can you get mexedema from hashimotos hypothyroide if no medication ///and high tsh can get to be in danger?

[weazle74]

my doctor keeps saying i will die fro mexedema in one years time fo not taking medication but i feel beter without it it makes me so ill . the symptoms of hypothyroide is nothing to the site effects that i feel i am woried

[diogenes Remembering]

He's right! If you don't treat yourself you will eventually get myxoedema and die of it. Might not be a year but let's say the process up till then will be a terrible one for you. Recovering from hypothyroidism can be difficult as you search for the best solution and your body slowly responds. But the struggle is worth the price.

[weazle74 in reply to diogenes]

i feel ill with thyroxine

[shaws Administrator in reply to weazle74]

I did too, feel very unwell with levothyroxine. The fact, too, is that doctors will now only prescribe levothyroxine.

There are a couple of other hormone replacements but you'd have to buy them yourselves and members will be willing to help.

First of all, if you've not had a recent blood test and if you didn't follow the advice below ask for another test:-

It has to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between dose (if you were taking any) and the blood test. Your GP should also test B12, Vit D, iron, ferritin and folate - deficiences in these also cause symptoms. Everything has to be optimal.

It is slow and steady with increases. You start on a small dose and I shall give you a link which may be helpful.

Some people find a great benefit with a combination of T4 (levothyroxine) and T3 (liothyronine) but T3 has been difficult for a while now so it may be more beneficial for you to source one of the very original hormone replacements which contains all of the hormones a healthy gland would do and it is called Natural Dessicated Thyroid Hormones and contains, T4, T3, T2, T1 and small dose of calcitonin.

You'd have to put up a fresh post asking for a private message to be sent to you where you can source NDT (natural dessicated thyroid hormone) which is the very original replacement. It is more conducive to the human body as it is made from animals' glands.

If you decide to do this members will respond helpfully.

naturalthyroidsolutions.com...

NDT is usualy measured in 'grains' i.e. 1 grain is around 100mcg of levothyroxine so you begin on half a grain and every 2 weeks increase by 1/4 tablet.

naturalthyroidsolutions.com...

[weazle74 in reply to shaws]

done test a few times in one month i done 3 fiest was tsh11.7 t4 13.4 2nd was tsh 89 t4 13.4 3rd test tsh 7.9 and t4 13.5 t3 4 46 so i started thyroxine 50 and done the test again and tsh was 9.3 t3 3.31.t4 13 9 how comes went up with thyroxine and it was lower without /i am going to stay off medication and see iif just go back normall since february i found out i have hashimoto after feeling very weak ... i am trying to understand all this . thank you i will go to the ling and see it thank you so much

[jimh111 in reply to weazle74]

We really need to see the reference intervals (numbers in brackets) for these results. If your blood tests have typical reference intervals then your results are not bad at the moment (apart from the TSH 89 which may be an anomaly). Due to your strange results they should always measure TSH, fT3, fT4 to get a picture of what is going on. It could be that your Hashimoto's is releasing bursts of hormone, or your hormone levels are declining. So, it may be that you felt worse when taking levothyroxine because your thyroid was underperforming at the time. Your hormone levels are not bad at the moment (but not good either). If your fT4 should fall below 10.0 it will be important to take thyroid hormone as you may decline without realising it. Talk about myxoedema coma or death are premature.

[weazle74 in reply to jimh111]

well thanks my tsh was 7.9 before medication and with is 9.3 this confused me....

[Hidden in reply to weazle74]

It's gone up on thyroid hormone because your body is saying yum yum that's exactly what I need give me more. You need more thyroid hormone. Take your thyroid hormone if that's what you've been diagnosed as needing because yes you will become seriously ill and will die. Don't mess with your thyroid hormone. I am not going to explain all my experience here again but I speak from experience. I almost was in a coma because a endocrinologist telling me to stop for two weeks my levothyroxine and by day ten I was half unconscious and rushed to hospital with adrenaline pouring out of me across my middle like hot water jolting me to stay awake. It was weird, I was burning up then freezing cold and swelling up in face and body. Believe me you don't want to go there. Take your meds.

[Hidden in reply to weazle74]

As others said, TSH varies a lot. But it is obviously much too high.

Often with thyroxine you feel worse before you feel better. That may be because your thyroid gland stops trying so hard to produce thyroxine because you've been getting it from outside. So your thyroid levels can actually go down until you get to a high enough dose (it can't be rushed)

Another reason could be that you are sensitive to the brand of thyroxine because all the pills have different fillers. Teva is the one that most people seem to find upsets them. What brand are you on?

[weazle74 in reply to Hidden]

euthyrox

[shaws Administrator in reply to weazle74]

tsh11.7

tsh 89

tsh 7.9

tsh was 9.3

All of these show you are hypothyroid and if you had a blood draw ten times a day you'd have a different result for everyone. The TSH is highest early a.m. and drops throughout the day.

There are serious consequences if you do not take thyroid hormones and levothyroxine is what the doctor prescribes.

You have an Autoimmune Thyroid Disease - commonly called Hashimoto's and the antibodies it sends out attack your thyroid gland and sometimes you'll feel as if you have too much and at other times insufficient.

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

Going gluten-free can help reduce the antibodies and the attacks on your thyroid gland.

You need to take thyroid hormone replacements and because it is such a serious illness if untreated that's why we do not pay for any other prescriptions for any other illnesses we may get.

A Full Thyroid Function Test - which doctors rarely do consists of:

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

[weazle74 in reply to shaws]

i did test tpo is 64.4 / normal range is 35 and thyroglubulin is 180.5 / normall range is 40

[Mary-intussuception in reply to weazle74]

You have Hashimoto's Autoimmune Thyroiditis and Hypothyroidism - you need your Levothyroxine (LT4) for life.

With Hashimoto's the regular Thyroid Function blood tests results can fluctuate. TSH varies as the day goes on.

It must be brought much lower , to protect your Pituitary Gland from over working.

Your TSH should come down as you stay on your replacement medication. You are under replaced at the moment.

[dtate2016 in reply to weazle74]

Hashimoto’s is a difficult disease. What we have to make sure we understand is that it’s primarily an auto immune disorder and not a thyroid disorder. With Hashimoto’s our immune system destroys the thyroid hormone that we might be producing.

So then, what is it that’s causing the immune attack? We’ve learned many things. Gluten dairy soy can sometimes cause attacks. Sometimes our immune system might be distracted, fighting a virus or bacteria, or who knows what? Our immune system does all of these things right? So if it is distracted, (immune system) our own thyroid might get through - again depending on how much your own thyroid is still producing.

So, when and if we are taking supplemental hormone AND when our own hormone survives immune system destruction, we get the kind of dizzy symptoms you describe. I had a doctor that describe these as thyroid storms. I had your attitude exactly! I’d rather face and have the symptoms of no medication rather than overmedicated. (The thyroid storms came when I was taking levothyroxine only - T4 only)

That’s when my wonderful Dr - brilliant Dr back in the 90’s (here in US) said “Would you like to try the natural way?” Prescribed Armour Thyroid, (Have since found Nature Throid to be better for me) and all those horrible symptoms became pretty much a thing of the past. Somehow the glandular thyroid based medicines work wonderfully - somehow my body knows what to do with them.

The links from Shaws are really a good thing to explore.

The other thing with Hashimoto’s is - it’s gradually going to get worse. Better to begin some sort of thyroid support sooner. My experience is that it’s better to head it off at the pass then to try to fill in the hole.

[weazle74 in reply to dtate2016]

i dont know about armour i live in cyprus i dont know if i can get it on internet i uused euthyrox and i am afraid to take it again i tried it twice and gave me both times bad site effects

[shaws Administrator in reply to weazle74]

If you are in Cyprus I'm sure the doctor could prescribe some T3 added to a reduced T4. Quite a number of people feel much better. Research has shown that a 3:1 or 4:1 (T4/T3) combination is helpful.

[Mary-intussuception in reply to weazle74]

Your TSH at 89 was extremely high. Being 9.3 after starting 50mcg of Levothyroxine is a great improvement but it is still too high. You also need your Levothyroxine to protect your Pituitary Gland from over working by producing too much TSH.

[weazle74 in reply to Mary-intussuception]

tsh 8.9 this not 89

[Mary-intussuception in reply to weazle74]

" . . . 2nd test was TSH 89 . . . . "

You can edit a post or reply to correct typing mistakes by clicking on "More" then click on 'edit' in the drop down, then click on 'Edit response' when finished.

[MaisieGray]

You may enter into myoexodema crisis as a result of generally longer term, untreated or seriously undertreated hypothyroidism, although timescale will depend upon how lacking you are in thyroid hormone; and may enter into a myxoedema coma especially where it is triggered by other factors such as other drugs inc sedatives, narcotics, anesthesia, lithium etc, infections, stroke, trauma, heart failure..... With un/undertreated hypothyroidism, If you required elective surgery for a non-thyroidal reason, you would likely be refused because you would be at risk under anaesthetic. Whether you would ever get to myxoedema crisis or coma, can partly depend on what residual thyroid function you have; but the more likely and important effect of being undermedicated, rather than "the big bang" of going into crisis or coma, is that your brain, your heart, your bones, to name but a few, can be seriously adversely effected. You can do an internet search of the effect of low T3 on each of those aspects, to get the detail of this.

[weazle74 in reply to MaisieGray]

this is so confusing with this ilness i am sad when i take thyroxin really i feel beter without it i get all symptos of hyper but my test show tsh high 9.3 t4 13.9 symptoms are so bad of what i feel from hypothyroide i am 64 years old so if i cant tolerate thyroxine is best to live without medication i cant even go out when i take thyroxin so dizzy feel very weak get high bp cough sore throat not able to swalow my saliva and a lot of panic attacks i spoke with endocrinologist but he says is not true all in my mind this makes me even worse so stoped going to him .. every body in my family sees how i am they all say that looks like hyper but is not is hashimoto hypothyroide ..and i some times feel so bad i want to die i canot controll all this site effects and i know i am beter without medication

[fibrolinda in reply to weazle74]

You may be reacting to the fillers in the meds, can you not try a different make? You may feel better without now but it won't last and you need to find a thyroid med that you can take.

[weazle74 in reply to fibrolinda]

in cyprus only euthrox so i am trying to check on internet and read and then t buy something i will stay a mnth off have another test and then i will start again hopefully i find another brand that wont make me so ill i also have low b12 and d so i take orall spray both very low

[MaisieGray in reply to weazle74]

Some people find they initially do worse when starting thyroid hormone replacement especially if their body has had to function for a long time with low thyroid hormone levels. Starting low but with timely increases as identified by regular blood testing, can address that - remember that staying on too low a dose for too long can make things worse. But you've mentioned in a previous post, about getting some tirosint - have you've done that? I also see from the PA group, that you have low vitB12 and mention thalassaemia, but can't read the detail of your post as I'm not a member - do you mean low in range B12, or below range, and have you had a full set of tests to check for both conditions and all vitamin and minerals?

[weazle74 in reply to MaisieGray]

yes b12 is very low 101 normall range is 200 /900 and vtamin d is 8,8 and is again very very low it should start from 20 to 200 i am taking now orall sprays of both vitamins i got tirosint but you canot cut in half and this going to be a problem as i need to ajust dosage

[MaisieGray in reply to weazle74]

If your vit B12 and vit D are that low, taking standard oral sprays are unlikely to help, and it's maybe no surprise you are feeling ill. SeasideSusie can hopefully advise you in more detail.

[weazle74 in reply to MaisieGray]

i take high dosage my doctor said is best orall spray i have stomach promblems d3 2000 a day and b12 2400 mg

[MaisieGray in reply to weazle74]

I've not used tirosint myself, but from its website, it seems that the capsules are available in a range of doses: 13, 25, 50, 75, 88, 100, 112, 125, 137, 150, 175, 200 mcg .

[weazle74 in reply to MaisieGray]

not easy to buy as is in greece is not wise to start as i will have to wait for a while befre they will sent and if i need to increase it will be a promblem

[MaisieGray in reply to weazle74]

That is the case for all of us in the UK who have to likewise source our meds from abroad. We are no different from you in that regard, but we have a saying, needs must, when the Devil drives; and if we can't get what we need by more straightforward routes, we have to go with what we can get.

[weazle74 in reply to MaisieGray]

i am thinking of buying 25 50 75 so i can ajust dosage all tree combine to make dosages

[MaisieGray in reply to weazle74]

From the perspective of being able to adjust dosing in the early days, you don't need 75 mcg if you have both 25 and 50, but having 13 mcg will allow you to increase in smaller increments - possibly useful whilst you're not feeling well.

[lucylocks in reply to weazle74]

Hi

your doctor should be giving you B12 injections as your level is well below range.

Also he should prescribe high dose vitamin D.

These low levels maybe the reason why you feel worse on thyroid medication, as if your vitamins are low it can stop thyroid medication working properly.

[weazle74 in reply to lucylocks]

my doctors are useless my pathologist sents me to endocrinologist and he sents me to pathologist as he says he can only treat my thyroide and nothing else so i try my self to find solution of how much to take from internet and farmachies

[lucylocks in reply to weazle74]

Sorry your Doctors are not helping.

If you go the Pernicious Anaemia Society on HealthUnlocked they will be able to advise on your B12 level.

Also you should be taking a higher dose of Vitamin D with your very low level.

I will get a website you can check out and see how much you should be taking.

I will google it and let you know.

[weazle74 in reply to lucylocks]

thanks appreciate any help as i want to get beter.. thank you

[weazle74 in reply to lucylocks]

i feel quite bad and i dont know which is causing all this symptoms so dizzy i even get bad hissing in head all is a mess sometimes i think i am dying

[lucylocks in reply to weazle74]

Check out this website for Vitamin D.

vitamindcouncil.org/about-v...

Also B12 deficiency can cause dizziness and lots of awful symptoms.

Go to

b12d.org/ for list of symptoms and advice.

[shaws Administrator in reply to weazle74]

The sensation of 'hyper' could be due to the antibodies attacking your thyroid gland.

[weazle74 in reply to shaws]

i dont know but i get panicky depressed and high blood presure very dizzy

[weazle74 in reply to weazle74]

i want to stay another month off medication and do testing again and then i will try a defferent brand also get my vitamins higher as they are very low d/ b12 and see if iwill feel beter

[shaws Administrator in reply to weazle74]

I am very sorry you don't feel well and as this is all new to you, then I'm not surprised you get panicky and depressed. If you concentrate on getting gradual increases of levothyroxine (they are increased very slowly) you might then begin to feel a bit better. It takes years, really, of our thyroid gland when its failing to get the TSH (should be 1) to reduce down very low which it will gradually do when you take levothyroxine.

Everything in our body is affected by low thyroid hormones, even heart beat can be lower than would be normal.

[weazle74 in reply to shaws]

thank you i got good advice thank you all

[jimh111 in reply to weazle74]

It’s a good idea to take a magnesium supplement such as magnesium citrate, this will help keep your blood pressure down. Also magnesium rich foods such as tomatoes and green vegetables.

[Angel_of_the_North]

Yes, you can go into a coma and die if you are untreated, but probably not in one year. Instead, you'll probably get heart disease first, and then dementia, and then die. That's what happened to people before thyroid hormones were discovered.

[weazle74]

euthrox is got lactose

[weazle74]

cyprus

[shaws Administrator in reply to weazle74]

euthrox is just another word for levothyroxine. There are a number of names throughout the world and levothroxine just means T4.

[weazle74 in reply to shaws]

suppose are all same just defferent names

[shaws Administrator in reply to weazle74]

Yes there are lots of different names for levothyroxine around the world.

[caledoniancat]

Have you ever had your adrenal s tested? Levo will speed up cortisol usage, if your adrenals are underperforming you will feel increasingly more unwell.