Around six days ago I started THiroyd NDT from Thailand and I read so many good reviews about it thought to give a go.I was on Levothyroxine 50mcg before but couldn’t just handle it -depression ,severe joint and muscle pain everywhere with grinding and cracking sounds (tried all makes) and a rush and breathing difficulties so needed to stop it.I decided to start Thiroyd and started with 1/4 grain morning and 1/4 grain afternoon after couple of days I noticed once I take my dose after some time my all body muscles -arms back and legs are so much burning like in a fire from pain is this normal?i went to Hospital yesterday as pain was unbearable I was crying .its been six months I have been diagnosed with Hashimoto and hypothyroidism and doctors and endos can’t get me medication or dose right.This has been second medication I start and Iam having these kind of side effects.Could it be from When I was on Levothyroxine it has damaged my joints or inflamed muscles that I won’t be able to start now any medication at all!iam so so so worid as I need to get my levels alright asap as its been many months iam trying to get my levels alright but when ever I increase dose I have these muscle pains currently I have constipation hair loss dry skin arms face and sandy scalp painful eyes blurry vision loud hissing in head all the time etc I just ask you for any help who had expierence with similar things or could give me any advice iam so fed up so fed up that I don’t want to live anymore ....I cry every single day I have lost job and I don’t have anyone.Iam seeing private endo on Friday he told me to stop Levothyroxine and wait for his appointment.It seams ages to wait.i want to live normal life I don’t want to exist I want to live but how!!!!
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Ari3
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Unfortunately, for many newly diagnosed as hypothyroidism can have muscle/joint pain. Sometimes when we start on a dose we can feel worse until it is slowly increased.
50mcg of levothyroxine is a starting dose and is gradually increased by 25mcg every six weeks until we feel better with relief of symptoms.
It has probably taken a long time before we are diagnosed as having a problem with our thyroid gland. It is very subtle and we are unaware we are developing an Autoimmune Disease either hypothyroidism of hashimoto's - hashi's is diagnosed by antibodies in our blood and that's what you have.
50mcg of T4 is a starting dose and is usually increased every six weeks after a blood test by 25mcg each time until the TSH reaches 1 or lower. The FT4 and FT3 should be towards the upper part of the range and going gluten-free can help reduce the thyroid antibodies which are attacking your thyroid gland and they wax and wane (sometimes too little and at other times too much).
Thyroid hormones do not damage our bones/muscles. It is lack of thyroid hormones which cause the pain as our body isn't getting sufficient T3 converted from T4 (levo).
I know how painful it can be as it also happened to me as well. I was as stiff as a board and nothing could bend as it should.
I have passed this stage as increases in dose began and I also changed from levothyroxine - just like you have but it cannot be rushed. Every six weeks a blood test should be taken or if you have to pay for your own blood tests you can increase dose by 1/4 tablet every six weeks, taking note of your symptoms and temp. If. either goes too high you drop to previous dose.
It took me about three or four years to, finally, find a solution for me and I am now well.
It is worse for you if you are on your own and have no-one to be worried about you and you are trying your best to cope on your own. Also other people who haven't had a problem with their thyroid gland don't understand what we are going through - even the professionals.
I am not medically qualified but I would start NDT at 1/2 grain once daily and after two weeks increase by 1/4 tablet and so on until you feel much better. I dose once daily as it then avoids the problem of food interfering with the uptake of thyroid hormones as stomach has to be empty. Any thyroid hormones have to be taken (usually first thing) with one full glass of water and wait an hour before eating. The following is a list of clinical symptoms and I am sure you wll find quite a few will be ones you have. The aim is to relieve them all.
You will be feeling desperate, feeling so unwell and also losing your job but there is a way forward and nearly everyone on this forum have been let down by the Professionals who are supposed to be knowledgeable but we find out that this isn't the case.
We have 70,000+ members so there's a vast number who need more support than what is offered by the doctors or endocrinologists.
I would ask GP for a new blood test which results will be different if you're taking NDT but post your results and members will respond.
You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. You also need to try to go gluten-free to reduce the antibodies. The lab may not do all of these even if requested.
Post your results with the ranges and members will respond.
Thanks for your answer. I needed to stop Levothyroxine because it caused my muscle pains and joint pains cracking sounds (in spine neck popping sounds everywhere) and later on I developed skin rush and breathing difficulties with severe stomach pain /crushing pain .once I stopped it -7 days ago my breathing has gone to normal I ain’t got any rush and my pains in muscles became less .I don’t think it’s cooinsidence .By reading leaveleft of this medication I can read allergic reactions -joint pain and muscle pain or rush etc.So I had to stop the more I took it the more I got sicker everyday and don’t feel well at all I could say I was much better before I started that medication my tsh was 44.I have gone off Levo and told my private endo too I can’t simply contiune this and he said I should stop it till I see him on Friday.I still have cracking and popping sounds and I don’t know if this has done perm damage to my bones and joints as I never had this before starting levo.When I told this to my Gp he said that he never heard of that someone is having such side effects so he referred me to reumotology (bare in mind it’s in May lol ) but honestly I don’t have any problems with bones or anything it’s allergic reaction and side effect of Levo nothing else.I know my body! Of course my Gp is useless as they ain’t got detailed knowledge of Hashimoto or thyroid issues .They only go for bloods that’s all.Anyhow as I can’t stop medication and iam so scared to go back where I was two months ago (my levels were 44) me and my husband decided to try Thiroyd .We ordered it and I started to try it the next day I stoped Levothyroxine.I don’t feel such brain fog as I used to have my body is warm of t3 but on a Levothyroxine I used to be always cold .I started on 1/4 grain in the morning and 1/4 afternoon (I used to be on 50mcg Levothyroxine than dropped on 25mcg one day and 50mcg other day as I started to have those side effects) after couple of days I noticed specially yesterday I took my second late afternoon dose 1/4 grain and after like 30 min my whole muscles had like a storm of burning muscle pain all over my body specially arms and back they were so much burning and inflamed that I was crying .we went to hospital as I was scared and they gave me cocadamol after an hour my pain gone (not all but mainly) .I don’t know what is causing it .Should I start again on 1/4 grain a day only ?could I be sensitive to something again? Sorry for this long post
I haven't read all of your post this time, but I don't understand why you didn't give the Levothyroxine a chance.
All advice given was that you need to give if time and were due (or overdue ?) and increase in dose. Yet, after stopping the additionall Iodine supplement, you don't seem to have given the Levothyroxine any time at all to work for you.x
It seems to me that you are thinking the Levothyroxine has caused your problems - but you haven't taken it properly for any length of time. Because all the time you were on it you were taking extra iodine and the additional iodine you were taking was even more than the daily requirement. X
I have taken Levothyroxine for 6 months and this time been second time and my allergic reaction just gone bad I had to stop it I had breathing difficulties Mary and rush with red spots and my joint pain was just unbearable every single day including severe stomach pains .My endo also told me if I don’t feel well on it I should go from 50 to 37,5 I tried that one but didn’t work and my symptoms gone worse till I cried.it was like I was torturing myself in a prison and felt that something for sure isn’t right iam allergic to this thing.You know sometimes we have to listen to your bodies and for someone who can have this medication that is fine but some people are probably allergic to some ingredients bare in mind all are different .My results of magnesium iodine selenium and others will come shortly on Wednesday on my doctors appoitment.the results are there.Iam currently not taking anything this is first day as iam scared my muscles are just pulsating from pain and I feel so tired of this all I also have severe contipation and blood is coming out it is so much constipated
It is more likely that you have a sensitivity to the excipients in the pills than that you are allergic to levo (which is the same as the T4 produced by your body). You might do better on liquid T4, T3 only or NDT, or try taking an antihistamine an hour or so before the levo. Many of the symptoms you describe are from being hypo and you have to take something or you'll end up very, very ill.
Ayesha this is different information from your previous posts and replies.
You only stopped taking the Perfectil Max 17 days ago. So Levothyroxine hasn't had a chance yet.
According to your other posts you started Levothyroxine about 2& half months ago and then stopped. Then started on 25mcg again & stopped. Then started on 50mcg, but omitting occassionally. One post says you started Levothyroxine in January.
But all this time you were overdosing on Minerals inluding iodine.
Clutter, SeasideSusie, Marz, Angel_of_tbe_North, and I have advised you on all of this - ongoing since late December.
I even phoned the manufacturer of Perfectil 's Pharmaceutical department.
Do you think it might be worth considering just taking your Levothyroxine and prescribed supplements for 6 weeks, and see how you feel then?
MAry I have stopped iodine perfectil in overall I have given chance of Levothyroxine since January and stayed on 50mcg more than a months now as endo instructed .The bloods actually has gone a bit down which shows I need to increase of course but I could not as I had these terrible side effects which were killing me .
You need to discuss bleeding from your rectum with your GP. If it is caused by constipation GP can prescribe a stool softener and laxative to ease your bowel motions.
Do you think Tirosint could help me if iam allergic to fillers? How can I buy it where could I discuss this option with endocrinologist? Can I order it myself and which website should I go
1 hour before your next dose, if you take 1 anti-histamine tablet and if you don't have an unpleasant reaction, you need to ask chemist to give you another make of levo. Sometimes it is the fillers/binders in levo which can affect us.
Breathlessness is a clinical symptom due to not having a sufficient amount of thyroid hormones - particularly T3 - circulating. T4 should convert to T3. T4 is inactive and T3 is the only active thyroid hormone and we have million of T3 receptor cells in our body.
I have tried four makes of them nothing worked so far for me unless I stop and wait and see and allergic reaction straight away goes away ! I have tried All 4 makes .one make I took for one day and next day all chest was covered with rash and red boils like bumps .i straight away stopped it.
On Levothyroxine I had severe breathlessness and Thiroyd less but still had at times.I will see my endo on Friday and we will see any other options to try.At the min I feel like iam 5months pregnant even though iam skinny having pimples on face and back the feeling is horrible and I have to live with it till Friday.But I can’t understand one thing when I told my private endo about this his secretary rang me back saying I must stop Levothyroxine even I told him I have severe constipation with blood he said I gotta stop it due to my allergic reactions till I see him which was two weeks ago.I still have to wait four days.Is it wise for him not to ring me back offering another alternatives ?
I have a diary and I have taken Levothyroxine on 50mcg for more than four weeks five I can say I did bloods on 19th and bloods are bit down now I didn’t change the dose or anything .i took 50mcg contiunesly until I could get off side effects which were killing me and made me so sick
Ari3 put up a new post and ask for a private message to be sent to you if they had information where to source Tirosint (I believe it is also T3) as no information is allowed on the open forum.
I don't have information.
Your post will be closed just in case information is put on the forum by accident but you will still get private messages. What you can do first is add some T3 to your T4. That works for many and may not be so expensive.
I ordered Tirosint £128 plus £33 postage one months supply 28 capsules all strengths are the same price .Its an American site u can order from .If anyone needs it I can help with it
I don’t know what else I can try .Maybe iam sensitive to any other ingredients and Tirosint is hypoallergenic I heard for those who are sensitive to dyes and fillers.Iam so fed up that iam ready to try anything just to get myself ok again.Iam bedbound crying desperate and hopeless ....
What are magnesium levels should be ? I do drink 400mg or mcg not really sure of magnesium every evening plus when I don’t want to drink it I spray magesnium oil spray 400 mcg or mg everyday.
Sometimes a low dose of Levo drops your TSH, making your conversion take a hit. Which can actually result in lower levels of fT3. So, you were probably under medicated at 50mcg and at 1/4 grain of NDT you would be even more under medicated.
I know thngs must be really frustrating for you but you have been given some excellent advice from the good ladies/gents on here. They changed my life.
Yes you may be allergic to fillers in tabs but you must remember you are Hashi's - this in its self can reek havoc on your body. Before self medicating I was riddled with joint pain, cracking shoulders and a grinding neck which resulted in referral to rheumatology but thankfully the tabs were working by the time my apt came (he was very interested in finding out about my NDT though).
One thing you must realise now and it will put you in good stead for the future is the Thyroid journey is a slow one there is no quick fix.
What you must now become is methodical stopping and starting changing all the time will not give you the results you require.
I am a big advocate of NDT but I would also recommend that you go back onto the Levo and don't stop or change for 6 weeks. Take piriton if you think your allergic (just remember Hashi is one big allergy).
You have to give your wee body a chance to adjust. While trialing the Levo get all your vitamins/minerals in order and look at your gut health and diet gluten free. When you have all your ducks lined up then start the NDT. For the simple reason if everything else is not right you won't know if the NDT is working or not.
ThNk u for your support and reply I was on Levothyroxine for two months(hope it enough time for it to work) it’s first second when my hypo and Hashimoto was discovered and I didn’t use Levothyroxine or any thyroid medication my tsh was 44 I didn’t have these muscle pains and joint cracking and pain symptoms they started after a week of using Levothyroxine .they started slowly but dradually worsened by time I also felt so depressed cried all over plus after good couple of weeks of having it 50mcg I developed severe stomach pains very very sharp pains and deceloped breathing difficulties and of course rash which appeared every second day .I have stopped this medication (I have tried all makes) 7 days ago and guess what all breathing has become normal and no rash is there!!!! My muscle pains are easing down now I can feel normal again.i think it clearly shows that my body didn’t accept something what was in Levothyroxine for sure.so now iam on nothing as I was told not to have anything till I see doctor himself on Friday .friday seams so far I am just in bed all the time crying feeling depressed so much dry skin on face arms everywhere and constipated hissing in head seams I will lose my mind should I keep taking at least 25mcg of Levothyroxine just to keep going ? Iam so scared scared what endo will tell me but he wrote on report that he has other options like Armour t3 and natural medications.
No I stopped as I had adverse reaction to Levothyroxine and my endo told me to stop it .i have taken antihistamine an hour ago so will try to take Levothyroxine 50mcg just to keep my levels up for time beeing till Friday .husband just brought lactulose syrup and a cream for piles as blood is coming out .I will see my Gp on Wednesday and will ask her to check weather I have damaged anything .i know my levels are dropping now and I feel horrible as I can feel it.I will ring to couple of Americas pharmacies to know weather they do Tirosint .i know 100% that I can’t take Levothyroxine MercuryPharma,Teva,Almus and Wocraft as I tried them all .Its been six months now and iam ready to move on and try something different.If I won’t try I will never know .Basically Tirosint is hypoallergenic .As I know iam very sensitive to medications in overall.
I stopped it because of breathing difficulties and it was serious I had such a big stomach cramps I could even sit straight so better it was to stop rather than to contiune my breathing now is perfect and no stomach problems which shows my body isn’t made for Levothyroxine those specific brands people can be sensitive and I know iam one of them
My point is that you haven't taken Levothyroxine (properly) for more than a few days. You were on Perfectil also, which you shouldn't have been taking: too much iodine, too much iron (I think someone else pointed out) etc.
All the symptoms you are describing are typically what I get if I am under medicated. Or if my TSH was too high I have to be under 1 or surprised to feel well.
The only way I could explain it when I was at my worst was that my body was attacking itself.
Dry skin my legs used to look like rhino's skin and my hands looked as if I had severe eczema and would crack and bleed some days I felt like a leper I was always covered in some type of rash.
Constipation was the bain of my life felt like I spent hours in the wee room.
Unfortunately the hissing sounds like tinnitus this never goes away for me despite being well but all is not lost you can learn not to focus on it - background noise like the TV or radio on always helps.
I presume someone originally put you on 50mcg of levo if this is the case and it was me I would go back in this. I believe you would be having all these symptoms if you were on levo or not because at the moment you are not well.
It's tough when you feel so poorly but if you can soldier on things will get better but you have to stick with it
Hopefully the endo will consider T3 but many find this is not the case.
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currently I have constipation hair loss dry skin arms face and sandy scalp painful eyes blurry vision loud hissing in head all the time etc I just ask you for any help who had expierence with similar things or could give me any advice iam so fed up so fed up that I don’t want to live anymore ....I cry every single day I have lost job and I don’t have anyone.Iam seeing private endo on Friday he told me to stop Levothyroxine and wait for his appointment.It seams ages to wait.i want to live normal life I don’t want to exist I want to live but how!!!!
NDT reduction muscle and neck stiffness back. 
Moving from levo to thiroyd... help?
