Advice please: I really don’t know what to do and... - Thyroid UK

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Advice please

jodary profile image
27 Replies

I really don’t know what to do and I need advice please . What would you do if these were your results? Blood taken at 8.30 and only water before

Tsh 0.136. (0.27-4.2)

T4. 26. (12-22)

T3. 5.3. (3.1-6.8)

I thought I would feel better with improved T3 but I feel awful. Loose bowels, head and muscle aches faster heart rate than normal although not overly fast . Occasional palpitation. Have lost weight due to reduced appetite. On 100mcg which has been my dose for years.

October result was Tsh. 0.962

T4 24.9 T3 3.9 Same ranges same dose

Fed up of feeling ill. Can anyone help ?

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jodary
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27 Replies
Buddy195 profile image
Buddy195Administrator

I’ve experienced similar symptoms when my FT4 has been at top of/over range. I can tolerate FT3 being high in the range, but not FT4.

Was this test after taking 100mcg Levo per day?

In a previous post SlowDragon recommended a reduction

If Ft4 remains slightly over range look at reducing Levo a SMALL amount…..eg 75mcg one day a week and 100mcg 6 days

Did you trial this suggestion?

jodary profile image
jodary in reply toBuddy195

I will be honest I haven’t. Do you think such a small reduction would have an effect ? I’ve only started feeling as bad as this a few days ago and the thought that it could be T4 has just occurred to me . I’m interested that you have experienced similar symptoms with high T4 did you reduce ? I was so happy that my T3 had increased, I expect it will drop again if I reduce. .

Buddy195 profile image
Buddy195Administrator in reply tojodary

There are health risks to having over range FT4, so I would certainly look to reduce this jodary. I experience ‘hyper like’ symptoms of weight loss, palpitations, loose bowels and heightened anxiety when FT4 is too high for me. We all have different ’sweet spots’ where we feel most well.

Personally, I would use a pill cutter and reduce Levo to 87.5mcg per day (perhaps alternating 100/ 87.5mcg at first until well tolerated, then move to 87.5 daily). I always adjust slowly, as I can experience adverse symptoms from adjusting too quickly.

Do retest levels after 6-8 weeks on a consistent dose.

jodary profile image
jodary in reply toBuddy195

I only gave 100 mcg pills , it’s a bit tricky to get 87.5 accurately. Is it possible to alternate 100 and 75 ? How did you do it and did you stay on reduced dose ?

SlowDragon profile image
SlowDragonAmbassador in reply tojodary

Suggest you try reducing to 75mcg twice a week

Retest in 8-10 weeks

Cut 100mcg into 1/2 and 2 x 1/4 to get 75mcg

Save spare 1/4’s

How old are you

(Helpful to add age on profile)

jodary profile image
jodary in reply toSlowDragon

Am 68 have been on 100 levo for 40 years , who knows what damage that will have done to me in that time .

jodary profile image
jodary in reply toBuddy195

Is there any benefit to missing a couple of days to reduce T4 level? Feeling really off today. Thanks for your advice btw

Buddy195 profile image
Buddy195Administrator in reply tojodary

If you feel very ‘hyper like’ I would not take the Levo until this feelings pass and then start at a lower dose in a day or so. Yes, some members alternate 100/75 but I prefer to take 87.5 daily. You could ask GP to prescribe a different dose, if this is available in type that suits you best.

I have continued to have my FT4 at 60-70% in range (and FT3 slightly higher) as this suits me best As I said, we all have different sweet spots, where we feel most well.

xNorthernLightsx profile image
xNorthernLightsx in reply tojodary

It will drop again if there’s a conversion problem.

tattybogle profile image
tattybogle

your levo dose has been a little bit too high for several months now .You are nervous to reduce to 75mcg due to a previous experience so you haven't reduced it at all , but you clearly need to . You don't want to get GP to lower the prescription at the moment which i totally understand , as it leaves us feeling vulnerable if we don't think they will be willing to put it back up if we need it later .

so , lower your dose a bit for yourself , and give it at least 6-8 weeks to settle in , don't worry of you initially feel undermedicated for the first 4/5 weeks ,, just give your body enough time to adjust itself . allowing everything to get used to a lower dose and resettle itself takes time, and can be difficult , but don't panic . wait it out.

when you previously reduced to 75mcg it was too little, and this is worrying you ,,,but that was then and this is now ... you are different now , you weight less now ,,, your T4 is higher now than it was then . etc etc . I used to need 150mcg for years , now i don't need that much and if i kept on taking that much the symptoms of overmedication would slowly creep back up on me . There are all sort of reasons why we sometimes need a bit less, sometimes that is permanent , sometimes it's just temporary .

ideally you would now reduce to 87.5mcg same dose every day , but if this is not possible with the 100's you have , then take a total of 600mcg / week rather than the current 700mcg / week ( this gives an average dose of 85.7mcg / day )

spread it out as evenly as you can over the week .... ie cut one 100mcg in half to get 2 x 50, and take these on eg tues and fri and take 100mcg the other 5 days .

you may find the large changes in dose from 50 to 100 a bit unsettling, or you may not .

if you think it's a problem after a few weeks of trying that , then you can try cut a 100 into 4 to get 25's and also cut some into 50's ... using these 50's and 25's to take 100mcg / 75mcg on alternate days which make the difference less extreme .

however you achieve it ~ once you have been on a total of 600mcg/week for a couple of months, then retest bloods and re-asses how you feel / symptoms ,and then decide whether to ask GP for that dose to be prescribed in tablets , or whether to carry on getting 100's and cutting them up. or whether to alter dose up , or down .

jodary profile image
jodary in reply totattybogle

Thank you, yes you totally understand how I feel about reducing ! Although how I feel at the moment I am more encouraged to do so. Do you also think it a good idea to miss a couple to get over this hyper feeling which is very uncomfortable ?

tattybogle profile image
tattybogle in reply tojodary

i'd maybe miss one tomorrow , but then resume at 600/week however you choose to do it ,

i'm a firm believer that small slow changes are kinder to the whole system than sudden jerks are .. yes it takes longer , but that is the the way the body would do it for itself ,,,, it wouldn't suddenly turn your thyroid off completely even if you were hyper , it would turn it down gradually over a few wks.

greygoose profile image
greygoose

You're a very poor converter, and what you need is less levo and more T3. You certainly need less levo, that's much too high. And possibly if your FT4 came down your FT3 would rise a bit, because at the moment, most of that T4 is converting to rT3 and not T3.

Do you have Hashi's?

jodary profile image
jodary in reply togreygoose

No , I thought my conversion had improved a lot but at the expense of having high T4. I’m just not confident at trying to source t3 , I just wish drs would be more help but they obviously know nothing and would get me in a worse mess than I am now !

greygoose profile image
greygoose in reply tojodary

No, they don't know anything much about it.

Your T3 has got higher because your FT4 is so high, but that doesn't mean your conversion rate has improved. And it's really not a good thing to have an FT4 that high long-term. It increases your risk of developing cancer and heart problems. And your FT3 is still not high enough for good health.

None of us are confident at trying to source and take T3 in the beginning, but we have to weight up the risks and make a choice. Very few of us get handed it on a plate.

jodary profile image
jodary in reply togreygoose

I understand that but when you are struggling with anxiety and can’t afford private endocrinologist it’s hard to know which way to turn

greygoose profile image
greygoose in reply tojodary

I know. Been there, done that... :)

But whatever you decide that FT4 has to come down.

jodary profile image
jodary in reply togreygoose

Maybe that’s why I have blood cancer , being under medicated for many years when there was no way of viewing ur own blood results and no self help information. Now we can view our historical blood results I can see how undermedicated I was for years

xNorthernLightsx profile image
xNorthernLightsx in reply tojodary

It’s frightening isn’t it? GPs must hate the fact that we can now access so much information that was previously withheld ☹️

We must use the information we can now access to our advantage

greygoose profile image
greygoose in reply tojodary

I'm sorry to hear that. But, that's not what I said. I said that long-term, very high FT4 increases your risk of cancer.

jodary profile image
jodary in reply togreygoose

Thank you it does make you wonder though. I don’t know if I’m right in thinking that a lot of people are not diagnosed with thyroid issues under 30. Are the majority not taking Levo for as long as I have ? I don’t know but I didn’t know much about it and was given 100 pills in a little brown bottle with no information so I just took it with my breakfast which obviously I now know is not the right thing to do . But I was told every year that no action was needed and I can now see with the access we now have to our records that my blood tests were far from satisfactory as they said.

greygoose profile image
greygoose in reply tojodary

A lot of hypo people do go undiagnosed because they make it as hard as possible to get a diagnosis. They just don't want to diagnose thyroid problems, partly because they have no idea how to treat them - their education in thyroid is woefully inadequate - and partly because we cost them money - mainly because they don't know how to treat us correctly. Plus they were told in med school that thyroid problems are no big deal and we're all a bunch of whingers making a fuss about nothing and all our symptoms are the fruit of our over-active imaginations. And because that is what they were taught in med school - and what they 'learn' in med school is sacred - they are incapable of thinking about it logically: is it logical that there are thousands of people complaining about a disease that doesn't exist? No, it isn't, but they have one track minds and apparently are incapable of changing the direction. And so this insanity continues - not only continues but gets worse with time. It is a dire situation.

I've been hypo since I was about 8 years old, and not only was I not diagnosed until I was 55, but was never even tested in all that time despite blatant symptoms. A lot of irreparable damage has been done and I will never be the person I should have been. As a result, I hate all doctors and wouldn't trust one of them as far as I could throw them - which obviously wouldn't be very far. And not only do none of them accept responsibility, they've always blamed me for the state I'm in! So, no, it doesn't make me wonder. I know!

xNorthernLightsx profile image
xNorthernLightsx in reply tojodary

Those bloods are clearly indicative of poor conversion and a need for some T3.

Mine were very similar at one point. When I decreased Levo and very slowly added T3, I felt so much better. When T3 became difficult to get, I swapped to NDT.

High T4 is the kiss of death for me. Even when my FT3 is sitting nicely in range, I can’t cope with high FT4, especially when it’s as high as that.

I was anxious, couldn’t sleep and so tired

Buddy195 profile image
Buddy195Administrator

jodary, an increase in anxiety may well be linked to FT4 being too high, so as a first step this needs to be reduced.

Do share your next blood test with us, when you’ve been on a reduced dose for 6-8 weeks. Personally I like to wait the full 8 weeks as it can take my body this long to adjust to the altered dose.

jodary profile image
jodary in reply toBuddy195

I will , are u just on Levo ? X

Buddy195 profile image
Buddy195Administrator

No, I’m on combination treatment (Levothyroxine and Liothyronine). You need to lower your Levo and share blood tests with us before considering the option of sourcing Liothyronine.

jodary profile image
jodary in reply toBuddy195

Thank you will do, wish this site had been here when I first was put on Levo.

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