next day . I’m on 10mg a day
and been taking them for exactly 4 weeks
My doc told me she was referring me to endo specialist. I got the appointment very quick and 2.5 weeks ago I went to see him
He was very nice , seems very efficient and was clear on everything he said to me and also gave me 80mg a day Beta Blockers to take for the anxiety and heart racing
I had blood test before the appointment to test for Graves’ disease... it came back that I don’t have Graves but do have a nodule .. an appointment has come through quick for a scan
Up until a day or so ago I felt very positive, my symptoms were lessening, wasn’t feeling so hot all the time , heart racing improved massively, irritability had gone , almost feeling like myself ... wasn’t so happy about my hair thinning but I spent a fortune on various shampoos to stop thinning and make it grow again hoping it would stop very soon 🙄 ..
From knowing I have Hyperthyroidism I changed my diet... I’ve gone totally gluten free, caffeine free , not much dairy.. only organic milk for decaf tea, swapped honey for sweeteners in hot drink
No red meat , only turkey , fish , no potatoes, no eggs, no mushrooms. More fruit and basically cut down on rubbish
I never lost any weight before being diagnosed.. I did eat a such lot though .. everything and anything in fact
But I did lose a few lbs after I changed diet ...
So now ... this is why I’ve decided to write on here ... The past couple of days most of my symptoms of hyperthyroidism are back !!
PI’m hot all the time .. feel like I’ve not washed and paranoid I smell but in fact have 2 showers a day , I’m so irritated,irritable, feel paranoid , impatient, depressed , weight is coming back on , i darent do much with my hair cos of fear of it falling out so leave it wet and put it in a clip
I don’t have the racing heart or should I say don’t notice it , I’m thinking I can feel another nodule on the other side
Is this how hyperthyroidism is... feeling ok then going back to square 1?
Does my diet seem right or am I just wasting money on gluten free stuff and more expensive food (organic and more expensive fruit and veg )my endo said there is no need to change diet (but I stuck to the diet I changed to )
Should I let my doc know I suspect another nodule.. (I have a scan in 2 weeeks so both sides now need looking at not just the one )
Does it seem like I need more carbimazole and is the hair loss/ thinning temporary 😥
Thank in advance
Any advice or anyone wanting to share their experiences are very welcome
I'm so sorry you're feeling bad, but I wonder, did you get copies of your blood test results? You say the antibody test for Grave's was negative, but what else did they test? What were the results? The reason I ask is that often, doctors get it wrong about hyperthyroidism. If your Grave's antibodies had been positive, then there would be no doubt about it. But, as they were negative, it's possible they got it wrong. Which is why we should always get copies of our blood test results. We need to know exactly what was tested, and exactly what the results were.
Sorry if that's not what you want to hear, but we've had so many cases on here where doctors got it wrong about hyper, that I always think it best to make sure. I know a lot of symptoms cross over from hypo to hyper, but your symptoms do sound very much like hypothyroidism. Plus the fact that the carbi doesn't seem to have helped. If I were you, I would want my TPO antibodies tested to see if I had Hashimoto's Thyroiditis.
As to your diet. Has going gluten and dairy free made you feel any better? I'm wondering if that's really necessary. People with Hashi's usually go gluten-free to lower antibodies. But, if you don't have antibodies, do you really need to? I don't think dairy-free is necessary unless eating dairy upsets you in some way.
Giving up honey for artificial sweeteners were definitely a bad move. Artificial sweeteners are very bad for thyroid - and a lot of other things, as well! Cutting out red meat means cutting out a source of iron. Be careful with your iron levels. And, why no potatoes, eggs or mushrooms? What's wrong with them? They are full of good things. You need a varied diet to get as many nutrients as possible. Low nutrients are going to make you feel worse. More fruit just gives you more sugar, so be careful of that. Also, are you getting enough fat? The body needs fat. And salt. Cut out the rubbish - processed food and oils, unfermented soy, too much sugar, artificial sweeteners - by all means, but keep as much of the good stuff as agrees with you. Don't cut stuff out just for the sake of it, or according to fad diets.
When I go to docs in week or so to have blood tests I will ask for print outs of the blood tests I had
The Graves’ disease blood test was done seperately and after I had initial blood tests no other test was done when I was tested for antibodies .. doc wanted it doing for when I had appointment with the endo
I’ll do my best very soon to get copies
I’ll certainly ask about being tested for being hypo seeing as I haven’t got Graves’ disease
Going gluten free has made me better.. I have spent a lot of money though so I will relax a few things now I think ..
I have done a lot of reading on thyroid and have checked over and over and so sure I’ve read to go gluten free if you have hyper
Also the dairy free thing I read about iodine being in dairy
I’m so sorry.. I meant to say I’ve swapped sweetners for honey and will continue to ... I do know not to use organic or expensive honey though
I’ve also read to limit red meat
And that potatoes, eggs and mushrooms were high in iodine “‘that cause the thyroid to over produce “
I’m getting the feeling that I’ve read too much elsewhere and I’m just confusing myself . I’m really not in a good place
Yes, it's perfectly possible that you are confusing yourself now. It's a lot to take in at a time when our brains are not functioning at their best.
When I asked what you were tested for, I meant when you were diagnosed. The problem is that most doctors only test for TSH - which isn't even a thyroid hormone, it's a pituitary hormone. And, if the TSH is low, immediately leap to the conclusion that you are hyper. FT4 and FT3 should also be tested, because you will only be hyper if they are over range. So, I was wondering if they were tested.
I wasn't suggesting that you be tested for hypo - don't go and ask for that! Although, of course, all three tests mentioned above should be done as a matter of course, although they often aren't! I suggested you ask to have your TPO antibodies tested. If they are high, you won't necessarily be hypo, but carbi would not be the right treatment for you. Bit difficult talking about all this when I don't know exactly how much you know about it all. I don't want you to think I'm insulting your intelligence!
As for iodine, a lot of foods are high in iodine, you can't cut them all out. These are things most people eat all the time, and you only need a low iodine diet if you are going to have RAI treatment, I believe. Besides, iodine used to be given to hyper patients to lower their thyroid hormone production. People have very strange ideas about iodine, so I really wouldn't even think about it, if I were you. Just eat what you enjoy.
Glad to hear you're replacing artificial sweeteners with honey, and not the other way round! lol But I don't understand why you say this : I do know not to use organic or expensive honey though. Why?
You are wise, I think, to try to reduce your iodine intake somewhat but I concur with greygoose that you don't want to take it too far as there is iodine in loads of things. You noted earlier that you are eating fish - sea fish, seaweed and sea salt are the highest sources of iodine available.
Poatoes, eggs and mushrooms have only minimal iodine. In eggs the iodine is all in the yolk so you can have egg whites as much as you like, to be honest I've never heard of iodine in mushrooms being an issue. I would advise you to look for the iodine content in various foods and just avoid the biggest culprits. Don't follow the iodine free diet that is only for RAI or those with thyroid cancer pre-op.
Also - sorry regarding the hairloss, it's probably related to the change in hormones and will stop on it's own. It feels horrible, I totally get that - I went through ups and downs over the course of 18 months that meant my hair fell out 3 times, but each time it stopped and now it is thickening up again.
Hi there i was diagnosed as hyper back in july but i also have hashimotos and my levels are now hypo, greygoose has helped me so much over the few months when times have been very difficult.
Ii started on 20mgs of carbi which did take a very long time to kick in around 8 weeks as when you first start carbi it can make things worse at first, i was told it can be several months or more to feel a little human again and sometimes even more to find the right titration dose, my experience of hyper was awful just like yours and a couple of months on i had good days and bad days but it is a long fight with your body and nothing will happen quickly, i yearned to have my old life back but the difference now is that i know im over some of them awful symptons now and can see light at the end of the tunnel however, im still on my 5th month of work as im atill not able to do things i use to at the moment. Its important to learn as much as you can from the this forum as the people here are truly knowledgeable and they are the ones who have been there and still are. Please rest as being hyper is much strain on your body and particulary the heart. Put your feet up and look after no1.😊
Well, my diagnosis was Hashimoto's & Hypothyroidism. So I'm afraid I can't advise or reflect much on Hyperthyroidism.
I Just recall "hyper" like symptoms in the past before my diagnosis and sometimes on occassion since.
But, do you think you may have been a little hasty in making such changes to your diet? You were eating healthily before weren't you. Why would you give up potatoes? Eating wholesome fresh, natural food is good? Artificial sweeteners ? That's also a 'no' from me! Good idea to cut out or down on "rubbish" if by rubbish you mean lots of highly processed foods and sweets, pastries. I would go back to basic healthy diet. Eg 3 pieces of fresh fruit, root veg, greens. Potatoes, porridge. Cut down on caffeine- yes ok. Drink Plenty water.
About all that money you've spent on shampoos - PLEASE don't. You have to be so careful with the Hair Growth Shampoo, the one I'm thinking of can be dangerous to circulation if left on scalp too long - I wouldn't touch it. Please use a gentle basic shampoo and do as little as possible to your hair.
I read an article by Dr Miriam Stoppard a while back. It mentions that we don't have to rub our hair so much. I have been extra gentle when washing my hair since then - and it has helped.
I do hope you get accurately diagnosed soon. Don't be shy about asking what blood tests you've had and geting copies of all results details - and asking for ALL the Thyroid Antibodies to be tested as already advised by Greygoose xx
Your endo said you didn’t have Graves, but not that you aren’t hyperthyroid (and nodules may lead to hyper symptoms). Just a warning to be careful re cutting too many dairy products out of your diet, as being hyper can increasethe risks of osteoporosis.
This site has very essential information of all kinds regarding hypothyroidism. You can use the search and find two more about hyperthyroidism. stopthethyroidmadness.com/g...
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