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Thyroid UK
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Hypo but getting hyper symptoms

Hi 😌 I have been a member of this forum for awhile only now I have plucked up the courage to post, I was diagnosed in sept 2017, my TSH level was 20, now almost one year later it is down to 6, my symptoms are ranging from hypo to hyper, I have not gained weight, went down to a size 6 from a size 16, diarrhoea is awful (sorry) appetite is terrible, getting sensations of food being stuck in my throat, my mood swings are evil 🙈 I do not have my full test results, after 4 doctors I have finally been referred to an endocrinologist and a scan as my thyroid is enlarged, my gp was accusing me of not taking my levothyroxine, it has now been reduced to 100 mcg from 150, I’ve lost interest in everything and am so irrational 😭 is anyone else like this? I honestly feel as if my whole personality has changed 😳 I am being tested for thyroiditis in 6 weeks? I’m so scared and fed up 😔 I don’t have my full bloods results sorry 😐 thanks, Nic

44 Replies
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Were your anti-bodies tested ? Sounds as if you have Hashimotos ? Are you able to have Private Testing done through Tyroid UK ? Always request copies of test results - they are legally yours. They should be on-line - check with your surgery. ...

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Hi mars, the gp has given me blood forms for ai thyroiditis, but I’ve got to take the 100mcg reduced dose for 6 weeks first, I asked the receptionist but she told me I have to get them from the gp, I can’t really afford private tests atm

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Do you nean you have to get your results from the GP -sorry a bit confused ! Your Receptionist can give you copies of your results ..

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Yes! Sorry not with it today!! Receptionist told me my gp has to print them out?? I have been told I deffo had antibodies, thanks, Nic

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It sounds horrible, no wonder you're scared and fed up.

I can't advise on hypo or hyper but please know that all this is solvable.

Your dr should gave referred you to an endocrinologist when he/she saw your TSH was sky high.

I think it would be with you writing down all your symptoms and questions you have for the Endo ( easy to forget when we're there in front of them) and when you do see him/her ask for a copy of the GP letter.

Good luck. It's cr** right now but you won't always feel like this, you will get better.

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Thanks holly 👍🏻 It Just feels like it’s never ending ?! The first gp put me on 25mcg to begin with, then another gp said that was way too low a dose, he put me up to 75mcg, there was no mention of a referral but after a year I am finally getting somewhere 😳 I have to write everything down my memory is really bad 🙈

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First of all - your TSH is too high. The aim is a TSH of 1 or lower but many doctors think that if it is lower than 10, that we're on sufficient.

In the UK, I have no idea where they plucked the 10 from in order for us to be diagnosed as they do not diagnose until it reaches that number. Whilst in other countries we're diagnosed if it is above 3+ with symptoms.

You may have a conversion problem, i.e. not able to convert inactive T4 into the Active hormone T3. It is T3 which is needed in all of our T3 receptor cells.

You can get a blood test (private) which will confirm or not whether you have DI02 which means inability to convert levo. I doubt doctors are aware of this and I'll give you a link:-

thyroiduk.org.uk/tuk/testin...

Or you may be on an insufficient dose of levo as the aim is a TSH of 1 or lower- is your GP aware of this fact!

Are all your vitamins/minerals optimal. B12, Vit D, iron, ferritin and folate? Ask GP to test.

Tick of your symptoms and if we're on an optimum dose we should have none.

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

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Hi shaws, my gps have said TSH needs to be below 1, I have been tested for all the deficiencies and they were in range although I have no idea about what the actual levels are, the only thing that came up was red blood cells enlarged, go said this was due to my thyroid, I know I have antibodies also, but gp told me that this meant it was ai but I would have no problems with it until I’m older?? Thanks for replying 😊

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Enlarged red blood cells are not caused by the thyroid. They are usually caused by pernicious anaemia - low folate and B12, which you can have if your results were at the bottom of the range. You really need to get your results or new blood tests for TSH, Free t4, free t3, folate, B12, ferritin and vit D and then post the results (with ranges) for advice. Never believe a doctor who says things are "OK", "fine" or "normal" - you'll often see that the results have been marked as abnormal by lab, but doctor still says "Fine", or they are so low in range that it is obviously not fine.

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Thanks think I deffo need the test results, they told me I didn’t have anaemia etc, my folate was low once as I was prescribed folic acid, but it was only for 1 month I had to take it. ?

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They told you that you did not have iron-deficiency anaemia - they probably didn't test for pernicious anaemia and did they retest your folate after the month? I very much doubt you'd get good levels in a month. Your enlarged red bloods cells indicate a problem there. See a different GP.

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Thank you I will try and get to the bottom of it, they all seem to tell me different things, just feel like I’m back and fore there all the time and no they didn’t test it a month later either 😖

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A TSH of 6 is still very Hypothyroid if correctly treated it should be 1.0 or below

What are you ascribing to Hyper symptoms because often HYPO symptoms are actually mistaken for HYPER

Have you gone totally Gluten Free ? As either gluten or wheat or dairy sensitivity can cause diarrohea and plethora of symptoms

Do you use Aluminium or non stick coated or foil cookware or is your water supply treared with Alum or Aluminium or flouride in any form .....ask the water company

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Hi😊 the symptoms are ranging from being freezing cold some days and can’t warm up, I have had lots of mental health problems, my anxiety is so bad some days, I have terrible mood swings and now I lose my temper so easily, never used to be like that 😖 I have beeen experiencing awful night sweats, and hot flushes 😔 been tested for menopause all clear there!! my PMS is just scary 🙈 sometimes I think I’m losing my mind, sometimes I can’t sleep, I am taking 3 lots of meds for my depression/anxiety I really don’t think they are helping, my memory is horrendous 🙈 I am waking often in early hours with cramps/ diarrhoea(sorry too much info!!)

I haven’t gone gluten free or anything like that, my appetite is awful! As I said just feel like such a hypochondriac, I also get real tired in the afternoons and I just feel like I need to lie down, but it’s kinda hard with 2 kids lol 😂

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All those symptoms are classic hypothyroid

My husband and daughter and grandaughters all had the same and worse

My husbands temper was horrendous

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Thanks, I was so down I even stopped my Levo for a week, yes I can imagine, my other half has a lot to put up with bless him

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The very last thing you need to do is not take your levo ...unless the levo itself is causing the problems ....its possible your not able to convert the t4 in levo into the vital T3 every body cell needs

Or it could be that your body cant cope with synthetic meds and you would be much much better on NDT ,.....which is what all my lot have to take because they cant tolerate either Levo or T3

Without knowing all your blood tests its hard to tell but after a year on levo if your still not well there is a reason and either they find it or you will need to self treat

But the symptoms you list are without doubt Hypothyroid ....if you were hyper you would not be freezing cold etc you would be more like a duracell bunny

Personally i believe that anti depressants , anxiety meds etc actually mess with the thyroid and make matters far worse ....some will disagree with me but my experience is that they cause havoc in the body

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Yes tbh they aren’t doing much, I also take propanolol they do help with the shakes, I don’t know a lot about T3 or T4 but am hoping the Endo might? Thank you for your reply you have been very helpful 🙂

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Depends who the endo is and taking propanolol etc is likely not helping i saw a thread on another forum saying the same

Many of us on here know far more than most endos ...do you not have your test results for

Thyroid Antibodies

TSH

FREE T4

FREE T3

ferritin

Folate

B12

Vit d3

Ask your GP for copies of all your tests ...your legally entitled to them

Above all you need to start to understand thyroid and we can help

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Thank you I will ring docs mon and see if I can get a copy of my latest test results 🙂

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Yes thats a vital first step ...start a file of all your test results is vital and revealing

Far too few GPs understand Hypothyroid and add on NHS refusal to do full tests does not help

You might find it better to go to the surgury and request copies and wait for them or copy them from the screen ....do not e fobbed off ...its your right to have them

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Thanks again x yes I was thinking of going there rather than being fobbed off in the phone 😊 is the ai thyroiditis blood test the same as the thyroid function test ? Any idea?

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Auto immune thyroiditis is Hashimotos and yes Thyroid Antibodies test will show it

Your doctor should have tested

ALL 3 Thyroid Antibodies( TPO, TGAb,TSIAb) because you may possibly have both Hashimotos and Graves

TSH

Freet4

Freet3

Ferritin

Folate

B12 this is vital because Pernicus aneamia can accompany Hashimotos

Vitd3

All of those tests are vital to establish what is wrong with a patient

Take this bit with you so you can see what tests were done and you need results and reference ranges

Thyroiduk.org has excellent articles and info on all of it too

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Thanks for that , I will try and get these results, it’s so confusing, I know I’m having the AI test in 6 weeks so will that be the t3 t4? I’m sorry for the questions lol 😂

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No no no ...the AI test is Auto Immune Antibodies

They should have been done right at the outset a year ago

Along with

Free T4

Free T3

Ferritin

Folate

B12

Vid3

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I’m sorry if my reply has somehow managed to come up twice, one of the previous gps told me I tested positive for thyroid antibodies and said it was autoimmune but basically brushed it aside?

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Majority of hypothyroid is caused by Auto Immune Hashimotos which must not be brushed aside because for some people it is not without a heap of problems ...as my lot know all too well until they were switched to Natural Dessicated Thyroid /NDT

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How are your family after taking the natural desiccated one? Is it expensive tho? I’m kinda struggling with money atm as I have missed work some days.

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Husband is 75 and totally fit and well as are Grandaughters all on NDT ...daughter is well on NDT but has other health issues too

NDT is about £60 for 3 months supply once on full dose

But lets get your results first to fathom best way fwd

What illness is there in other family members back 2 generations

Auto immune like Hashimotos seldom comes out of the blue

Usually parents, grandparents aunts uncles etc will have diabetes or thyroid or endometriosis or rheumatoid arthritis, pernicous aneamia, coeliac, MS , etc

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Where do you buy your NDT from

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Sorry late reply, I haven’t yet got my results, I know the receptionist will probably be arsey 🙈 I can’t really afford to buy them atm I am struggling, I just feel lately like I have no emotions however stupid that sounds 🙈x

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my TSH level was 20, now almost one year later it is down to 6,

my gp was accusing me of not taking my levothyroxine, it has now been reduced to 100 mcg from 150,

These comments and actions from your GP are completely irrational and perverse! First of all he accuses you of not taking your Levo (presumably because your TSH is too high), then he reduces it, and will therefore end up making your TSH higher still.

One thing to bear in mind is that the body will often produce more cortisol and adrenaline (C & A) if it has too little thyroid hormone ( if the adrenal glands are capable of producing more C & A). High levels of C & A can produce symptoms that are often mistaken for hyper symptoms.

Producing lots of adrenaline might be the cause of your weight loss. Excess cortisol tends to make people gain weight. If you were producing lots of both C & A then the effect on your weight would be anyone's guess.

In an ideal world your body would reduce its output of C & A as your dose of thyroid hormone increases. But by the sound of it you've never been treated sufficiently to get your thyroid hormones up to a healthy level.

In a non-ideal world the levels of C & A might get stuck at high levels, and increasing levels of thyroid hormone doesn't reduce them. In those situations people can feel very hyper indeed.

To know whether you are producing low or healthy or excessive levels of cortisol you could ask your doctor to test your early morning cortisol. If that isn't informative then the alternative (which is a better test than the blood test a GP would do), which would have to be paid for by you, is to have a saliva test done at four points throughout the day.

regeneruslabs.com/shop/prod...

thyroiduk.org.uk/tuk/testin...

The price quoted for the test is different on the Thyroid UK page than it is on the Regenerus page. I don't know if Thyroid UK is out of date or whether it is a discount for Thyroid UK.

I don't know any ways of testing levels of adrenaline, sadly.

If you want to try something that is free, then you could follow the suggestions on this page. You would need some graph paper and a good quality thermometer (preferably mercury, but they are practically impossible to get hold of these days).

drrind.com/therapies/metabo...

I've never done the graph option myself - I'm too lazy.

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Very informative post. Thanks human bean

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Thanks, I’m hoping this will be done when I see the Endo?? And lol at the lazy bit because I am exactly the same 😆

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Chuck Full Of Very Valuable Information. Thank you for Sharing .

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How and when do you take your Levo?

It needs to be taken on an empty stomach (or with only water in your stomach), and after taking it you need to avoid food and drink (except for water) completely for an hour. You should avoid taking supplements and any other prescribed meds for two hours after Levo, and in the case of iron, vitamin D, oestrogen, calcium, magnesium wait at least four hours after taking Levo.

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I take it in the morning, I have been taking it same time as my other meds 🙈 I don’t usually eat anything until lunchtime depends what kinda day I’m having 😳 I don’t take supplements they made my stomach feel sore 🙈 Sorry I’m a moaning Minnie 😂

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It would definitely be a very good idea to take your Levo separately from your other meds. You'll get much better absorption of it.

People take Levo at various different times e.g. some people take it during the night if they always go for a pee in the middle of the night. Some people take it at bedtime, as long as they don't eat and drink late.

If you don't eat in the afternoon then you could take Levo then, as long as you didn't eat afterwards for a couple of hours. It all depends on your eating, drinking and sleeping habits.

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Thanks humanbean 👍🏻 I will take it on it’s own in the morning from now on, I wasn’t aware of it not being taken with other meds!🙈

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Just sending you a hug. Your symptoms are old friends of mine - IT WILL GET BETTER. Unfortunately it is not instant, but just take each day at a time and you will climb out of the pit and see the sunshine soon.

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Thank you littlestar 🙂 I really hope so ! I’m glad you are better 😀 sending a cwtch your way lol

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Hi Nicola, you've been given plenty of great advice but I just wanted to say hang in there! It is shit and I can totally relate to the fatigue, irritability, irrationality and mood swings. I also suffered with depression but all of those symptoms will improve when you get on the right dose/medication. I would go and request your blood results again though. The receptionist can sort them out, she will need your gp's permission but you are entitled to them so don't take no for an answer. Deficiencies in things like vit D, B12 and ferritin can cause symptoms that mirror hypo one's making you feel even worse. Deficiencies can cause fatigue, aches and pains, depression, nerve pain etc.. too, so very important x

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Hi nat, thanks for your reply it’s just the hot sweats are unbearable, it is like I am either freezing cold or boiling hot ther is no in between? I am gonna ring docs Monday and Request the test results, I have had all vit def tester and all came back normal x

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You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

If not online speak to receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, rules changed after May 25th 2018 and they must provide copy if requested and you do not need to explain why you want them

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Low vitamins are extremely common as direct result

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working

You can then feel hypo and hyper as you remain hypo but can't use the thyroid hormones you are taking so feel hyper as well

Night sweats are often low B12

Anxiety is symptom of being hypothyroid

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from 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)

Most Hashimoto's patients need to take regular supplements to keep vitamin levels optimal

Always get actual results and ranges on all tests

Many with Hashimoto's also find strictly gluten free diet helps significantly or is absolutely essential

Come back with new post once you have results and ranges on your tests

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