Levothyroxine: I was in Levothyroxine for... - Thyroid UK

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Levothyroxine

Ladybex
Ladybex

I was in Levothyroxine for 2 months after a blood test showed I had an under active thyroid... This medication made me quite ill and I stopped taking it 1 st October after another blood test revealed I was borderline. It took 6 weeks to get out of my system. I was quite ill in that time. Experiencing night fevers and feeling very unwell. I am waiting to see a Rheumatologist at the end of this month and find out what is wrong. But, only from the last few days I have started to feel normal again.

37 Replies

What type of levothyroxine were your prescribed and are you in the UK?

Ladybex
Ladybex in reply to Nanaedake

25 ... yes I’m in UK

The fact that results showed an improvement from being underactive to borderline suggests the medication may have helped but the problem may lie in the brand and that is not suiting you. Fillers can give us bad allergic reactions. Some find that TEVA upsets them but others are fine with it. You may well be feeling better as something has made you feel rough and you are no long taking it so be interesting to see if levels are falling andcyou again feel hypo. So it could be something simple like needing to try a brand change but look out for starting to feel hypo again. If your expert has no ideas then suggest trying a different brand

Ladybex
Ladybex in reply to silverfox7

I was told this silver fox that some people need a different brand of levo ...

Hi Ladybex, what dose did you start on? It may be that a small dose suppressed your own production of thyroid hormone and made you feel worse. You may have needed a higher dose b

Ladybex
Ladybex in reply to Aurealis

Hi there I was on 25 but after another blood test 2 months later revealed I didn’t need it as I was borderline. The Levo made me quite ill though causing awful night fevers, gritty eyes ... waiting to see Rheumatologist ...

Hidden
Hidden in reply to Ladybex

"Borderline". HA!!! What were the actual levels?

I have never been worse than "Subclinical" with a TSH of just under 6 and T4 within range (T3 never tested). Even when TSH got down within range at just under 3 I didn't feel that good. Thankfully there was a sympathetic and enlightened pharmacist in the practice who gave me an increase anyway. It helps to make a list of your symptoms and how they affect your life and give it to the doctor or whoever. I've only ever seen nurses (one very good one who listens, one who doesn't listen) and a lovely practice pharmacist who also listens. Feel very blessed!

Aurealis
Aurealis in reply to Ladybex

Yes you do feel worse if your thyroid hormone production decreases as a result of your body recognising that you’ve taken some Levothyroxine. So the dose has to be increased until you’re taking the amount your body needs. Your gp may have been surprised at how poorly you’d become or alarmed that your tsh had gone very low - for some of us, that is what happens. Some GPs do suggest stopping it for a bit, but the ones that know what they’re doing don’t. You may need to see a different gp. Or perhaps the rheumatologist will direct GP to treat thyroid?

That proves you did need it asitsmade a difference but it's not pushed you high enough yet. Always ask for a printout of your resuktsxand ranges then post do we can help you. Some doctors think that once on medication it's job done but it's only the start. Tests should be repeated every 6 weeks till you are in the correct dose for you. 25 is now only given to the elderly or anyone with a known heart condition but 50 is the usual starter dose. We can only test every 6 weeks as it takes that time for each new dose to get fully into your system so it takes time to find what isxright for you. So keep posting and testing and we can help you on your journey. It sounds from what you have replied above that you have now entered the range for FT4 but its where in the range that is important. Usually its around the top third as a rough guide for FT4.

Ladybex
Ladybex in reply to silverfox7

Dosnt apply to me silver fox .. as I stated I had later blood tests revealing I didn’t need the Levo. Now I wait to see Consultant ...

Of course it applies to you. ;-) You have a thyroid and you are hypo. That’s too bad your doctor mistreated you and that you don’t understand successful treatment. Should have switched doctors and been prescribed the correct dosage, not stopped meds.

I’m sorry to hear that you were under medicated and treated unfairly. Successful treatment is not “borderline”. Successful treatment is suppressed TSH below 1.0 (usually much lower in order to get FT3 and FT4 were they should be), FT3 and FT4 in optimal range, and minimal or no symptoms. Optimal FT3 and FT4 are over 50% of range, but closer to 75%.

What are your FT3, FT4, TSH, and the two thyroid antibodies, TPO and TG, and what are the lab ranges?

Unfortunately, doctor didn’t know the prescribing protocol. Starting dose is 50 mcg, then retesting every 6 weeks and increasing meds every 6 weeks until your bloods reach the above levels and until you have no symptoms.

The brand was not the problem, it was the inadequate dose of 25 mcg. That’s the problem. No one starts out at 25 mcg unless they are elderly or sickly. And, if they were, their dosage would be increased after 6 week testing. Why didn’t you test at 6 weeks?

That’s too bad your doctor under medicated you. Why on earth can’t some of these doctors read the prescribing protocol for medications that they prescribe? It’s right there in their in their online or printed drug book, ior on the manufacturers website. It take 6 weeks for full therapeutic effects of any current dose, but you were prescribed the wrong dose.

Now you need to find a competent doctor who knows how to prescribe meds and treat thyroid disease. This doctor will follow prescribing protocol, as mentioned above.

You might feel ok now, but will not feel well for long. You were hypo to start. You were under medicated and that messed with your thyroid hormone production. That’s why you felt worse. You are still hypo and untreated. Soon you will feel even worse.

silverfox7
silverfox7 in reply to Ladybex

Sorry I must have understood what you were saying as I interpreted that your levels were correct so not needing any medication was that the dose you had been given had worked and brought your levels up to normal and therefore you would be continuing on the dose which had helped.

So are you saying you were wrongly medicated because you haven't a thyroid problem? So why are you to see a consultant or is this for a different diagnosis?

My original reply was that you may benefit from a different brand if getting side effects.

bantam12
bantam12 in reply to Ladybex

When taking Levo blood tests cannot show "I didn't need the Levo" they show the Levo is working and results are normalising, you just weren't on a high enough dose.

No, borderline in NHS-speak means hypothyroid is any other country and borderline when on medication (it doesn't leave the system immediately) means undermedicated. How long after your last dose was the blood test?

Ladybex
Ladybex in reply to silverfox7

Also ... most if the side effects from Levo was what I was having ...

You had side effects because you were under medicated. 25 mcg is an in adequate dose.

Yes, you needed the Levo. It was just too low a dose. You are still hypo and low thyroid. Borderline means you are still too low. It dose not mean you’ve been successfully treated.

Since you stopped the meds, you are no longer even borderline. Your thyroid will go back to not producing enough thyroid hormones on its own.

I hope you can find a doctor who knows how to treat thyroid disease correctly soon, before you become too hypo again.

Thank you ... that’s why I’m seeing a consultant 😊

You’re welcome. :-) I’m not sure what a consultant is or why you’d see one instead of a doctor. What kind of a consultant? Are they able to order labs and prescribe meds?

MaisieGray
MaisieGray in reply to Ladybex

From what you've written, you don't need to see a consultant but needed to have a Dr that understands even the most basic principles of thyroid treatment. If you start treatment because your symptoms and/or blood tests indicate you are hypothyroid, you need to start at the right starting dose, and with regular 4-6 wkly blood tests, adjust that dose upwards as required until you are optimally medicated. Starting too low and not adjusting upwards in that timely way can make you feel poorly, even worse than before you started treatment. But It doesn't mean that the treatment is bad or wrong, or that you've gone from being hypothyroid to borderline, it means you've been ill advised and your condition inadequately treated. The aim of treatment is to make you euthyroid ie symptom-free, with hormone levels that are optimal for you. That your blood tests showed you allegedly & wrongly borderline was simply your treatment working but you weren't yet where you needed to be.

Bunnyjean
Bunnyjean in reply to Ladybex

After I had my thyroid removed I was put on Levo for the first time and after 8 months I was feeling really ill the only way I got better was to join this site and listen to the informed people who made me well again. GP's and Endos were useless. You could be under medicated or need to change the Brand.

It would be a good idea to get thyroid blood tests done and post thew results on here with the ranges.

SlowDragon
SlowDragonAdministrator

When taking Levothyroxine the blood test result SHOULD bring test results into normal range

Standard starter dose is 50mcgs, not 25mcg.

25mcg is often too small a dose and can make people feel worse as it's enough to turn your own thyroid hormone production down but not enough replacement hormone.

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

Teva brand of Levothyroxine badly upsets many people

Many of your symptoms sound like low vitamin levels, these are extremely common when hypothyroid

Night sweats can be low B12

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Ask GP to test thyroid antibodies and vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

You are being sent to see a rheumatologist, I'm not sure that they are going to help you much. You have already been diagnosed as hypothyroid (otherwise you would not have been given any Levothyroxine at all).

Here is what I have found: I too was started on too low a dose and kept there too long. I felt a few days of improvement at the start. Then felt worse and worse. I found that if I didn't take it for 1 day a week (as I was stupidly told to do by my doctor) I felt better on that day. But if I didn't take it for 2 or 3 days in a row I felt worse. Once I got to a level of dosage that was more suitable, although still not perfect, I did start to feel a lot better in my head and mental outlook. I had a nasty reaction from the 1 week I took the Teva brand. I now have it on my notes that I must not be prescribed that brand again.

It sounds to me like you don't understand the condition you have been diagnosed with. You don't take the medication until your blood results are "borderline or fine" and then stop. This is a medication for life. You are not taking a tablet to "cure" something like you would an antibiotic for an infection. This is a hormone replacement. Once your body slows down on hormone production, it won't restart. You need the medication, but you need the right amount of it.

Can you go back to the surgery and see a different GP there? Can you book a double appointment to give you longer to talk to them? I can do that, but I'm not sure if that is widely available. Tell the receptionist that you have a lot of questions and need time with the GP to decide what is best. Then explain to the GP what you have told us. That you had a reaction, felt worse but were started on too low a dose, and if you were given the Teva brand say that you have discovered a lot of people have bad reactions to the brand and you would like to try something else. The aim of your appointment will be to come away with a new prescription for 50mcg Levothyroxine (not Teva brand) and to take it for 6 weeks and then return for a blood test to see how you are doing.

At the same time ask your GP to test your vitamin D, Vitamin B12 and to run a full iron panel for you.

So far you haven't given yourself a chance with this. Go to Amazon and search for books about hypothyroidism and if you find one you like the sound of, buy it and read it so that you understand more about the condition and how it will affect you over time.

A popular book that explains the thyroid is a book by Dr Peatfield, many of us have read it to get a handle on what is going on. You need this knowledge to tackle the GPs because they are taught very little at medical school (much of which is now out of date) about thyroid conditions and the effective management of it when things go wrong.

Endo specialists commonly "major" in diabetes and fertility issues with thyroid problems rather sadly tacked onto the end. There are a few very knowledgeable endos in thyroid issues but sadly are rather few and far between and guidelines can hamper the way you should be treated, which is why many on here go it alone.

Here's a link a link to that book I was talking about:

amazon.co.uk/Your-Thyroid-H...

A consultant knows more than a GP ...

Aurealis
Aurealis in reply to Ladybex

Yes Ladybex they do know more about their specialist field, but most rheumatologists won’t know much about thyroid because it’s endocrinologists that deal with thyroid. I imagine all this advice is a bit much if you’re not feeling well. Try your rheumatologist but you may need to follow some of the advice above about revisiting a gp if rheumatologist doesn’t improve your health. Good luck.

You are seeing a rheumatologist for thyroid disease? You mentioned gritty eyes. Do you suspect you have a rheumatoid disease, in addition to your thyroid disease? Sjogren Syndrome is a rheumatic autoimmune disease that causes dry eyes and other symptoms, and rheumatologists treat this disease and other rheumatic diseases. Rheumatologists diagnose and treat various autoimmune diseases, but Hashimoto's is not one of them (did you have thyroid antibodies tested?). If you're seeing a rheumatologist to ask about your thyroid disease, don't expect to get correct advice about your thyroid disease from a rheumatologist. Maybe that's not why you're seeing one? Expect to get the wrong advice about thyroid, since thyroid is not their specialty. Perhaps they will be able to refer you to a good doctor who is knowledgeable about thyroid disease and the possibility that you have Hashimoto's. Either way, I hope you find out the source of your eye problems and other symptoms, and I hope you find a good doctor to treat your thyroid disease.

:-)

Thank you ... my symptoms were caused by wrong medication so waiting to see a consultant now ...

Wrong medication? LOL, uh, no. :-) You have low thyroid, hypothyroidism, and maybe Hashimoto's. What do you think is the correct medication and the correct starting dosage for treatment for this disease? You have three choices: Levothyroxine (T4), Liothyronine (T3), a combo of the two, or NDT, which contains a combo of the two. Liothyronine is the correct medication for your low thyroid or hypothyroidism, which is possibly autoimmune AKA Hashimoto's, but your starting dose was wrong. The starting dosage certainly is not 25 mcg. It's 50 mcg. What was wrong was your 25 mcg dosage, not the medication itself. You were under medicated. "BORDERLINE" means unsuccessful treatment and that you were not treated correctly. Euthyroid (restoring your thyroid to normal, no symptoms and optimal thyroid hormone levels) means successful treatment. You were under medicated, so you were not euthyroid. Your doctor didn't know what he she was doing. You might possibly need to add Liothyronine (T3), but you haven't posted your FT3, FT4, and TSH results plus lab ranges, so that is an unknown.

Regarding the correct medication and the options, it all depends upon your blood test results. Some people only need to take T4. Some people do not convert T4 into T3 correctly, so they need T4 and T3. Some people choose to take NDT, which contains both T4 and T3. What you take and what your dosage is all depends upon the results of running the correct thyroid tests (FT3, FT4, TSH, plus antibodies TPO and TG to determine if you have Hashi's) and your symptoms.

It's all been explained by other posters above, too. If you spend some time on this site, you will find that there is a wealth of information regarding how to properly diagnose and treat thyroid disease, as well as many other diseases.

:-)

LOL ... been told it was wrong and waiting to see Consultant ???

Who told you that Levo was wrong? Did this wise person also mention that you were started on the wrong dose and that you were under medicated? If this person told you that Levo was the wrong medication, what are they saying is the "right" medication and what exactly did they base their opinion upon? You have four choices: T4, T3, a combo of T4 and T3, or NDT. Whichever one that your blood results and symptoms conclude is the right choice, it must be started on the correct dosage. If you want to feel great and have no symptoms, blood tests must be done every 6 weeks and meds must be adjusted at 6 week intervals. You keep retesting and keep adjusting meds for as long as it takes for you to feel great and to have no symptoms. It's that simple.

On the other hand, if you don't want to feel great and have no symptoms, just follow the wrong protocol. There is no grey or "borderline" in proper thyroid disease treatment and management of the disease.

It's not hard to find out the medications that are used to treat hypothyroidism, or what the correct starting dosage is.

That consultant is a rheumatologist who doesn't specialize in thyroid disease, or is the "consultant" someone else?

:-)

Have you heard of misdiagnosed ?

You were "low thyroid", then "borderline" based on blood tests. What misdiagnosis?? You are hypothyroid. You can have Sjogren Syndrome or some other autoimmune disease and still be hypothyroid. If you have another autoimmune disease, your chance of having Hashimoto's greatly increases.

Two months ago you posted about seeing an "autommune consultant" (what is a consultant??) for possibly Sjogren's. Did you ever actually see that "consultant" and get the proper blood tests for Sjogren's? What were the results? You said that you'd been diagnosed with under active thyroid back then, but you made the conclusion on your own through your own research that you might have Sjogren's. These are two separate diseases. You can actually have both at the same time, as well as have additional diseases at the same time.

Can you post your series of blood results and the lab ranges? I don't think you ever answered the question about if you have autoimmune Hashimoto's.

What you experienced by feeling worse while on too low of a dose is what happens when you are not on a sufficient enough dose to adequately replace your thyroid hormones. Then once you stop taking that inadequate dose, your thyroid hormones will temporarily surge and you might feel better. It is temporary, so hold on for the roller coaster ride once your thyroid is too exhausted to produce enough thyroid hormones on it's own (again) if you choose to not get it treated correctly. ;-)

Hello

My dentist suggested that I might have Sjogrens Syndrome. I was with no saliva, dry gritty eyes, etc. and having checked out the website of the society, thought I had confirmed his suspicions. My doctor referred me to rheumatology, the lip biopsy was negative but

low ferritin was flagged up on the extensive blood tests undertaken. The rheumatologists suggested that I get my thyroid problems sorted out - though never actually wrote this in his conclusion letter.

My situation is very different from yours, I am without a thyroid, having had RAI for Graves

Disease in 2005. My last 4-5 years of illness, are I believe down to this barbaric treatment and the mismanagement of my health issues in primary care.

Thanks to this site I am now getting my life back and I am self medicating with NDT .

It took me a year of reading, rereading and waiting for an endocrinologist appointment only to be let down, misinformed, and refused a trial of T3 by my NHS trust.

Ladybex - it is quite possible you have more than one health issue going on -

You have been bombarded with questions from well meaning people -

please post any blood test results you have - without these results, we can't really

help you make any sense of your present situation.

Take good care

Ladybex
Ladybex in reply to pennyannie

Thank you ... Just been to see Rheumatologist and await more blood tests. Due to see oral surgeon next month.

Wish you well

😊

Good news then - at least you'll know one way or another id f it's Sjogrens and

the further blood tests might give some more clues as to what is going on.

Keep in touch.

Ladybex
Ladybex in reply to pennyannie

Hi there... haven’t got Sjögren’s ... I have borderline under active thyroid and waiting to see GP next week

Will keep you updated

Many thanks

pennyannie
pennyannie in reply to Ladybex

Well, that is good news, isn't it.

I was still confused and upset as I was no further forward, and seen as a conundrum.

I was desperate that somebody would have understood my pain and hoped to get some relief of symptoms with a prescription for something !

So, next move back to the doctor ?

I would suggest you take on board Slow Dragons comments above and if possible see a different doctor. I know that last statement might sound flippant but as you were identified as having an underactive thyroid - taking the medication is necessary -

so as to bring the thyroid up or down and into the acceptable range.

I don't know what level of pain you are living with.

There are many products recommended for Sjogrens symptoms - I found none that I would recommend.

There are eye drops - just make sure that they are preservative free.

Obviously, am presuming, you have had to revert to glasses if a contact lens wearer.

Keep in touch, take good care,

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