Thyroid Levels won’t stay normalized

[palberts01]

Thyroidectomy done 2014 had about 3 adjustments then stayed balanced for 7 years. Then Jan 2021 TSH got to 20.85 before doctor caught it. Now we are May 2022 level was 0.001 too low was having AFib. Adjusted again now TSH is 4.85!!! Climbing again?? When level was 0.001 on 150mcq Tirosint dropped to 125mcq level in 2 weeks 4.85 with T4 1.7 no T3 done who knows why. My thing is my TSH is all over the place WHY!!! Doctor won’t put me on natural due to thyroid cancer and she said with glands weighing different she said will be even harder to balance. I have muscle stiffness, swelling both lower legs, weight gain over a year +50 , shortness breath, high blood pressure and general fatigue. Help me please!!!!

[greygoose]

My thing is my TSH is all over the place WHY!!!

Why? Because your doctor is using it to dose by. Which is 100% wrong. If you dose by the TSH, you get onto what I call the TSH seesaw: TSH too low for doctor's liking, reduce dose - TSH too high, increase dose - TSH goes too low for doctor, reduce dose - TSH too high... And so on and so on and so on ad infinitum.

The most important number is the FT3. You are only over-medicated if the FT3 is well over-range. Which is probably why they don't want to test it! But failing that, she should at least be looking at the FT4. Once the TSH gets below 1, it is a very bad indicator of thyroid status.

May 2022 level was 0.001 too low was having AFib.

That's as maybe. But it was nothing to do with the TSH. The TSH has nothing to do with the heart. It only has two jobs: to stimulate the thyroid to make more hormone, and to stimulate conversion of T4 to T3. That's all.

Doctor won’t put me on natural due to thyroid cancer and she said with glands weighing different she said will be even harder to balance.

Oh dear, oh dear, oh dear! I haven't heard that one in a long time. lol Does she really think they take one gland and make a pill out of it, then take another gland and make another pill, and then another... ? Has she ever thought about just how illogical that is? The glands are dried, ground up, mixed together and the potency tested to make sure that, as far as is humanly possible, all the little pills have the same amount of T4 and the same amount of T3. Either she's very stupid or she's fobbing you off because she has her own reasons for not wanting to prescribe it.

So, anyway, you are now very under-medicated, and that is going to continue like that that - up and down - until your doctor either has a brain transplant, or you you find a new one. Doctor, that is, not a brain.

[palberts01 in reply to greygoose]

I’m gonna upload my last 4 tests

[greygoose in reply to palberts01]

Well, your TSH is almost suppressed there. And your FT4 is 111.11% through the range - well, over the top of the range - but really not much over. However, your FT3 is only 50% through the range, so probably too low. You were most definitely not over-medicated on that test. But, doctors just look at the TSH, have a knee-jerk reaction and reduce the dose! It defies all logic.

[SlowDragon Administrator in reply to palberts01]

Removed image as it shows your personal details

[palberts01 in reply to SlowDragon]

??? I don’t see personal information?? Help me please

[SlowDragon Administrator]

Essential to regularly retest vitamin D, folate, ferritin and B12

Constant changing of dose levothyroxine affects vitamin levels

What vitamin supplements are you currently taking

Breathlessness is frequently linked to low iron/ferritin

Come back with new post once you get vitamin results

[Gingernut44 in reply to SlowDragon]

The poster’s information is showing on the picture - perhaps it should be removed or edited

[palberts01 in reply to SlowDragon]

Vitamin D 43.5 B12 482. Folate 13.8

[SlowDragon Administrator in reply to palberts01]

Can you add the ranges (figures in brackets after each result)

[a1glenn]

I am going through the same thing. I am one year older than you. My surgery was in 2009. I do ok for a while, then my balance is off. I don’t understand it. I’m on Synthroid and T3, and have a good doctor that works well with me. I have difficulty taking Synthroid, it makes me feel bad. Maybe I should try Tirosint. Why did you start taking it?

[palberts01 in reply to a1glenn]

Hi there thank you for taking the time time to chat. My TT was 2014 and 7 years on generic levothyroxine made by one certain manufacture I did excellent.Then started with levels being unbalanced after 7 years assumed I developed an allergy to dyes was switched to Tirosint more pure form of T4 drug. Took it for awhile good results then all of sudden felt horrible went to the doctor and said please something is wrong drew labs my TSH skyrocketed and I’ve been on rollercoaster for a year with no resolution. My doctor works well with me she is dumbfounded as well.

[CaptainBeOS]

Hi,

As a total thyroidectomy patient on Levo alone your TSH should be in the 0.03 - 0.3mU/L range to achieve a euthyroid state. References below.

Your last result was in this range.

On Levo mono therapy you have to ignore fT4. It will never be in range. As per greygoose fT3 is the important factor. Where it needs to be is a completely individual thing, but most people I encounter like it in the top half of normal range.

Levo mono therapy will cause palpitations. Fact of life. (It will cause lots of other problems too, like cramps, insomnia and shakes ) Standard treatment is Beta blockers.

If you don't want to go down the beta blocker route then you need combination therapy or NDT, noting that NDT can be combined with Levo *. Once you go down that route you can expect to achieve more mid range levels of TSH and fT4.

* Combining Levo and NDT is something I have direct experience. For instance the fT3 result I get from 150mcg Levo can be achieved with 1.5 grains NDT + 50 mcg Levo with all bloods mid range and the benefit of no side effects. This sort of combination alleviates doctor's fears about over medicating on T3.

For reasons little understood to science increasing fT3 levels and dropping fT4 levels improves cardiac output and reduces heart rate... (to a point and then it starts going back up again). See pubmed.ncbi.nlm.nih.gov/817... for an example of related research.

That is to say there is a magical sweet spot, which occurs when your fT3 is in that top half of that reference range.

With T3 mixed in to your hormone intake you can also work on improving your circadian rhythm. thyroidpatients.ca/2020/07/.... This basically means taking the larger part of your T3 dose in the evening. Getting this right can help with cortisol levels and sleep, which in turn helps with healing and general well being.

References:

See e-enm.org/upload/pdf/enm-20...

Key paragraph:

"In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]."

Reference 48 is:

Ito M, Miyauchi A, Hisakado M, Yoshioka W, Ide A, Kudo T, et al. Biochemical markers reflecting thyroid function in athyreotic patients on levothyroxine monotherapy. Thyroid

2017;27:484-90 e-enm.org/upload/pdf/enm-20...

[Brightness14]

HI sorry to hear your problems. See above for good answers to your woes. I had my TT back in 2015. I was put onto Levo and after six months was feeling so ill, that I couldn't even get up off the floor unaided. I then joined this site and ordered NDT thyroid s. It took me around6 months to 1 year to sort out the dosage. My levels are fine and I feel well too. I am 75 years old. I don't rely on Doctors anymore they just made me ill, they really no nothing about the thyroid or lack of. I take yearly private blood test and sort myself out, easy. Greygoose has some very good suggestions for you. For high BP why not take Hawthorn capsules, in Germany these are even prescribed by the GP's. These have been used for hundreds of years.

[greygoose in reply to Brightness14]

When the OP is optimally treated for thyroid, her BP should come down without the help of medication.

[Brightness14]

I am afraid to say that especially in the US the big pharm companies are all powerful, in fact more powerful than the banks.

[tattybogle]

"stayed balanced for 7 years." What dose were you on then ?

"Then Jan 2021 TSH got to 20.85 before doctor caught it."

assuming dose was increased to 150mcg at this point....

How soon was next test done ?

What were those results ?

"Now we are May 2022 level was 0.001 too low was having AFib. Adjusted again now TSH is 4.85!!! Climbing again?? When level was 0.001 on 150mcq Tirosint dropped to 125mcq level in 2 weeks 4.85 with T4 1.7 no T3 done who knows why. My thing is my TSH is all over the place WHY...."

Two weeks is far too soon to get a true reading of TSH after a dose change... it needs to be tested after at least 6-8 weeks on new dose to see what's a really happening .

if TSH is still is still this high after 6-8 weeks than that suggests that 150 was a bit too much and 125 was a bit too little so the next move would be a dose in between the two ie. 137.5mcg (eg 150 / 125mcg.tablets on alternate days , or 125mcg + half a 25cg tablet each day)

[palberts01 in reply to tattybogle]

When my thyroid level spiraled I was on 125mcq Tirosint (I’ve always taken Tirosint ..a few trials with brand and generic didn’t react well to dyes)?The doctors told me I was not absorbing Ned’s no explanation???? Doctor adjusted to 150meq level barely dropped at 6 weeks to 11.45 then next dose 175meq drop to 5.89 at 6 weeks then upped to 200meq then 6 weeks 0.001 to low causing sweating, palpitations, short of breath. Then doctors dropped 7th dose a week 6 weeks labs exactly the same so dropped to 150meq 6 weeks labs 0.012 made adjustment to 125meq now 2.5week labs 4.85 appointment today see what the plan probably 150meq 4 days 125meq 3 days. I’m just tired weight up and up and up. Hard to walk just want to lose weight and feel better. The doctors have scared me about NDT telling me I will have harder time balancing and worry about over dosing causing even more cardiac issues. My insurance doesn't pay for naturopathic physicians and I’m disabled with limited income. Thank you

[tattybogle in reply to palberts01]

Ah ... ok , that looks to me like your TSH might be taking longer than 6 weeks to get where it's going to settle, on a new dose .I wonder... on the way 'up' if you'd stayed on 150 or 175 for longer than you did ...whether TSH would have continued to fall on those doses and ended up about right ? ....increasing to 200 mcg when TSH was already falling on 175, was perhaps unnecessary ?

And i also wonder if ,on the way 'down' .. if you'd stayed on 150mcg for longer , TSH might have continues to rise a bit more , it you gave it longer . as it had already started to rise a bit from 0.001 to 0.012

I would suggest in future, you make smaller adjustment than 25mcg , and give each dose change longer to settle ie. more like 2 and a half /3 months) rather than 6 weeks, before considering changing dose .

it's too soon to say yet , but i wouldn't be surprised if you end up needing about 150 , or perhaps somewhere between 150 /175.

I suspect my TSH also takes a much longer time to move and settle than it 'should' .. so i'm sure it 's possible that some of us just have rather 'sluggish' TSH .... and if doses are adjusted too soon without taking this into account then you can end up chasing up and down doses forever .. which is not good for anything .

[palberts01 in reply to tattybogle]

Good to know unfortunately I’m at the mercy of the doctors when I start arguing with them about dosing and NDT they don’t want to hear it I’ve been through 5 doctors NONE listen.I even explained when they wanted to see me this soon I was only on 125meq for 2,5 weeks not long enough but if at 2.5 weeks my level climbed to 4.85 can you imagine what it would’ve been like at 6-8 weeks upwards of 10. In the UK your fortunate to be able to just purchase thyroid meds in US have to be at mercy of doctors to prescribe. It helps me a lot to hear from all of you on a path to try and follow. Thank you all

[tattybogle in reply to palberts01]

yes . i definitely wasn't suggesting you stayed on 125mcg for longer as i think it's pretty clear that is not a high enough dose for you (hence TSH ending up at 20 previously, and going up to 4 now ) i was just meaning to slow things down on any future increases so you don't end up over shooting the target again , and ending up back at 200.

We're lucky here to get free appointments / blood tests / & levo from NHS which is nice,... but other than that , most of us here are at the mercy of our doctors too .... i only have NHS GP's prescription ,and don't buy my own meds , and wouldn't be able to afford to see anyone privately ..... but if i'm crafty about it , i find i can adjust my own dose and arrange timings of blood tests to suit me ... to a degree at least .

eg i build up a stock of Levo overtime .....by fair means or foul

...... "oops i seem to have left a full packet on holiday , please can i have some replacements" ...... " oops i seem to have accidentally put in for a repeat prescription a few days too soon" etc etc .... over a long period of time this means i now have 6 months worth of levo 'in hand' at all times.

It's helpful to keep my prescription at a dose that includes some 25mcg tablets , which makes it possible to do my own small dose adjustments when i want to .

if i want to wait longer before testing bloods i might "....unexpectedly be working away from home for a month ... and will contact you for a test when i get back "

If i want to be left alone for a year or more to try adjusting my own dose , i make sure they get a TSH that suits them , so the repeat prescription will continue without question .. and then make sure i don't give them any excuse to take another blood tests for anything at all , for as long as i can get away with . .. and in the meantime , do what i wanted to with my dose to see how i feel . .. without anyone interfering.

[palberts01 in reply to tattybogle]

I envy you .. sometimes I think I know what to do and want to self adjust but It’s awful cause my heart is so so sensitive and wants to cause me grief . Im not trying to sound stern I really appreciate all of the grlp believe me. I feel like a stretchy doll pulled to death not knowing what to do

[pennyannie]

Hello Palberts :

Can I just add that I self medicate with Natural Desiccated Thyroid and it is the most easiest way to medicate my hypothyroidism, caused by RAI treatment for Graves Disease, back in 2005.

I was only ever treated on T4 monotherapy and on a TSH blood test reading and my dose of T4 adjusted to keep me in the TSH range irrespective of the symptoms I was dealing with and offered anti depressants as some sort of consolation prize.

You must be dosed and monitored on your T3 and T4 blood test results and these must be balanced, within their ranges, at around a 1/4 ratio T3/T4 :

A TSH reading is pointless especially when without a thyroid, and especially when used in isolation once on any form of thyroid hormone replacement.

Having been refused the options of T3 and NDT I now self medicate and in my 4th year on NDT and am much improved, have my life back and now longer housebound.

A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

T3 is said to be around 4 times more powerful than T4 and by not replacing that lost when after thyroid surgery you have, in effect, been down regulated by around 20% of your overall wellbeing and whilst your body tries to compensate as best as it can, given time, it can't make up this differential.

The thyroid is a major gland, and the body's engine, and you need full spectrum thyroid hormone replacement.

No thyroid hormone replacement works well until your ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.

Some people get by on T4 only :

Some people find T4 seems to stop working for them, at some point i time, and the addition of a little T3 making a T3/T4 combo :

Some people can't tolerate T4 and need to take T3 - Liothyronine only :

Some people feel their best on Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroid dried and ground down into a powder and made into tablets referred to as grains.

Natural Desiccated Thyroid was the original treatment for hypothyroidism and used successfully for over 100 years and prior to Big Pharma launching their T3 and T4 thyroid hormone medications on the back of NDT in around the 1950/60's.

[palberts01 in reply to pennyannie]

I’ve tried the T3 added that causes me even more unwell feeling I honestly am tired of this up and down crap. How did you switch from synthetic T4 to NDT did you just stop one and start the other any side effects

[pennyannie in reply to palberts01]

I stopped 125mcg T4 one day and started on 1/2 grain NDT the following day and slowly increased my dose in 1/4 grain increments over a period of weeks.

The T4 takes around 6-8 weeks to fully leave the body and in hat time you slowly build up your dose of NDT.

I monitored my blood pressure, pulse and temperature twice daily and whilst my pulse and blood pressure remained constant my temperature slowly rose from 35.4 to 36.6 where it usually hovers every day.

Being in the States I would have thought your options of finding a doctor or more likely an integrated doctor more ' at home ' with NDT treatment somewhat easier than here in the UK.

[Poniesrfun]

A lot of us in the U.S. work with our primary care doc or nurse practitioner for testing and adjusting our thyroid meds. Following TT, unless you need to have your TSH suppressed to avoid recurrence of cancer, TSH is fairly irrelevant - you need Free T4 and Free T3 checked to guide dosing in response to your clinical symptoms. Desiccated thyroid is as standardized as synthetic thyroid hormones so that is not an excuse.Many doctors, including endocrinologists, simply don't understand how to prescribe and monitor NDT. The getrealthyroid.com/find-a-t... site can help you find doctors near you who prescribe NDT. Depending on the state you live in some may be MD's or OD's, while some may be ND's (naturopaths – not all states allow ND's to prescribe meds).

Patti in AZ