Really need some advice. I have a UAT. Struggled to take Levothryxine (t4) as I get severe migranes and severe veritgo. My ear gets inflamed and i end up with loads of things going on. This has been going on for 5 years and everytime I get a week in of taking tablets, I'm so unwell and can't drive and can hardly see due to the migrane, it effects my vision. 9 months my TSH was 50 and i was told I had hashitmos thryiditus, GP knew I can't tolerate the tablets so referred me to see an endo. I eventually saw my endo and she agreed I shouldn't take levo anymore and prescribed me Liothyronine (t3) 20mg.half in morning and half at night with 3 propronaol beta blockers To stop the palptations that the t3 will give me. I started this and after a day of taking it, I started getting this weird feeling in my chest. Felt like every second someone would just touch my chest. It got worse the more i took. I also had very bad diarreah and took me 4 to 5 hours to get to sleep at night due to heart racing. I ended up in and e and was told to stop taking them both after 3 days. Endo sent me a letter saying to try 5mg in morning and evening so I did and same thing happened. I stopped all together as i felt like I couldn't calm my heart down and terrible trapped wind. In A and E dr told me my TSH was 88 and i could end up in coma at any point if i dont take something. So I took levothryxine again as i panicked. It's been 3 or 4 weeks now ive taken levo every 2/3 days and got my tsh down to 27 which is great but god have I been ill. I have severe veritgo that's with me 24.7.. migranes from hell. Fullness in the ears. ringing in ears.. lightheadness. blurred vision.. seeing spots. (i normally get some of this when i take it for a week) but it's so much worse now cause I've took it for longer. I seriously feel like im gonna have a stroke or something soon. I know its the levo as when i come off the levo everything does dye down..ive not been able to drive and i obviously can't live like this. Endo has got me a urgent appt in 3 weeks to see her but I can't last 3 more weeks taking it. I take a antihistamine every day and that do take the edge of the veritgo for a couple of hours. Ive took so much painkillers and it helps the migrane and the veritgo. It must be something to do with the hormones etc swelling my inner ear.. also dr said i had fluid.. 2 ear infections too.. never had a problem with ear infections.. A and E dr said my eardrum is abnormal and I'm guessing fluid is pushing it forward as he said it was retracting. I can feel my ears swell when i start taking levo. my tongue swells and neck hurts too. I haven't took levo my levo in 2 days cause I honestly can't do it anymore. I'm gonna book drs Monday and get them to message my endo saying t3 didn't work on 5mg either and levo is making me so poorly again but its the woro i do until than? it's took me 4 weeks of this to get my tsh down to 28 and i dont want to stop taking it and it goes back upst feeling in the world. I still have t3 here with proproponal. Why would the t3 give me chest pains? is it something that goes? it says its a side effect... and when i was having it.. I had a heart ultrasound bloods and xray done and everything was fine but endo said to come off it if its causing the chest pain. Could it be the proproponal? don't wanna stop and I'm back at square one. Help!!!!
all vitamins are in range on low side but in range
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Carlylouise90
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Have you tried taking the levo in 2 or 3 doses throughout the day? My body doesn't like a load of hormones all at once so I have always split my levo dose. 20mcg would be a high dose of t3 to start on for me. Because the tablets are small I added a quarter tablet to my morning levo. So 5mcg.once my body had settled on that I added another 5mcg to my afternoon levo. Whatever you decide to do it needs to be a low dose with slow increases.
Vitamins in range but on low side are no use. To give the best results they need to be in the top third of the range for us hypos.
I've tried splitting the tablet is 3/4 and still get the same effect i could try staggering it I suppose. just I need the fluid to calm down in my ear ;( to stop thisfeeling.. ;(
endo axually said i have a intolerance to levo. so maybe I should try t3 again... did u use bera blockers with them?
No I didn't. I am adding t3 to a low dose of levo so am slightly different. I have had 4 years of slowly building up levo and reducing it and increasing it. Never could get above a dose of 50mcg in the morning and a dose of 50mcg at night. So 100mcg per day. My free t3 was still low so I have recently reduced levo and added t3. I am hoping to balance the levo and t3 doses to give me the hormones I need. But as always changes need to be small and slow. You also need to take your doses at regular times as the body likes it around the same times each day.
It is a horrible illness and there are times when I have spent weeks in bed so I can understand what it is like.
You need to start slow and increase Levothyroxine slowly......
Standard starter dose is 50mcgs Levothyroxine. As other have said, you could try 2 x 25mcg split dose.
Getting bloods retested 6-8 weeks after each dose increase
Some people need to start at even slower rate
Can you add your most recent vitamin results and ranges
What vitamin supplements do you currently take?
As you have Hashimoto's you may find it helps to be strictly gluten free
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes 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
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
I'm on a gluten free diet and have been for2 months.
ive tried a quarter tablet every day and I get the same thing. I've tried halving the quarter tablet and the same thing happens.
I get swelling in my ear which leads to serene migranes and veritgo. been to a and e 4 times the last month due to collpasing. the minute i come off them im better. endo said she thinks I'm allergic to the fillers in there ..
my neck and tongue swells up and i have to have a antihitimaine.
there's no way I can take it anymore. I'm at a point where my head is gonna explode and that's taking the big painkillers. and my eyesight is so bad x
Hi Carly - I’m experiencing very similar symptoms to you & trying to find out what’s going on ! The ear pain /tinnitus - balance issues - chronic daily headaches - eye pain & sensitivity to light - collapsing - neck pain which started many months ago ! I have spoken to a lady on here who thinks I may have thyroiditis - apparently only a ultrasound will clearly show this if your antibodies - thyroid levels are coming back normal ! So I’m aware you have been diagnosed with this condition already. A lot of people swear by armour thyroid which is natural but if your uk based it’s finding a gp who will prescribe it - private ones may do. I’ve recently discovered about an ingredient called Mannitol which has been put in Levothyroxine ! In France & Belgium a lot of thyroid patients became v unwell on it - I’ve noticed that’s its been in my batch of levothyroxine - brand name Teva so have asked my pharmacist not to supply me with that anymore ! I’ve asked for Almus brand again - I’m only clutching at straws but when you’re so unwell you think of anything ! Anyhow will you plz look at the brand of T4 you have been supplied with ! Also may I ask - are you at menopausal age like myself because problems can arise there too ! As a knock on effect - I’m hoping to see a menopausal specialist soon x I’ve often thought of giving up I’m so ill but there must be an answer ! So try keep strong ok x
If you are so sensitive ask your endo if you can try Tirosint, they are gel capsules with none of the usual excipients, just Levothyroxine sodium, gelatin, glycerin, water.
You could always contact the endo's secretary, say you are so unwell, ask to either speak to endo or will she explain your position and request urgent reply.
Can I just ask when you were diagnosed were you put on any anti thiyroid drugs? I'm asking this as I have real trouble taking synthoyd meds I was diagnosed with graves this may 2019 unfortunately mine was so toxic it had to be removed I was so ill on the anti thiyroid meds I went in to thiyroid storm because I just vomited them back.. I've been on levo since May I talked to my surgeon about taking levo as I'm really bad with meds.. I can't take HRT the pill aspirin anti inflammatorys, antibiotics and anti thiyroids.. I was assured I'd have no problems but over 6 months in and my TSH is still suppressed my T3 is very low.. I to have had real problems with headaches first time I've ever had them constantly everyday and I was sent to an ENT as my right eardrum as sucked in and I'm partially deaf in it I have a feeling like you get on a plane when you want to pop your ears but can't.. Like you I'm going threw hell and feel no better even after having a total thiyroid removal. Now my gp wants me to come off levo for 8 weeks to see if my TSH rises I was wondering if that's safe!!! I'm awaiting an app with an endo to discuss my suppressed TSH.. To be quite honest I really don't think many GPS consultants have a clue about thiyroid conditions I was diagnosed in sep 2018 with an overactive thiyroid and feel lost as what the GPS consultants don't know about it... I asked my gp about my T3 being very low he just said we don't bother with T3 only TSH... That says it all 😢 I will be interested to see if my TSH goes up if I'm not on levo... Just call us lab mice because I feel like we're being used as them when taking levo.. I hope you can get some answers I will be bugging everyone till I do... Good luck 🍀
My TSH is still suppressed it should have been going up by now as should my T3 but nothings happened.. I was put on 125mg levo as a starter dose but that made me more hyper so after 6wks they put me on 100mg no change so moved me dowm to 75mg no change I'm now on 50mg saw gp on Monday and my TSH is still suppressed... But I feel so unwell on levo I don't think it's working for me.. 😭
I have read somewhere that Tsh can take a very long time - months to adjust downwards. I believe it was a study, sorry i dont recall which one. But i think you would benefit staying on a dose for at least 8 to 12 weeks before testing again.
I have in fact done that as my surgeon noticed I still had hyper symptoms so didn't take blood for 9 weeks still my TSH was suppressed it's not moved up for over 6 months now..it is as I said my gps feeling that if my TSH has not moved on my next bloods he is taking me off Levo...also my T3 is at the bottom end really low that's not moved since my op and my T4 is only 20% above normal..I feel so ill I'm bedridden most days as my energy is zero 😭😭😭
Well, THAT is extremely frustrating...is there any hope in going to a different doctor until you find one that knows that TSH is not the end all? And that symptoms and measures of that actual hormone is of importance? Can you ask to test for Pituitary problems?
I have asked about my pitruitry gland I mentioned this to my surgeon but it's got nowhere so far their still concentrating on TSH it's so frustrating trying to get GPS.. Ect to listen to your concerns they completely disregard anything I'm saying... 😭😭
When I had a suppressed TSH even though my hormone levels were low, my endo told me to give up meds for two wks minimum, possibly 3 wks if I cd stand it. After 3 wks I felt awful - TSH was 56! This test is to rule out a pituitary problem. 8 wks is far too long to go without thyroid medication if you need it.
I think that's what my gp might be doing it for as he did mention my pitruitry gland... But Ive no thiyroid so can't produce any hormones of my own... I'm going to try to consult on this to see if it is OK to do it..
A dear friend of mine had the same problems as you. It made her really poorly so she did her own research and now uses natural pig thyroid that has changed her life! Definitely worth looking in to x
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I’m sorry to hear that you are so poorly, it must be horrible for you. It might be worth asking your doctor about prochlerperazine, which has really helped me in the past when I had bad vertigo.
I have a very similar problem with Levothyroxine. I struggled for 11 years on it. Until last year something went very wrong and I just could not take my usual dose of 75mcg. Every time I took it, it would be like my whole body was racing then I would go extremely weak and couldn’t walk or get myself off the floor. It was very frightening. Hospital just kept saying I must take the Levothyroxine. I was scared of it by now. If I didn’t take it I felt fine but my TSH went up to 29 in 10 days. My cortisol was also on the floor. I think this was adding to my debilitating symptoms. As your cortisol drops at noon each day. I decided to try and take half my dose at 1pm. Then the other half at 4pm. This seemed to help but I still was having difficulty but not as severe. After months of being very ill and housebound now, I ditched the NHS who was useless. Went to see a private Endocrinologist in Oxford and within a short period I was prescribed T3. 5mcg twice a day. Then I did the DIO2 gene test which came back positive. So I don’t convert very well.
Could you try splitting your T4 dose after noon and see if that helps. Get your 9am cortisol bloods checked too. Cortisol is very important. 20mcg x3 daily is quite a large dose to begin with. For myself I only needed 5 twice a day. Now just increased to three times a day as I’ve started going the gym. Which in its self is unbelievable with the state I’ve been in.
Try splitting your Levo dose and adding a smaller dose of say 5mcg.
If you can afford to do so try a private Endocrinologist. I can always give you my Professors details in Oxford He really is a brilliant endocrinologist.
the dr prescribed me t3. 20mg. 10 in morning and 10 at night but I know that equals to 100 . Way to much. told me to do 5mg in morning and 5mg at night got the same thing. was thinking of splitting the 5 in half and see how i get on for a few days but ive been told to take beta blockers with it due to heart palptations 3x a day. dr wont test for cortisol . they told me they think i have a mutation but not doing the test as the outcome is t3 and that's what she gave me anyway. I wanna go back on t3 but don't want the chest pains. got it the night I started taking it. took me 2 or 4 hours to sleep due to heart racing. I have tried taking levo smaller doses. and still happens. must be something im allergic to
I take my T3 5mcg when I get up. Then next dose of T3 7 hours later. It only has a short half life unlike Levothyroxine which has a long life. When I first started T3 I’d get rushes. But the feeling was good to be honest. It gives me energy. Maybe taking it going to bed would keep you awake and fired up at first until you are use to it. Maybe take your 2nd dose of T3 7 hrs after the first. Say 3pm. Then going to bed the T3 will be wearing off. It’s a shame they won’t check your cortisol. Can you do the private saliva test? To see what’s going on if anything in this area at all. T3 helped increase my cortisol. I wear a fit bit to check my heart rate amongst other things. This reassures me. My heart rate is good. My resting in 59bpm just now. Could you get a fit bit to reassure you. It’s all recorded then if you need to show a Dr. I know they’ll prob dismiss a Fitbit but you will then know what happened. When I take my Levothyroxine my heart rate increases. But T3 it doesn’t.
I take liquid Levothyroxine medication now too. It has less excipients in than tablet form. Also as it’s liquid you can take split amounts very accurately. My private Endocrinologist suggested this to me. I get both T3 and liquid Levothyroxine now on the NHS after the recommendations from my private Endocrinologist this year.
I know this doesn’t help your immediate situation. And things seem to take forever. But it’s something to consider if you wish. Your situation with Levothyroxine sounds very similar to my issues with it. I find the brand Wockhardt the best for me after trying several. Teva was definitely the worst.
Drs once advised beta blockers for me as my heart rate got very low 42bpm. I didn’t take the beta blockers as I was convinced it was hypo symptoms causing my heart rate to be so low. I was right. Do you know what your resting heart rate is without the beta blockers and with.
Also it took a while for the rushing to settle down when taking T3 and T4. I now feel looking back that my body was rushing to gather the medication to make my body work better. Like it was almost over excited to get the job done and put the medication into my cells. That may sound odd but it’s the only way I can describe it.
about 69 I think. I have a fit bit!!! so I could put that on and keep an eye on it! she only giving me beta blockers to stop the palptations from the t3 not anything else.
my aim is november when i see specilist is to ask for liquid levo but I might try t3 again until than in a smaller dose maybe but I got severe diareah n trapped wind whixh caused alot od pain. all in 3 days of taking them both. ;(
Hi there - is there anyway plz you could let me know the private endocrinologist you used in Oxford plz ? My gp has no interest in T3 & im finding it very difficult to find a private gp who may prescribe it. Thanks v much - I’m having v similar problems to Carly x
Just a couple of suggestions as I get migraines too (for seemingly odd reasons at different times).
I don’t take Thyroxine in the mornings. If I have a even a hint of a bad head then the thyroxine puts me into a full blown migraine. I take my Thyroxine an hour before lunch.
I’m now also on 2 x 5mcg of T3. I don’t get the migraine issue with the T3.
I take one 5mcg with the levo an hour before lunch and the other dose just before bed. (Private endo Oxford)
I take Imigran for migraines. The generic made me violently sick for 7hrs.
This might be just me, but I need my vitD level to be at least 80 (r 50-199).
The migraines get less frequent and less severe over that level.
I also need my B12, ferritin and folate to be really good levels too.
The people on here give out so much brilliant advice, without them, I’d still be struggling.
I can now function (not 100%) but a HUGE improvement.
I see you are gluten free. Have you thought of cutting out dairy and soy too?
I hope you get things sorted soon, don’t give up, there will be an answer for you. Maybe keep us posted on your (improvement hopefully) health levels if you have the time/energy? 🤗
thank u so much. my vitamin d was 58 in May. getting checked again hopefilly tomorrow.
I never get headaches only with levo. 3rd day of not having it and they started to ease the migrane is.
tried t3.. and i got different symptoms.. diareeah.. trapped wind which was agony and fast heart. I was also on beta blocker 3x a day with it. came off both adter 3 days ;( was taking 5 in morning and 5 in evening.
Do you have the reference ranges for your results?
For the knowledgeable people to comment, they will need those.
It’s so frustrating, we’re all different, have different symptoms that overlap and unfortunately many doctors do not understand the complexity of hashimoto’s/under active thyroid.
Also doesn’t help if we look fairly ok but feel dreadful. Am sure many people think it’s in our heads.............
If you can add the reference ranges for your vitamin results, also unit of measurement for Vit D and B12, comment can be made. However, going by ranges we often see here it's obvious that all of them could do with being improved.
Only your B12 is adequate. Join the facebook group, 'Vit D and Cofactors UK'. Start very slowly with everything. The root cause of your deficiencies is likely to be low stomach acid from being hypo impairing absorption.
If you have T3 at home try the tiniest amount you can cut it down to and see if you can tolerate that. The racing heart symptoms suggest over medication although you should get used to it if you start really gradually.
The only thing I can take is natural desiccated thyroid (like Armour) which I buy from Thailand. No help for me from the NHS, but your endocrinologist sounds more sympathetic.
90% of migraine sufferers get some benefit from following a ketogenic diet. It also helps generally for hypo patients.
Personally I would take nothing until my thyroid was sorted. Adding more drugs to counteract the effects from the first seems all wrong!
But I'm a long way (nearly 20 years) down the road and have been forced to educate myself because I have almost no faith in doctors any more. To have the courage to ignore the doctors you really need to be confident in your views and the people you believe. There are certainly some nutters masquerading as experts on the net. Not here though!
In your position I would be concentrating on finding a dose low enough not to provoke reactions and working up. If you take the masking medications, you wont be able to evaluate the effects.
I would also be evaluating FT3 and not TSH. But I can afford private testing so easy for me to say! Keep a careful diary of symptoms so you can look at what works and what doesnt. And only change one thing at a time.
Hi Ruthi - I know you mentioned about purchasing your armour thyroid from Thailand - what sort of symptoms were you previously getting before taking that & woujd you beable to let me know the site you use plz ? I’m v unwell & just trying to find any sort of resolution - many thanks
My symptoms were typical of hypothyroidism. Fatigue, aches and pains, coldness. I didnt improve on levo, and had a severe reaction to T3. So NDT was my last hope.
It was very unusual, I've only encountered a couple of other people on the net who reacted like this. Basically it was like arthritis. Any movement was painful and my range was really limited. We tried twice because the doc didnt believe me. And it was years before I could lift my arms above shoulder height. I still cant cross my arms and pull a jumper up and over my head.
I had also vertigo after taking levothyroxine. In the beginning i didn't connect it to levo. But after losing my appetite and feeling worse, i realized it was the levo. I am supposed to take 25mcg per day. So what i did (with my dr's approval), i cut 2 tablet in 4 parts, and took the med 4x a day. In principle, i am taking in 25 mcg a day, but in reality the dose circulating in my blood is only ca 6 mcg. Maybe you can propose this to your dr?
Yes it definitely helped with the vertigo. However, unlike you, i didnt have any swelling. So i am not sure if what we had was the same. Mibe is more likely a sign of overdose, although i am taking a very small amount. After 2 or 3 days of lowering my dosage,the vertigo was gone.
I have tried 4 brands of levo and same thing happens. and no she hasn't said about. shss calling me roday. she has give me t3 to try.. with beta blockers to stop palptations
So sorry you hAve these problems; I have some of them with the awful migraines and vertigo being investigated. I can't advise as I'm going through similar but just wanted to say stay strong we live through it but it's so uncomfortable , wishing you a speedy-outcome
Hi I didn't read all of your nots sorry because I'm just limtime in time as,
but I can tell you like this you seem to be extremely sensitive to chemicals looks like your liver is not processing it and as you understand your thyroid TSH needs to be down in order for your body to function well and you are suffering badly
I will say it like this there is many companies off tablets containing T4 don't get any generics and what I have advised how many people is is is you can buy a small all geopathic magnet where you can put your tablets on and it can help loads to reduce side effects I've given this idea for many people and they're all blessing me I would love to give you references where you can buy it but each and every time I give a reference I'm being accused spam and looking to sell stuff try it and you will see how things are going to change i would also advise you to reduce chocolate alcohol coffee grapefruit for your liver to function better
I read in one of paul robunson's books that if you have adrenal issues that you probably wont be able to tolerare thyroid hormone replacement. Look into how to test your adrenals. Maybe google studies a on adrenals and thyroid....that may be the issue!
"I eventually saw my endo and she agreed I shouldn't take levo anymore and prescribed me Liothyronine (t3) 20mg.half in morning and half at night with 3 propronaol beta blockers To stop the palptations that the t3 will give me.
I take T3 only. I take one dose when I get up and that can last longer than 24 hours.
The person who is prescribing for you and prescribing betablockers due to the excuse she's given. I think she's wrong.
When I took levo alone, I had severe palps and cardiologist couldn't figure out why I was having them (was on T4 only at the time). He was thinking of putting an implant in my heart to 'see what was going on'. I had T3 added and this addition improved my health instantaniously and haven't had palps from then on. I now take T3 alone.
For your Endo to state:
" To stop the palptations that the t3 will give me."
is very wrong. T3 or T4 can give palpitations - sometimes if we're on too low a dose as well as being on too high a dose.
I'd wait to see if palpitations do occur and then take a beta blocker and I reinterate that I'm not medically qualified and I'm going by my own experience.
I've tried night. no matter what i do i get the same illness. Its horriblee. well I didn't have any palpatoons as soon as i went on t3 i went onto beta blockersso maybe they did but my heart wouldn't stop racing took me hours to fall asleep. diareeah all weekend and pains in chest and trapped wind rhat didn't go away for 3 weeks x
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i could try staggering it I suppose. just I need the fluid to calm down in my ear ;( to stop thisfeeling.. ;( 
Results help since taking combo of t4/t3….
Enquiring for a friend. Need help
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Keep gaining weight and can't shift it help.
