What to do next + patience: Hey everybody, I am... - Thyroid UK

Thyroid UK

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What to do next + patience

Hidden
Hidden

Hey everybody,

I am going through ups and downs again...

It has been now about 9 weeks on T4 only, 5 weeks at 150 mcg, then upped it to 155 since my ft3 was 32% of the range, when tested at 4 weeks. My tsh was still fluctuating seemingly and one week into 155 I started to get overdose symptoms, my ft4 was top range at 90%, ft3 was high at 70%. So week 6 I skipped couple of days as I was shaky anxious on the edge, then took 100 for a few days and then 125 and it helped tremendously, then about 2 weeks ago started at 137.5. initially it was okay and now I'm feeling incredibly hypo, I'm at work falling asleep, in the last 10 days I put on 2 kilos :( started having digestion issues, skin is too oily, hair is brittle again, fatigue is crushing :( my only idea is to go back to 150 mcg , which is a bit lower than 155 I had been taking, and add 2.5 mcg t3 for a better conversion and keep it for 8 weeks.

Any thoughts on this? Initially I thought lowering to 137.5, holding and adding some t3, but I'm struggling on lower t4 it seems :(

39 Replies

Have read about 5 of your back posts, see you were taking supplements 3-4 weeks ago...have you had your ferritin, folate, vit D , b12 tested recently? I don’t think you can continue levothyroxin by upping doses, then choosing to miss couple of days etc, when you at times seem to be unsure if you are already overmedicated, then continue to up the dose. At least go back to 150 or perhaps better on 135mcg, with optimal vits/ mins, for full 6 weeks. On 155 mcg you were certainly converting T4 to T3, so you might not need to add separate T3. Are you Hashi, perhaps that is the reason your thyroid results are fluctuating?

Hidden
Hidden in reply to Judithdalston

Thanks Judith, my vit was at 119 recently, which is great, b12 mid-range, folate didn't test :( ferritin at 20% of range, but that was two months ago and been working on it so need to re-test soon. The only reason I had to skip two doses was to get relief from continuos diarrhoea, palpitations and panicky feeling, which I had before when overdosed and it helped, but perhaps I should have gone back to 150, not reducing to 137. I have Hashis, but my tsh is keeping low. I have been on reduced dose for 3 weeks now and I'm unbelievably fatigued and put 4 pounds extra again , so not sure 137 is going the right way.

Judithdalston
Judithdalston in reply to Hidden

If your ferritin was that low you will definitely be having problems, b12 needs to be at top of range too. Hope that on next test you will see the difference ...try Mg and vit C as well as can help with absorption and stomach/gut. I understood why you felt the need to stop the levo., but the body obviously needs continuous sources of thyroid hormone ..perhaps you need more like 145mcg! You can take alternate 150 one day and 135 next, even see on forum people doing say 135 mon to Friday , 150 Sat- Sun. if you feel you need that bit more.

Hidden
Hidden in reply to Judithdalston

Thank you Judith, I have reverted back to 150 and will hold it for 8 weeks. I need to be patient, so difficult. If I'm overdosed again, will need to see what to do next. What worries me that I have a these hypo symptoms multiplying on t4, my cholesterol is high, I am getting heavier and heavier, never had that like this on NDT.

Judithdalston
Judithdalston in reply to Hidden

Your cholesterol will return to normal, in theory, when properly medicated...if you get a regime of getting, and maintaining Ning , your vits/ mins at optimal, that too should help you. Have you tried gluten free, even dairy free, diet for 2-3 months to try to limit antibodies( and their obvious attacks causing ‘flares’)?

Hidden
Hidden in reply to Judithdalston

Thanks - have been gluten free dairy free for years, no difference to antibodies :(

Hidden
Hidden in reply to Judithdalston

Forgot to mention. My mam has Hashimoto too. Our doctors reckon it's after Chernobyl nuclear explosion , we were also fed enormous amount of lugols iodine to suppress thyroid at the time. Most of my friends have Hashimotos back home.

Judithdalston
Judithdalston in reply to Hidden

Interesting re Chernobyl....hope your family are in good health otherwise. You’ll get there eventually, but it can time!

Hidden
Hidden in reply to Judithdalston

Thanks Judith! They are, thank you xxxx decided to stick with 150 t4 plus 5 t3. I don't feel I can only stay on t4, the last 9 weeks it felt I was missing it, so hopefully the little bit makes a difference x

So sorry to hear your problems i thought you were feeling better. Sending you all my love and hope you find a solution very soon.x

Hidden
Hidden in reply to Christinah61

Thank you Christina xxx I thought I was on the right track :( it's so difficult, especially now with the new job, it's exhausting xxxx hugs

Hard to believe that a miniscule increase of 5 mcg levo - how did you even manage that? - could increase your FT3 by more than double. Sounds more like you have Hashi's. Have you had your antibodies tested? If you are converting well - which it sounds like you are but would need to see the actual results AND ranges to know for sure - then adding in T3 is unlikely to improve things.

Hidden
Hidden in reply to greygoose

I know, I used Helvellas table, I took 175 one day,then 150 another, then 162.5, then 150 for 4 days, so the average increase in a week was around 5 mcg. Might be important that my blood test was at week 4 and then at week 5 I have decided to increase, so potentially and maybe my labs have already improved by me not knowing. Then 2 weeks later I feel overdosed, have incredible hunger diarrhoea, jitters etc. My tsh is low at 0.05 in week 6, while in week 4 is closer to 0.02. my TPO antibodies have also increased from 600 to 890 in a space of these 6 weeks. Bloods at 4 weeks were Ft4 18 /9-19/, ft3 4.31 /2.89-4.88/ and at 6 weeks ft4 17.1 /9-19/, ft3 3.54 /2.89-4.88/. Could it be that I didn't wait long enough ? My slightly higher tsh could have stimulated conversion better?

greygoose
greygoose in reply to Hidden

Not high enough. Your TSH is suppressed. And your conversion is the same. But, if your antibodies are that high, then you do have Hashi's, and that's more likely to be the reason for your change in levels, rather than an increase of 5 mcg T4.

Even so, you didn't wait long enough. If I were you, I'd wait another six weeks without changing anything. Neither up nor down. And see what happens.

Hidden
Hidden in reply to greygoose

Gotcha, so 6 weeks on 150? Just to clarify?

greygoose
greygoose in reply to Hidden

Yes. :)

Hidden
Hidden in reply to greygoose

Thank you :)

greygoose
greygoose in reply to Hidden

You're welcome. :)

Hi there ,

I’m so sorry to hear you are not feeling better since our last posting conversation.

I think grey goose has a good point though - even if you don’t feel great you should try to stay on a regular dosing so that your blood work will give your MD a stable reading. It’s worse , believe it or not, if you don’t stick to some kind of regular regimen, even if it’s not ideal, in the short term.

I am also grappling with dosing issues - but I have elected to stay on current dose of 62.5 till my next blood work is due and then I’ll see where I am. I know that might not work for everyone, and I am certainly no expert by any stretch - so I am just hoping that this may help you.

Hang in there and feel better soon. Sending you positive energy and best wishes.

Hidden
Hidden in reply to Greekchick

Thank you so much xxx I completely agree with trying to stick with the dose for longer, I don't think I gave enough time to 150. Then with 155 I had to go back down, the fatigue panic diarrhoea from overdose were unbearable, I had them for a week and was starting a new job in US, needed to fly on my own to San Francisco and panicked that I would not be able to :(

Greekchick
Greekchick in reply to Hidden

Sending you hugs 🤗🤗🤗🤗 feel better soon. You’ll get there .

SlowDragon
SlowDragonAdministrator in reply to Hidden

Increased stress can mess with adrenals

Thyroid replacement is a long term strategy. You can't just keep chopping and changing. It takes weeks to get to a stable state. Furthermore t4 and t3 results can be misleading. You need to monitor using TSH only. Then check it every 3 months minimum.

cartybabe13
cartybabe13 in reply to Lifluf

What? TSH is useless for knowing how much your body’s getting. You need free t4 and free t3.

SlowDragon
SlowDragonAdministrator in reply to Lifluf

Would agree you can't chop and change dose

That testing should only be after 6-8 weeks minimum on constant unchanging dose

But FT3 and FT4 will need testing as well as TSH

Hidden
Hidden in reply to SlowDragon

Will do that SlowDragon, thank you x I have gone back to 150 and added 5 mcg of t3, I know I need it, will stay on it for 8 weeks minimum + test

SlowDragon
SlowDragonAdministrator in reply to Hidden

We normally only recommend increase in Levothyroxine or T3. But as you were already on 150 Levo for several weeks, see how you get on

Bloods should be retested 6-8 weeks after constant unchanging dose

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levo dose should be 24 hours prior to test, (taking delayed dose 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/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Hidden
Hidden in reply to SlowDragon

Thank you SlowDragon, I thought the the same. Will keep at it for 8 weeks for sure.

I don't know where you got that from. Speaking professionally, TSH is the only reliable way to monitor thyroid replacement. FT4 and fT3 are normally only helpful for hyperthyoidism.

Judithdalston
Judithdalston in reply to Lifluf

Interesting to say you are ‘speaking professionally’....surely from reading this forum, you can see how for many of us, the TSH is not the reliable way to help ‘solve’ our thyroid symptoms!

helvella
helvellaAdministrator in reply to Lifluf

Lifluf ,

Would you please let us know what you mean by "professionally"?

StitchFairy
StitchFairy in reply to Lifluf

I don't know what kind of professional you are, but your 'professional' opinion about monitoring thyroid replacement is rapidly becoming old fashioned. There are a plethora of papers around now that discredit this out of date approach.

helvella
helvellaAdministrator in reply to StitchFairy

Like diogenes (et al) recent paper?

bmcendocrdisord.biomedcentr...

StitchFairy
StitchFairy in reply to helvella

Yes! This forum is such a great place to learn from :)

NWA6
NWA6 in reply to Lifluf

I should be perfectly healthy according to my TSH but I wasn’t. If my FT4/3 wasnt monitored then it wouldn’t have been obvious that I needed T3. I’ve now been on a combination of T4/3 for 3/4wks now and feel fabulous! 10yrs + of a half life because the ‘professional’ opinion was that my FT4/3 range wasn’t useful!

Either state your case for saying something so woefully inaccurate or take your ‘professional’ views somewhere 🤬

SlowDragon
SlowDragonAdministrator in reply to Lifluf

Lifluf

Can you explain your "professional" experience

Just testing TSH is completely inadequate on any replacement thyroid hormones for many reasons. It's absolutely essential to test FT3 and FT4, especially to fine tune doseage

If patients are on only Levothyroxine many are poor converters of FT4 to FT3 for a wide variety of reasons. Eg Coeliac, gluten intolerant, lactose intolerant, low vitamin levels, gut infections, adrenal insufficiency, etc

Many Hashimoto's patients find the TSH is completely unreliable due to ongoing fluctuations in Thyroid levels

Low vitamin levels, which are extremely common when hypothyroid, tend to lower TSH

Many hypothyroid patients have some degree of central hypothyroidism, this no where near as rare as medics like to think

Many Graves patients TSH never recovers after period of being hyperthyroid. After RAI or Thyroidectomy TSH remains low despite very low FT4 and/or low FT3

Large numbers of thyroid patients have genetic issues that mean TSH is either unresponsive or sluggish without the addition of small dose of T3

bluehorizonmedicals.co.uk/t...

Obviously if taking combination of Levothyroxine plus T3 or NDT it's always essential to test FT3 and FT4

Good article on why FT3 and FT4 are most important tests

restartmed.com/tsh-isnt-the...

Hidden
Hidden in reply to Lifluf

Ehm. No. Even my past and present endocrinologists didn't/don't think that. You need all tfts to understand what is actually happening. My tsh has been suppressed for years due to taking NDT and it will never come back up ...unless my ft4 ft3 are severely below range. Which is hazardous to anyone's health.

Stay on 150mg. Do not miss days and do not lower dose. An endocrinologist told me never take different amounts. Take the same dose same time every day. Take with two glasses of water and take no-good or tea for one hour. I have stuck with this and it works. I am on 150levithyroxine daily. Good luck.

helvella
helvellaAdministrator in reply to Buddyluna

I think your units are wrong.

dropbox.com/s/q00vyt5703f4u...

Also, what size glasses of water? You write as if all glasses are the same size! 🥛🥛

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