Hi there! Got diagnosed as hypo 2 weeks ago. Tsh 5.67 free t4, 0.52. Doc put me on 50mcg. It's been 7 days, today. I'm soo tired, irritable, nauseated, and my anxiety is worse. Still freezing all the time... I keep reading that a month is when i might feel more like myself.... but I am soo miserable a week in 😭😭😭😂. Anyone go through this? How long until you felt better? Thank you for your responses! 😁🤗
New to levothyroxine! : Hi there! Got diagnosed... - Thyroid UK
New to levothyroxine!
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GreenhouseGal
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Jaydee1507Administrator
Welcome to the group.
You haven't quoted the reference range for FT4 but it looks pretty low to me.
50mcgs is a reasonable starting dose but it is only a starting dose and you will need to retest in 6-8 weeks from when you've been on a stable dose and then increase by 25mcgs. Repeat.
You may not feel significantly better on just 50mcgs. It may take until you are closer to your optimal dose.
It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.
Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...
There is also a new company offering walk in & mail order blood tests in London, Surrey, Sussex, Kent areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private postal testing early Monday or Tuesday morning.
Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test. It’s worth trialling a strictly gluten free diet to see if it helps symptoms.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
Thank you for the reply. The reference range for free t4 was 0.61-1.24. I have not yet been tested for antibodies. But I will assume I probably have it since I have other autoimmune issues. 😬🤷♀️ I'm sure my new doctor will look at all that when I see him in 3 weeks. I just wonder when these horrible side effects will go away.... it's very debilitating mentally. 😔 wondering if it's normal. 💛
So your FT4 was below range. You do need to quote reference ranges each time as they vary from lab to lab.
The NHS doesn't pay much heed to autoimmune thyroid issues so you may have to push to get the antibodies run. Also the NHS only test TPO antibodies and some folk also need Tg (Thyroglobulin) antibodies tested to be sure they have Hashimoto's.
Most people end up on over 100mcgs Levo unless you're particularly tiny so you have a few dose increases to go until you feel much better.
In the mean time start the strictly gluten free trial. You will need to be reading every label of things you buy/put in your mouth to check for not just wheat but a number of other substances that get slipped into many many products. coeliac.org.uk/information-...
What you are experiencing aren't really side effects as such but hypo symptoms that get revealed once you start Levo. When you increase your Levo dose the symptoms will change and improve over time. Its a matter of managing the symptoms until they get better with higher doses of levo unfortunately.
If you want to get support then just post on here. We will help you through your treatment til you are better.
What you are going through is completely normal. It so happens that a relative of mine started treatment a few weeks ago at 50mcg Levo just like you. She is currently sweating buckets at the slightest exertion. Everyone has slightly different symptoms but I promise you they will get better with a lot more time and higher doses.
You also need to get your vitamins to OPTIMAL which will help enormously, so do get those tested and post results here for comments.
Thank you. I appreciate you. I've been gluten free for a while. Before I got diagnosed, I thought maybe that's why my allergies were so bad... but it didn't help with those😭. I take a ton of supplements- selenium and vit d are just a couple. I just pray that this helps me. I've had bad joint issues and spinal stenosis pain since I had my son 11 years ago... wonder if it's related?
Taking supplements is one thing but you need to know if they are working, so you need to test the key ones ferritin, folate, B12 & D3.
Well done on going gluten free, its not always easy. You could now try dairy free as well which helps a smaller percentage of people butt very worth while trying.
Thyroid issues can be triggered by childbirth and can often rumble along at a low level for years before being picked up so yes joint issues etc may well be related.
SlowDragonAdministrator
Welcome to the forum
Which brand levothyroxine have you started on ?
Request GP test vitamin levels, thyroid antibodies …..and coeliac blood test BEFORE trialing strictly gluten free diet
Thank you. I'm not sure the brand. It's generic. I'll look when I get home from work what manufacturer it is. I see my gp on 8/3- I'll relay your test info. My ob/gyn is the one that found the thyroid dysfunction- and started me on the levo. I was not expecting it! 😂 I thought it was menopause, for sure 😆🤷♀️. Especially since I've always supplemented lugols to prevent any issues. Oh well. 😂
If you’re still taking iodine strongly recommend you stop now
Iodine frequently exacerbates thyroid disease badly
Iodine use to be used to treat hyperthyroid disease
Iodine could even be cause of your raised TSH
Yes. I saw that after I was diagnosed. I cut way back. Thinking of stopping since levothyroxine has 4 iodine molecules in it already... you are spot on! 😁😁😁 🤗
Yes,I looked into that. What I read was that if you are taking selenium with it, it only makes problems you already have, worse.... but I've had the same symptoms since before I started the iodine. It would be great if I don't need medicine forever! 😁😁😁
Levothyroxine is not a medication…..it’s a replacement thyroid hormone
Levothyroxine doesn’t “top up” your own thyroid, it replaces it
That's sad. Poor thyroid! I wish it did "top it up" since it was making some.... 🫤😔
The feed back mechanism of TSH will reduce your own thyroid hormones
Taking levothyroxine, TSH drops (message from pituitary to tell thyroid to work) …..as TSH reduces your own thyroid has a holiday and stops working so hard
My bottle says manufacturer: Amneal. Not sure what that means 🤣. Is that a bad one? Or do I just stick to the same? 🤔🤗
sorry ….don’t know
This is U.K. based forum
We only have a few brands
I think there are lots of brands in USA
The most important single thing is to be aware.
Amneal is just one (of many) makes in the USA.
Changing makes can cause all sorts of problems. But sometimes makes no noticeable difference at all.
Ensure that you don't get changed without even realising.
Did you notice my reply a while ago pointing you ate my medicines documents which might be helpful? (I include USA products.)
Amneal manufacture generic medicines for the US amneal.com/products/our-por...
Different pharma levothyroxines can affect us differently, for several reasons. So make sure you always get the same one, whether that be generic or branded.
helvellaAdministrator
It looks as if you are not in the UK (from the FT4 reference interval quoted).
It would help if you could add your country to your profile so see where you are when you post! 
Location affects lots of things including, for example, medicines available.
Yes, I'm in the U.S. unfortunately. 😂
My medicines documents do try to cover the world and definitely cover the USA - though often lagging behind reality.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
Often tends to get worse, before better I’ve been told. Hang in there and try and learn from these fine people as well doing your research, and especially paying attention to your symptoms. It’s not the worse idea to document symptomatology against dates and medication changes and whatever other variables you wish add eg lifestyle, dietary, or supplement changes. Ranges tell us about the general population (to a limit), at it will take time to know where in the ranges you are best.
Hang in there. I’m newly diagnosed too and my joint pain, fatigue is much better though not perfect, and my grey hair has reversed. It does get better! 🙏🏽
Ooh! Grey hair reversal! Sounds fantastic! 😁😁😁🤞 thank you so much for your reply. 😊
That's interesting HealthStarDust! One month in to treatment and I have noticed I'm dropping a lot of hair, and they are all white hairs! I'm not very grey yet, just white strips at the temples and a light sprinkling of white hairs, so I did wander what's going to happen next... Will they grow back another colour I wonder?
It’s interesting isn’t? Mine have not returned. The other thing I noticed was I didn’t need to shave my legs very often due to the lack of growth, but now annoyingly there is definitely more growth.
On a post I posted about it the other day, many people had similar, and it was also suggested it could be due to addressing low B12 levels.
I noticed my grey started really ramping up last fall. Right around the time I thought I was having peri-menopause... so I'm sure my thyroid did something to my hair. I've had severe joint pain since I had my son (11)- but it got a lot worse in the fall too. Can't sleep more than 5.5 hours without waking up in excruciating pain. We've already tried a few new mattresses.... nothing helps. Libido is non-existent- that got worse in fall too. Thankfully my ob found the thyroid thing. I feel like a walking zombie with irritability & pain... and now on this levothyroxine, have no desire to do anything I enjoy. That is why I need some support here. Not like me AT ALL. I just want to be my happy, energetic self again! And I'm only on day 8.... 😭😭😫😫😫. Thank you everyone. 🤗🤗🤗 This just feels like it's going to be a long, arduous process. I pray I feel better on the other side of the tunnel. 🙏🙏🙏
“I noticed my grey started really ramping up last fall. Right around the time I thought I was having peri-menopause” Snaps on this too.
Might I suggest binge watching some of your favourite or new tv shows and films? I have found they have been the best distraction during this time. Of course, do what you need to do to heal including sharing on here, but take time out for you and the things that you can do rather than focusing on the the things you can’t.
Here’s some inspiration… I’ve watched the recent episode of Just Like That, and will shortly be watching a film (and probably still dipping in and out of here).
Be kind to yourself xx
I am pretty new to UAThy ... last October.
The experienced team on here and who have posted are amazing.
I think I was lucky and felt much better after 3 months by then 3 weeks on 125 mg. Now on 150 mg.
Starting on 50 mg means you see how your body reacts, some cannot take it.
I cannot take gluten and like you stopped before finding out about thyroid problems.
I believe I am gluten intolerant. It does not show on blood tests but if I have gluten it wipes me out and I get brain fog and fatigue etc. In uk you have to be on gluten for 6 weeks before the blood test.vvv
Be kind to yourself while you heal.
It does take a while. I can remember thinking I was dying. Just give it time. Spoil yourself in the meantime. All the best.
Being in the US you should be able to get full testing without any quibbling from you doc. We also have less hassle having NDT prescribed. Smart Ob/Gyn for checking this for you. If OK with you I can send you some info in a private message.
Patti in AZ
I started on levothyroxine in late February. Kept a very brief diary of my experience. To begin with I felt worse, yes. Incredibly itchy hands at night, swollen hands, tired, extra hungry sometimes and also felt cold. Dry skin. By the end of April I felt much better and most of these symptoms had gone. I'm on 50 Levo and do stick to the same non-lactose brand (Vencamil which I have to split from 100 pills, pharmacist says that's fine). I have gone gluten-free, not sure if that has helped or not. Good luck with it & hope you feel better soon!
Hi,
You are in the start to feel better. Good thing is use B12 it is helpful for good feeling. If something wrong is happened in our live
You must be patient. When you will feel better is impossible to say. Every one is different. Every month you could make blood test and if the test is on bad level, your doses will be changed. To dose which is good for yours body. From my experience the best is make blood test regular and not to say tomorrow I do this 😜. I start from 50mg and now, after few years I use 175mg. My GP changed my dose for 25mg if TSH was still in bad level.
If you are sensitive 😁 maybe you could change brands of levothyroxine.
I received form pharmacies every month different brands. Loooong time I’m feeling very bad.
Now, I use one brand and I feel good.
Good luck in yours way!
Beata
GreenhouseGal Be careful with supplements and tell your doctor if you do take them. I was taking a high dose of B12 (in my multivitamins) and my blood tests showed that my B12 was too high, which causes lots of symptoms and made me feel miserable, on top of issues caused by my TSH being too high. I have hypothyroidism too and my doctor just increased my Levothyroxine and told me to stop B12 immediately.
Does the UK allow for Synthroid instead of Levo? I had a Doc who explained that Synthroid is much more pure, if a synthetic can be pure, than Levo. I'm 65 and switched to Synthroid a few years ago because I read somewhere (pardon the lack of name of book, article, etc.) that it's better for older women to be on Synthroid. Whatever you do, don't let anyone talk you into an anti-anxiety benzodiazapene. Try Holy Basil, or Magnesium supplements to help calm you. I cannot get off of my Benzo's. I was drinking 1 bottle of Chardonnay per night to calm my nerves and the Doctor said that my Benzo would be like "drinking 2 glasses of Chardonnay". She forgot to tell me that they're addictive! Hope that you get the help that you need.
It reads to me that the doctor who explained had a reason for prescribing Synthroid. Do they get a kick-back from the makers?
There is NOTHING that makes Synthroid more pure.
Indeed, its ingredients make it more likely a problem than some other formulations of levothyroxine. *'Synthroid' is just one of many formulations of levothyroxine. (The UK has 'Eltroxin' and 'Vencamil' as brands.)
Acacia is quite commonly a problem. And many do better on lactose-free formulations - even people who appear to have no other issues consuming dairy and lactose products. Some prefer to avoid povidone (also commonly called polyvinylpyrrolidone, polyvidone or just PVP) and talc.
And, in common with many but not all USA levothyroxine products, Synthroid contains colourants in all dosages except 50 micrograms.
ACACIA (UNII: 5C5403N26O)
LACTOSE MONOHYDRATE (UNII: EWQ57Q8I5X)
MAGNESIUM STEARATE (UNII: 70097M6I30)
POVIDONE, UNSPECIFIED (UNII: FZ989GH94E)
TALC (UNII: 7SEV7J4R1U)
SUCROSE (UNII: C151H8M554)
dailymed.nlm.nih.gov/dailym...
I am aware of several who have switched from Synthroid to another make and found they did significantly better.
I am not in a position to advise on USA products. But you can get some information and pointers from my rest of the world document.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
helvella.blogspot.com/p/hel...
Yes. I'll stay on my amneal manufacturer levo until something changes. I want to give it a good try (3 months) before I consider anything else. I'm very sensitive to pharmaceuticals- my body notices everything. 😒😆 Never have I said, "gee. I took that pill and feel nothing..." 🤣😂 even with acetaminophen, which doesn't work on pain for me. I notice the effect it has on me, albeit very mild. So although this levo makes me feel miserable, I was kind of expecting side effects. 🫤🤷♀️ They are just extremely annoying. 😂🤗🤗🤗
Update: feeling a little less tired today!! 🥳 I don't feel like I want to sleep through my workday. Feel a little less depressed too. Like someone opened the blinds a bit in the dark room I've been in, mentally and physically, the past 10 days... 🌞 I hope it's not a fluke thing... 🤞🙏 😁😁😁
TiggerMeAmbassador
Yay 🎉 you've turned a corner... don't overdo it though 🤗
I think "overdo it" is my middle name... but I'll try. 🤣🤣🤣 thank you 🤗💛
I will leave it to those with more experience to talk about dosage, etc. However, you aren’t alone with feeling awful at the start. I was diagnosed three months ago and at the time I had a TSH of 42. I started on 50 mcg and within hours I had terrible muscle and joint pains. The first couple of months brought other difficulties, such as bloating, pins and needles, dry eyes and various other symptoms. I found it hard to keep positive because I was also very depressed. But gradually, with a dose increase to 75 mcg and weekly b12 injections, I found that I was beginning to feel very much better. For most of us, levothyroxine will help. If you can keep that in mind, you should begin to improve very soon. Lastly, and just as important as anything else, I advise exercise of a kind that you enjoy and in amounts that are manageable for YOU
Oh my gosh! Yes! The bloating is intense! 😮 Also, I'm having something my bf and I call the "stabbich". It feels like someone stabs you with a hot needle and it itches INTENSELY. It makes me jump! 😯🤣 I cannot wait to feel better. I found out I have practically no stomach acid as well- so I'm supplementing with ginger, gentian bitters, pepsin and betaine hcl. Already I'm not so "heartburn-y" when I eat. I just feel like so much goes along with thyroid issues.. uggh. Thanks for your response! 😀🤗💛
Update, copied.
Guys!!! Guess what?! As of right now, almost 5 weeks in, my tsh is 0.76! 😮😮😮 (0.45-5.33) how is that possible on 50mcg? I'm excited, nonetheless!! Free t4 is 0.95 (0.61-1.24)... didn't test t3, but I'll be happy to wait a few months on this dose with that tsh! Please advise. 😄 I'm shocked! 😁🤯 Not hashi's, tpo value <1 and range 0-4. If this is optimal, I should feel good soon, right? 🥳💛
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