Thyro

[Mommadez626]

Hello I have been diagnosed with low thyroid my dr. Prescribed me levothyroxine 50 mg I am taking have of that because I am scared of side effects, now that I been taking half for a little over a week I am having muscle pain hot flash and sweating restless legs pain in my throat , it literally feels like I doomed like I'm dying anyone ever feel like this.. can I just stop taking this medication please I'm desperate for help

[greygoose]

You're probably feeling like that because you're only taking half the prescribed dose. The starting dose is 50 mcg for a reason: because if you stat on too low a dose if can make you feel worse rather than better.

Levo is not 'medication' in the normal sense of that word, it's not a drug. It's the thyroid hormone T4. It's thyroid hormone replacement, replacing the hormone that your thyroid can no-longer make enough of, because you cannot live without thyroid hormone, it is essentail for life.

Thyroid hormone replacement does just what it says: it replaces the hormone normally made by the thyroid, it doesn't just top up what your thyroid is making. So, if you start at too low a dose, you can find yourself with less hormone in your system than you had when you started, meaning you are more hypo, and therefore have more symptoms.

And, 50 mcg is only a starter dose, and in the long run will not be enough. The protocol is that you get retested after six weeks on that dose and then increase the dose by 25 mcg, and repeat the process until your symptoms have gone and you feel well. It takes time to get up to your optimal dose. It is not a quick fix.

There are many brands of levo, but in all of them the active ingredient is the same: levothyroxine - aka T4. Hormones do not normally cause side-effects. But what differes from brand to brand is the fillers/exciptients. Some people sometime find that they cannot tolerate some of the fillers. Therefore, if you feel your tablets really don't suit you, the best thing to do is too ask for a change of brand.

So, no, you cannot just stop taking levo. You really need it. Thyroid hormone is needed in sufficient quantities by every single cell in your body to function correctly. So, first of all, try taking the full dose for six weeks, and if it's still making you feel unwell, try asking for a different brand.

[SlowDragon Administrator]

please add your thyroid results from before starting on levothyroxine

You need to get blood tested again 6-8 weeks after taking 50mcg everyday (always taking on empty stomach and only drink water for at least an hour after)

Test early morning and before taking your morning dose of levothyroxine

Likely to need further increase in dose levothyroxine after next test

[Mommadez626 in reply to SlowDragon]

I'm not sure what the readings are supposed to be but looking at my TSH when I first got tested on the 28 th of last month is 10.627 I could handle what I was going through so I went to the emergency room on the 2nd of this month and my TSH is 0.56 I do not understand what these readings mean but here they any more advice would be very much appreciated.. Thank you

[SlowDragon Administrator in reply to Mommadez626]

TSH is the message from pituitary asking thyroid to work

If high that means pituitary is shouting louder for thyroid to make thyroid hormones

TSH over 3 means thyroid is struggling

TSH over 5 on two separate tests and symptoms then dr can start patient on replacement thyroid hormone trial

my TSH when I first got tested on the 28 th of last month is 10.627

TSH over 10 and patient is always started on levothyroxine

so I went to the emergency room on the 2nd of this month and my TSH is 0.56

Had you been taking levothyroxine before this test?

Rapid changes in TSH suggests autoimmune thyroid disease also called Hashimoto’s

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

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)

are you based in U.K.?

You need further testing, not just TSH

Are you male or female and approx age

please add these and the country you live in on your profile

[Mommadez626 in reply to SlowDragon]

No I wasn't taking no medication when I was tested on the 28th , I started taking levothyroxine the following day and than on the 2nd when I went to the emergency room I was like 4 to 5 days in on taking levothyroxine, the emergency room said my thyroid was not low or high , so did they mean that the medication was already bringing up my levels on the second test I'm struggling to understand this.. What is is replacement thyroid home trial? No I'm not in the UK and I am female 49;yrs of age.. please help me understand this, I also called my Dr he didn't return my call so I'm going call again to try and speak to him about this because i didn't take no medication today I'm so scared to take it again 🥺

[Mommadez626 in reply to SlowDragon]

And just a little history on myself about 4 yrs ago I had hyperthyroidism I took medication for it and I brought it down to low which was than hypothyroidism I was hospitalized and they were giving me levothyroxine to bring up and when I left the hospital I started to feel bad again I stopped taking the levothyroxine and let my thyroid come up on its own and I was ok for 4:yrs and now out of nowhere my Dr said I now have hypothyroidism.

[SlowDragon Administrator in reply to Mommadez626]

my TSH when I first got tested on the 28 th of last month is 10.627

so I went to the emergency room on the 2nd of this month and my TSH is 0.56

These are dramatically different

Double check results are correct

Get another test

Suggest you see GP

Test early morning

[Mommadez626 in reply to SlowDragon]

That's what I was trying to figure out the hospital didn't really explain much to me , it's like they just wanted to rush me out 🥺 when you say dramatically different , did my thyroid on the second test go up or down that is what I'm trying to figure out but I don't know how to read the levels😔

[SlowDragon Administrator in reply to Mommadez626]

I had hyperthyroidism I took medication for it and I brought it down to low which was than hypothyroidism I was hospitalized and they were giving me levothyroxine to bring up and when I left the hospital I started to feel bad again I stopped taking the levothyroxine and let my thyroid come up on its own

What was the medication that you took ….Carbimazole daily or did you have RAI - where you took a pill once and it destroyed your thyroid

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune - Hashimoto’s

Hyperthyroid disease is usually autoimmune Graves’ disease confirmed by testing TSI or Trab antibodies

It’s possible, but unusual, to have Graves’ disease and Hashimoto’s

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

If your TSH is now low, your first test may have been an error or if first test was genuine high TSH….this suggests thyroid levels are swinging up and down…..typical of early stage Hashimoto’s

You need other tests - Ft4 and Ft3, thyroid antibodies and all four vitamins

[Mommadez626 in reply to SlowDragon]

The medication I was taking when I got hospitalized was methimazole and since I wasn't told to stop taking it I brought my thyroid down so low they to admit me.. I was taking because at that time my thyroid was high I had hyperthyroidism .. And now about 3 or 4 yrs later my thyroid is low🥺I'm so scared

[SlowDragon Administrator in reply to Mommadez626]

Get further testing

TSH, Ft4 and Ft3

Thyroid antibodies

TPO and TG for Hashimoto’s or Graves’ disease

TSI or Trab for Graves’ disease

Vitamin D, folate, B12 and ferritin

Test early morning

Restless legs suggests low iron/ferritin

High TSH and low Ft4/Ft3 = hypo

Low TSH and high Ft4/Ft3 = hyper

Los TSH and LOW Ft4/Ft3 = central hypothyroid - pituitary not responding to low Ft4/Ft3

low vitamin levels, especially low iron/ferritin tend to lower TSH

[HealthStarDust]

Posts like this remind me of how different thyroid care is compared to other parts of the body.

For example, when someone starts psychotropics they may expect to have a similar settling period. During that period they may be offered other medications to provide relief like short term anti anxiety medications. I wish it was like that for thyroid care!

Mommadez626 Your dose could be too low, too high, the brand or formulation may not suit you, you may need to add T3 or adrenal support, optimise vitamins and minerals, support your sex hormones… as you can tell the list of reasons why you are feeling unwell is endless (though what I’ve cited is a very basic summary of the dominant reasons given in this forum).

My recommendation is speak to your GP to see if they have any suggestions, especially if they can you give something else to ‘ride it out’.

Welcome to the thyroid gamble. We are all in it to win it!

[greygoose in reply to HealthStarDust]

That's very true! They could at least give pain killers to help with the pain. Also, they should test nutrients: vit D, vit B12, folate and ferritin, which could be deficient and causing symptoms. Restless Leg Syndrome is often caused by low ferritin. Nutrients ought to be tested as a matter of course, but doctors just don't understand their importance.

[HealthStarDust in reply to greygoose]

Isn’t it just?!

In some ways I am fortunate to have experienced all kinds of ‘care’ and ‘treatment’ to identify what could help short term, and my GPs are supportive of this (though what could help is limited due to adverse reactions).

Thankfully, my GP many others check key nutrients regularly or as requested. Of course, we shouldn’t rely on them interpret the results!

It such a shame others don’t have this experience as I wholeheartedly agree that nutrients should be tested as a matter of course, as well as GPs or the requester of the nutrient tests better educated to interpret results.

[greygoose in reply to HealthStarDust]

They definitely need to be better educated, that's for sure!

[Mommadez626 in reply to greygoose]

Thank you so much for replying at the I am taking fish oil and vitamin d I don't know if that would help me out any?

[greygoose in reply to Mommadez626]

Depends if you need it or not. Have your nutrients been tested: vit D, vit B12, folate and ferritin? Taking supplements is only going to help you if you need them, more is never better. And if you're going to take them, you need to take their cofactors, too. With vit D you need to take magnesium and vit K2-MK7, otherwise the vit D won't do anything at all.

[Mommadez626 in reply to greygoose]

Yes I do need the fish oil because my cholesterol and triglycerides are high . So in order for vitamin D to work can I just take the magnesium or do I have to take all that you stated in order for it to work,I never knew that vitamin prescribed alone won't help any.

[Mommadez626 in reply to greygoose]

I truly don't understand why am I feeling so bad after taking the levothyroxine I just felt a little tired when I found out my thyroid was low, but after a few days of the medication I feel unbelievably bad😰

[greygoose in reply to Mommadez626]

Well, I did explain in my first comment, top of the page, the possible reasons why you're feeling so bad. You have to know how it all works before you can understand it. It's not something you can guess at. But I'm pretty sure the first step to feeling better is to start taking the full dose.

[Mommadez626 in reply to greygoose]

Your right I really don't understand, I know I have learn more about this ,it's hard I feel hopeless but I can't live like either thank you so much for replying to me again.

[greygoose in reply to Mommadez626]

It's not hopeless, you can learn. Keep reading and asking questions and you'll soon know a lot more than your doctor! Like the rest of us. None of us were born with this knowledge, we had to learn in order to survive.

[Mommadez626 in reply to greygoose]

Right so true I feel a little awkward coming on here knowing nothing, Thank you for reassuring me it really feels so nice to have ppl like you reply to me .

[Sleepman]

It is hard at the start of treatment as your body is not working in random ways and not everyone has same symptoms. It could be just low thyroid stuff.

I would go back to doctor , if adrenals or other issue as per Healthstardust you may need them sorting first.

Find out if you are autoimmune type, check they have tested antibodies. NHS will test once. If AI type your thyroid is being attacked and can release stores while glands are dying off.

Vitamin D, B12 ,Folate /iron levels need testing.Get these done/planned in. Post your levels to get advice ... you need them higher now your hypo.

If not on doctors app, get this done so you have access to blood results.

Most have a simple time with hypothyroid but some struggle and this is a lot of what you read on this forum. Hopefully yours ends up being simple but if not this forum will help you.

It is going to take a while (months) whatever happens. It is frustratingly slow to treat.

[Chrysali]

I want to say that I feel for you because I know how hard it is in the beginning. After my diagnosis of hypothyroidism, the doctor prescribed a starter dose of 50mcg. I took my first tablet, feeling very positive and hopeful. The very next morning, I needed help to get out of bed, as every part of me ached. The doctor spoke to me as if I were going out of my mind and said that it was not possible to experience such a reaction after just one dose . I know better- I know my body and I have learned that it is very sensitive to medications. Anyway, things improved within the following weeks and I suppose I got used to Levo.

A bit more than a year on, I am still aiming for my perfect dose!

Know that things can get better and keep with this forum. The people on it have helped me much more than the doctors I have consulted!

[Mommadez626 in reply to Chrysali]

Thank you so much I felt just like you, like I was losing my mind it is the worst feeling ever I'm so glad to hear you are doing better ... Yes everyone on here is so nice I actually feel like ppl care for once.

[Chrysali in reply to Mommadez626]

Don’t lose faith in your ability to understand your body. Doctors would have us take lots of medicines to deal with symptoms, rather than focusing on our thyroid health, which is so often(not in every instance, of course)the reason for our pain