Very suppressed tsh, on T3 10, years - Thyroid UK

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Very suppressed tsh, on T3 10, years

45 Replies

HelloThese are my medichecks blood test results. Dr is trying to send me to endocrinologist because of severly suppressed TSh.

Bloods done 11am. (Should of been 9am)

TSh 0.007 ref 0.27 - 4.2

FreeT3 4.8 ref 4.1 - 6.8

FT4 0.5 ref 12 - 22

I'm on T3 only and my tsh is always suppressed to this level more or less.

Am I in any danger. Because I feel alright.

And understand that t3 does suppress tsh.

I will repeat bood tests earlier next time.

I appreciate all your help and advice .

Many thanks 😊

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45 Replies
greygoose profile image
greygoose

Having the test earlier probably wouldn't make much difference. But, no, you're not in any danger. Your TSH is suppressed because you don't need it.

How much T3 are you taking? Because your FT3 is only 45.95% through the range, which isn't very high. Most hypos need it higher than that. So, how do you feel at that level?

in reply togreygoose

Hi there I'm taking 62.50 mcg split into 3 doses, 25mcg 7am 25mcg, 1pm 12.50 mcg 4pm, for years and years but in the last 6 to 8 months or so i'm feeling miserable, moody cow, cold hands feet of a night, Puffy across my eyebrows and forehead, crash nap at 5pm after I've cooked hubby's dinner, then I leg it out the kitchen and drop on the bed and sleep an hour. My hairs thinner, fluid retention on lower legs, joint pains in balls of feet, painful to walk, puffy fingers and painful fluid in finger joints. Same pain in my shoulders. Pins and needles in wrists and slight numbness in hands. Feel like I've gone back 20 years or more. All these symptoms came on the last 6 months or so with brand change.I have had free t3 around 5.6 whilst on same dose and felt great. But I am on a different liothyronine, its what the chemist gave me. Nothing else available apparently.

I'm hypo aren't I.

I woke up this morning at 7am and my heart was racing but calmed right down after a 25mcg t3.

Tell me your opinion greygoose.

If they think they'll get me off t3 then I'll never go back to them.

Thank you so much.

greygoose profile image
greygoose in reply to

It would appear that that brand of T3 doesn't agree with you. Your results aren't hypo, but the FT3 is not good. Perhaps you should increase your T3 a little.

What brand have they given you, and what did you used to have?

in reply togreygoose

I was good on pfizer cytomel for many years but they've now given me Ace pharma., doesn't feel good

greygoose profile image
greygoose in reply to

I don't know that one. Can you not get the one you want from a different pharmacy? Pharmacists really don't understand that you can't change brands like that. They say it's all the same thing. Well, the active ingredient is the same, it's T3, but the fillers vary, and affect people differently. I would have thought that with their training, they would know that.

in reply togreygoose

I mentioned it to my gp and was told I'm lucky to get what I get. I'll ask around.

Thank you

greygoose profile image
greygoose in reply to

That is disgusting! For once, words fail me.

in reply togreygoose

I think it's appalling how we get treated at times with thyroid problems.

greygoose profile image
greygoose in reply to

Certainly is!

Zephyrbear profile image
Zephyrbear in reply to

Wow! And these clowns are responsible for our health…

in reply togreygoose

Yes, sounds right. Do you think I should increase by a quarter or half. Of a 25mcg pillThank you again

greygoose profile image
greygoose in reply to

Oh, only ever a 1/4 at a time, never more.

in reply togreygoose

Thank you 😊

greygoose profile image
greygoose in reply to

You're welcome. :)

jimh111 profile image
jimh111

How long did you leave between your LT3 dose and having the blood taken? Leaving too long can give a false low fT3.

TSH does give a good indication of thyroid status in most people but not if your pituitary is underperforming. So, a very low TSH can reflect risk but it depends on individual circumstances.

in reply tojimh111

Hi what kind of risk

in reply tojimh111

About 14 hours.I've Hashimotos after my child's birth became hypo 30 years ago

jimh111 profile image
jimh111 in reply to

14 hours is fine. Potential risks are atrial fibrillation and possibly osteoporosis.You could try taking your larger dose at bedtime, I find it helps get good deep sleep and I feel better.

in reply tojimh111

I've always thought about that but never tried it, but when I do take My 7am 25mcg dose I start feeling relaxed and better than the sleep I've just had. If it's a Saturday I'll sleep in abit and I get a good rest after the 7am t3. Maybe I'm stressed. Thank you .

in reply tojimh111

I'm going to try get my other thyroid brand back. Makes sense like grey goose suggested.

Judithdalston profile image
Judithdalston in reply tojimh111

I thought we were suppose to ignore dr’s threats re. AF and osteoporosis… my TSH comes back as 0.02 with steady combo dose ( 100/15 mcg ) and generally c.50% FT4 and FT3 c.40%. Touch more T3 does send FT3 up, but TSH down to 0.01. My endo likes it above 0.03 but if I do that by reducing either hormone I get Frees in 30%. I do have odd Long Covid BP ( bad hypertension at rest, but bad hypotension after standing 8 mins according to tilt table test) but no AF but am getting the 3rd degree re negligible TSH. Any thoughts?

jimh111 profile image
jimh111 in reply toJudithdalston

We shouldn't ignore it. For most patients (and the general public) a very low TSH is associated with risks.

Sometimes TSH is low because the pituitary is underperforming in which case the above doesn't apply.

In other cases patients can't get better without doses that suppress TSH, so they are at risk. This can't be helped, it happens throughout medicine where a therapy carries risks but it is better than no therapy. I'm in this situation. The best you can do is accept there are risks and try to mitigate them by e.g. doing regular exercise. Certainly in my case and no doubt many others having a very low TSH and being able to get around and exercise is much better than not. Usually the option of not treating the patient carries substantially greater risks.

For patients on levothyroxine a mildly elevated TSH carries much more risk than a low TSH. Doctors never point this out.

Judithdalston profile image
Judithdalston in reply tojimh111

Sometimes it feels like we are participating in some medical form of ‘Top Trumps ‘: TSH tops everything re chronic illness!

Easylover profile image
Easylover in reply tojimh111

TSH is not important. There are more risks associated with low T3. You sound like one of them. We're trying to get well, not go backwards!

Easylover profile image
Easylover in reply tojimh111

I'm sorry for saying it that way. I'm just so frustrated w the medical field. They DO NOT know what they are doing, only a few. The rest are trained improperly by a model that does not work! And because they are ignorant and captured under a false belief system, they Can Not hear our cries and they want to scare us into staying sick!

Easylover profile image
Easylover in reply tojimh111

The other thing is, is A-Fib and osteoporosis are separate diseases. People have AF and Osteo and don't have thyroid disease. They really don't have good studies because they cost too much to conduct according to Dr. Antonio Bianco...who doesn't have it all right either! However, according to Dr. Bernstein from the Diabetes University online, 97% of Diabetes patients also have Thyroid Disease. Go figure?

in reply toEasylover

Yes, good to self educate so as to do our best for ourselves. I have pernicious anaemia as long as Hashimotos /hypothyroidism. The symptoms can cross over. My brother just died from pernicious aneamia in this day and age. I did my best to help him, but his wife was in the way, ignorance. Took him in 4 short years, at 70. Fine strong man and it was insidious. Heart broken.

Fight for our health,

Godbless x

Easylover profile image
Easylover in reply to

I'm sorry for the loss of your brother.

jimh111 profile image
jimh111 in reply toEasylover

I think I have written a balanced comment. It is a real problem that doctors think that hypothyroidism is only caused by insufficient thyroid hormone in the blood. As if every other step between making hormone and its action never fail.

TSH is an excellent feedback of blood hormone status and thus a useful tool. TSH tests save many babies from cretinism. However, the pituitary and hypothalamus have different receptors and different deiodinase mechanisms to other tissues. So, even if the pituitary and hypothalamus are working normally there can still be hypothyroidism. Sadly most doctors, especially endocrinologists, are poor scientists and incapable of applying rigorous logic. As patients we should avoid the same pitfall, a low TSH signals potential risk, it isn’t always OK.

in reply tojimh111

Thank you for your knowledge I take it on board and I very much appreciate what you say Thank you again.

in reply tojimh111

Hi there. Could you tell me please, if you don't mind. I've dropped my t3 dose from 62.50mcg aday down to 50 and a rough cut quarter. I split a 25mcg. So dose will be around 56.25mcg. Reason is I really wanted to see how I feel on less and I want to see if my tsh reduces abit from being so suppressed and if it affects my FreeT3. 4.8. Done this for last 3 days only, but I have another 3 days to go doing this as I'm going to get a medichecks finger prick test this Thursday 29th. So that's 6 days on reduced dose.

I fear they're going to stop or interfere with my dose you see.

I don't feel great but it's bearable. I have been really puffy in my fingers hands and across my eye's. And I get a weird eyelid retraction, as though the fluid is drawing off after my second dose of a 25mcg pill.

I feel like not going to my Dr's anymore for anything. I just can't handle them anymore. No rapport

Many thanks 😊

jimh111 profile image
jimh111 in reply to

I'm not a doctor so bear this in mind. I think it's always good to try and slowly reduce your dose when you are on around 50 mcg liothyronine. Sadly some of us need these sort of doses but doctors can't be bothered to find out why. Your fT3 will come down a little but I suspect TSH will remain around zero.It's difficult because you want 'better' blood test results but you don't want to be disabled and unable to put your case.

in reply tojimh111

Thank you for your reply. I appreciate and trust your opinion. I just wanted your insight. Yes your right I don't want to suffer and cause myself any harm. I just wanted to see if there would be a drop at all in the Tsh. But not at the expense of too much of a drop in Ft3 and feel ill.

I can already feel I need my 62.50 mcg back and I will increase that by a quarter and retest later on again.

I will also some how change this brand as soon as I can

Thank you again. 😊

DippyDame profile image
DippyDame

Goodness, well done for getting 62.50mcg prescribed!

I'm on 125mcg T3-only and my TSH is on the floor.

I have to buy my T3 despite the fact that my well being depends on it.....so try and hang onto that prescription even if it means cutting up a tablet to increase your dose!

Once on thyroid medication TSH is no longer a reliable marker, in any case you no longer need it....I don't worry about it!

I no longer have tests but instead monitor the old way, ...by signs and symptoms which are highly important eg racing heart, fatigue, hand tremors, feeling cold, fluid retention

Have you changed brands....some are said to be less potent than others.

Maybe your body just needs more T3 now! Have you been unwell?

Your symptoms are text book examples of undermedication

So, it sounds as if you need an increase to ....say 65mcg

Or...

Try taking the T3 in a single dose. I take my full dose at bedtime which avoids faffing with clock watching during the day but with the caveat that this may not suit everyone. It can be trial and error

The single dose initially floods the T3 receptor cells then is sent out into the body in waves throughout the day.......ex Dr John Lowe, T3 expert.

Just some thoughts...

in reply toDippyDame

The road to get my meds was 20 years long of suffering, you know that rd we all walk, some get what we need on nhs and some end up in Mexico or Turkey or Greece. All exotic places.

How do you manage getting your t3 yourself continuously. I did get perrigo myself many years ago fom usa but they changed names and I couldn't get it again. But the other day I googled it for curiosity and they sell it in a vets in calafornia, same bottle with same lable, same 25mcg. But Cheap. Can't believe it.

I had to change brands about 8 months ago from my usual because my pharmacy can't get it from wholesalers for whatever reason. I did call the wholesalers many times to push them but depending who answers its like trying to get through to the pentagon, they dont like talking to the public. So I'm on a different brand with weird symptoms. I'll increase a quarter like greygoose suggests. After I get stable Maybe I can experiment a little with a night dose or maybe a single dose.

You all inspire me very much and lift me up. I appreciate the advice and Its great to listen to everyones stories and how you all deal with your thyroid problems.

Thank you all , you're all the best. !!!😁

Transalp profile image
Transalp in reply to

Cytomel seems to have become difficult to source, I have had to change to Tiromel.

in reply toTransalp

Hi, yes I had to wait 5 months, early last year for it and it didn't show up.So now I'm on Ace pharma cytomel but it doesn't suit me at all , I'm struggling.

BB001 profile image
BB001

Might be worth asking your GP if they will write a one-off prescription for CAPSULES so you can try Roma T3.

in reply toBB001

Thank you, do you think they're ok

BB001 profile image
BB001 in reply to

Some people think they are great. I'm allergic to the capsules which are made of pork/ beef.

BB001 profile image
BB001

There is NICE guidance about patients needing specific brands. Does anyone have the link?

RedApple profile image
RedAppleAdministrator in reply toBB001

It's MHRA advice, not NICE guidelines. gov.uk/drug-safety-update/l...

Serendipity__ profile image
Serendipity__

Hi! I understand what you feel so much. And the answer proves over and over again, at least to me, - it’s a brand issue. Greygoose is correct. It is very simple. Even the same ingredients can be sourced from different suppliers and affect absorption differently. So them changing your brand without even considering this is a violation and attack on your health. Been there and it happens frequently. This is why it’s important to have an emergency source of a brand you can get in such cases. I found easily obtainable T3 Tiromel Abdi Ibrahim from Turkey and have so much of it for years to last. Some of the packs are more than six years old and work wonders when my T4 brand stops working again and an immediate solution needed. It is easy to buy.

in reply toSerendipity__

Thank you for your advice and help. I need to buy something to put away too. I can't get my original t3, it's not going to happen. Between the Dr the chemist and the medicine wholesalers it's not happening. I'm mentally strained from it all. I've had hypothyroidism 30 years. I'm glad you have something to keep you going, very wise. 😊

SlowDragon profile image
SlowDragonAdministrator

is your T3 on NHS prescription

Get prescription changed to 20mcg tablets x 3 and 1/2 per day

That gives access to

Teva 20mcg

Morningside 20mcg

Mercury Pharma 20mcg

Or

Roma capsules 20mcg

Though you can’t split capsules to give smaller dose

Suggest you stick to tablets

Easy to cut with sharp scalpel

Current prices NHS pays

healthunlocked.com/thyroidu...

25mcg tablets as “off license special “ will be vastly more expensive

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