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Thyroid UK
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I need your advice please help what should I do!!!!

Hi everyone I need your help,

I was on Levothyroxine before 50mcg (it wasn’t final dose ) I stopped it because I had severe allergic reaction on it -muscle pains joint pains and grinding spine sound ,cracking n popping joints ,red patches on skin ,breathing difficulty and stomach pains.So I stopped it endo told me iam allergic to Levothyroxine .i was off from t4 for a week and than started t3 two and a half weeks ago.I started on 5mcg for three days and than upped my dose 5mcg morning and 5mcg evening for a week than I upped my dose 7.5 mcg morning 5mcg at 3pm and 2.5 evening for two three days ( Meanwhile my hypothyroidism symptoms are going nuts hissing in ears is just crazy eye pain getting worse hairs are falling in chunks etc) it seams iam getting worse than ever what should I do? Should I add t4 a bit ? I have Tirosint hypoallergenic one? What should I do? I have also lose stools and lost 5kgs but hypo symptoms are so much getting worse!?;( pleaseeee help what should I do

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I think you increased too fast. Increases should 5 mcg every two weeks.

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Absolutely agree with Greygoose. T3 is pretty potent. Low and slow is the way to go. You have increased far too quickly. If your endo told you to do your dosing like that then he hasn't got a clue about how to dose with T3.

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How can I re start everything back again? My hypothyroidism is getting worse that is my worry :( I have really sharp stomach pain too :( getting lose stools also every morning .

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Go back to 5mcg daily then do as Greygoose has suggested.

Reread the replies in this previous post of yours healthunlocked.com/thyroidu...

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T3 dose needs starting at extremely small dose and increasing only incredibly slowly, testing 6 weeks after each small increase

Absolutely essential to test vitamin D, folate, ferritin and B12

Post results and ranges

Many of your symptoms suggest low vitamins.

What supplements are you taking and are you sticking to strictly gluten free diet

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Vitamin d 86 , ferritin was 49 last time 11 January but iam eating liver and having ferritin supplement daily folate was >20 b12 was 634

Iam having fresh blood results tomorrow too since January.

Iam gluten free yes and soya free and lactose free .

If I go back for example tomorrow on 5mcg morning and 5mcg at 3pm. Would it be alright ? The thing is my hypo symptoms getting worse :( hissing in ears is killing me and eye pain too :( I also noticed three days back my stools were like yellowish colour and now I go every morning lots of poo comes soft and lose stools.i feel weird in stomach like hungry all the time stomach cramps and pain started few days back too :( in the morning when I wake up always my trousers are wet.i have gone from 59kg to 56kg in just three weeks since I started t3.

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Those sound more like hyperthyroid symptoms - the T3 increases must have been too powerful for you - follow advice given here going slowly - it takes time to get the hormone balances 😉

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I am on selenium Krill oil magnesium oil spray vitamin c 500mcgx4 ferritin vitamin b complex vitamin d

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When did you start taking 4x 500mg Vit C? Some people are very sensitive to it - Vit C is pretty good for getting your bowels moving. You may not need that much!

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I haven’t taken vit c for a while now

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OK, just ruling that out. :) So it’s almost certainly the T3 that’s doing it. As others have said, it sounds like you’ve increased too fast.

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Are u on t3 too? How was ur expierence? I will go back on 5mcg and 5mcg twice a day and see how it goes .yes I think it is t3

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I’m not but my other half used to be, and it’s very potent stuff. 5 and 5 sounds like a good plan, give it a go. But also keep in mind that there may be something else going on, so perhaps make an appointment to see a doctor if the bowel issues don’t clear up. T3 doesn’t stay in your system long so if that’s the cause things should sort themselves out quite quickly.

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You could be allergic to lactose. Have you looked on the ingredients list to see if the pills contain lactose? Your symptoms like sharp stomach pains and loose stools sound like a lactose allergy to me.

I have problems with synthetic levothyroxine and now take desiccated bovine glandular with thyroxine which I buy from the States.

Hope that helps and that you get better soon. It is awful, you get no help from the medical profession and you have to find everything out for yourself.

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Loose stools are usually hyper symptoms along with hair loss and weight loss. I also have a sensitivity to thyroid replacement therapy. i used Almus T4 Levothyroxine at 100mcg daily and found i had the least side effects with this make and wockhardt for my 25mcg dose. The only difference that i can seem to explain why these are more tolerable than some of the other generic products is that acacia is not an ingredient. If you are having those symptoms go straight back to your GP and discus your options and perhaps try Almus T4 with a little T3 5mcg.

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I was on Almus tried four brands Levothyroxine (Almus teva worcraft MercuryPharma) had severe allergic reaction breathing difficulty red skin patches like rash stomach pain and muscle joint pain so severe .Endo told me iam allergic to Levothyroxine and he told me to start t3. I have Tirosint at home which is hupoallergic maybe I should try that with 5mcg of t3 but how and when should I take them? Both together in the morning or in the morning 5mcg and t4 25mcg as a start in the evening ?

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Only a qualified GP or Endocrinologist should advise dose and they usually dose depending on your blood tests and visual appearance. As no-one on here can see you they could only go off blood test results. Best to phone your local Gp or Endocrinology dept. and ask for an urgent referral and state that your willing to see a specialised nurse from the department if available, alternatively ask for the nurses direct line once you get through and make an appointment for a hormone check.

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On the packaging it states that if you have particular symptoms stop taking and see you GP asap or go to your nearest A and E department for assessment for thyroid crisis.

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From what part of uk are u!? When I had those symptoms I went to hospital and they gave me cocodamol and I explained that these are side effects from medication they referred me on outpatient department later on at 8pm and gp said he can’t do anything and gave me cocodamol prescription no I’m estigation or anything

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That's crazy stuff. Ive had a similar response from GPs but told to take more lol. Are you Jewish my friend. Did you go to a university hospital. I'm in Coventry ghost town.

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Iam from Latvia originally and iam planing to go to my country for thyroid sonography vit checks with endo there plus body MRI scan .maybe she will suggest me something how to tackle this issue.i been to two endos and the last one didn’t even do any checks at all just told me to go on t3 said iam allergic to Levothyroxine.I have also tirosint at home so thinking to try tirosint hypoallergenic 25mcg and t3 5mcg in the morning .i don’t know what else to do

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Oh i was under the impression that you were having these issues because you had already tried tirosint. What were you taking whilst you were having all those problems.

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Levothyroxine MercuryPharma teva Almus and worchardt I haven’t tried Tirosint yet .i was on 50mcg I know it wasn’t my final dose as still tsh was 7.4 t4 12.9 and t3 4.6 but I couldn’t continue as I felt so bad on it

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What symptoms did you start with before you were diagnosed and medicated.

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I felt extreamly tired my hairs were falling was cold my hands and feet specially I had eye pain blurry vision headaches dry skin pimples and acne on face and back constipation these are the main once hissing in ears developed by time i never had joint pain or muscle pain or anything like that.

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How long have you been on just T4

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I was on t4 last September 50mcg for one month I had severe muscle pains all over my body I couldn’t even bent down I needed up in hospital because my heart rate was 123 b per min and blood showed I went over .so I stopped as I was so scared .after couple of weeks I started again on 50mcg as my tsh dropped on 44 .hypo symptoms was unbareable .i started on 50mcg and was on it for a month but after one week of starting it I had muscle pains so bad

and dis time grinding pain in my spine all joint was in pain popping sounds than I had sharp stomach pain and developed rash and breathing difficulties I couldn’t continue with it at all I felt worse I’ll sick much much worse before I started .private endo told me iam allergic to Levothyroxine but I never tried Tirosint maybe iam too sensitive to fillers and binders?!

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Since iam off from Levothyroxine my breathing is ok no rash or severe muscle pains .i still have muscle pains but not as much and grinding pain in spine has lessened and no breathing difficulties

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I had the same problems, its a nightmare.

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Jesus that's awful i really do know how you feel. Who gave you the Tirosint and didn't they explain how to take it.

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So dis you have the same problems with Levothyroxine? I bought Tirosint from Us for £128 I have one pack of 50mcg and other 25mcg .i have to self medicate as no help is there.gp has no clue they only know Levothyroxine.should I start t4 on 25mcg and t3 on 5mcg ? When should I start t4 ? I took t3 at 7am and thinking to take t4 at bed time 25mcg .

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I would be very wary to take any medication other than what a GP has prescribed and monitored. And yes I have same problems. I was taking Almus 100mcg levothyroxine and 25mcg wockhardt levothyroxine, these generic names had least side effects for me. I take no T3 as yet.

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On what u r now? Are u feeling alright now and how long it took for u to be ok? How long did u stay on one dose till u felt alright?

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Ive never felt great from first dose as had blurred vision and concentration issues right from the start after taking levothyroxine. After some swapping generics I discovered that Almus and wockhardt for me had least side effects. Only got joint and muscle weakness over 75mcg levothyroxine but was told to continued as had good energy, hair stopped falling out and was able to go to the toilet as I was severely constipated prior to taking levo Then about two three months ago started to feel tired again, hair falling out again, especially after exercise I would loss whole hand falls, really feeling cold even indoors with heating on, hat on and several layers, withdrawn and overall not too great. This may have something to do with a diet that I was on due to maintaining a balanced diet Id lost weight. I reduced my sugar intake which improved my visual disturbances but left me feeling really tired. I wasn't under eating but it seemed my body needed huge amounts of carbs along with levo to function, only problem my body couldn't cope with all those sugars and maybe was the root cause of my visual issues brought on by extra energy that needed feeding to maintain. Ive just switched to branded T4 Eltroxin for trail period but not going all good but also not all bad. Although many say that levothyroxine and Eltroxin are exactly the same, and I have read evidence written by mercury pharm that produce them both saying these products are identical I can truthfully say Eltroxin and Almus levothyroxine which is also a generic are no way identical. I can only just about tolerate 50mcg of Eltroxin and still feel a bit shaky and within 30 minutes after taking got stabbing pains in my back. My eyes are not blurred but I'm still reducing my sugar intake, they are still feeling inflamed and sore though.

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PS I stayed with dose until I felt overmedicated, TSH 0.06 and unwell. If I feel well I stay with what ive got.

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PPS since on levothyroxine I have also had skin changes both in the natural colour of my skin and the elasticity and bounce. Ive also noticed changes in the whites of my eyes and shape of eyes.

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Don’t chop and change it is not good for you and means it is impossible to know what is causing your problems. Try T3 first as you did start to feel ok on it but a lower dose. Give it a good try before reverting to T4 which did not seem to suit you. Tirosint liquid has the least allergenic additives so if you do go back to T4 I think you’d be best to stick with that. Your GP can prescribe Tirosint it is worth asking if you do try it and feel better on it than the other ones.

Hope your Latvian doctors are more expert than our lot on thyroid issues and you get some answers from your tests and consultations there.

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If you intend to try 5mcg twice a day, stay on that for 6 weeks. Then get blood tests and assess where you are.

This may be too low a dose for you, in which case you will feel a bit rubbish. But it's important to give the medicine the time to work.

After 6 weeks you can have a dose increase, and then continue again on that for 6 weeks.

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Does it take so long for t3 to kick in ? I thought it’s fast acting and can increase dose after 10-14 days ? Or iam wrong? I am already going down with my hypothyroidism symptoms my vision has gone significantly down I have so painful eyes depression hair lose in chunks hissing in my head has gone another level since I stopped t4 (a months ago) and added t3 after one week of not using t4.maybe my body needs t4 .i have reduced dose to 5mcg in the morning and thinking to add t4 25mcg tirosint in the evening before I go to sleep would that help?

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The most important thing is to pick one thing you want to try out, be it T3 only, on a dose of 5mcg per day or 2x5mcg, OR try T4 plus some T3.

Then you must stay on that dose for at least 6 weeks. Yes, it is wrong to think you can increase after a few days. Your blood tests will only be accurate after 6 weeks on the same dose, and you must get a blood test before your next increase. The T3 is fast acting, but it takes your body a long time to get settled on a new dose. You will experience changes in how you feel for several months after a dose change.

It sounds like you've been off your medication for a long time, and at the moment you are chopping and changing between doses, which will make you feel even worse. The important thing is to get settled now, and test out one dose for the full 6 weeks. The sooner you do that, the sooner you will be ready for another dose increase, and will be on the track to getting better.

While you're waiting to raise your dose make sure to rest as much as you can. Don't be embarrassed to spend a lot of the day in bed if it's what you need. I find rest makes a huge difference in what I'm able to do during the time when I'm up and about.

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