I went to the doctor after suffering an strange episode whilst driving ( My mouth went dry, i went light headed, my legs went like jelly and my heart was palpitating followed by shaking and going cold/tired) It was really frightening and i had quite a few of these episodes over a couple of days. My nan has recently died so i put it down to the stress of that. The doctor did some routine tests and then phoned me up to say i had an under active thyroid and to take 50 levothyroxine a day and come back in 4 weeks. Since taking the tablets i feel awful. I have got joint pain, feeling dizzy had one day last week where i had another 6 episodes in one day exactly the same as when i was driving they were so bad that i went to a and e - i though i was going to die! The doctor said that it was just my body getting used to the tablets. I have since gone back to my own gp and said that i think it strange how i have only started suffering symptoms since taking tablets and wasn't tired before and didn't have any of the 'normal' symptoms of hypo prior. He has since ordered some more tests (b12, cholesterol, bone? and a repeat of my TSH and a 24hr ecg and an ultra sound!) I am really worried and have never really been ill like this before. I feel like i am going mad, every time i drive i go dizzy so i don't drive now, i have not been work as i'm scared of having an episode again. I have only been on the tablets for 2 weeks. My question is - is this normal to have these side effects to the tablets? my blood results were - free t4 3.3 pmol/L range u 11 -24 serum free t4 and TSH level greater than 100 miu/L range u 0.35 - 4.5. Thank you for reading this
newly diagnoised - please help...: I went to the... - Thyroid UK
newly diagnoised - please help...
Welcome to the forum, Raybopink. My condolences on the death of your grandmother.
The symptoms you ascribed to shock at your Nan's death are hypothyroid symptoms. Although your symptoms appear to have become worse in the 2 weeks you have been taking Levothyroxine, it is not the Levothyroxine causing them. The symptoms were developing and reached a tipping point when you were prescribed Levothyroxine. It takes 7/10 days for Levothyroxine to be absorbed and to start working and up to six weeks for it to metabolise fully. You will need more Levothyroxine but it is usually increased by 25mcg every 4/8 weeks.
You are overtly hypothyroid with TSH of 100 and such low FT4. Normal TSH is between 0.5-1.6 usually and FT4 over 17. Your metabolism will have totally slowed down, including your heart,which is why your GP wants an ECG.
Please don't drive until you feel better. Research shows driving reactions are impaired more than being over the drink limit when TSH is >20. The 'episodes' will get better as the Levothyroxine starts working but it is a slow process to recovery and you should sleep and rest as much as possible in the meantime.
Cholesterol will almost certainly be high when tested but should normalise when you are stable on Levothyroxine. B12, folate, vitamin D and ferritin are often deficient/low in hypothyroid patients so ask your GP to test the other 3 too.
Ask for a printout of all your blood results with lab ref ranges every time you are tested from now on and post them if you want interpretation or advice.
Take Levothyroxine with water on an empty stomach one hour before or two hours after food and drink, 2 hours away from other medication and supplements and 4 hours away from iron, calcium, vitamin D and oestrogen.
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Thank you so much for your reply… my doctor has just phoned me to let me know that my tsh has come down to 73 and my free t4 is now 9.9 and also he said that the anti bodies test was positive? not sure what this means really. He has said that it is unusual that i am not feeling a bit better and is going to speak to an endo???- just had another call from him as he has had a response from the specialist and he has suggested that i should be tested for celiac disease. He also mentioned that my calcium and b12 levels are all fine. I think that judging from other peoples experiences about GPs i am very lucky to have one that will ring me at 10pm at night and is not going to fob me off. Thank you so much for getting back to me i was feeling so upset and on my own - your advice re driving and resting i shall take. Thank you.
I do not think it is unusual that you feel still unwell even worse, I did .My TSH was 102. It can come down very quick ,after .6 weeks mine was 3.3. At 73 you are under medicated but increases have to be done gradually.
Raybopink, Your GP sounds great but may not know much about thyroid. It's good he consulted with the endo though. it would be extremely unusual if you were feeling any better after 2 weeks. You can expect some slight improvement now your FT4 is rising but it's going to take some weeks before you feel better.
Your FT4 rising to 9.9 and your TSH dropping to 73 after 2 weeks is very good. Your GP probably wants to do the ECG before increasing dose and when he finds all is fine he can raise you to 75mcg. Dose increases are usually 25mcg every 4-8 weeks.
Positive thyroid antibodies means you have autoimmune thyroid disease (Hashimoto's) which attacks your thyroid and causes hypothyroidism. 90% of hypothyroidism is caused by Hashi's in the UK and USA. Some people think that autoimmune disease can start in the gut and it is very common for Hashi's patients to have coeliac disease which is caused by gluten intolerance. The coeliac blood screen isn't very accurate so it may be worth trying a gluten-free diet even if the result is negative. A g-f diet can help reduce Hashi flare ups and antibodies but you mst continue eating gluten as usual until after your blood test.
Ask your GP to test ferritin, vitamin D and folate too and get a printout of your B12 and calcium with the lab ref ranges and post them up. GP's idea of fine is often anywhere in range and supplementing to get levels optimal can make a big difference to wellbeing.
Ray, try to get a print out of all the blood tests done so you can see your own progress. The levels you need to meet while taking thyroid hormone differs from those that aren't taking any hormone. Iron and ferritin are needed to convert thyroxine (T4) to the more active FT3 in your body. This happens in the liver. This may explain more.
thank you all for your good advice… I had another 'episode' last night and what i thought was my heart beating faster was actually my heart beating slowly - it was so frightening i phoned for an ambulance but then of course i was just coming out of it by the time they arrived and so i felt like a fool for calling them. They asked for advice from a doctor who said to me that it sounds like a panic attack and when i said my heart rate went lower not higher (I would have thought with a panic attack it would go higher) he dismissed it and said it will just take a while for the tablets to work. I am going to ask for my results when i go to the doctors next week and i shall post them here. I am so grateful for all your advice thank you all.
Ray, i guess it would be foolhardy to say "just ignore your heart rate, it will be all over the place". All the functions controlled by metabolism will be affected by your thyroid ups and downs. Your heart needs a lot of T3 which obviously you have a shortage of. I had myriads of symptoms constantly changing before I began treatment as well. I think the body is trying to sort out where to use your very limited resources first. I would get very slow but hard pounding heart beats at night as well. But what I started out saying is that it isn't so much a heart problem as much as it is a thyroid problem. Everyone who has written about their ECG's have all passed in spite of heart symptoms.
It is very complex but you should try to learn what you can so that you can get some understanding of it. health.howstuffworks.com/hu...
Thanks for the info i guess i just wanted to hear someone say - you won't die from a low heart beat. I feel like i would be able to cope with the symptoms if i knew it wasn't going to kill me - sounds extreme but that is how i feel when i have an 'episode'. I know it will take time but i only had just one symptom before i went on the tablets - the episode whilst driving and that was a couple of weeks prior to going the doctors to get checked out. Before taking the tablets i have had energy and did not experienced the most common symptoms e.g. constipation, weight gain, fatigue etc.
It does reassure me to hear that you had the same symptoms re the heart beat and that you are still here now! Also it seems that there is not many stories from people who say they have taken levo and have now got the correct dose and are back to 'normal' so it would be good to hear from you if that is the case with you.
Thanks again
I'm sorry, I disliked and do not believe in levo. I was on Synthroid for six years and still have residual effects. I did much better on Armour but was under dosed. This is why I urge people to find out and keep track of their treatment. Back in those days, we didn't know your TSH didn't really mean a lot unless it was too high. I collapsed twice on a golf course and my TSH was between 2 and 3. You really need to keep it lower than that. I was also having the night time palpitations also.
We are finding that many things have to be in synch.
These two short videos may help.
I should add that now that I'm taking T3 only. I think when you get older and as things slow down it takes more energy to make use of T4 which can turn into reverse T3 which is also another reason to carefully increase your intake of hormone as your body can handle it. You have many, many chemical reactions going on right now so you have to be careful not to add anymore stressors. Add coconut oil to your diet, eat low carb, some even avoid gluten as Clutter mentioned because it could be a trigger for you. Stay away from soy flour and raw cabbage family vegetables.
Try not to be discouraged because you ARE going to feel better. There is a lot of information to digest.
Hi
I too am recently diagnosed with Hashimoto's and you perfectly describe episodes that I have too. I have only properly started Levothyroxine two weeks ago.
The episodes that one doctor thought were panic attacks, with me, seem to happen when I am sitting in one place too long or standing in queues. I know that sounds silly but it's true. Staff in shops say I look so unwell, that they call an ambulance. Paramedics checked me over and say I'm okay but I feel awful. Only one paramedic showed concern at my sudden jump in pulse rate, so I started checking my pulse rate myself and it is playing silly beggars.(Particularly when I go from sitting to standing, even if I'm not exercising) My blood pressure is good and low. I had an ECG on Friday, which showed everything okay except for pulse rate. Like you, I have to have a 24 hour ECG.
I asked to be checked for P.O.T.S. To rule that out but maybe it is all just down to the Hashimoto's. (Though my endo who I finally got to see this week said although I have a positive antibodies test, he won't agree it is Hashimoto's or Graves, he just wants to call it an autoimmune thyroiditis, which as confused me somewhat). I think he said my TTP antibodies was around 380 but I thought previously it was TPO I forgot to ask for a printout)
I shall be interested to know how your ECG goes, so please post up your results if you'd like to and I will do the same if it might reassure you. I expected to have had a call by now about my 24 hour ECG, but not heard a dickie bird. Mind you my coeliac screening has gone missing too, so have to go through testing for that all over again.
All the best,
Choccie
thats really interesting about your pulse rate - I think people put it down to panic attacks and that is the bit that confuses me. I don't want to waste anyones time but when it happens it is frightening! If it makes you feel any better the paramedic said that if it does make you faint that your body would be OK and it would level itself and you will come around again. I don't have the ecg until a week this monday and can't get in to see my doctor again until the 11th march.
Do you think that what you are experiencing is a panic attack? or do you think that it is a drop in heart rate? It's weird because if i knew it was definitely a panic attack then i could calm myself down but if it is medical reasons like a drop in heart rate then how do you know if you need to call the emergency services?
I think this forum is great and really helpful it makes you feel better just being able to talk and ask questions about it.
Well, some doctors think what I have are panic attacks, I don't see why I would get a panic attack when waiting in a queue in Tesco's or Boots or waiting n line with grandchildren to see Father Xmas. Yes, it makes me embarrassed and I can see how my symptoms could be seen as a panic attack but my legs turn to jelly, I feel I cannot stand, a bit light headed and sweaty but then once I lie down, I go icy cold and start to shake and it's very frightening.
As I say, my heart seems to be racing. Once a first aider got me to lie on the floor in Tesco's, so when the paramedic arrived he checked my blood pressure and pulse then. After a while he got me to stand up and sit on a chair, where he took those things again. My blood pressure was fine but he was so concerned at the jump in my pulse rate, he carted me off to A & E. He told me it was that one thing causing him concern. Of course, in A & E, you lie there for hours by which time my pulse had normalised and I was sent home.
So, I am grateful they are going to do this 24 hour ECG and it'll be nice to know what it shows.
The first time I had an episode of slow, heavy pulse I went straight to the doctor. It's scary, and I don't scare easily. However it is just another symptom of hypothyroidism, which goes away once your medication is optimised. You will probably end up on a dose of 125-173 mcg a day - that seems to be typical, although there is a big variation. So you can see you have quite a long way to go before you are optimised. As a guide you should be aiming for a TSH of around 1 (although it's your symptoms you need to go by not your TSH). I feel best with a TSH much less than 1.
You are so lucky to have a half decent GP. most are so ignorant, yours appears smart enough to know the link between coeliac and hashimoto's. Even with overt coeliac symptoms, i was fobbed off for 15 years by the nhs with "ibs".
Most hypoT people never even get an endo referral. Good luck
Well, actually it was me who REQUESTED the first coeliac test, after reading about its close relation to my other autoimmune conditions. But I AM lucky in that my G.P. listens to me and agreed to do it.
I also asked for an endocrinology referral because of my little collection of autoimmune issues but my doctor was happy to agree to that too.
Welcome to the forum. So sorry to hear about your loss, grandmothers are rather special aren't they. Some excellent advice given put please rest as much as you can till your body gets used to the medication. It takes a while to get near to a stable dose but don't try to rush it, baby steps are better in the long run.
I'm very envious that your GP is being so helpful, not many are, but do keep posting about your journey and how your results are changing. I'm sure that will encourage other newbies joining us to see that there is light at the end of the tunnel. Good luck!
Thank you and yes my nan was wonderful and really miss her at the moment as she was my rock.
I am hypothyroid. I have also been diagnosed with Vasovagal Syncope. This is different to POTS. It only occurs rarely in my case and is usually due to dehydration, not eating regularly, standing in a queue, sitting in one position for ages. The parasympathetic nervous system carries out checks and balances and can suddenly 'decide' it's unhappy with the status quo which in my case causes similar symptoms to you. in my case my heart races then blood pressure drops causing faint feeling. I've been told to lie down immediately wherever I am, raise legs and clench all main muscles. I am sure it is linked to my Hashi but this has never been confirmed to me.
Just thought id put an update on… I have had no major 'episodes' for a few days now and i am feeling 'normal' again! I think the best advice i took from here is that my heart palpitations were not a problem with my heart but a problem with my thyroid. I am taking everyday as it comes and whilst i feel ok i am not letting it stop me doing anything - I am fed up of resting! I hope this is the start of recovery.
Hi - latest update…
I had my ultra sound yesterday and the doctor said no need for further investigation as it was swollen due to under active thyroid - I was sooo relieved had thought that it would be something really bad.
I have also had my bloods back today and they are TSH 14.7 range .35 - 4.5 and T4 13.6 range 11 - 24. So within 4 weeks they are nearly back to normal as am i with only one 'episode' last week that lasted only about an hour! Thank you all you lovely people for making me feel that i am not alone in this. I feel 'normal' again and hopefully this will be of some comfort/hope to those who are newly diagnosed like myself.
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