Graves question

Does anyone here with Graves get hot flashes and fuzzy headed when your thyroid labs seem to be normal? When my thyroid was hyper, I had several days of hot flashes, fuzzy head, heart racing, palps and shaky. since then my labs have been normal range on all thyroid test but I still get occasional hot flashes, shakiness, heart pounding. Is it possible to get short burst of too much thyroid to make my body react this way but it doesn't show up on test?

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  • Good Morning, I would be really interested in any replies also as I have Graves and have the same symptoms and my levels are also within normal range. Have a problem with my mood and weight gain also!

  • I've left a reply to the OP but I have to say Seaside54 that Ive always felt that 'the range' was so ridiculously wide that you would be feeling really ill if you didn't fit in it somewhere because you can be feeling pretty awful and still be 'within range'.

    That's only my personal opinion.

  • Eagerly await replies...I have same situation.

  • Sorry, I really don't know why it is. For me, I think it took quite a while for my body to get used to being 'normal'. My bloods were ' within the range' but I still occasionally got slight hyper symptoms, even now, three years in remission, I still wear layers because I get really hot.

    Even before my Graves I never ever had good body temperature control, my husband jokes that he got a 'defective model' when he married me and I've always had fairly shaky hands. To be honest I've just accepted it as 'me'.

    How long since you stopped your treatment? Are your symptoms as bad as when you were first diagnosed?

  • I haven't had any treatments yet. I also have Sjogrens and RA. My thyroid became hyper twice and my eyes started the bulging thing. By the time I got appt with the Endo he took blood and levels were normal although I still didn't feel normal. I had the same symptoms return so I asked GP to check thyroid and it's still in normal range. Rheumy said she thinks I have graves even with test saying otherwise. I just wondered if these things still occurred when labs are normal since I have other auto immunes, im not sure where to place blame of my symptoms. I have my second apt with Endo in a couple of weeks.

  • Gosh, that's a bit off. Have to say that my eyes felt decidedly off before I was ever diagnosed with Graves. I haven't got thyroid eye disease but my eyes are really dry, my vision was really blurred, I got a sort of vertical double vision in that when I watched the credits in TV I used to have two images one above the other and if I read for too long I just couldn't see clearly when I looked up.

    I was a bit that way before being diagnosed but for most of the year of my treatment it was very obvious. I'm much more diligent with my artificial tears now and there's bern a big improvement so maybe your Graves will eventually show up in your blood tests.

    It must be very frustrating to be hyper then not be hyper etc.

    Interesting too that your rheumy is sure you have Graves. I'm seronegative for inflammatory arthritis and at my last rheumy appointment the rheumy said he thinks I'm getting Sjorgens even though I don't have any markers for it. Rheumatologist seem to accept you have got something even if you don't have the antibodies for it.

    Don't know if I told you but I have really reduced my thyroid antibodies by going totally gluten free.

    I decided to do that when I was told last year that I had inflammatory arthritis - I already had several other autoimmune conditions - and that's me been GF for a year now and there was such a drop in my antibodies last time - I knew they were coming down - but my AntiThyroglobulin Abs was still over 100.

    This time it is right down. I queried it with BH and yes they were my results which is the great news - the bad news (sort of) is that as going GF has had such an effect on my antibodies I won't be eating the lovely fluffy fruit scones theysell in my local garden centre ever again.

    So if you have other autoimmune conditions it might be worth trying GF.

  • Your dry eye sounds like sjogrens to me. I had the eye problem long before I was diagnosed with it. I think I've had the thyroid problem for a while too. Rheumy says immune system can attack thyroid at times too and cause the intermittent hyper and not always Graves' disease but the eyes protruding is for sure a Graves symptom. I'm working on the diet. I do pretty good but sometimes I want to be the old me and enjoy a Dr. Pepper and chocolate. :). It's hard to not do what you've done for years. How long after you became gluten free did you start seeing improvement? Are you also sugar free? Sugar alcohols and stuff that's hidden in gluten free stuff.

  • In July 2015 my Anti Thyroidperoxidase was 31.3 <34 and Anti thyroglobulin was 401.0 <115. I went GF in the September 2015 and in December 2016 they were 9.7 and 205.9.

    So I saw results with my Anti Thyroidperoxidase quite soon, my AntiThyroglobulin went down but much more slowly to begin with then this time it just dropped.

    They went steadily down until the results I got this week were 12.6 and 51.6.

    It might just be a total fluke rather than my gluten free efforts but who knows.

    I am pretty much sugar free, I eat very little, I have an odd square of very dark chocolate but I don't eat sweets, biscuits or cakes, I don't snack between meals, never eat junk food, and I no longer drink fizzy drinks. I occasionally have an odd tiny glass of red wine. I eat unsalted nuts, I don't eat the vast amount of fruit I used to eat in the past either - I became T2 diabetic during my treatment for inflammatory arthritis so I've had to eat my way out of that with a low carb, high fat diet, in a way that has probably helped me stay gluten free.

    I used to love Old Mout cider and the Aspinall flavoured ciders but I think of them as liquid sugar so I no longer drink them. I stick to water and decaf teas and coffees.

  • Graves antibodies will show if you have it;testing thyroid panel is pointless without antibody test too. Good luck, it's miserable - made worse by not knowing. Thinking of you x

  • my antibodies test has been negative also. I suppose it could just be my autoimmune attacking my thyroid as it's attacking other organs which stimulates it to produce more but not sure why my eyes would protrude if it isn't Graves. I see my Endo in two weeks and hope he has some answers for me.

  • I have also been told ( Im within range) doesent mean our bodies are happy,

    Like yourself Ive been having sweating episodes, Ihave reduce my thyroxine by 25mg

    and they are less frequent, Im afraid the Docs not realy interested as Im 79 he prob wants me to just melt ! best of luck........

  • I'm 76...I get the same reaction.......

  • Oh my god I've been waiting for someone to come up with this question, hot flashes ! Well mine are literally like someone has hosed me down !! It starts behind my next then goes down my body from there I was in the chemist this morning and I had one come over me , then my face was pouring with perspiration just dripping off my face I was so embarrassed, not sure what to do, as this symptom has only been with me for about 6-8 months.

    Any advice anyone ???

  • You dont mention your age ? could it be the menapause .....

  • I have graves and when I was super hyper I had the same, however now I have had my thyroid removed, and am not being medicated properly, I still get them and the fuzzy head usually occurs when I am not on enough medication and am slightly hypo. It is possible to get fluctuations depending on what else is going on, if I exercise a lot, I get low quick, if I am stressed I also don't take on media well. I completely agree with fruitandnutcase about ranges. I have ended up ignoring the lab ranges, they just don't work for me. If I listened to the docs telling me I was perfectly within range, then I'd have myxoedema, blinding headaches, swollen tongue, severe depression, no energy, really cold (not something a graves person usually has!) etc etc etc. what your range is, is not the same for someone else and what you react to in the meds is not what someone else does, so I would advise work on what you feel and ignore the labs.

  • Hi. I have graves and have also experience these symptoms every now and then. I always wondered if it's part of early menopause as im 41/ haven't had kids and the thyroid controls all our hormone levels. There maybe something in it. But now I'm more balanced and seem to have settled on 5 mg of carbo a day my symptoms are a lot less. I have my first blood test in 3 months on the 9th and can't wait to see what my blood levels are as I've felt pretty good in the last month. Alex

  • I was told by a consultant that you can have intermittent release of hormones causing symptoms of grave disease, but he also said that the thyroid would have to releasing these hormones for approximately 10 days prior to a blood test to be picked up in the results.He also was open and said that is why some people don't get a diagnose straight away.

  • Not sure how a person treats intermittent thyroid. Like Trying to hit a moving target.

  • I have the same symptoms frequently, the mind fog is debilitating. I have a theory that with graves you produce TSH antibodys at different levels some days . The days I feel foggy and ache with flu like symptoms I think this is a bad graves day and have to rest accordingly.

    My Endo indicated that as long as you have some thyroid you can never feel 100 percent as your levels can fluctuate daily. That has to be correct even normal folk must produce different levels of thyroxine according to each day's activity.

    Graves is a difficult disease we can never be cured we just have to accept the bad days and try and rest accordingly.

    Love and hugs x

  • Are you taking any meds,?

  • No melds yet. Thyroid problem is new.

  • I had Graves; then radioactive treatment some years ago. Long story, but briefly, I went to see Dr. Peatfield. It's absolutely essential to support your Adrenals. Also look at Wellsprings website in Guernsey. I am on their plant based progesterone cream which is helpful. Lots of info on website.

    I only have a small part of thyroid left but support this with Seagreens and iodine. Everyone is different so do make sure you read all you can. Dr.P's book is excellent and so is David Brownsteins - Iodine, why we need it and why we can't do without it.

    As I don't absorb very well I use a powder mix (Kiki Superfood mix) - it's expensive but you only need a little per day. Nutri Advanced is good for thyroid and adrenal supplements as is biocare. It took me some years to find exactly what was right for me, but am now fine.

    Good luck.

    Jxx

  • Omg don't go by the results u get from doc they don't seem to get it lol my results kept coming back normal and I ended up seriously over medicated I was a mess shakes weight dropped I was completely I'll dizzy my anxiety was off the scale

  • I should be delighted if my weight would drop, but despite cutting out most carbs & eating much less, I dont seem to lose any weight, I agree the thyroid gland is a very temperamental little organ.... ..

  • Love this question.

    In a word, the answer is: Yes.

    There are many symptoms that can be caused by being either hypo or hyper -- or, as crazy as it reads, being a bit of both!

    Some people can actually have Hashimoto's and Grave's simultaneously.

    Even if that is not the case, as simultaneous Hashimoto's and Grave's is not all that common, palpitations and brain fog can be caused by being either hypo or hyper. Brain fog or fuzzy- headedness can be exacerbated by low B-12, among other lacking nutrients. Shaking can be caused by hypoglycemia (low blood sugar), which is common among those who lack adequate thyroid hormone; or shaking can be caused by being hyper.

    Hypoglycemia can also make you feel hot or even cold. It can also bring on a sweat of heat or perspiration of a cool and clammy nature.

    Making sure to go no longer than two hours without some sort of carb/protein/fat snack to help maintain consistent blood sugar helps tremendously if your shakes are from being hypoglycemic at that time. Doing so, you can discover whether or not low blood sugar is an issue.

    The hypothyroid body will keep you wondering what is going on. When T3 is not adequate for every cell of the body, then many negative symptoms begin to occur throughout the body. Hypothyroid symptoms are often of the ilk we have learned to associate with being hyperthyroid. This happens because hypothyroidism can produce symptoms similar to being hyper.

    After exhaustive research (and I'm still researching), I have found that most every symptom of oddity I've ever encountered became yet another exclamation point on the goal at hand: to get enough T3 into every cell of my body and to work diligently in keeping that optimal level consistently maintained..

    It's a process! Not easy. Confusing at times with symptoms that blur the line between hypo and hyper. But nine times out of ten... it's just hypothyroidism and its quirks again!

    Hugs!

  • I have other auto immunes which cause me fatigue, muscle aches, joint pain but the only time I had the hot flashes, racing heart and feeling of a head cold was when my thyroid became hyper. When these symptoms returned and my test were in normal range I worried maybe it wasn't my thyroid. I thought I might actually be sick this time. Lol. I feel much better if I know what's happening and why.

  • Well I am one of 'those' people who have Gravex And hashimoto's as my Endo spec said to me I am complicated I am on both carb and Thyrox !! I am having so many side effects my latest ones are lumps/red marks on throat wall and back of throat plus feels like I have a constant lump in my throat, I'm so tired but cannot sleep, pain everywhere ....... I am sick of going to the doctors !!!

  • lumps in throat are from the thyroid or the meds?

  • Yep, all the symptoms and now a bulgy left eye...tis pants as I know levels fluctuate but I just cut my cloth accordingly. House is a tip etc but tough lol. I'm on you and take it when I start get too symptomatic. Endo is supportive and has been better than some of the ones I've heard about on here! Good luck, thinking of you! X

  • LOL NO IM NOT ON YOU!! Im on PTU!! looked a right weirdo there eh?? :-D :-D

  • I knew what you meant. LOL Do you still have your thyroid? If so, would removal help at all or make it worse?

  • Ah yes i do - my endo wanted to do either surgery or rai - neither appealed so i went on carbimazole, got worse and eventually went on ptu and bingo! I found my marbles, plot, script and charisma all at once lol!! Symptoms improved hugely and quickly on ptu and i haven't had half the bother. Still have crashing fatigue, pain, eye issues, weird symptoms like buzzing, pins n needles etc and sleep still largely fitful but thats partly due to other issues in life as well so id say try the gentler ways first and avoid booze n fags, eat as well as poss, add supplements in for optimum nutritional status and make sure you get copies of your blood results. Im a bit useless there but some of the folk here are amazingly knowledgeable about all that. Xx

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