I’ve had a tough time trying to tolerate thyroid meds, both NDT also T3 both caused problems with awful side effects. I then saw my nhs endo in beginning of April who started me on a quarter of 25mg ONCE A Week. My tsh was 27 then. My GP ran some blood tests a few weeks ago and it had gone up to 37.5 I felt incredibly ill so she advised go up to quarter every day which I did. However I now have braydycardia so my GP put me up again to half a day. Although I have bloating/nausea/stomach ache I’m managing to persevere due to (I’m sure) the infusion I have every 3 weeks which has vitamins and minerals in as well as pain meds. Will my tsh go down can anyone tell me please? Also did I cause the heart problem with starting and stopping different thyroid meds? Feeling overwhelmed with it all. Thank you reading.
Latest tsh results 36.52: I’ve had a tough time... - Thyroid UK
Latest tsh results 36.52
I'm pretty sure you did not cause your heart problems, but your doctors may be doing so with their bizarre dosing patterns.
Bradycardia can be a symptom of hypothyroidism - which you obviously have. By starting you on such a rediculously low dose, your doctor could be making you more hypo - well, your endo did, as witnessed by your TSH. The best way to start is on 50 mcg.
Can you tell us exactly what problems you had with NDT and T3? And, how were your nutrient levels at that time? What is this 'infusion' you mention? What is in it, exactly? How long have you been having that? We always need as much detail as you can possibly give to be able to see the whole picture and help.
Your TSH will go down when you get onto the right dose of the right thyroid hormone replacement for you. But, more importantly, your FT4 and FT3 will rise, and that will make you feel much better. 
Dear greygoose, will my heart condition get better when my tsh becomes normal then? I have been having a Lidocaine infusion which the pain Dr I see also adds vitamins and minerals plus calcium. When I took NDT WP I could hardly function- I now believe it was the pig that caused this, I only eat white meat so I think it must have been that. Then I tried T3 and on the 3rd day got terribly ill- both the WP and T3 were on private script and with consultation fee I spent over £800. Looking back I deeply regret my choices I made, the T3 had no brand name, I could have been taking anything. In beginning of April my nhs endo told me to take a quarter of 25mg once a week until he see me again in September. He was horrible to me that day and made me cry. I was diagnosed with hypothyroidism 2years ago, but because I couldn’t tolerate levo I’ve been stopping and starting my meds. But I feel I’m in a better place now as the levo Im taking has hardly any inactive ingredients plus the infusion helps I’m sure. I still can’t get my vit D up higher then 49 though. I’m always worried about writing too much about myself because it’s the same old story, so that’s why you don’t know the full picture to help me. I go for loads of tests for my heart over the next 2 weeks. Thank you for saying I didn’t cause it, but I feel in a way I did, because my body can’t tolerate meds very well. Thank you for taking the time to reply.
I’ve been having infusions since April so when I started NDT my vit levels were probably low.
I'm afraid it's impossible to predict if your heart will get better, but it's a possibility. But, nothing to do with your TSH. It's the T3 that needs to be optimal. TSH is just a vague indication at best, and it doesn't cause symptoms.
I have been having a Lidocaine infusion which the pain Dr I see also adds vitamins and minerals plus calcium.
I really do not like the sound of that. Why would he add calcium? Adding anything without first testing to see if you need it, is wrong. Some things, like calcium, can do more harm than good if you have too much. And, calcium especially, should be tested regularly to avoid that. What he's doing is totally unscientific.
It would have been preferable to have had your nutrient levels tested before you started NDT, because they really do need to be good before you start. And, you should only supplement with what you need. More is not better.
When I took NDT WP I could hardly function- I now believe it was the pig that caused this, I only eat white meat so I think it must have been that.
Your body's ability to tolerate NDT has nothing to do with what you eat. Some people are allergic to pork, but that's why they don't eat it, not because they don't eat it.
So, it could have been that you are allergic to pork, or it could have been because your nutrients were low. But, do you have Hashi's? Sometimes Hashi's people find that NDT makes things worse, rather than better.
But, how much did you take? And, how did you take it? Those are important factors to consider. You have to take enough thyroid hormone for it to help you.
Then I tried T3 and on the 3rd day got terribly ill
OK, but why do you think that was because of the T3? How much were you taking? How did you take it? Were you taking T3 only, or with T4?
In beginning of April my nhs endo told me to take a quarter of 25mg once a week until he see me again in September.
That is stupid, and bound to make you worse. It certainly wouldn't help in any way. I bet this horrible man is a diabetes specialist, isn't he?
But I feel I’m in a better place now as the levo Im taking has hardly any inactive ingredients
It has hardly any hormone, either! Which brand are you taking? What dose of levo where you started on the first time you took it?
I still can’t get my vit D up higher then 49 though.
How much are you taking? Are you taking magnesium and vit K2-MK7 with it?
Stop blaming yourself. None of this is your fault, and it doesn't help to regret the past. I, too, have spent a small fortune on trying to get myself better, and you wouldn't believe some of the charlatans I've seen! But desperate people take desperate measures, and it's not their fault. It's the fault of the people that are supposed to be looking after them but don't.
So, stop looking backwards and start looking forwards. Learn about your disease. Get copies of your blood test results and keep your own records. Write everything down. With each set of tests make notes of what you're taking, and how you feel, list your symptoms. These records will be invaluable in the future. And, most important of all, question everything! Don't take anything a doctor says at face value. Always ask 'why?' You have a right to know.
Dear greygoose I wanted to give you a quick update- I have taken all your advice (apart from adding in the T3) I’m now taking 25mg of my levo, I’m taking K2 MK-7 also. I take B12 and also the vitamin C which has helped thank you Greygoose for your patience with me. I saw my GP yesterday and the only test she will do is my TSH and will not do it till 3 weeks time. I am managing to tolerate the levo better, but I’m very tired and still bloated but not as bad as before you helped me. I’ve had an echocardiogram and now I’m waiting for the results. I have now got to see if I can see another endo in September, I can’t face him after nearly killing me telling me to take a Quarter of a tablet a week- I can’t ever forget the way he sat laughing at me as I sat crying that day. At least I’ve found help now from yourself and others on here. Thank you x
That is so good to hear. I'm so glad things are improving. And you are very welcome to my patience. Just happy to help.
As for that dreadful endo, report him! He is not supposed to laugh at you, most unprofessional! What a dreadful man. Write to his superiors and tell them all about it. He should not be allowed to do that to any more suffering people.
Dear Greygoose I’m not feeling well at all on the half I’m taking each day. I managed the quarter but on half I’m extremely bloated feel nauseous my legs are feeling tingling and swollen and the tiredness is awful. I have a heart X-ray tomorrow the tiredness may be my heat, but could be the cfs/fibro which I also have. I have pain in my elbows and mussels too. I know starting dose is 50mg of levo but when I was on that I could not function and felt I was dying. I’m struggling on the half I take, can you tell me what to do please? Is this low dose causing more thyroid problems? Thank you.
I'm afraid I don't have enough information to tell you much. You didn't answer any of the questions I asked above. I don't know what supplements you're taking in that 'infusion' - not all supplements are good - and we have no nutrient testing to go by but your FT4 is so very low that I would think that the low dose is doing you more harm than good. You are very, very hypo. So, not surprising you have symptoms.
Did you get, and start taking, the magnesium that reallyfedup suggested?
The levo brand I take is Wockharda. My first experience was on 50mg. I
was taking 20mg a day of T3 on its own. My supplements are magnesium 400mg Vit D (Drs best) 1,000. Yes My endo is a diabetic specialist. I have autoimmune thyroid disease my antibodies are off scale at over 1,000. I have cfs/fibro. The infusion has vit C vit D B12 and large dose of calcium. Please can you help me.
I very much doubt you have CFS/fibro. You have badly treated Hashi's.
OK, so it's obvious that your endo doesn't know what he's doing, and just taking 1/4 25 mcg levo a week was ludicrous. He's left you very hypos. So, now you're taking 12.5 mcg levo daily? Do you have enough levo to increase your dose by yourself?
How did you feel on T3 only? Would you be able/willing to go back on that?
I'm really worried about that calcium. Why is he giving you that? Do you have osteoporosis? Just taking vit D will raise your absorption of calcium from food. So, you're probably dealing with a huge excess of calcium by now. And, you really should be taking vit K2 - MK7 as well, to make sure all that calcium goes into the bones and teeth, and doesn't build up in the soft tissues. It could give you a heart attack. And, you could also be over-dosing on vit D.
But, your main problem is obviously that you should be taking more thyroid hormones. Have you talked to your GP about this? Surely he must see how wrong the endo is in his treatment of you. If I were you, I wouldn't go back to that endo, he won't make you well. He's not capable.
I don't see what I can do to help you - except tell you to increase your levo. Apart from your TSH, I don't know what any of your levels are - but your TSH is obviously far too high. Have you even had your FT4/3 tested?
The tingling legs sounds like low B12. I know you have B12 in your 'infusion' but we don't know what sort of B12 - it might be the wrong one. And, just taking B12 isn't going to do much good. You need to have a B complex, with all the Bs, with it. Muscle aches could be low zinc. Have you tried taking zinc? And the bloating from low stomach acid. Do you have acid reflux at all?
I'm sorry, more questions than answers, but I'm groping around here, trying to understand the problem, and your doctors aren't helping. But, I do think that half your problems come from too low a dose of levo, and it needs increasing. And, you need proper testing, too.
Yes I am taking 12.5mg a day I do have enough to go up but I’m scared of the side effects getting worse. I have t3 and yes I am willing to try them again. Could all that calcium have given me this heart condition I now have? Is there a way of getting it out of my system quickly? My dexa scan came back normal for bones. I will get tested on all my thyroid levels and post them for you as soon as I get them back. T3 on its own made me feel ill - I tried spreading it out but nothing helped. I don’t have acid reflux but do have constant stomach ache and ibs. I’m seeing my gp next week for a review on thyroid meds. It’s a mess I know, I’ve had this infusion plus all the other things I’ve been doing wrong. I hope I can turn this around but if I can’t tolerate my meds I don’t know how. Sincere thanks for your reply I do know you are trying to help and I’ve not got all the information you need to do that.
One of the problems is, the doctor probably won't do all the tests you need. But, ask for:
TSH
FT4
vit D
ferritin
calcium
You know you have Hashi's, but that's not really the problem at the moment. The problem is that the resulting hypo has gone untreated for so long. That will mean that your stomach acid has probably dropped, meaning that you have absorption problems. Are you taking anything for your stomach pains/IBS?
One thing I would suggest you try is take some vit C with your levo every day, at the same time. I presume you take your levo on an empty stomach and wait an hour before eating, and don't take any supplements/medication at the same time? Vit C is the except. You can try taking it at the same time and see if it helps at all. It might help with the bloating by raising the acid level in your stomach and thereby helping you absorb.
For the calcium, I suggest you talk to the doctor that's giving you the infusion, ask him for his reasoning, and tell him you'd rather not have the calcium. Get some vit K2 - MK7
amazon.fr/Vitamine-menaquin...
and start taking that straight away. I don't know if it could have anything to do with your present heart condition, but excess calcium is not a good thing to have in the blood. You need to get it out of the blood and into the teeth and bones, and the K2 will help with that. But, it does need testing.
You probably weren't able to tolerate T3 because your nutrients were low, and possibly you were taking too much too soon? I don't know, but it might help to try a little again with the T4 - worth a try, anyway. Just 5 mcg.
Have you tried going gluten-free? Sorry, I can't remember if you've already said. That does help a lot of people.
Keep talking to me, tell me what's going on, let's see if anything sparks anyone's little light bulb on the top of their head. I'm sure, together, we can beat this thing. But, testing is top priority.
I have made notes and will buy the things you said tomorrow if I can. Thank you for your advice much appreciated.
I have had real issues with levothyroxine. I was started on a minute dose when I was first diagnosed with hashimoto thyroiditis and hypothyroidism. I was started on either the 50 or25 mcg dose and had all the side effects of toxicity and had to stop. My TSH was about 12 at the time. It's gone up to 19 since but dropped to about 6 now. I struggle with All medication, including antihistamine and vitamin supplements, and am attending a NHS immunology clinic for testing, but will definitely need to go back on thyroid medication at some point. Dreading it!!! I was told yo try 12.5mcg which I am not sure would do anything effectively anyway but would probably cause me issues. (1/4 of a paracetomol or antihistamine makes my lips swell!) I not sure what the answer is either I am afraid . Some people do struggle with taking medication and it would be great if the powers that be could solve the mystery as to why!!!
Hi the powers that be don't care if you can't tolerate Meds I had such a server reaction to carbimazole and propylthiouracill I was taken off carbimazole by a heart specialist at my hospital I had server traciycadia he informed my GP and consultan of this the Meds wernt working as I was vomiting them bk so I went in to traciycadia..my consultant was like a kid who'd been told off for doing appalling homework. .he laughed at me and said iv never heard of anyone not being able to take thiyroid Meds. .they put me on PTU to which I was severely ill again but my GP insisted I take them knowing I was by now bedridden vomiting not keeping them down long enough for them to work..so upshot I was rushed in with thiyroid storm..I thort the first thing a doctor should look at is the state of his pacient how do they look how are they feeling..well I looked like death..but still no movement from my Gp..then after 4 days of struggle a doc came to see me said ho you need admitted..on admittion they gave me 6 small tablets I was a bit delirious my sister in law told me they watched me slowly swallow these tablets never said what they were..when I finally sort of got my head together they came with 6 more I took them but pulled the nurse up i asked what they were she said ptu I nearly fainted I told her the reason I'm in here is because I cannot tolerate them...well they saw what that poison did to me for the next 3 days I vomited had server runs was going downhill fast..when they were out of my system I started to feel better..thank god! !! Then if a nurse didn't cum with 6 more for me to take it thort are u all nuts in here I sternly told her I cannot tolerate the Meds she said the consultant says you have to have them i said give them to him to take because I'm taking no more would I have been on an autopsy table before them scratched their heads looking in to my cut open body and saying eureka she's intolerant to anti thyroid Meds. .give me a knighthood ho and inform her family they can take her body..that's how bad I feel about the NHS at the moment but they take no responsibility for their appalling actions no one as ever appoligized for my treatment in hospital they should be ashamed call themselves professionals...professional idiots...
Dear berkie I’ve just read what you have been through which is shocking, please can you tell me what you are taking now to manage your thyroid problems I’m bloated, constipated feel sick and joint pain. I’m too scared to go up on my levo at the moment. Thanks
Hi
I have just had a total thiyroid removal on may 8th..I left hospital with a load of Meds most pain relife and 2 boxes of levothroxine one box is actavis 100 mg the other is teva 25 mg. ..no one has told me what amount to take so iv started on 100 mg. .I can't say how im feeling as I'm still in pain and have developed tonsillitis to..but I am having a rapid heartbeat on walking so far that's my only symptom..I don't see the consultant for 4 weeks..p.s..I was diagnosed with graves last year after fighting my Gp for five years saying I had an auto immune illness and him saying it was the menopause he Wone that fight for over five years kept me very ill for all that time...
As I'm new to levothroxine I can't help much on that subject..for now but their are plenty of good people on here who give fantastic advice..but my advise I can give u is push them gps/consultants to do their jobs right try to arm your self with as much info on the subject as u can I found that helped because my consultant kept asking me how I knew these things I said I have done my homework...don't be afraid to counteract them they arnt always right...
I do hope u get sorted I really don't know how I'm going to be on leveroxin but I do know 2 things that's not returned...the server shaking and server sweating it's heaven to be able to sleep again..
Thank you for your helpful reply you have been through a lot, reading yours and others posts how they’ve been let down by the medical profession makes me feel I’ve stepped into a living nightmare. I do as much research as I can but not enough to feel I can stand my ground with the endo I see, he laughs and poo poos anything I say as a joke and not true. I chose the levo with the less fillers I take Wockhardt brand, I don’t trust teva after I read lots of people can’t tolerate the fillers in them. I wish I knew the answer as why we are treated so badly I’m dreading seeing the endo who upset me again. Thanks again for your reply.
Hi
I was very much like you when seeing consultants ect..but when you get down to it they are only human they make mistakes like all of us I saw my endo a few times before my diagnosis of graves and to be honest let him walk right over me I sat their never spoke over him didn't question things he was saying eventho I knew he was wrong after several app getting nowhere I'd had enough.. people on here helped me greatly when they said who's health is it his or yours only you can fight for you best health..consultans/ doctors ect are getting paid to do a service to us it's a job and some are awfull at it we as patients must question these professionals if we're sure they are wrong like you I have had some awfull doctors and consultant's but I now have found the strength to sit up and blow them out when I know they are wrong .OK they don't like it boo hoo and one consultant I had really didn't like me asking questions..as I said to him sir I value my health and would very much like to get better now can you help me with that!!! I now look forward to the app don't think they look forward to seeing me tho..it's a fight unfortunately and yes a nightmare and it should not be that way..but that's our health service at the moment..they want you in an app and bk out as soon as they can..what can you tell yr Gp in 8 mins him looking at the clock and you thinking how the hell am I going to get my fears out to him in 8 mins..not possible to be honest when I'm in an app I always say I know yr very bust but I need you to listen to me if this requires another app then I I'm willing to see you again tomorrow....sud see their face....rabbit in headlights springs to mind..try to look at them as servants rather than gods...I do..xxx
Hello, I cannot take Levo also due to bad side effects, etc. I have Addison’s Disease (adrenal insufficiency) and Hashimoto’s (autoimmune hypothyroidism). For these I take NP thyroid a natural hypothyroid med) and hydrocortisone for Addison’s disease (adrenal insufficiency). I have vitamin D deficiency and take a weekly supplement 50,000iu. Hope this helps.
Thank you runner95 I also have autoimmune hypothyroidism I was tested for Addison but my test was normal. Is NP given on the NHS? Thanks
No NDT on NHS, only thyroxine.
You might want to see if Armour thyroid is available to you. It is a natural form that the side effects should be less than levo.
Dear reallyfedup I wanted to give you a quick update and to thank you for your advice and help. I have regular magnesium foot baths and drink the lovely water you recommend every day. It says on the back of bottle it has fluoride in it, do you know if this is from natural source or wether it’s added? It’s only a small amount but just thought I’d ask. Things are improving slowly and I can’t thank you enough for your helpful advice x
Thank you for explaining I really am feeling the benefits I’ve stocked up!
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