On levothyroxine: My thyroid are low but I get... - Thyroid UK

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On levothyroxine

tamina786 profile image
65 Replies

My thyroid are low but I get sweating attacks specially under arm pits I don’t understand why but I have no energy been on 75mcg since March and this is my results should I increase dose

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65 Replies
SeasideSusie profile image
SeasideSusieRemembering

Tamina786

Your current results show that you are very hypothyroid.

Are you still taking T3 as well as Levo?

Do you take Biotin or a B Complex containing Biotin (B7)?

tamina786 profile image
tamina786 in reply toSeasideSusie

No I’m only taking levothyroxine and no I don’t taking any b7 please could you help me I’m feeling really poorly

tamina786 profile image
tamina786 in reply toSeasideSusie

I’m so unwell bedbound have no energy at all fatigue brain fog muscle weakness hair loss no motivation

SeasideSusie profile image
SeasideSusieRemembering in reply totamina786

Tamina786

If on Levothyroxine only, the aim generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

What is your doctor saying? Your TSH is very high and both FT4 and FT3 are below range, you are very, very undermedicated.

Why was T3 stopped?

Have you had Vit D, B12, Folate and Ferritin tested?

tamina786 profile image
tamina786 in reply toSeasideSusie

It was stopped by my go and I’m just back and forward with my go that’s why I’m asking some advice in what to do

SeasideSusie profile image
SeasideSusieRemembering in reply totamina786

Tamina786

Why was your T3 stopped?

The advice is, as has already been said, you are very undermedicated and you need an increase on your dose of Levo.

You haven't answered my question about whether you have had vitamins tested.

tamina786 profile image
tamina786 in reply toSeasideSusie

All my other tests have been done all in range that’s what my go said

SeasideSusie profile image
SeasideSusieRemembering in reply totamina786

Tamina786

"In range" doesn't mean optimal and it's optimal levels we Hypos need.

Doctors know little to nothing about nutrients so as long as they see a number on range then that's perfect as far as they are concerned.

Always ask the receptionist for a print out of your results and find out for yourself where your levels lie, never accept "in range" or "normal".

tamina786 profile image
tamina786 in reply toSeasideSusie

I call go and they don’t do anything at all I’m so out of it

Wired123 profile image
Wired123 in reply totamina786

Why don’t you find a new GP as your current GP is being negligent and you should put in a formal complaint against them. But you have no time to waste, even a junior doc can tell you are under medicated, change GP and get a higher dose of thyroxine immediately.

tamina786 profile image
tamina786 in reply toWired123

Thanks I feeling so unwell no energy at all

Wired123 profile image
Wired123 in reply totamina786

Sadly u won’t get better until you have more thyroid medication. I’ve been there myself and until I was on the right dose I felt very unwell. Is there a friend or family member who can go with you to support you with the doctor?

Lalatoot profile image
Lalatoot

Tamina you do need an increase in levothyroxine.

You must feel very poorly as those results are not good.

tamina786 profile image
tamina786 in reply toLalatoot

I feeling so unwell

Lalatoot profile image
Lalatoot in reply totamina786

You will be.

I was very ill and in my bed for almost a year because I was like you.

tamina786 profile image
tamina786 in reply toLalatoot

So how did you resolve the problem cause no one helping go just fob you off

Lalatoot profile image
Lalatoot in reply totamina786

I had to learn from this site.

Then I made sure my vitamin levels were all in top third of their ranges.

Then I went gluten free.

Then I made records of my TSH, FT4 and FT3

With all that information I could show the doctors that the problem was that I was not making T3 efficiently. I had tried levothyroxine alone for 4 years and improved vitamins and gone gluten free.

They gave me a trial of T3 and I am getting better.

tamina786 profile image
tamina786 in reply toLalatoot

Are you taking t3/t4 combination or t3 on it’s on could you tell how you taking t4 and t3 and what I’d the timing and how much of each medication also are you going by your weight and taking dose I have spend so much money on consultation and no luck I’m really desperate please help thanks

Lalatoot profile image
Lalatoot in reply totamina786

I am on T4 and T3.

No you do not dose by weight you dose by blood results and how you are feeling.

It has taken me a year to get the doses sorted. It is trial and error.

You need to get folate, ferritin, B12 and vitamin D tested. Their levels need to be over halfway through their ranges. Post results on here and we will tell you if you need to improve them.

Then you need to get TSH, FT4 and FT3 blood tests. Post the result on here and will will help.

tamina786 profile image
tamina786 in reply toLalatoot

I have posted my most recent blood results could you see please and help me cause levothyroxine making me ill was on 75mcg but increased to 100mcg and felt more awful

Lalatoot profile image
Lalatoot in reply totamina786

Your results from 7 months ago showed that you needed an increase in levothyroxine.

Your results above show that you need an increase in levothyroxine.

When you increase you will still feel ill but you have to keep going. It takes months for things to improve on an increase. And then you may feel bad again which means another increase is needed.

Your TSH should be much lower. Your very low FT3 and low FT4 are causing your very hypo symptoms.

Meanbeannyc profile image
Meanbeannyc

I’m a sweaty hypo too lol

endomad profile image
endomad in reply toMeanbeannyc

I was until my levels improved. I would drench in sweat especially my head, scalp and face literally running down my neck, it was awful and I felt disgusting. I struggle to adjust to changing temps and high humidity still makes me sweat. I even sweat under my eyes!

Meanbeannyc profile image
Meanbeannyc in reply toendomad

I’m a former hyper patient, I’m used to being SWEATY! lol

endomad profile image
endomad in reply toMeanbeannyc

I wasn't so I became really self conscious. Didn't help that I gained a lot of weight after thyroid removed so I just felt like a fat sweaty person, I was quite depressed at that time and my GP kept saying menopause grrrr

Meanbeannyc profile image
Meanbeannyc in reply toendomad

Are u back to normal now?

endomad profile image
endomad in reply toMeanbeannyc

No i never got back to full strength, i was a competitive sports woman before my thyroid was removed. I am a million times better than i was but a hundred miles away from who i was before TT. I had pages of symptoms, i could tick all of HUK list bar one or two, I still have chronic joint pain (hips, knees, ankles and feet also had the usual frozen shoulder), fatigue and anxiety, those 3 never went but i am grateful for small mercies! this is I suspect as good as it gets for me, i have tried everything to heal my joints and fatigue, iv driven myself mad reading. Accepting i am stuck with the last 3 symptoms, is a happier place to be for me than the constant searching and not finding the answers, it gives me time to do other things <3

Meanbeannyc profile image
Meanbeannyc in reply toendomad

What do your labs look like? Sounds like you’re not optimally medicated and still symptomatic.

Meanbeannyc profile image
Meanbeannyc in reply toendomad

My knees hurt too lol. What’s your current treatment plan?

endomad profile image
endomad in reply toMeanbeannyc

75mcg t3 only at bedtime and 25mcg 11am alternate days. I was on 150mcg for 6 months but the extra does not get rid of last 3 symptoms so not point taking double for no extra benefit. My tsh is almost zero, t4 5 ish and t3 varies from 3-10 depending how long after dose my bloods are taken, if i leave 12 hours after t3 my t3 result is 1! so i am resistant and burn through what i use very quickly.

Meanbeannyc profile image
Meanbeannyc in reply toendomad

Why do you not take t4? And it sounds like your FT3 is over range,

endomad profile image
endomad in reply toMeanbeannyc

No my results are very normal, t3 supresses tsh and i dont take t4 so it is irrelevant.

T4 makes me very ill as levo or in NDT. No not a tremor, fast heart, lack of sleep in sight, blood pressure fine. My endo did a full days testing, took 75mcg blood test at 2 hours, 4 hours, 6 hours and 12, so for 4 hours i am over range which is normal and it drops down fast from there. My SHBG is 58 so under optimal 70-90 which means my t3 doesnt get utilized well, it is just sloshing around in my blood, i do expensive t3 wee! I sleep during the time my t3 is over range and wear a smart watch which records my heart rate which is a steady 45-65 bpm during over range/sleep and my temp never goes over 36.5 by the time i get up 9 hours after taking t3 i am back down to 4-5 hence why i take another 25mcg. I can take 150mcg in one go and have no raised heart, temp or blood pressure. So my NHS endo is happy that I am good on this amount but happy to increase if i decide i need to.

My endo asked me to half my dose one night just to see what happens (guinea pig) my heart rate was very erratic it looked like Trumps lie detector sheet hahahha which shows my heart is under stress on a lower dose. It took 5 years to find a balance that is acceptable.

Meanbeannyc profile image
Meanbeannyc in reply toendomad

Oh wow. I’m glad you found a treatment plan that works!

greygoose profile image
greygoose in reply toendomad

75mcg t3 only at bedtime and 25mcg 11am alternate days

You cannot do that with T3. Alternate dosing does not work, it makes things worse. With T3 you need a steady, regular dose - the same dose - every day.

t3 varies from 3-10 depending how long after dose my bloods are taken, if i leave 12 hours after t3 my t3 result is 1! so i am resistant and burn through what i use very quickly.

I'm not at all sure that that is logical. One should leave a gap of 8 to 12 hours to get the normal circulating level of T3. But, saying your T3 is 1 doesn't mean much without the range. I take it it's low. But, that doesn't mean you're thyroid hormone resistant, that means you don't absorb it very well. Do you take it on an empty stomach, well away from food and other medications/supplements, just like levo?

And, I'm not sure it's possible to use T3 very quickly. If you were using it, you wouldn't still have symptoms. It would just appear that you aren't absorbing it. Do you have low stomach acid?

What are your nutrient levels: vit D, vit B12, folate, ferritin?

endomad profile image
endomad in reply togreygoose

All my nutrients good tested last month. Not always on completely empty stomach depends on how late I eat but I was told the empty stomach wasn't necessary for t3. I use to take at 3am when I woke every night but as that got better I took at bedtime.

I will ensure empty stomach, it's good I get reminders, it's so easy to slip into bad habits and then I need to get back to basics. I will stick to just the 75 at bedtime but make an hour after food. I take a pain killer at night so my joints don't keep me awake so I take that same time. Actually for first time in weeks my joints are ok today but then iv had 4 extremely lazy days.

My stomach acid ok but I use lemon juice. I hadn't considered resistant being different to absorbing but of course it is (slaps head) how do I work out which it is?

I have never been completely symptom free, I have great days/week but then exhausted at the end and spend a week lounging around. I have never had same amount of energy every day. My Endo would deff not agree to more. How many people get totally symptom free I suppose I think mine is manageable and the constant searching for answers or the final piece of the puzzle just got too tiring and disappointing.

greygoose profile image
greygoose in reply toendomad

I hadn't considered resistant being different to absorbing but of course it is (slaps head) how do I work out which it is?

If you're not absorbing it in the gut, your FT4/3 - depending on what you take - will register low on a blood test, compared to the size of your dose.

If you're not absorbig it at a cellular level - Resistance to Thyroid Hormone - you will have good levels in the blood, but still feel hypo. You will need to keep increasing your dose until your blood levels are over-range, in order to feel better.

endomad profile image
endomad in reply togreygoose

That makes sense, mine is over range for 4-6 hours after dose but then drops down to top of range and trails off. My Endo did tests at 2,4,6 and 12 hours to see what was happening, he was happy with results.

I have been on higher dose but it didn't make further improvement so I dropped back down I would be constantly over range on 150mcg but still with lethargy, anxiety and joint pain, I don't always have them or all 3 but am aware they've not gone. My anxiety has not been helped this year by lockdown etc.

greygoose profile image
greygoose in reply toendomad

mine is over range for 4-6 hours after dose but then drops down to top of range and trails off.

Well, that's perfectly normal. But, it should still be higher than yours apperently is after 8 to 12 hours, considering the dose you take. So, it doesn't look like you're absorbing it.

My anxiety has not been helped this year by lockdown etc.

That is certainly a consideration. I think lockdown has affected many of us. I certainly went through a very bad period, but I knew it has nothing to do with my thyroid - or lack of one!

I would be constantly over range on 150mcg but still with lethargy, anxiety and joint pain

Well, that sounds as if you have an absorption problem at a cellular level then, as well as in the gut.

endomad profile image
endomad in reply togreygoose

Thank you, any ideas how I tackle both problems.

greygoose profile image
greygoose in reply toendomad

First of all, check out your stomach acid. What were your nutrient results and ranges? That would give you a clue as to how well you absorb. And, what's the range for the FT3? You might be taking lemon juice, but maybe that's not strong enough.

For the absorption into the cells, you just have to keep increasing your dose until some actually goes in, and take it all in one go to saturate the receptors - might be best to sort out your stomach acid first, though, because if you're not absorbing much through the gut, you're going to end up on one hell of a dose! lol

greygoose profile image
greygoose in reply togreygoose

Just a thought: you don't consume much soy, do you?

endomad profile image
endomad in reply togreygoose

Apologies for my tardiness in getting my latest test results:

10/9/2020

Ferritin 117 (4.6-204)

B12 765 (187-883)

folate 13.10 (3.10-20.50)

T3 3.22 (1.88-3.18)

T4 <4 (7-14)

TSH 0.04 (0.35-4.94)

creatine 5.40 (5.5-10.20) Low

CPR 1.70 <5

LDL cholesterol 0.72 (0-1.71)

I took 75mcg 8 hours before test

my temps at waking average 35.5-36

Blood pressure average 125/80

resting pulse 60

Cortisol (last tested 2018) 95 (150-550) and i take 10mg hydrocortisone first thing in morning.

I sleep well average between 2-4 hours deep state sleep out of 7-8 hours which is considered good.

So everything looks ok but I still get fatigue & joint pain. The difficulty with fatigue is the less I do, the less I feel like doing but on days i feel full of it and do too much i am exhausted for days. Joint pain is much better than it was before T3 but my hips and knees hurt ( i am over weight 84kg) last year i was 74kg and my joints still ached, one of my first signs of under medication is really painful ankles/achilles & feet. Wheat, dairy & sugar free made no difference to my joints, I take tumeric, ginger, omega 3's and vit D, multi B's & B12, MSM glucosamine made no difference after 6 months. My diet is very clean & healthy until lockdown this year my carbs are much higher than usual, hence the 10kg weight gain this year.

greygoose profile image
greygoose in reply toendomad

Every thing does look good - as far as it goes. But, there's no result for vit D. And it's low vit d that can cause head sweats.

Also, if you're taking HC, you should have more frequent testing.

Have you tried taking zinc? I was a 4+ Ibuprofen a day girl before I started zinc. The aches and pains disappeared almost over-night and I was able to stop the Ibuprofen completely. Also, CBD oil is good for pain. Worth a try. :)

endomad profile image
endomad in reply togreygoose

Forgot to put vitamin D 147 (50-150) I do take zinc alternate days since march/april this year, Dr Malcom Kendrick said it was first line defence against covid or any flu type bug, I also take magnesium. I have tried CBD oil made no difference although it is brilliant on one of my elderly dogs, he was arthritic in his back legs, huge difference bless him.

I havent had the sweats for years, that was before t3 and it was miserable, very rare to get it now. I had so many miserable symptoms, xmas 2014 i told my husband i was dying and could no longer see the point of living as i was in so much pain and unable to stay awake more than an hour at a time. It dawned on me my lovely dr was in fact useless, worse i came to find out he was dangerously negligent. I did a bit of google as a last resort and found TPAUK and Shelia pointed me to Dr Peatfiled and that was the start of my recovery. TT was Feb 2009, 6 years of my life down the toilet, i was started on NDT and NAX, it was like a light being switched on, by the end of 2015 i was seeing a recommended endo who put me on t3 only.

I have been on 150mcg taken at night but it didnt get rid of the last 3 symptoms, no point taking double the dose for no benefit so i settled on 75mcg. I have driven myself mad, reading and trying everything to get my ooomph back so i have just accepted that this is it for me, altho i do remain ever hopeful. I have periods of energy and activity but it never lasts. I am under a rheumatologist for painful joints, i had a bad accident in april and fractured my hip and thigh, i only found out recently so he is only focussing on that, not the fact that my joints have hurt since TT, he doesnt believe there is a thyroid connection, i have good bone density thanks to years of sports before TT, some loss of cartilage from left hip joint but nothing that screams arthritis and no explanation for knees, feet or ankles.

I do wonder if anyone after TT ever gets back to full strength and to the level of health they had before TT.

Bracken1 profile image
Bracken1 in reply toendomad

Hiya see the head sweat and face sweat that is what I have been having.i am on 200mcg of levothyroxine i am type 2 diabetic as well and apparently have high blood pressure. Last December I went to the gp the face sweat was terrible at work sweat dripping off my face the gp asked lots of questions I told her how exhausted I was and I had lost weight. And sometimes stomach painApp get bloods went back for results got given iron tablets and then she said get bloods taken again. The following day I was at work got a phone call from the hospital to go and get an endoscopy and a colonoscopy by the end of the week was panicking inside by this had the two procedures taken 16 biopsies then got an app for a CT scan was waiting for results and although I wasn't saying it out loud I was really worried. I think by the end of February I had made a gp appointment cos wanted the results back on the same day I got a letter from the hospital saying that there were a couple of things one was gastritis cant remember the other. I was relieved it wasn't Cancer but still did not know what it was I told the gp I had been really worried as she had not told me to expect appointments for procedures. Still did not get an answer she gave me fast release metformin I couldn't take them back to getting app for thyroid bloods on Friday. I will ring tomorrow to see if they will do a full blood count.

endomad profile image
endomad in reply toBracken1

It's miserable isn't it, I was self conscious about the sweating which just made it worse, I got anxious and embarrassed which made me sweat more, I felt like I was standing under a tap ☹️. I still occasionally get it but it's rare now.

I had bad tummy trouble for a while, IBS had me doubled up in pain and I couldn't go out as the need for the toilet was immediate.

Hang in there it does get better, I think we all have that niggling feeling ' is it cancer' it's like keeping 10 plates spinning on sticks! doing everything I need to do to stay well. Xx

Bracken1 profile image
Bracken1 in reply toendomad

Thank you.

greygoose profile image
greygoose in reply toBracken1

Have you had your vit D tested? Excessive head-sweating is a symptom of low vit D.

SlowDragon profile image
SlowDragonAdministrator

Contact GP ASAP for 25mcg dose increase in levothyroxine up to 100mcg

Insist politely that vitamin D, folate, ferritin and B12 are tested NOW

Bloods should be retested 6-8 weeks after levothyroxine dose is increased

Which brand of levothyroxine are you currently taking?

What vitamin supplements are you currently taking?

Who prescribed T3? If it was endocrinologist, GP should not have stopped if

Come back with new post once you get vitamin results

And again when get next thyroid results

tamina786 profile image
tamina786 in reply toSlowDragon

I’m was taking actavais and then accord was causing problems so at present taking mercy pharma , my all other tests are normal as go said apart from tft , my t3 was stopped because it was causing a lot of problems

tamina786 profile image
tamina786 in reply toSlowDragon

Hey I wrote to you early I’m sorry would you able to reply thanks

SlowDragon profile image
SlowDragonAdministrator in reply totamina786

So at this stage you need to get levothyroxine dose increased slowly upwards in 25mcg steps. Retest bloods 6-8 weeks after each dose increase

Getting all four vitamins optimal

Strictly gluten free diet helps or is essential for many patients

Come back with new post once you get next blood test done after 6 weeks on 100mcg

What vitamin supplements are you currently taking?

SlowDragon profile image
SlowDragonAdministrator in reply totamina786

Essential to test vitamin d, folate, ferritin and B12

Insist GP tests these now

Come back with new post once you get results and ranges

Timetraveler67 profile image
Timetraveler67

Sending you a big hug I hope you find and get the help you You need I really feel for you x

McPammy profile image
McPammy

Get yourself to a hospital. They will do blood tests and advise what dose to be on. You need more Levothyroxine and/or T3!

Don’t delay you need help.

Meanbeannyc profile image
Meanbeannyc in reply toMcPammy

Don’t scare the poor girl.

McPammy profile image
McPammy in reply toMeanbeannyc

I was not intending to scare her. I know from personal experience not to leave these matters hoping your body will just sort it out. At times we just need to get help more urgently.

Meanbeannyc profile image
Meanbeannyc in reply toMcPammy

We will all get there

McPammy profile image
McPammy in reply toMeanbeannyc

I have got there! but only from my own tenacity and going private. Countless failed attempts with the NHS over years.

Meanbeannyc profile image
Meanbeannyc in reply toMcPammy

And she will too. She will be okay. Tamina786, you will be okay. Take your meds. Keep going.

Thyb profile image
Thyb

Ring 999, tell them your symptoms, show them above results. Big hugs and take care... xx I understand how you feel truly

tamina786 profile image
tamina786

Because of the COVID-19 situation I’m not getting any help , or any appointments can any one recommend a good consultant please I’m really suffering a lot

Marz profile image
Marz in reply totamina786

SeasideSusie gave good advice above about increasing your dose. Have you managed to do that ? How do you take your Levo ?

mikey_is_alive profile image
mikey_is_alive

the sweats they say is your body overdosing. but in connection with low levels in blood. doctors will say you are not taking the tablets regularly, saying you forget to take them to cause a low blood result/groggy/foggyness. and then the day you do take them your body goes into hyper-shock of sweating. they will probably tell you to just try better at taking the meds saying its the infrequent consumption of them thats the problem. they wil just keep saying sweating is temporary and hairloss is temporary because your body has not adjusted/settled to a regulated level due to the ups and downs.

... but after 37 years. i been a heavy sweater even with regular daily tablets. so i know its not that. T4 alone is not enough, even when i go up to 300mcg daily. but doctors will find any excuse not to offer t3/t4 mix. and its not the doctors fault its the CCG and the national budget thats making all gps avoid putting people on T3

Batty1 profile image
Batty1

You need to pick up the phone and call a new doctor this is your only option in order to get better healthcare and to start feeling well!

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