Very high TSH

[Ecomask]

Hi everybody so what do you think of this. If you have seen my previous post I said I have stopped all meds at my endos request she asked me to stop for a week then get retested. I was a little concerned I may become unwell but after one week I felt fine and due to work commitments and available appointments it was 3 weeks before I got another test. I have to say I still feel fine and if anything a little sharper. But these are my results TSH 21.31 range 0.40-5 T3 2.57 range 3.45-5.28 T4 5.5 range 9.0-19.0. I don’t understand why I don’t have any symptoms.

[SeasideSusie Remembering]

Ecomask

But these are my results TSH 21.31 range 0.40-5 T3 2.57 range 3.45-5.28 T4 5.5 range 9.0-19.0. I don’t understand why I don’t have any symptoms.

I'm pretty sure they'll catch up with you soon, your results are very hypothyroid.

Reading through your previous thread again, it's pretty obvious your endo doesn't have a clue. One of your replies said:

she doesn’t know how to manage it and she had never prescribed it before

She's using you as a guinea pig.

[SlowDragon Administrator]

Suggest you email Dionne at Thyroid UK on Monday for list of recommended thyroid specialist endocrinologists...private list and NHS

[e-mail]

You will probably need to go private to get seen quickly

Your results show you are profoundly hypothyroid

It’s well known phenomenon that initially patients can often feel very well when stop taking replacement thyroid hormones.

But this doesn’t last and either get slow steady decline into hypothyroidism and eventually myxodema coma

Or some people become extremely unwell pretty quickly.

I can vouch for the second experience. Became so ill after about 2 weeks with no levothyroxine, they thought I had brain tumour or MS or some weird muscle wasting disease. Took months to recover

Ask GP to test vitamin D, folate, ferritin and B12. Likely extremely low

Have you started back on levothyroxine?

[Ecomask in reply to SlowDragon]

No I’ve not started back on Levo I’m waiting for the endo to call. I’m sure she will because even though she doesn’t know about T3 she is very concerned for me.

[SlowDragon Administrator in reply to Ecomask]

But endo not knowledgeable enough to have tested vitamin levels before starting T3

Or to advise only starting very slowly on T3.

(Starting dose Maximum of 2 x 5mcg and retest after 6-8 weeks)

TSH will almost always become suppressed when taking any dose of T3

Have you had coeliac blood test

[Ecomask in reply to SlowDragon]

To be fair to the endo I have pushed and pushed for this she has worked with me but admitted she had little knowledge of T3. I had problems with testing because of COVID 19 and the lock down I didn’t want to go to hospital for blood tests then they said I didn’t need to. It was a bit of a mix up really then when I was eventually tested she got in touch very concerned as per my last post.

[SlowDragon Administrator in reply to Ecomask]

When on T3 we usually have to organise our own private testing including Ft3 and vitamins. Rare to get proper testing on NHS

Fortunately private DIY finger prick test been available right through pandemic

Probably need to start back on levothyroxine ASAP ...perhaps at 75mcg ...build back up to previous dose slowly. If 75mcg is ok...after a week or so, up to 100mcg

Testing after 6-8 weeks on each constant unchanging dose

Getting vitamins tested regularly is essential too

Good conversion of Ft4 to Ft3 needs good vitamin levels.

Likely vitamins are terrible at moment

Even when on good levels of levothyroxine, we frequently need to supplement virtually continuously to maintain optimal vitamin levels

Come back with new post once you get vitamin results

Many Hashimoto’s patients need to be strictly gluten free before trying T3

[tattybogle in reply to Ecomask]

It's nice that you feel emotionally supported by the endo. And it's nice that she was brave enough to let you try T3 when she's obviously inexperienced in it, and presumably under peer pressure not to prescribe it.

BUT.... what about your body in all of this ?

Human 'feedback loops' like HPT and HPA axis' are constantly shifting heaven and earth to balance out everything they are lacking/producing / experiencing in order to keep you alive.

I am concerned that your hormone balance mechanism is being abused here, with having to figure out all these extreme changes.

i'm relieved you don't feel bad yet....but i'm a bit worried you are being kinder to your endo than you are to your endocrine system.

Hope you get back on some sort of thyroid hormone replacement, with more experienced guidance soon, your latest results are showing very hypothyroid .

I get that you don't feel unwell yet, but TSH is a complicated thing in how it reacts. You need to take how you feel AND blood levels into account, and i don't think you should ignore a tsh of 21 and grossly under range FT3/FT4.

My gut feeling about your last post was that it was unnecessary and probably unwise to totally stop all meds, i thought just a reduction was needed. I think that these results show that view to be right , as now they have swung wildly the other way.

Body systems are always trying to achieve stability. She is swinging from over to under correcting yours. It wont like it.

Best Wishes and a (((hug)))

Tat

Ps. oh dear me, i've just rear that back ,and i sound like my mother

[Ecomask in reply to tattybogle]

Thanks for the advice and concern and your mother sounds very sensible 😁 I’m sure the endo will phone in a couple of days.

[Ecomask in reply to tattybogle]

To be honest I’m sick and tired of all of it. I’ve been trying to feel better for the past 4 years all the time under the control of the doctors then the endos. Blood test after blood test after blood test but still not feeling right I always feel I’m one dose away from feeling better then they stop the meds because of my TSH they’ve broken veins they can’t get my blood 🙄🙄🙄 I’m very patient and am not afraid of needles but one time 3 people tried 5 times, it’s all the going to the docs and hospital it’s all time and I’ve not been someone who goes to the doc. Soz rant over I was thinking I’d try NDT or metavive but I feel that will be a whole new battle. Thanks for the wishes and the hug 😊

[tattybogle in reply to Ecomask]

I know what you mean, It's bad enough having an uninvited disease playing around with your life, but when you've got doctors joining in taking decisions and being in charge of what you are 'allowed' that's almost worse than the disease , makes you feel like doctors are in charge of your life not you.

I think that's why i've started feeling mentally better since getting my records, and knowing enough about the subject to say 'no' to a doctor, it's like reclaiming some control over what's happening to you.

It feels a whole lot easier to handle everything since i did that. Last conversation we had he said 'how much do you want to take ?'......I'm still not able to do much, other than potter about and exist and be happy, and i don't know how much better thing's will get to be honest, but it feels a damn site better knowing these are MY decisions to make and i'm responsible for the consequences.

[SlowDragon Administrator in reply to Ecomask]

Looking at first few posts 2 years ago

High antibodies confirmed Hashimoto’s

B12 was on the floor.

So low you probably needed B12 injections

Can’t see you have ever had vitamin D tested ?

No coeliac test either ?

Hashimoto’s is as much a disease of the gut as the thyroid

We have to get all four vitamins to good levels. But endocrinologists only test and treat for deficiencies.

Post from 2 years ago

healthunlocked.com/thyroidu...

I was on 125 levothyroxine and was feeling better and was thinking its working, unfortunately my January results flagged up that my TSH was now too low 0.25 FT4 was 12.3 and FT3 3.88 the lab questioned was I over medicated and the doctor told me she had to reduce my levothyroxine she reduced it to 112.5 now my latest results on the 17th of April are TSH 0.54 FT4 12.9 and FT3 2.3 the report points out that the FT3 range has changed from (2.60 - 5.70) to (2.89 - 4.88) either way my FT3 is now out of range and low. I'm not sure what this means and what I should do next. I know you usually ask about B12 and I have had that tested as well in June 17 it was 151 (150 -650) November 17 it was 325 and April 18 it was 315. I am taking cyanocobalamin 100 mcg each day

ManyHashimoto’s patients , when correctly treated have suppressed TSH. Looks like you may be one. Though this may improve if all four vitamins are optimal. Both January and April results show under medicated.

Getting vitamins tested imperative

vitamindtest.org.uk

nutris.viapath.co.uk/pages/...

[cjrsquared]

You probably don’t have overt symptoms presently as your adrenal glands will be working like crazy to keep things stable. You are very likely to ‘hit the wall’ and crash quite soon. It can then be quite difficult to stabilise levels as the adrenals can take some time to down regulate, resulting in symptoms that can be mistaken as hyper or over medicated, once you commence thyroid replacement treatment.

It is always recommended that thyroid replacement is started cautiously if any chance of adrenal insufficiency. I hope your endo contacts you soon and that she might be amenable to discussing with more knowledgeable colleagues the correct way forward. Good luck.

[SlowDragon Administrator in reply to cjrsquared]

cjrsquared

Excellent description of how adrenals try to “take up the slack”

once adrenal exhaustion sets in it’s extremely difficult to correct and can be very long slow recovery

[Ecomask in reply to cjrsquared]

Thanks for the info and concern.