Thyroid - How dangerous is it having TSH at 0.01?

[Angie33]

How dangerous is it to have a TSH at 0.01? My T4 is at 10 (range 9-19) T3 mid range. My energy levels are still so low. It's really getting me down.. I just want my life back. As my TSH is very supressed, I can't take more meds. I have asked my endocrinologist if I can increase my T3 (awaiting a response) Previously when on metavive. I was told to ignore the TSH levels. My endocrinologist is mortified I was told this..

[Lalatoot]

Angie Many of us on here have similar TSH levels. It is in my notes that I take full responsibility for my suppressed TSH. My TSH was under range on 100mcg of levo alone and now I am on levo and lio it is not going to ever be in range again.Staring out on levo and lio I still had lots of symptoms. It took me 2 years of tweaking doses to get to a feeling that I needed to stop all changes and see how the body improves on the stable doses I had worked too. The endo started me off on 50mcg levo and 20mcg lio - I am now on 100mcg levo and 7.5mcg lio. The original dose meant that my ft4 was too low in range for me - it was at 0% and my ft3 was at 75%.

Some folks are fine with very low ft4 if ft3 is high in range. I need my ft4 higher. You only find this out by trial and error. If you think you need a higher ft4 then you might consider dropping lio by a quarter of a tablet. This will slightly increase your ft4. Then you could consider raising levo by 12.5 mcg or 25mcg. This will maybe help your symptoms. Your endo may be happy to do this as you are not increasing your dose, you are optimising your hormone levels to try to improve symptoms.

[Angie33 in reply to Lalatoot]

Thank you! That's really helpful. It's just worrying when you hear that a very suppressed TSH can lead to heart issues and osteoporosis. Hopefully by tweaking my T4 and T3 I can energise again!!

[SlowDragon Administrator]

How much levothyroxine and T3 are you currently taking How long on current dose

Do you always get same brand levothyroxine at each prescription

Which brand

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

On T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/3rd of daily dose 8-12 hours before test

What vitamin supplements are you currently taking

What are your most recent vitamin results and ranges

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Do you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies?

[Angie33 in reply to SlowDragon]

Hi, thank you for getting back to me. I am currently on 100mcg levothyroxine and 15 mcg of liothyronine (T3) and have been for almost 12 weeks now.

I just received results of my pituitary gland (cortisol, prolactin, LH and FSH. All good.

I've also had my vitamin levels checked. All good too.

I do sometimes get a strain on my heart, left side of body (lower arm and leg) this eased considerably when I started taking T3 a good 3 months ago now. I started on 5mcg daily.

I enquired about my levothyroxine and I was advised by my GP it's the only type they prescribe and they all have the same ingredients. I stated some have different ingredients. She was unaware.

I am totally at a loss in which direction to turn. I would be happier if my TSH was above 0.01. However, to lower my T4 I will be under the range of the NHS.

I am considering reverting back to metavive. I am just unhappy gauging my own dose! Also the woman who recommends I take metavive said to ignore my low TSH, not important. Endocrinologist was concerned about the advice she gave me about TSH.

[SlowDragon Administrator in reply to Angie33]

Which brand levothyroxine?

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

Some members seem to have more success increasing TSH on liquid levothyroxine (often taken as splint dose half waking and half mid/late afternoon) …..but it’s expensive and difficult to get prescribed

Request trial on liquid levothyroxine from endocrinologist?

What are actual vitamin results and ranges

[Angie33 in reply to SlowDragon]

Hi, thank you so much for replying. Not heard of liquid levothyroxine. Thanks, I will mention this on my next meeting!

[helvella Administrator in reply to Angie33]

Information about all UK levothyroxine products is in my medicines document - both tablet and oral solution (liquid).

If I have it right, you have been taking 100 microgram Northstar levothyroxine. That does contain lactose. But it (and their 50 microgram tablets) are made by Accord.

Some people are fine on the oral solutions. But some find the relatively large quantity of glycerol too much to cope with.

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/shcwdwpedzr93...

From Google Drive:

drive.google.com/file/d/12N...

[SlowDragon Administrator in reply to Angie33]

Are you on lactose free diet?

Northstar is just the box inside are different brands depending on tablet strength

Northstar 50mcg and 100mcg are Accord brand

Northstar 25mcg is boxed Teva brand, lactose free, but contains mannitol

Aristo brand is lactose free and mannitol free. Only available in 100mcg tablets

[Angie33 in reply to SlowDragon]

Hi SlowDragon, interesting you asked me what brand of levo I am on! My endocrinologist and I decided yesterday that I may be allergic to the North Star brand due to the lactose. She stated that he has other patients with heart issues since taking these meds. My T4 is still at a very low level too 10 and range is 9-19. As a result I am just sticking to T3, instead of 15 mcg daily. I will up it to 30mcg and see how I get on. Thanks for highlighting this point!!

[greygoose]

It isn't dangerous at all. That's just what doctors learn in med school, for some unknown reason.

The TSH has basically two jobs:

* it stimulates the thyroid to make more hormone when the pituitary senses that there isn't enough in the blood.

* it stimulates conversion of T4 to T3.

Obviously if your TSH is suppressed, you could have trouble converting, but you really don't need it to stimulate your thyroid because your thyroid can't respond.

But, it has no connection with bones or hearts so doesn't cause osteoporosis or heart attacks. There's been some sort of confusion in someone's mind way back - and he's passed it on to all medical students - between a suppressed TSH due to an over-active thyroid producing to my T3, and a suppressed TSH due to take exogenous thyroid hormone when hypo. But, it's the high T3 that has the negative effects on bones and hearts, not the resulting suppressed TSH.

[Angie33 in reply to greygoose]

That's very interesting about TSH! I am so tempted to increase my T3 meds to (what with being mid normal range) prior to waiting for my next endocrinologist. appt. I am getting pretty desperate to function on a better level, especially as I have to return to the office this week. My brain fog is awful. On a par with my energy levels.

[greygoose in reply to Angie33]

Well, I'd increase it, if I were you. Your endo probably won't like it, but he doesn't have to live with a low FT3, does he. Have you got enough for an increase in dose?

[tattybogle]

To put the answer to "how dangerous is TSH 0.01 ?" into it's correct perspective .

A large , long term study of patients on Levo ,found that there were some increases in associated risks in patients with TSH 0.03 or below .... but these were still less than the risks when TSH was over range ... and when did anybody ever get told off for the "terrible risks" we are taking by having your TSH over range ? ... probably never.

See Fig 2 on this paper for a visual illustration of how much worse these risks are for over range TSH:

academic.oup.com/jcem/artic...

......also, most importantly , that study didn't have any data for what the accompanying fT4 or fT3 levels were... so it's reasonable to assume the adverse events noted were associated with the high FT4 and/ or fT3 levels that were causing the low TSH ... rather than from isolated low TSH in the presence of normal Ft4 /fT3 levels.

Your fT4 is very low at present , and your fT3 is mid range ... so i don't believe you have anything at all to worry about .

Yes , high T4 would be a potential 'issue', and high T3 would be a definite ' issue' ... but "low TSH while fT4 and fT3 are well within range" is 'not an issue' , and i don't think there is an endocrinologist in the country who could produce ANY evidence to prove that it is.

Here is some recent evidence that it does NOT affect bone density:

healthunlocked.com/thyroidu... ( longterm-subclinical-hyperthyroidism-does-not-affect-bone-density-in-patients-having-had-thyroid-ablation ..... )

Also please see my rely to this post :

healthunlocked.com/thyroidu... (3rd reply down) it contains links to several other useful posts on the subject of low TSH /Risk /Quality of Life ...... there is some duplication , apologies for that ) i keep adding to it as new posts come along., and it's got a bit messy )

[purplespottycat in reply to tattybogle]

@purplespottycat tagging so I can read more about this, interesting

[helvella Administrator in reply to purplespottycat]

I suspect you actually meant to Save this post.

Tagging calls out to the mentioned members when the post or response is posted - not after.

And you need to type purplespottycat - see the desired name displayed at the bottom of your reply, and click on it. That turns it blue.

[tattybogle in reply to purplespottycat]

your tag didn't go blue . so i've done it again purplespottycat

To get it it go blue you have to click on the list of names that appears below the post after you have typed @purplespottycat

[Angie33 in reply to tattybogle]

Thank you SO much for the links and for explaining how low TSH is not a big issue if T3 and T4 low or normal. Very comforting. Maybe I won't increase my T3 before seeing my endocrinologist then! I just desperate to gain some more energy from somewhere..

[tattybogle in reply to Angie33]

Desperation is a poor guide to decisions ~Make sure you've waited long enough on 15mcg so your body has chance to get used to the new Status Quo, and can then start making proper use of it. (ie, a few months, rather than a few weeks)

~ make sure you have optimised 'everything else' (Vit D/ B12 /folate /ferritin

~Make sure you (and the endo) understand how to measure your fT3 level (in relation to 'time of last dose' :

if you want to see the brief 'high' point , test 3-4 hours after last dose T3

if you want a realistic idea of the average level throughout most of the day , test 8-12 hours after last dose T3.

~ if fT4 and fT3 are in range, don't worry too much about the TSH. if you think you need to try an increase in T3, then ask Endo to 'trial it ' for a few months to see what happens to your symptoms.

Let him know you are aware of the 'risks' of low TSH , but as far you understand it , you think the risks are usually connected to 'high' fT3 /fT4 levels .

Let him know you are aware of the signs and symptoms of overmedication to look out for.

p.s This recent post may interest you too. healthunlocked.com/thyroidu... (are-the-risks-of-stroke-or-atrial-fibrillation-real?)

[Serendipitious]

Angie33,

Not saying it’s dangerous, I don’t have much information about that but there’s additional logic to this.

Taking exogenous thyroid hormone/glandulars can inhibit the natural feedback mechanism production, for some people, not all, this means their TSH goes well below the reference range.

When you take exogenous T3, your TSH can plummet to near 0, because your body will recognize that there is already so much T3 in your system, that it has no need to produce any on its own.

This results in significantly lower absorption of iodine, via the sodium iodine symporter expression to pick up iodine from passing blood supply. Thus a low TSH over a period of time results in reduced iodine absorption by the thyroid.

So your thyroid essentially goes to sleep for the duration of time you are “over medicating”.

The HPT axis has an intricate connection to the HPA and HPO axis (hypothalamic, adrenal, thyroid & ovarian), which can result in depleted metabolic reserve and physiological resilience.

ncbi.nlm.nih.gov/pmc/articl...

vivo.colostate.edu/hbooks/p...

[McPammy]

Then NHS Endocrinologists insist on it being a suppressed TSH for some patients. My sister had thyroid cancer. Her situation is that she is over medicated on Levothyroxine T4. They won’t prescribe Liothyronine T3 to her. She’s had suppressed TSH using Levothyroxine T4 now for over 8 years. She has never been warned by her NHS Endo of any dangers being suppressed. However, she is tired all the time. Over weight. And her joints are painful constantly. She’s 66 and is still working… just. I’ve tired to convince her to go private and get some T3 and reduce her Levothyroxine but she doesn’t want to and will only believe in her NHS Endo. So, it’s one rule for one patient and another for others within the NHS.I do know her TSH must be suppressed to stop any return of cancer. But surely it could be treated with T3 to achieve that result and she’d feel better I’m sure also.

[Angie33 in reply to McPammy]

Oh gosh, I am so sorry to hear about your sister. It's such a minefield all this. So much conflicting advice from specialists. I live in Aberdeen. I have to pay for a private prescription of T3 as the Grampian health Board will not prescribe it to anyone. Thankfully my endo is in Edinburgh! My T3 comes from Germany and it's harder to get hold of since brexit. Not cheap either!

[Lilian15]

My personal opinion is that you can try going to 20mcg T3. A good endocrinologist (one who actually said I need T3) told me T3 should be in the top quarter of the range. TSH is a pituitary hormone, good for first diagnosis, but should really be ignored once you are on medication. T4 is the storage hormone, so if you are getting sufficient T3 there is no need to have a high amount of T4. My doctor wanted my TSH to rise (it has been 0.01 for consistently since taking T3 for many years now) Tried it, my T3 went below range, my T4 went below range, I was in the pits of hell, but my TSH sat happily in the middle of the range. Doctor all smiles to see my TSH in middle of range, could not care less how I feel. She reckoned it could not be thyroid because it is now in the middle of range. That I am the walking dead and severe pain is obviously (in her eyes) due to some other cause, but not one she is prepared to delve into except to give me pain killers and hope it will go away. I am fed up with ignorant doctors messing with my life and keeping me ill so my body will conform to, what has to be, faulty research. I went straight back on my 50mcg T3 and 100 T4 and I am back to my old self again, pain free, can concentrate, no longer the walking dead.

[Angie33 in reply to Lilian15]

I'm so sorry to hear about your journey too! I agree, all Dr's want to see are the figures mid range. They don't care about how we feel.

I am at my wits end with all this. I just want my life back. Tired of feeling I just exist.

I did get my pituitary gland tested, all seems fine. However, my T4 is still very low and TSH 0.01. My T3 mid range. However, I have upped my T3 from 15 mcg daily to 20 mcg as of today. Ideally I really need my T4 to increase above 10 (range 9-19) However, if I increase my T4 my TSH will be untraceable. It's such a juggling act isn't it. I do hope we can all find the answers to our problem. I often wonder if it is my adrenal glands but my cortisol levels came back normal. My endo will no doubt be very unhappy with me when I speak to her in a weeks' time. Interesting what some people are saying about staying on the same dose for a few months before altering dose. I've been on this dose for a good 2 months now. Until today! See what happens...