Suppressed TSH

[AppleOrchard]

I had an appointment with an NHS endo. He’s agreed to give me 10mcg of T3 but he says I’m over medicated.

He says he doesn’t like that my TSH is suppressed because of heart failure, strokes, osteoporosis etc. I told him that since I started having UAT in 2004, my TSH has always been suppressed. I told him Dr Toft was fine with that. He said that Dr Toft was “old school”. He said he’s not happy with my TSH the way it is

I need to come back to him with why it’s okay for my TSH to be suppressed. Please can someone help. Thank you very much

Added to say:

Current dose -

T3 12.5 mcg

T4 100 mcg

And the doctor said that my surgery in a few weeks will be postponed because of my TSH

[SeasideSusie Remembering]

AppleOrchard

He’s agreed to give me 10mcg of T3 but he says I’m over medicated.

That begs the question why is he willing to prescribe T3 then? It doesn't make sense.

With FT4 91%through range and FT3 76% and your T4:T3 ratio being 3.57 : 1 (21.1÷5.9) where good conversion takes place whrn ratio is 4:1 or less then I'm surprised he is considering it.

[AppleOrchard in reply to SeasideSusie]

I have edited to say my current dose

T3 12.5 mcg

T4 100 mcg

I should also have said that I’m having an operation in a few weeks and the doctor said it would be postponed because of my TSH.

[SeasideSusie Remembering in reply to AppleOrchard]

Oh, what you originally wrote sounded like you were just taking Levo only so that's what my reply was based on.

[AppleOrchard in reply to SeasideSusie]

I’m sorry - my brain is really not in gear at the moment.

[SlowDragon Administrator]

T4 - 100mcg

T3 - 18.75mcg

Current dose

As you are currently on Levothyroxine and T3 it’s hardly surprising TSH is suppressed

You need vitamin D, folate, ferritin and B12 tested

Is endocrinologist doing these

[AppleOrchard in reply to SlowDragon]

Thank you for mentioning my dose. I should have said. I have edited it and also added in that I am having an op and the doctor said it would be postponed because of my TSH.

My TSH has always been suppressed - even before T3.

I am not sure about thé vitamins. I can e-mail the secretary and ask.

[SlowDragon Administrator]

There’s nothing on your profile

Couldn’t find any info on cause of your hypothyroidism

Do you have autoimmune thyroid disease- hashimoto’s

Or post thyroidectomy or RAI

[AppleOrchard in reply to SlowDragon]

I don’t have Hashimoto. It’s been checked several times over the years. No post thyroidectomy either. According to Dr Toft my thyroid just didn’t work for whatever reason.

[SlowDragon Administrator in reply to AppleOrchard]

Have you had BOTH TPO and TG antibodies tested

Or ultrasound scan of thyroid

20% of hashimoto’s patients never have high thyroid antibodies

Many members have had operation with suppressed TSH

You need to show anaesthetist your Ft4 and FT3 results

[AppleOrchard in reply to SlowDragon]

I have definitely had TPO done and the result was 2 (0-9). I don’t know about the other one. I could ask him if that’s one of the tests he’s doing.

I asked him about an ultra sound and he said it wouldn’t show anything ….

[buddy99 in reply to AppleOrchard]

My TPO is normal and my Tgab is high, but initially I was diagnosed by ultrasound which showed a very atrophied thyroid. I had doctors who denied autoimmunity (in fact any thyroid involvement in my symptoms), definitely before ultrasound (all of them), and later those who did TPO ONLY also denied autoimmunity after I had already been diagnosed. All three diagnostics are important and were usually performed in the order of TPO, TGab, ultrasound. When the first is negative, the next is employed and so on. Some docs do all at the same time, depending on whether spending money on tests is influencing the decision.

[AppleOrchard in reply to buddy99]

I thought I had replied to this earlier. I’m sorry I didn’t.

I’m not sure why the doctor doesn’t think the scan would show anything. I have never had one. I have been UAT since July 2004.

I’ll ask any the other tests. I got the impression he’d rather I sit there and say nothing. I don’t think he liked me asking questions and not just accepting what he was saying. I’m probs let the kind of patient he dislikes the most. Thankfully not all doctors are like that.

I was so lucky with Dr Toft. I was with him from January 2005 until he retired in 2018 minus a couple of years in 2009.

[buddy99 in reply to AppleOrchard]

Welcome to the club of "most disliked patients".

[shaws in reply to AppleOrchard]

On your personal page, (i.e. click on your name and it takes you to your 'page') where many of us have put our background up to when we have finally been diagnosed.

This enables members to first read our background of how/when diagnosed and medication and we don't have to repeat it often.

[AppleOrchard in reply to shaws]

I have been meaning to do it for a long time. At the moment I have too much on my plate and in my headspace. As soon as I get a break, I’ll pen something down. It’s certainly a good idea.

[Debon in reply to AppleOrchard]

I am the same. It took me years to find an endo who doesn't care about TSH. She monitors me with the hormones. She told me that sometimes the communication from and to the thyroid just doesn't work.

[Jazzw]

It’s quite often the case that anaesthesiologists are much more knowledgeable about this stuff—if you show the anaesthetist your FT4 and FT3 results there’s a good chance they won’t freak out about the TSH.

[AppleOrchard in reply to Jazzw]

I had a GA just recently and I wasn’t asked about my results. The op was meant to be short, 30 minutes. This one is far longer at three, possibly more, hours. Hopefully all will be okay. Thank you!

[littlecandle]

I've had operations with suppressed THS and this has never been mentioned even in passing. Your endo is talking out of a hole in his hat. Unless he is performing the operation, it has nothing to do with him.

[AppleOrchard in reply to littlecandle]

That’s what worries me! A few things he said didn’t ring true. Why are the vast majority so inadequate? I really don’t think they know what they are doing. And he spoke so confidently. I told him I’d just had a GA and the anaesthetist didn’t even mention it. So he dropped it!

[csj113]

Agree anaesthetist not likely to care (unless you’re v hypo or hyper, which you’re not) - I’m married to one. Though might depend on what your surgery is?

[AppleOrchard in reply to csj113]

Thank you for your comment. It’s reassuring. I’m having surgery to remove a cholesteatoma and then rebuild the inside of my ear. The surgery will be around three hours depending what the surgeon finds.

Thank you again.

[shaws in reply to AppleOrchard]

I wish you a speedy recovery .

[AppleOrchard in reply to shaws]

Thank you very much! Hopefully it will be.

[annca1 in reply to AppleOrchard]

Good luck.

[AppleOrchard in reply to annca1]

Thank you!

[rick2525]

I am 3 months into a trial with T3. My latest Blood test shows TSH as 0.09. Prior to T3 medication it was 1.19. I emailed Endo with results I sent my latest blood test to Endo last week and he commented that the blood tests look reasonable. So I take that he has no concern with TSH suppressed. I was due an appointment with him this week but hes been signed off 2 weeks himself due to accident.

[AppleOrchard in reply to rick2525]

I also think it’s a non issue. But it’s getting him to see that. I’d like to find some evidence that I can present him with.

I hope your trial is going well.

[rick2525 in reply to rick2525]

Hi Apple Orchard. On the leaflet with my T3 it lists possible side effects. It advises if you have any of the following you may need a dose change....ie decrease....not stopping altogether. If you dont have symptoms you should be fine. Not everyone gets the symptoms.Possible side effects listed.

Vomiting

Insomnia

Fever

Intolerance to heat

Tremor

Allergic reactions

Angina pain

Heart palpitations

Muscle cramps

Diarrhoea

Restlessness

Headache

Sweating

Loss of weight

I have had loss of weight 5lbs in 3 months....but I also lost weight on Levo...

Sometimes you get one or two symptoms I find until your body gets used to the new meds.

[AppleOrchard in reply to rick2525]

Thank you! I have had weight loss too. It started when I began taking T3 but has continued because of the problem I’m having with my ear. Feeling unwell a lot of the time, and in pain has significantly decreased my appetite. Hopefully once the op is done, it’ll go back to normal.

Thank you again.

[Coppernob]

The man's an ignoramus. Plenty of evidence to disprove those outdated ideas about heart damage etc with T3. And you're only taking a smidgen anyway!

[AppleOrchard in reply to Coppernob]

I think he may well be! I have looked for evidence but I can’t find any. Do you have a link or somewhere I could look? Thank you! If Dr Toft had ever suggested there was an issue, I’d think differently. But he was happy with my TSH.

Thank you!

[Coppernob in reply to AppleOrchard]

I'm afraid I don't have any evidence links to hand but I'm sure one of the administrators will. Or a file in a T3 Support FB group.

[AppleOrchard in reply to Coppernob]

Thank you - I have an explanation below and I’ll look as well to see what else I can find.

[diogenes Remembering]

The action of T3 and T4 on the pituitary and hypothalamus is roughly 50/50 for a healthy person. But since there's only about 1/3 the amount of FT3 compared with FT4, this means that one molecule of FT3 is 3 x more active than one molecule of FT4. Thus, if FT4 diminishes owing to thyroid loss, the more active FT3 takes over, and being more active suppresses the pituitary more than usual. This will happen with patients on combination or T3 therapy.

[AppleOrchard in reply to diogenes]

I understand what you have said. Thank you for explaining it to me. It makes sense. I would love for the doctors to be more clued up. They really aren’t. It seems to be up to the patient to find everything out on their own.

Thank you for your explanation.

[Persevere99]

Hi

My TSH is always rock bottom at 0.1 or so.

I’m on 100 Levo (nhs) and 12.5 T3 (self sourced)

My FT3 is 6.0 (3.5-6.8)

And FT4 16 (9-22)

Anyway, numbers don’t count. I feel sort of ok on the above.

How do you feel?

Persevere99

[AppleOrchard in reply to Persevere99]

It’s hard to tell at the moment because of the problem I am having with my ear. The main thing for me is my voice and it’s not okay.

I do wish the doctor would do an ultrasound of my thyroid. I’m sure it’s all money driven.

I’m glad you feel reasonable.

You’re on the same dose as me - although I was prescribed 10 mcg. So now I’m on that.

[Hypo32 in reply to Persevere99]

can I ask - were you on 100 Levo when you started on the self sourced t3 or did you reduce it? I want to start but I am nervous about how to go about it.

[AppleOrchard in reply to Hypo32]

I was on 125 mcg and I reduced it to 75 mcg. That was too much so I went back up to 100 mcg.

Perhaps you could post your latest results on here and see what comes back from that.

It’s a good thing to research and see the best way to go about it. Ask lots of questions. This forum is extremely knowledgeable and everyone is very friendly. It’s been so great to be able to get support.

[Persevere99 in reply to Hypo32]

Hi

I just added 12.5 T3 to the prior 100 Levo dose, 3 months ago.

I know some say start at 5 T3, or even 2.5, but no way can I cut my 25 T3 tabs into less than half, as it crumbles if you go on to cut it in quarters.

All the best

Persevere99

[SlowDragon Administrator in reply to Persevere99]

easy to cut tablets into 1/4’s with sharp craft scalpel

scalemodelshop.co.uk/10pk-n...

[Persevere99 in reply to SlowDragon]

ok thanks for that, I’ll get the ool

Any thoughts on the pm I sent yesterday please ?

Persevere99

[AnaIsabel17]

Hi. Search about l-carnitine and acetyl l carnitine. patient.info/forums/discuss...

It worked for me. But be careful with acetyl l carnitine, because you could end up being hipocarnitine.

[AnaIsabel17 in reply to AnaIsabel17]

If you start with acetyl l carnitine you should check your ft3, ft4 and especially your tsh every four weeks.

Acetyl l carnitine Drive muy tsh into normality.

[AnaIsabel17 in reply to AnaIsabel17]

You could end up with hypothyroidism I mean

[tattybogle in reply to AnaIsabel17]

Analsabel17

i think you have misunderstood .... Apple Orchard is taking T4 and T3 ... if she wanted to raise TSH by lowering T4/ T3,, she could just lower the dose she takes .

So there is no need for her to try (acetyl) L carnitine to lower her T4 / T3 in order to raise TSH ~ the reference you give is discussing it's use for treating hyperthyroidism. (ie. patient's whose own thyroid is over producing T4/T3)

patients like Apple Orchard , whose TSH is low in response to taking the dose of thyroid hormone that they need to feel well are not necessarily overmedicated ,and are not hyperthyroid .. so (acetyl ) l carnatine is not necessary or appropriate .

[AnaIsabel17 in reply to tattybogle]

Thanks. I thought it could help her, anyway, I told her to look into it.

[AppleOrchard in reply to AnaIsabel17]

Thank you very much. I can look into it but I’d feel very wary even considering something like this! I’m not that bold.