Did anyone have these symptoms on Synthroid - Thyroid UK

Thyroid UK

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Did anyone have these symptoms on Synthroid

mikkymouse profile image

Here are a list of my symptoms. Fatigue, dizzy or light headed, mood swings, heat intolerance, night sweats, insomnia, weak legs, general feeling of unwell. I cry for no reason a lot and shortness of breath but that might be heart related.

I am hoping so badly that NHT might relieve some if not all of these. I’m just so med intolerant and this is now the only one I take (Synthroid)

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32 Replies
SeasideSusie profile image
SeasideSusieAdministrator

Sometimes it's the excipients in the tablet (fillers) that cause side effects. It's worth trying another brand, check information on the excipients of course.

Don't forget that NDT also has excipients, tablets can't be formed without them.

Have you had nutrient levels tested - Vit D, B12, folate and ferritin?

Yes and they are all fine. I tried another brand and it made no difference. You may be right though because all meds hate me. I will give Thyroid a try and see what happens.

Thanks.

shaws profile image
shawsAdministrator in reply to mikkymouse

I have read that if we take one antihistamine tablet one hour before thyroid hormones and if symptoms resolve, we should try another make/brand.

mikkymouse profile image
mikkymouse in reply to shaws

Thanks but that sounds a bit weird to me.

humanbean profile image
humanbean in reply to mikkymouse

It isn't weird.

If you have an allergy or an intolerance to an ingredient in a pill of any kind then taking an anti-histamine an hour before you take the problem pill might improve your tolerance of it.

If you do get a benefit then you have to try and work out which ingredient is the one causing you problems, (that's the hard bit!) and then you have to find an alternative medicine without that ingredient.

Lactose, mannitol, and acacia are common ingredients which cause intolerance problems.

mikkymouse profile image
mikkymouse in reply to humanbean

Sorry. You’re right. I do remember now that when I was given an antibiotic in hospital I couldn’t stop itching and they gave me one. It was the first time I had ever had a reaction to a med like that.

Once again, sorry.

I do want to add that my symptoms are making my life extremely hard. I can barely function and can’t do much at all. I’m just existing. It had to be more than a simple reaction.

shaws profile image
shawsAdministrator in reply to mikkymouse

Synthroid might not suit you. Even though most medical professionals prescribe it (Levothyroxine) many on this forum feel much better when some T3 is added to it.

Have you had a Full Thyroid Function Test? which is:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies (if you've not had antbodies checked in the past).

The blood draw should be at the earliest, fasting (you can drink water) and allow a gap of 24 hours between your last dose of Synthroid and the test and take afterwards.

Put the results, with the ranges, onto a new post for comments.

You could also test B12, Vit D, iron, ferritin and folate at the same time as deficiencies can also make us feel awful.

mikkymouse profile image
mikkymouse in reply to shaws

Thanks Shaws. I’m curious. What does administrator mean here?

I just got a standing order for T3 and T4. I’m waiting for a call from a naturopath who I hope will prescribe Thyroid for me. She’s calling in an hour for a phone consultation. I’ve seen her before but she lives an hour away and, well, long story.

Fingers crossed.

Hi mikkymouse I have no answers but I just wanted to say I have all those symptoms too. It’s unbearable & frightening, but you’re not alone xx

Hi there,

Thanks for answering. Nice to know you aren’t alone but hate to think of others suffering too.

What is your story. Are you on a med like Synthroid? Have you tried a natural one? Are your numbers in range.

I went to my GP today and he flatly refused to give me a prescription for a natural one. I forget the abbreviation lol. Too lazy to read through posts to find it either. Now I’m going to look for a naturopath that can help. At least my dr wrote me a standing order for a year to get my numbers checked every month.

Take care.

Sheila

Hi Sheila,

I’m so sorry your GP was unhelpful. I’m yet to find one who is much help.

I’m 35 & have been on levothyroxine for 10 years and been ill for about 15. Although I had a lull of symptoms in the middle of that time I’ve been in a flare of symptoms & a thyroid imbalance again for the last 2.5 years. (have recently upped my levothyroxine again & in the dreaded wait and see at the moment). My numbers have been in and out of range during this time.

I found out I also have pernicious anaemia & low ferritin & my other mineral ranges aren’t good, I recently saw a private endocrinologist who thinks I may have malabsorption but my celiac bloods keep coming back clear so it’s all a bit confusing at the moment.

I hope so much you manage to get hold of some NDT or T3 and that it makes a difference for you. I’m at a point now that I’m thinking of having to look in to the same but trying to get the energy to fight Drs is so hard isn’t it.

Sending best wishes & positive thoughts xx

Hi ? Thanks for replying. Can I ask where you live? I’m in Canada as you may know. Are you in England?

I feel so bad that you have had to suffer for so long. At least I’ve only had five years of it.

How much med do you take? I’m in 75 mg. We don’t use grains over here but I think a grain is 60. Roughly. They kept upping my dose and I only got worse.

I’m sure you’ve read that our mineral counts and also iron need to be good. Maybe that’s part of your problem???

I am seeing the naturopath this afternoon. I have my fingers and toes crossed that I get NDT. Who knows It might be the way you have to go. I understand though what you mean about fighting with drs. If I get the prescription I’ll find out soon enough how it works.

Take care xxx

Sheila

No problem.

I’m in the UK yes.

I take 75mcg & 100mcg of levothyroxine alternate days at the moment. Although as my levothyroxine has been upped recently I’m feeling worse and worse each day.

Yes I definitely think minerals play a massive part, have just sent off a magnesium test to see what that’s doing!

(I think grains applies to NDT.)

Good luck with the naturopath I hope you manage to get things sorted.

Take care L xx

Its getting so confusing ctrying to keep everyone on here straight. Can’t remember what I’ve told to who. Did I say that the higher they raised my dose the worse I felt. It was making me hyper instead of hypo. My hair was falling out at the rate of knots. That is when I knew there was a big problem.

Sheila

I think I might be having the same problem Sheila I’m shaking like a leaf, anxiety through the roof. Definitely think thyroxine is to blame!

Don’t worry it is confusing keeping track of everyone!

Xx

I also had the bad shaking and tons of anxiety but it seems to have lessened. It’s my light head and general feeling of unwell that I hate.

Exactly the same, I genuinely feel like I’m dying and it’s utterly terrifying, the vertigo & weakness is definitely the worst thing.

I’m so sorry you’re going through this too :( xx

Hi there. I had pm you. I was wondering if you got it. I hope it was ok to do that. I didn’t get any satisfaction at the naturopath but all hope isnt gone. Turns out she couldn’t prescribe the med I wanted but had put me on to someone who MIGHT!! Why isn’t life simple. I called to get the pharmacy phone number for her to fax the prescription to and they put me on hold and finally after over ten minutes I hung up. The girl at the desk today promised she would fax my file right away to the dr who may help me. Never did it.

It’s me again! Had anyone suggested the addition of T3 (Cytomel here on Canada) to your regimen? I had these symptoms when I was not given T3 - and you may not be converting. Latest bloods will be helpful here. How did doctors visit go?

Hi again. It went as I expected at the dr. He said NO just like I expected him to. There was no budging him. He told me several of his patients had gone on it and it didn’t help.

I was upset but not surprised. I realize ( I think) that it’s not me lacking something. It’s the actual pill itself that is making me sick. It starts about an hour or so after taking it and by evening I’m feeling quite a bit better. Maybe it is the fillers. Who knows. I feel that my body just hates chemicals. I took Celebrex for three nights a couple of days ago and was so sick by the third day I had to stay in bed all day which I hate. I didn’t take Synthroid yesterday as an experiment and I felt a lot better. Now to pray that the natural stuff won’t affect me. I won’t know until I try it will I.

I’m going to look for a naturopath that knows about thyroid. Hope I find one by this weekend. My husband is going camping for about ten days and I want to get the ball rolling before he leaves. He doesn’t want to leave me if I’m bad but he NEEDS to go. He has looked after me for five full years now and is burning out. I was diagnosed with breast cancer two years ago this month and it was really hard on both of us. That is another example of meds hating me. Long story short, I was hospitalized four times due to the chemo. For up to a week at a time. End of that though. Take care

Sheila

Oh Shelia,

You have had such a rough time. It is so difficult when you have issues with meds - and I have similar problems with dosing and side effects. I really understand how you feel - and saying a prayer for you that you get relief.

You will get your NDT meds one way or another - and how disappointing that your MD couldn’t see clear to giving you an Rx given your other health problems. And I am sorry to hear about your cancer as well - it’s a lot al at once. No wonder you are at your wits end.

This is very easy for me to say, I know - but take it one day at a time - and you can’t do more than that. As others on this site have advised me at difficult times, be kind to yourself and take time as you need to rest. Thyroid is very sensitive to rest - and it really does help if you are able.

Sending you all the best - take good care and sending you a huge hug 🤗.

Awh! That is so nice of you. I am a firm believer in prayer so I would be happy with one from you.

What I find hard about this site is trying to remember everyone and their story.

I am on line right now trying to find a naturopath that would be willing to even give me one months supply just to see my reaction. My husband suggested right now that I skip the Synthroid for a few days and see what happens. I agree seeing as I think it’s the actual med itself.

I wonder if Amazon has the Thyroid. Probably not because if the shortage. They are supposed to be releasing more in June and July

Getting close to your bedtime I guess. Are you three hours ahead?

😴sleep tight

.

Getting ready for bed 😴- don’t worry about remembering everybody’s stories - just focus on getting yourself better. No one on this forum will mind - we all have enough our plates!

Be careful about stopping any meds quickly - if you miss a day or two it won’t hurt you - but I would personally wait until you have something to replace it with . If you go too long without anything you run the risk of other problems - and you don’t need any more at this point. You are taking a hormone replacement, not a drug.

I didn’t know that NDT was out of stock . Until it comes back in stock, have you thought about Tirosint? It supposedly has none of the same fillers and other extra ingredients as Synthroid but is also levothyroxine. I know how anxious you are to get off Synthroid and believe me, I am with you . I just don’t want you to become any more ill - just my two cents for what they are worth - and since we don’t have pennies anymore in Canada - there you go ! 😉

Hang in there, Sheila - you are moving in the right direction and you will feel better soon. 🙏🏻

Thanks. Do you ever tell your name? Just wondering.

I am with you in what you have to say about stopping. I thought of that. I would only do no more than three days. I need to take a stress test on Friday and if I feel like I normally do I wouldn’t be able to do it. I was so bad today. Couldn’t believe it. The heat didn’t help. Around 28 and I’m no good in the heat. I love the sun though.

I’m hoping to possibly see the naturopath tomorrow. If not the on Saturday. Cross my fingers again.

It’s the Erfa Thyroid that has a shortage but I managed to track down some at Walmart. It sure more expensive that Synthroid. though. $75 for 100. Oh well. I’m worth it lol.

Sweet dreams.

You are worth it - keeping my fingers crossed you get your appt fast!

Hi ( I think of you as Elena. Not sure why lol. )

I go this afternoon. I’ll let you know what happens. Fingers and toes crossed now.

You can call me Elena! I like that name. ☺️ good luck today

Thanks Elena lol. That is the middle name of my Cuban daughter-in-law. I think it might be Greek too.

I’ll keep you informed how it went.

Have you felt like crap the whole time you've been on Synthroid, or has the onset of these symptoms been recent? You are describing hypothyroid symptoms, and it sucks to be treated and not recover.

Synthroid, generic levothyroxine, DTE, NDT, Cytomel, and liothyronine sodium are all thyroid hormones and they act through gene transcription. It seems that epigenetic changes occur during the use of these hormones, causing them to sometimes act on the body differently over time. Since what you're describing are common hypothyroid symptoms, this suggests the possibility that you're no longer converting it as well (assuming you were happy for years prior). If you're looking at moving to a natural dessicated thyroid product, you might find that works out for you. It could be that you simply need more T3 and less T4. Swapping out products can be messy, so start low to avoid overdoing it. Racing heart is not good. A grain of DTE (about 65 mg) should contain 38 mcg of T4 and 9 mcg of T3, so if you've taken 50 mcg of Synthroid, you'd replace it with one grain.

I think one of your other posts mentioned the possibility of cutting back the Synthroid. Excellent idea. Because the T4 hormone has a nine-day half life, you could actually go for a week without the wheels falling off. If you felt better within the first few days that would give you a clue. And prepare you for moving to the dessicated product.

Wishing you good results.

mikkymouse profile image
mikkymouse in reply to RockyPath

Thanks for replying. Yours is one of the more helpful responses I’ve got. I felt fine for years on Synthroid and then about five years ago my body changed and now I can’t tolerate most meds.

I am currently taking 75 mg of the med. I have an appointment this afternoon to see a naturopath who I hope will prescribe NDT. Actually I don’t just hope. I pray it will lol. I’m so tired of feeling awful. Five years is a long time to suffer.

Thanks again.

mikkymouse profile image
mikkymouse in reply to RockyPath

PS I was going to say I am tired of feeling like crap but then thought maybe that doesn’t sound polite then I saw you did LOL One thing I don’t like about sites like this is you don’t have a clue about the person you are writing to. Are they old and prudish or young and easy going etc. You get my point. I don’t even know if you are allowed to say your name. I don’t really give a darn if someone in England (I’m Canadian) knows my name or where I live.

Just saying.

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