I was diagnosed just under a month ago and put straight onto 100mcg Levothyroxine. Within an hour of taking it my heart was racing, I was having palpitations, loose bowels, headaches, acute anxiety, shaking, extreme exhaustion but insomnia with it and it felt like a constant panic attack. GP told me to reduce dose to 50mcg which I did and the symptoms were the same. I was told to take the weekend off and start again on 25mcg. Within a day or so my symptoms were awful again. My nails have all started peeling, my skin is bad, so tired and shaky its horrid. I saw a lovely pharmacist who was shocked that I not only hadn't been given a second blood test to see if perhaps this was just a blip in my thyroid but also that no GP had looked at my previous blood tests.
I have since found out that my thyroid has always been on the low end of average function but as a thin, tall person to be put on such a high dose straight away was perhaps not the right way to go. I don't understand why they don't do a second blood test maybe a month later to see if the levels are the same or have come back to where they should be.
As a single mum, working 3 jobs I was the happiest I had been in years until I took these meds and feel like I've been spun into a world of anxiety and panic, feeling very blue with it. It's just vile. Wondering if anyone else has had similar symptoms/troubles with taking Levothyroxine...?
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Shepherdess10, I was shocked to read what had happened to you and sorry you are feeling so awful. I would say your GP has been negligent. Do you have any test results for when your GP decided to put you straight on to 100mcgm levothyroxine. What brand levo did you get?
The 100mcg was Northstar, 50mcg was Accord and 25mcg was workhart I think. I will get hold of the results today and post on here. I demanded another blood test yesterday on the advice of a lovely pharmacist at Tesco so we'll see what that says too! I think this GP has been really thorough asking for Ferritin, B12 as well as antibodies so will be interesting to see... I have absolutely no doubt that this amazing community will be better able to diagnose the results than the GPs will!
oh my goodness what a dreadful experience. Your GP seems to be working very differently to what we usually hear about here. Most get put on 25mcg and forgotten about. Which is equally horrendous for peoples wellbeing. The opposite situation to you. Starting on that high dose will definitely make you feel unwell. It’s common to dose increase in 6-8 week blocks, my GP wanted 12 weeks last time. When I started on 25mcg I felt very odd and after advice here I took it alternate days for a week. I did the same when I moved to 50mcg (8 months later) my GP didn’t understand wellnesss v. ‘normal range’ I was quite poorly looking back, and then I got this inceased to 75mcg in June and it’s just coming up to 12 months since I asked the GP to medicate as they wanted to watch and wait. I get my blood tests done privately now so I can see my thyroid hormone levels and vitamin levels before see the GP. I then check in here before educating the GP I see with what I need. I’ll take the guidance in with me. I usually use the online consultation system to do this for phone consults. Do you know what your Thyroid blood test results and ranges were? Can you get them? You are legally entitled to them, ask the receptionist for a print out. What were your symptoms that led to this diagnosis and treatment? Wishing you a good recovery, you really have been through the mill 🦋💚🦋
Thank you so much for taking the time to come back to me. I knew something wasn't right with how they started the meds and did some research and all I found online was that it was advised to start patients on 25 and move up just like you say but I was just told that this was normal. I then (after speaking to the 3rd GP on the phone) was told that this might have been going on for years so I asked what my previous results were... they hadn't even checked and was told that 5 months previously my bloods had been 'normal'. I had been suffering with bowel problems for about 6weeks, constipation, awful wind and I put it down to having been eating too much raw cabbage in salads over the summer!! 🙈I was also getting very tired and had put on about 6 pounds in 4-5months, which is unlike me. I've always struggled to put weight on and always been very thin. I put this down to stopping smoking and being the happiest I had been in years and now this!! Definitely not feeling happy anymore but I will definitely get a copy of the results and come back on here, thank you so much for the amazing advice and support.
Hi, thank you so much. I am going to go and get my results from last few blood tests to be able to reply to people on here, I already feel like I'd be better asking for advice here than at my GPs, I've now spoken to 4 different ones and they all say something different! One of them simply replied to my call in via text telling me to take the pills!! Wasn't able to explain how rubbish they made me feel.
So.. drugs:
25mcg WOCKHARDT
50mcg ACCORD
100mcg NORTHSTAR
Are they all different? I was started on 100mcg on the back of one TSH result, which all I was told had flagged up T4... I will get the results and post them on here and maybe someone could help me translate them. I did speak to one more approachable GP yesterday who had said that if your thyroid isn't the best (under or over) it can have blips over a matter of years where it would appear to not work/work too much but recover itself... do you know if this is a thing?
Yes ….about 90% of primary hypothyroidism is caused by autoimmune thyroid disease also called Hashimoto’s
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Autoimmune thyroid disease frequently starts with transient hyperthyroid results and symptoms…..or you can just feel “full of energy” and possibly some mild weight loss….this is because as thyroid initially comes under attack …..cells breakdown and excess thyroid hormones are released into the bloodstream
This rapid changing from hypo to hyper is characteristic of early stage autoimmune thyroid disease
After each transient hyper phase …..the thyroid becomes a little more damaged and we become increasingly hypothyroid
So we do need replacement thyroid hormones, but it can be tricky getting started….working out what dose, which brand of levothyroxine suits you best and also extremely important to get vitamins tested and improved to OPTIMAL levels as this helps improve how levothyroxine works
About 90% of thyroid patients are female…..and Hashimoto’s frequently starts soon after pregnancy, or nearing menopause or at puberty……so hormones play a part too
Northstar 50mcg and 100mcg are Accord brand boxed by Lloyds as Northstar
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Levothyroxine must be taken on empty stomach and then nothing apart from water for at least an hour after
Many people taking it waking up, but can be more convenient and possibly more effective to take at bedtime (nothing apart from water for at least an hour before bedtime)
You might find, certainly initially it’s better to split the dose ….taking half dose waking and half at bedtime….can help tolerate by taking as smaller doses
Levothyroxine is extremely fussy hormone
No other medications or vitamin supplements within 2 hours
Some like iron, calcium, vitamin D, magnesium, HRT or PPI not within 4 hours
Hi, I've added my blood results, some not back yet (still waiting on antibodies and ferritin, b12 etc) but you can see results from March this year, September 7th and yesterday... not sure if they make any sense to you. I used to be a phlebotomist and its still a bit like reading a foreign language to me, sorry
in reply to
Thank you so so much for all the incredible information, I've got a lot of reading to do! It means so much to have found somewhere with an army of such knowledgeable people rather blowing my GP surgery out of the water!
Thank you so so much. Many seem to have said I should post my results so I will see if I can pick them up today. I so appreciate your support and will definitely be taking this up with the practice manager
Whilst I understand and fully accept the responses youve received so far, I suggest you could consider a natural approach to help improve your hypo symptoms. At least until the terrible situation with medics/levo is resolved. In fact, it has been reported elsewhere that a natural approach could even delay or reduce the need for levothyroxine for subclinical hypothyroidism, though that may be contentious.
I suggest others on here with confirmed hypothyroidism (which I don't have) who have experienced benefits advise you. But I can suggest other options if this is of interest.
It's udually the opposite. GPs take 3 bllodctests then put patients on 25 for 6 months where they get worse then 50 then 75 and all the time, patients are getting fatter, slower, more tired, You actially got a well meaning GP because if you had been hypo 100 would have been a sensible place to start.
Unfortunately, GP didn't liik at you. You're thin.
You thyroid probably spukes up and down. I would say you need a TPO antibodies test, you may have the autoimmune version.
Your symptoms are not the drug they're hyperthyroidism. Don't be worried that levothyroxine will do this to you if you needed it. You just didn't need it. One day you probably will and it will help
Most hypo patients have Hashimotos or autoimmune hypothyroid, I think its around 90%, its where the immune system mistakenly attacks the body's own organs and tissues, similar to things like rheumatoid arthritis. Over time this will, cause the thyroid to start failing.
Theres no cure to stop this autoimmune attack, all doctors can do is replace the missing thyroid hormones with Levothyroxine, NDT or T3. Normally antibodies will be present in noticeable amounts in blood tests and that's how you know if you have Hashimotos. Theres a strong genetic link with autoimmune thyroid disease.
Then you get others like me who have no antibodies and so presumably my hypothyroid is caused by something else. Could be diet, pregnancy, pituitary issues, lack of iodine in diet. The treatment is the same however.
The "autoimmune version" is where raised thyroid antibodies confirm autoimmune thyroid disease, known to patients as Hashimoto's. This is the most common cause of hypothyroidism and is where the immune system attacks and gradually destroys the thyroid resulting in hypothyroidism. There are other causes but it really doesn't matter much what the cause is because the treatment is the same - you treat the hypothyroidism with synthetic thyroid hormone because your thyroid can't produce enough of it's own.
Unfortunately Redditch has given you some misleading information. The guidelines that most doctors follow suggest 2 x over 10 TSH results to diagnose primary hypothyroidism or 2 x over range (but less than 10) TSH results plus elevated thyroid antibodies to diagnose Hashimoto's (autoimmune).
Then the guidelines suggest 2 ways of initiating Levothyroxine.
One way is to start on "dose by weight" whereby they will calculate 1.6mcg Levo per 1 kg of body weight. This tends to result in a high starting dose, possibly close to what may be your final dose. This way has recently been introduced in the updated version of the guidelines. A GP may initiate Levo this way but doesn't have to.
The other way, and the traditional way used for many years, is to start on 50mcg Levo (but if a child, elderly or the patient has a heart condition the starting dose would be 25mcg). Then the dose would be gradually increased by 25mcg at a time until you reach the dose you need to feel well and symptoms alleviated.
So your GP has gone with the "new" way of initiating Levo, it suits some people but it doesn't suit everyone. Obviously you are in the latter category, your body has been bombarded with a high initial dose of Levo which it can't cope with and has reacted badly to it. It's also worth considering that you might be reacting to the excipients in the tablets, some people find a certain brand doesn't suit them yet when they try a different brand, which has different excipients, they are fine.
Also, Redditch said
Your symptoms are not the drug they're hyperthyroidism. Don't be worried that levothyroxine will do this to you if you needed it. You just didn't need it.
Your symptoms are not hyperthyroidism. Hyperthyroidism is where your own thyroid over produces it's own thyroid hormone.
You may or may not need Levo at this stage. Seeing your test results with their reference ranges will help us understand that. If you do need Levo then you may have been started on too high a dose or you may be reacting to the brand.
Time will tell. Do come back with your results/ranges and we can hopefully help you get this sorted.
Thank you so much, I have now added my results to my initial post, not sure if that's the right way to do it as new here! Have put a range of results and still haven't had some back yet but it gives an idea I guess.
I've always had such a fast metabolism so this is just all very weird for me, never mind the awful symptoms
yes! levo affected me very badly even with a starting dose of only 50 µg the GPs and the endocrinologist all thought I was being neurotic so I stopped taking it but gradually the hypothyroidism became worse and I ran out of energy to do anything. So I had to take something anyway cut a long story short, after years of trial and error I realise that the only way to take levothyroxine is in doses no bigger than 25 µg and no closer than four hours apart preferably five. This is the interval that I am best able to mimic the natural release of T4 from the thyroid in the healthy human body. I know it is the received wisdom to take the entire prescription in one go on waking in the morning but really it is nowhere near what nature intended and as levothyroxine is bio identical to natural T4 it makes sense to me to drip feed it over a 24 hour period as far as we are able to do so. I have stopped taking any dose greater than 25 µg and I spread it throughout the day with no real issues regarding absorption in conflict with food and drink which is the reason given for not doing it this way! It has been so successful for me that I was able to stop taking T3 which was what I had been relying on given I was struggling to take the large doses of T4. Anyway I don’t know whether this may help you or not but that has been my experience.
I think several members have mentioned they split their dose of Levo, some are unable to tolerate it in one fell swoop or feel much better and have better blood test results this way. As with anything related to thyroid meds its trial and error.
Thank you. I have SO much to learn! Need to start looking up T3, T4, TSH, all of these things to help explain it all. Thank you for your response, this sounds like such a sensible way of doing things.
20 years ago I was diagnosed with Hashimoto’s in Italy, where I was living then. My T4 and TSH were normal but I had antibodies. My doctor started me on thyroxine as he said my thyroid would be struggling to keep up the normal levels and I had a slight goitre. I can’t remember the initial dose but it went up to 75. The first thing I noticed was that my toe nails grew inwards for the first time in my life! I don’t think I had any other bad effects of starting treatment but it’s a long time ago.
Going to go and get the last 5 results from past few years. I had digestive problems (constipation, bad wind), fatigue and mild weight gain (6lbs in about 4-5 months which is very unlike me)... this diagnosis was made from just one blood test although I do know my previous bloods done in March this year were 'normal'
I have no idea. As soon as I have results I will post on here. All I was told was that (once I had asked that they check previous results) my past TSH levels were all on the low end of normal but this one showed that my thyroid wasn't working properly, that's all they said. Will get results as this community seems to know way more than my GP surgery about all of it!
hi 👋some great information you have been given by our knowledge members. I did notice you said you had given up smoking before your symptoms started. There is evidence that stopping smoking can trigger hypothyroidism. I know it’s annoying, right! Is it possible the weight gain and constipation was from stopping smoking? I too gave up smoking and have since had thyroid problems. Depending on what your results look like (and there are far more experienced people here than me to advise you) you could try optimising your vitamins if you don’t want to start Levothyroxine yet.
Wow, thank you. I had no idea at all, seems all too coincidental that I've had all these problems since starting the drugs and the initial symptoms were since stopping smoking.
Is there somewhere specific I can go to try and find the right vitamins to give this a try?
then come back with results, include the reference ranges and units of measurement for B12 and Vit D, we can then see if you have any low levels or deficiencies and suggest what you can take to help.
Thank you so much Susie, I have now ordered a MediChecks test as recommended by SlowDragon so as soon as I have all my results I will come back to you. Just need to try and hold onto my sanity in the meantime!
OK, so your September results of TSH: 27.6 (0.27-4.20) and FT4 of 6.5 (12-22) confirmed overt hypothyroidism and your GP was right to start you on Levo. Maybe because of such dire results he thought jumping in at 100mcg Levo would be best, unfortunately for you it didn't turn out that way.
Your new results from yesterday are definitely showing hypothyroidism and you need treating. I suppose you could start with a very small dose of Levo and very gradually build it up with small increments, leaving a few weeks between each increase. It occasionally happens that some people are so sensitive to the meds that they need to take it ultra slowly.
If you find that you can't tolerate any brand of Levo tablets then your GP should be willing to try you on liquid Levo, he may be reluctant because it's very expensive compared to the tablets but needs must, you need treatment and if one type can't be tolerated then you are entitled to try and find another type that does.
Your March TSH result of 1.05 does make one wonder if there is possibly an indication of autoimmune thyroid disease so definitely push for thyroid antibodies to be tested. GP will very likely only be able to get Thyroid Peroxidase (TPO) antibodies tested and sometimes these come back negative yet the patient does have a suggestion of Hashi's so testing Thyroglobulin (Tg) antibodies is the next step, one can have negative TPO but positive Tg antibodies with Hashi's. I believe Tg antibodies might only be done at secondary level rather than primary level. And just to complicate things even further, one can have Hashi's without raised antibodies. But at the end of the day it's not the Hashi's that's treated, the treatment is for the hypothyroidism.
Thank you, not what I was hoping to hear but it is what it is. I was hoping they might have made a mistake especially given yesterdays results being so much lower.
Can't stomach these side effects so will have to try to find an alternative route. I am a single mum and my son is having a hard time just now so I can't afford to be exhausted and anxious/crying all the time (all since taking these horrible drugs). Am seeing Endo specialist in November so maybe they can suggest something else 🙏
There isn't anything else I'm afraid. You need the hormone (it's a hormone not a drug) but you need to work up to it slowly. Levothyroxine has a long half-life so just having a weekend off and restarting won't have helped much. If I were you, I would stop the tablets for 6 weeks. Let it all flush out. Then start again. 25mcg every other day and see how that is for several weeks. If OK, increase to 25mcg every day and leave it for 6 weeks then book another blood test. Each time make your dose increases small. You can cut the pills in half to get small doses. I currently need more than 50 but didn't want to go straight to 75 so I am taking 62.5mcg a day by cutting a 100mcg tablet in half and also a 25mcg tablet in half.
It's rough going, no doubt about it. But your panic is from the shock of too much too soon I think.
You can’t wait without thyroid hormones until November….you would become EXTREMELY unwell
Levothyroxine isn’t a drug it’s a replacement thyroid hormone, because your own thyroid is packing up
What’s your current diet like
Are you vegetarian or vegan?
Lactose intolerance or on dairy free diet?
Quitting smoking can appear to be the catalyst for Hashimoto’s getting diagnosed……but research suggests that it’s more likely that the toxins in cigarettes were masking the affects of Hashimoto’s.
Restarting smoking would definitely not be the answer
Well done for quitting,
Next steps are to get results of vitamin testing and get started on levothyroxine…however slowly
Yes. For me it was because of low iron. Low iron plus adding thyroxine made me feel hyperadrenergic and I thought I must have wring advice. This hapoened even at low doses. There were 3 case studies from Mayo I found where the women who could not stand the added kevothyrine they needed because of long standing iron deficiency and were better after ferritin, anemia, iron saturation and other markers were closer to the norm.
😳looking at those results SeasideSusie is right ( I said there were more knowledgeable people than me 😁). However, getting the vitamins optimal will help with Levothyroxine treatment.
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Anyone else having problem with site?
Does anyone else have problems swallowing food sometimes?
Does anyone else suffer withdrawal symptoms after levothyroxine reduction
Do I have thyroid problems or something else?
Anyone else had problems with Medichecks?
