My 2nd day and sleeping nauseous with headache and brain fog is awful. I can't do this anther day - please help. Here are my bloods which are few days old. Thank you.
So ill on levo please help: My 2nd day and... - Thyroid UK
So ill on levo please help
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summer1953
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I really feel for you summer as with that ultra high TSH of 32.75 (!!) no wonder you feel awful. The blood work hardly has any useful results as it only has your TSH and free T4 (low) - so no free T3 as is so often seen in your UK NHS results (almost utterly useless! No wonder so often people here get private lab results which actually supply the necessary info). I chose to not take Levo but went with NDT (natural Dessicated Thyroid) as it is better tolerated in general... and supplies T3 which Levo doesn't. I understand it's impossible to get a script for NDT however in the U.K. so you would have to source your own there - which likely someone here can help with. What was your starting dose of Levo? and are you taking it at least an hour before food?
summer1953• in reply to
Started on 25 I'm not going to take tomorrow's dose I do have the other results you mentioned but can't seem to send them sorry. Can someone please tell me how I get a private script for ndt please. Thank you .
Please don't miss your dose of Levothyroxine tomorrow. Your TSH is very high and you need to take the medicine. After you have started Levothyroxine, you need to test in 6 weeks time and then increase your dose. Ask your GP about starting on a higher dose such as 50mcg. There may be reasons why you need to start on 25mcg but you could find out. It takes a while to get onto the right dose but you'll be ok when you get there.
How much levo have you been told to take? It is usually started fairly low, either 25mcg or 50mcg daily, then increased gradually after a few weeks.
You may find that a different brand suits you better. May help to speak to your pharmacy or your doctor.
Can you recommend a good brand please? The one I'm taking is called wockhardt. Thank you.
Can't help there, as what suits one person doesn't suit another. You could ask what other ones your pharmacy has.
Levothyroxine supplied on the NHS are generic formulations. As far as I'm aware, there are only 3 types, Wockhardt, Actavis and Mercury Pharma. The MHRA are the regulators and the drugs are strictly controlled and should be bioequivalent. Some people find one type suits them better than another due to the fillers but while you are so hypothyroid, you probably won't notice any difference until you reach your target level. It's the high TSH level that is making you feel ill.
There is also Teva .
I'm so sorry to hear you feel so unwell summer , I've only just started taking Levo and I feel dreadful! The brand I've taken are Mercury Pharma and Activis ! Definitely not "Teva " I had to get another brand I had awful side effects on them headache stomach ache and felt sick ! I started on 25mcg now on 50mcg and 4 weeks later I feel a little a bit better 😀 I'm also looking into NDT
Hope you begin to feel better very soon take care Kazbe 😀
I'm sorry you feel so unwell but you will get better when your thyroid is treated with the correct dose of Levothyroxine. What dose are you on now and what has the doctor ordered to increase by?
Get as much rest as you can while sorting this out. It can take a while to get your TSH within range as usually the doctor has to increase levothyroxine and retest every 6-8 weeks adjusting the dose until your reach your target level. Most people feel better when their TSH reaches about 1.0.
If you take Levothyroxine in the morning then leave an hour before eating although you may drink water. If you take other medication, leave at least 4 hours between taking Levothyroxine and other meds.
For now, stick to Levothyroxine as prescribed by your GP as you are in the UK and other types are not prescribed so keep things simple.
You could also ask your GP to test B12, folate, iron, ferritin and vitamin D levels as all of these can be low in people who are hypothyroid.
Hi. Sorry to hijack this thread with a question of my own but you mentioned leaving four hours between your Levo dose and any other meds you take. I have only been leaving between 90 minutes and 2 hours between Levo and other meds..... do I really need to change that? I had never heard "four hours" before so it concerns me. Thanks in advance.
It's more important if you're taking iron supplements as they can reduce the absorption of Levothyroxine I believe. So the recommendation is to leave 4 hours or more between. Other medication may not need such a gap but you need to check the interractions out.
Low thyroid can cause low stomach acid which produces all sorts of digestive stress like nausea. Might be worth searching online for recommendations for low stomach acid, see if you have any of the symptoms. This can also cause vitamins not to be absorbed properly and cause deficiencies which make the issue worse. Hopefully you get some help and respite soon.
This is a useful link about low stomach acid
peppermint tea or ginger are both good for nausea.or plain black tea with no milk and a bit of toast.And as Nanaedake says above rest.let your body try to sort things with the Levo in the first instance.
Thank you and everyone for helping. I want to persevere but with no one to look after me or prepare a meal for me I don't know if I can. I Will ring my surgery tomorrow To tell them I just can't do this maybe if I took half tablet be better? I don't know why my body is reacting so bad to this medicine.
I think to go and be
seen by gp is the best idea.don't be fobbed
off by receptionist i or anyone.go and good luck
You really must soldier on .Sadly there is no quick fix. On a small starter dose people often feel worse. This is because the body senses the extra hormone you are taking and reduces its own production . This is why you should have a blood test every 6-8 weeks with increases until your TSH reduces to 1 or below.
I can see why you are so stressed as I too have nobody to look after me when I'm Tol I'll to get food or drink, I'm not sure how you go about getting help, maybe social services or ring the surgery maybe, you need a helping hand and as things are with the NHS that's not easy, maybe ring 101 and ask for advice.
Thinking of you.
Summer1953,
It's not uncommon to struggle at first with Levothyroxine but adverse symptoms will usually improve in 7-14 days. It's highly unlikely you would do any better on NDT which you would need a private prescription for as it isn't licensed for UK use and not usually prescribed on NHS.
25mcg is a low dose but you could halve the tablet for a week or two to see if it is easier to tolerate. Wockhardt is the make with the least fillers so is usually easiest to tolerate but if your systems persist talk to your pharmacist and ask to try either Mercury Pharma or Teva which both do 25mcg.
TSH 32 is very high and FT4 8.4 is considerably below range so it is going to take time for the Levothyroxine to build up and start working on your symptoms.
It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose but you will need higher doses every few weeks until TSH is between 0.27 - 1.0 and FT4 is 16 -22. Dose increases are usually in 25mcg increments every 6-8 weeks.
For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.
You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.
thyroiduk.org.uk/tuk/about_...
Red Blood Cell count is mildly below range. One off abnormal result probably isn't significant but possible causes are outlined in labtestsonline.org/understa...
Thank you for explaining all these things, I will try talk to a Dr in the morning if I can. Thanks again.
Yes true about the brand, Actavis makes me so unwell
Excellent advice above, and throughout this forum! Read & learn as much as you can, there's plenty of essential info here. For example, diet - I have to avoid soya like the plague! One of the (many, many) problems with thyroid conditions is you need patience as everything takes time - your body reacting to a change in medication, getting the right medication, getting an appointment with the GP.... 
hi gabby....hope you don't mind me butting in. You mentioned you avoid soy bigtime....i have read that it can affect thyroid hormones.....would you notice a difference even eating it every so often? Also have you any idea if Quorn which is mycoprotien is ok? Was going to ask this in a post but saw you had mentioned it....im vegetarian and do use soya and Quorn but am having major problems sorting medication out
I've had bad reactions to soya & Quorn so avoid them both. It's difficult to know what to eat, what medication or supplements to take. I just research as much as possible, then "suck it & see" - we're all different, I suppose.
yes I guess its an individual thing all said and done....thanks for the reply
Sorry there are no short cuts and trying them often means you have to go back and start again. Sometimes the fillers in the medication can upset us to if you think that might be a problem it's easy to test by taking an antihistamine one hour before your thyroid meds and if it stops the problem you need to try another brand. Once you are happy with a brand then ask the pharmacist to put it on your record card. Another reason for not chopping and changing without reason is that your dose will be eventually tailored to that brand but changing to another can be slightly higher or lower so could make a difference to how you are feeling long term. (Tablets have to be manufactured within a narrow range and each brand will be consistent with its own but other bands can each differ).
As the TSH falls you will start to feel better and hopefully it will drop quickly for you. Your doctors should have told you to have a retest in 6 weeks and he may well give you an increased dose then. The cycle then continues with another test in 6 weeks and so on till the right dose is indicated. Increases and decreases in medication are done in 25 mcg'S which doesn't sound much but can make an impact. It can take 6 months to get your optimum dose sorted. I'm.not telling you that to frighten you but I think being realistic makes the waiting easier but of.cause it could be sooner, we are all different but patience is needed.
Get into the habit of asking for a printout of your results and put the dose you were on as well. Post the results with the ranges as the ranges differ from lab to lab so otherwise we would just be guessing. When you feel up to it have a look at the Thyroid Uk site who run this forum. Lots of good info to read and shout out if anything who don't understand.
Sorry you are feeling so rubbish but it will feel better soon.
Please remember it's the reverse The higher your TSH the more Levothyroxine you need. So it might not be the tablet that is upsetting you. It's the lack of a high enough dose. I had a TT and was started on 150mcg. I thought it was too high but it's what I needed because of my age and weight to bring down my TSH. I didn't understand that to begin with.
I have to ask, how did you feel BEFORE you started taking Levothyroxine?
Before starting levo I was managing although I felt unwell. On levo I can't function at all and my body and brain feels pounding and on fire. My joints ache I'm so nauseous I can't concentrate and feel I'm dying. It feels like I've taken loads sleeping pills I'm so sleepy all the time and keep crying. It wasn't like that before so im despret for advice. I took half only this morning. Now I'm worried if this is enough.
If I understand correctly, you've stated that you've taken half a dose of your 25 mcg levo today, correct? I doubt you will feel better from that. It is concerning that on such a low dose of 25 mcg that you're having these results. I would contact your Dr. immediately. Some folks don't respond well to the Synthroid generic, and you may be one of those people. Or perhaps such a low dose is just amplifying your symptoms. I'm curious how you might feel taking MORE levo, however I will not advise you to do that without guidance from your Dr. It might take quite a while and several dose increases for you to feel better.
I had bad symptoms on Levo, and I didn't even associate it all to the Levo. Ten years of HELL, and Dr's treating the side effects of what turns out was caused by the Levo!
Yes I took half only today, I am sensitive to just about all meds since I got fibromyalgia 20 years ago. If I take just half a none drowsy antihistamine,It will knock me out for a whole day or more. Just trying to explain the problem with drugs. Thanks for your help.
I agree I would go back to your doctor and ask for advice. You need to check out whether anything else could be causing your symptoms. Don't despair, there could be a number of factors contributing to your discomfort that can be sorted out. If you are sensitive to other medicines, has there been anything in the fillers in the past that have caused problems? Are you taking other medication that could be causing the problems or interracting with the Levothryoxine? Don't suffer, go back to the doctor.
Please can you tell me what you now take instead of levo? I'm still struggling on it, feeling worse not better. Thank you x
Please can you tell me if my readings mean I have Hashimoto? Thank you.
Please could you tell me if my readings mean I have Hashimoto. Thank you.
There are no blood tests listed for thyroid antibodies (Hashimoto's) on the document you have supplied.
thank you Nanaedake
Can you get Synthroid in the UK? A lot of people who can't take Levo can take Synthroid. I stopped Levo and felt instanly better. I will start Synthroid tomorrow.
I don't know, I hope someone could tell me please. I live in London UK.
Jam puppy I think Eltroxin which Dr gave me today are same but not sure.
A quick update on your advice I saw my Dr today who gave me a new prescription for another brand (Eltroxin) he told me to have a break for a few days before starting them. He told me to take a quarter each day. Please can someone give me thoughts on changing brands and if you think it may have less inactive ingredients please. Tesco pharmacy have had to order these in for me so I've not actually got them yet. Thank you.
Take your doctor's advice. If they still don't suit you then go back again. You can read the ingredients on the patient information leaflet. I didn't know Eltroxin had been re-released. It used to be the one branded (as opposed to generic) variety of Levothryoxine available on prescription on the NHS. Are they distributed by Mercury Pharma? Give them a try and see if they agree.
Synthroid is a USA brand and as far as I know it's not prescribed in the UK.
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