Low TSH with normal T3, T4. : Good evening, I'm... - Thyroid UK

Thyroid UK

128,513 members151,092 posts

Low TSH with normal T3, T4.

Minster21 profile image
31 Replies

Good evening,

I'm wondering if anyone else has this problem? I have been tested twice in 3 months:

Results 27 Jul 22

TSH 0.09 (lab range 0.27 - 4.20)

FREE T4 - 23 (lab range 11 - 21.20)

T3 - 5 (lab range 3.10 - 6.80)

Dose lowered from 125mcg a day to 112.5mcg. on Aug 2nd by GP

Tested 22/09/22

TSH 0.19

T4 18

Problem is on 112.5mcg, after 6 weeks, I was sleeping 10 hours a night (used to be 7) and then having to go to bed late afternoon for a couple of hours. I got constipation, not going for up to 3 days, and tingling in toes. Weight was not effected much, but brain was fuzzy and forgetful.

Today a GP told me my dose has to be cut again. My thyroid was ablated by radiation in 2017. I am completely dependent on Levo but they don't seem to listen to my symptoms. I was told if don't want to listen to GP then the appointment will be ended. Also then told if don't take a lowered dose then 'you can live with the risks' but I have risks with a lower dose. It looks to me that my dose would need to be maximum of 100mcg to get TSH within range but my weight is 76.7kg (height 167cm) and whether you use 1.6/kg/day or my BMI range 1.47/kg/day or use my ideal weight (70kg) I still wouldn't get to 100mcg a day.

Also 100mcg would put me around 13-15 T4 and I can't see that being enough.

No appointments at surgery to check pulse or weight, and they aren't interested in hearing my symptoms.

I would be interested if anyone else on complete replacement therapy has had this issue?

31 Replies
Aurealis profile image
Aurealis

Yes I have, but a long time ago, I hoped doctors knowledge might have improved, but it hasn’t.

I used to continue on higher dose and say I’d take the risk. They’re worried about competency accusations

No regrets, feeling rubbish to try to play test result bingo is overrated 😂

Minster21 profile image
Minster21 in reply to Aurealis

I agree with you. Unfortunately this is the second surgery who have done this. It's why I left the last one. At that point I went back to my consultant who was happy with the results and said that in cases like mine they tend to run 'a bit high'. I am very conscious of being heart healthy - low sat fats, exercise losing excess weight etc. which I am all doing. I have asked them to refer me back to consultant. Said I would alternate 125 and 112.5 in the meantime. I have never known a GP who understands this condition, and they have only ever made things worse.

jimh111 profile image
jimh111

During Graves' there can be high thyroid hormone levels, a state of thyrotoxicosis. This can cause the 'hypothalamic pituitary thyroid axis' to down-regulate. In simple terms the pituitary secretes a less TSH than it used to. In about half of cases the axis recovers over time, in other cases it doesn't.

Graves' is caused by TSH Receptor Antibodies (TRAb). These antibodies look like TSH to the TSH receptors in the thyroid, and so they stimulate the thyroid to secrete too much hormone. However, the pituitary also has TSH receptors, it's thought they are to monitor how much TSH the pituitary secretes and make fine adjustments. Unfortunately, these receptors are also stimulated by TRAb. So, for a year or two after a thyroid is removed or ablated these antibodies hang around and suppress TSH. See academic.oup.com/jcem/artic... or perhaps dump it on your GP's desk.

So, we have two reasons TSH can give a false picture in Graves' patients. In these cases thyroid hormone should be titrated to patient symptoms (the most important measure) and fT3 and fT4 but not TSH. Time for your GP to swot up.

Minster21 profile image
Minster21 in reply to jimh111

Hi, I can see what you are saying, but after five years I doubt antibodies are going to be an influence. I thought it could be pituitary issue, but what's the point in suggesting that? I have given up trying to educate GPs. When I first got Graves in 1996 it took them 9 months to even give me a blood test. They assumed I was depressed and put me on Prozac. By the time they did a blood test my pulse was 100, I was off work and I could hardly walk up the stairs to my flat due to muscle wastage. Took years to recover. They test more now but we are now slaves to the test results... I will look at the link thanks.

cbraffe profile image
cbraffe in reply to Minster21

It is very sad. I have a,similar story to your. It rook 8 years to get a diagnosis of graves disease. I was bed bound at the time taking anti depressants and it was only by luck, i ended up in A&E with palpitations, i had lost 3 stones in weight when one of the nurses asked if i had a thyroid condition. To be honest i did not even know then what the thyroid was and its role in the body. I went home and because of what she said the following day i called the GP who was investigations into MS, cancer and ME to ask for my thyroid levels to be check. He was hesitant but sent me for a blood test. The following day, i was called to go to the surgery and to take someone with me. For some reasons the doctor could not believe i could get there on my own. I was put on carbimozole 40mg . The struggle is still on but through this forum i am hopefully. I was also put on 100mg immediately after a thyroidectomy and my dose was not changed for 6 months. I had all the symptoms you mentioned. I wish you all the best

Minster21 profile image
Minster21 in reply to cbraffe

Really sorry you have had to go through this, I hope you continue to feel better and improve. I remember at one point I asked if I could have a blood test for thyroid disease and GP said no, I needed higher dose of anti depressants!

cbraffe profile image
cbraffe in reply to Minster21

Very sad . It is still a struggle. I am now seeing a private endo. Right now my TEDs is back on . O was so poorly 2 weeks ago with advice from here i reduced the t3 does and I am slowly feeling ok. Knowing that there others out there going thru the same and the the advice on here gives me hope

jimh111 profile image
jimh111 in reply to Minster21

I can see your problem but you simply have to persist and perhaps make a gentle complaint to wake them up. By the way, I've 'liked' many of the replies, this is an expression of support, not liking your bad treatment!

Charlie-Farley profile image
Charlie-Farley in reply to Minster21

Hi Minster21

I think this section of jimh111 is the bit you should focus on and print that reference out and forward to your GP prior to the next appointment. Give them chance to save face.

“During Graves' there can be high thyroid hormone levels, a state of thyrotoxicosis. This can cause the 'hypothalamic pituitary thyroid axis' to down-regulate. In simple terms the pituitary secretes a less TSH than it used to. In about half of cases the axis recovers over time, in other cases it doesn't.”

So GP is dosing by TSH and that is no longer the reliable measure. You also need to quote the NHS dosing guidelines. Submit in a printed report to reception who should upload to the Patient access as well as give to your GP. Hard copy is a better method than just speaking. It can’t be ignored- it has to be addressed.

See my last post on how I got to optimal dose whilst in range - my communication was printed, handed in ahead off telecon and then discussed. Also see my profile- it’s there to tell people how I got there from grossly under medicated because I was in range.

jimh111 really good concise explanation- I’m saving this post on the strength of that alone 😊👍

turquoisea7 . This is a good post pennyannie and jimh111 good responses.

SlowDragon profile image
SlowDragonAdministrator

Refuse to reduce dose

Insist GP test TSH, Ft4 and Ft3 together AND vitamin D, folate, ferritin and B12

Low vitamins tend to lower TSH and being under medicated results in low vitamin levels

When were vitamin levels last tested

What vitamin supplements are you currently taking

ALWAYS test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

July results do NOT show over medicated…..Ft3 was not over range

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

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

SlowDragon profile image
SlowDragonAdministrator

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

Minster21 profile image
Minster21

Thanks slowdragon. I had full range of tests in july and used the protocols mentioned. I have no vitamin issues except slightly low vit D, now corrected with supplements. I agree I was not over medicated in July. I have a healthy balanced diet and take a good multivitamin. I don't drink or smoke and exercise on average 5 days a week. I am happy to go with the NHS lab results. Recently the only influence on my dosage is my 5% weight loss since August and I am aiming for 69kg which will put me into ideal weight range and BMI. But GP didn't ask about that and of course it's all on the phone so don't get weighed. I think its back to endo, and I am sure he is going to be pleased to see me back due to GP once again!

SlowDragon profile image
SlowDragonAdministrator in reply to Minster21

multivitamins never recommended on here

Most contain iodine not recommended for anyone with thyroid problems

Please add actual vitamin results

Within range is not necessarily optimal

Vitamin D needs to be at least around 80nmol minimum and around 100nmol maybe better

Have you had coeliac blood test done

Are you on absolutely strictly gluten free diet or dairy free diet

Minster21 profile image
Minster21 in reply to SlowDragon

Thanks. Yes, I'm aware of iodine. There's no iodine in my vit tablet. I'm not coeliac and on any 'free diet'. I have never had any issues before, until recently having my dose lowered.

Minster21 profile image
Minster21

Thank for last link, I can see I am going to have to send these to GP!

Litatamon profile image
Litatamon

" I was told if don't want to listen to GP then the appointment will be ended. "

What a bratty little child you are!

-------

I am so sorry you are going through all this Minster.

Cica77 profile image
Cica77

I wonder if you need some levo replaced with liothyronine (t3) to feel better. That would further reduce tsh and make gp panic again though.

PixieElv profile image
PixieElv

This is typical of Central or secondary hypothyroidism. TSH is of no relevance with this condition. Very few Endos can diagnosis this and GPs are incredulous it exists. It took me 4 years to get a diagnosis and my GP is still fighting me (and my Endo).

Refuse a reduction in Levo. But you may want to ask for your pituitary gland to be checked with an MRI to rule out any nasties?

Other than that it is treated the same way as primary hypothyroidism.

Good luck!

pennyannie profile image
pennyannie

Hello Minster and welcome to the forum :

Graves is an auto immune disease that tends to wax and wane throughout one's life and tends to be driven by stress and anxiety.

The TSH is a totally unreliable measure of anything in Graves Disease treatment post RAI thyroid ablation and you must be dosed and monitored on your Free T3 and Free T4 blood test readings and we generally feel at our best when our T4 is in the top quadrant of the range as this should in theory convert of decent level of T3 as it is T3 that runs the body - not T4 .

The TSH seen is isolation is a totally unreliable measure of anything once the thyroid is ablated by the RAI - your Hypothalamus - Pituitary - Thyroid feedback loop is now broken and on which the TSH reading relies - so your circuit in now incomplete and you must be dosed and monitored of your Free T3 and Free T4 blood test results.

RAI is a slow burn and it can weeks, months, or years for the thyroid to fully be destroyed by this toxic substance.

RAI is known to trash vitamins and minerals which are needed at optimal levels for any thyroid hormone to work well, and suggest you get your ferritin, folate, B12 and vitamin D run and post back here the results and ranges alongside a TSH, Free T3 Free T4 antibodies, and inflammation and if your doctor can't help there are private companies listed on Thyroid UK who are the charity who support this forum who can run these for you.

Primary hypothyroidism caused by RAI thyroid ablation is said to be more difficult to treat.

A fully functioning working thyroid would be supporting you on a daily basis 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.

T4 needs to be converted in the body into T3 the active hormone said to be about 4 times more powerful than T4 and we need high in ranges T3 and T4 to feel well, especially with Graves Disease post RAI ablation or post a thyroidectomy.

Some people can gt by on T4 only :

Some people find T4 seems to stop working as well as it once did and find their health improved adding in a little T3 - to take up for that little bit " lost " after RAI thyroid ablation.

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

Whilst others find their health restored better taking Natural Desiccated Thyroid which contain all the same known hormones as the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains.

You might like to start reading up as you will likely need to become your own best advocate :

For all things Graves and thyroid AI - elaine-moore.com

Another lady Barbara S Lougheed who has Graves and went through RAI ablation - her book title says it all - From Hyper to Hypo to Healing - Breaking the TSH rule :

Your Thyroid and How to Keep It Healthy written by a doctor Barry Durrant-Peatfield to help equip patients better on all thyroid health issues and although we now don't have this amazing little gland we do need to know about basic body physiology and wat we ca do for ourselves to claim back our health.

Thyroid UK have a recommended reading page on their website :

Most current research I have found - ncbi.nlm.nih.gov/pubmed/306...

I too am with Graves Disease and post RAI back in 2005 and fell into this forum back around 6 years ago as experiencing similar to yourself - see my profile page :

Minster21 profile image
Minster21 in reply to pennyannie

Thanks pennyannie. I was fine until GPs started messing with my dose. I agree entirely on what you say -- feedback loop is broken. If T3 and T4 are in range I don't see the problem. My thyroid was fully destroyed in weeks, believe me. I was given maximum radiation dose and they decided not to test me for 3 months. By time I was tested I was so underactive I slept all day, couldn't move my arms without excruciating pain and TSH was off the scale. Had to take 125mcg immediately and took 3 months to recover. I have experienced severe hyper and hypo and I know when I am getting symptoms, but GPs are not listening to patients.

pennyannie profile image
pennyannie in reply to Minster21

Yes, I know as I've been there too - and why you need to become you on best advocate :

Graves is for life, it is an auto immune disease which is poorly understood and badly treated.

There is no cure all that is happened is that you still have Graves but now primary hypothyroid and with a health system that lumps all hypothyroid patients together irrespective of why webecame hypothyroid and a one size fits all treatment programme that is not fit for purpose.

pubmed.ncbi.nlm.nih.gov/338... just for reference -

Though the NHS is still with it's quick fix RAI thyroid ablation treatment option which beggars belief - or maybe not.

Sam3tu profile image
Sam3tu

I've had similar problem where my t3 and t4 were within range but my tsh was low as well...

Although I was feeling well initially I started to develop palpitations and was in ED. When dose was lowered I didn't feel well at all.

It's so difficult getting the dose right without getting side effects 😔

Rymer profile image
Rymer

I have a similar battle with my GP. Diagnosed with underactive thyroid when I was 26 and I am now 70 and for past 40 years have been on 150 thyroxine which worked perfectly for me. In April 21 I got diagnosed with PMR and put on 15 mg of steroids. I eat a low carb diet, take Vit D and have done a slow transition to 6.5 so far and all was well. However about 10 months ago my thyroid results came back as abnormal. Dr said to go down from 150 to 100 which I refused. Second blood test Showing ‘abnormal results’ I agreed to 125 a day. Tiredness but as I am also tapering off steroids it was hard to find which was causing the tiredness. Just had another blood test and advised to go to 100 mg a day. Although it’s only been a couple of weeks the lower dose has making me extremely tired and I am dragging myself around again. I have argued the point that it is coincidental that my results have always been static and fine for over 40 years until I started taking steroids. I am currently in holiday so can’t go back to the Dr to query it . Do you think I should go back to 125? It sucks that we are trying to do the best for ourselves but Drs seem only to pay attention to results and not symptoms.

Charlie-Farley profile image
Charlie-Farley in reply to Rymer

Hi Rymer

Copy and paste your query into a post of your own then it will receive attention and you will get advice. It will get missed in d someone else’s comments 😊👍

But see pinned post by tattybogle on TSH.

Rymer profile image
Rymer in reply to Charlie-Farley

Thanks and will do,

BlueMoon65 profile image
BlueMoon65

Parallel with my own experience ( and, as I posted back in 2018, a rapid reduction over 10 weeks from 100 mcg down to 25 had an effect upon mobility, cardiac function, circulation, etc…). I was asked to undertake a routine test yesterday, and when I collected the authority form, TSH and T4 were to be tested…nothing else. Since diagnosis (after 20+ years of struggle resembling that of so many contributors) in 2012, I’ve never been referred to an endo, and in anticipation of a possible T4 dose reduction I’m seriously considering a private GP on the Thyroid UK list. Wish I could be more encouraging. All I can say is that this forum is a source of great wisdom and help. The situation with ignorant and opinionated GPs, and myopic endos, is deplorable. James le Fanu has written about the preoccupation with diabetes, and there is much evidence that the contemporary fixation with bracketing patients as ‘borderline Diabetes 2’, restricting diet and administering medication, seems to eclipse any understanding of other aspects of the vast and complex field of endocrinology. Take care and know you are not on your own in this.

Minster21 profile image
Minster21 in reply to BlueMoon65

Agreed and more people are on Levothyroxine than are on insulin.

Minster21 profile image
Minster21

Hi everyone, thank you for all your responses and good wishes. It's very warming to be part of this community. I have an UPDATE: This morning got online and booked an appointment with another GP. Appointment was at 9.50am. I explained the situation and he was sympathetic. Even better he understood that there are cases who have low level TSH but still need to maintain dose in order to not become symptomatic. He has arranged my prescription and said would ring the consultant this morning to get advice. He then called me back a few minutes later having talked to consultant. Consultant agreed with me on my dose (125mcg alternate 112.5mcg). I am now referred to endo and GP says I should stay with endo clinic as I have raised cardiovascular risks due to other health issues (don't want to go into those). This GP said he was glad we had had this discussion about managing my condition and will put in notes. He has also booked me a cadiovascular check at the surgery, something else I was asking for. A knowledgeable Dr makes all the difference! (BTW I chose this guy as I know he has medical students so assessed he was not inexperienced).

Thanks for all your support and information. ❤️

Meno56 profile image
Meno56

That's great to hear! I hope your symptoms subside and you feel better again.

For what it's worth, I was on 125mcg Levo last year and GP looked at my TSH and recommended a reduction, despite me having had that conversation with him many times and managing to maintain it at the same level for some time (15 yrs or more!). At this dose I was feeling fine!

Long story short, I reduced to 100mcg and started getting Biliary Colic symptoms (gallstones stuck in bileduct) fairly regularly and then finally retested TSH which had shot up to 10. Switched GPs and was immediately put back on 125mcg, and on researching the link, it seems that there is a fairly strong correlation with under treated Hypo with gallstone formation and biliary attacks, in line with the whole metabolism slow down when Hypo is not adequately treated. I haven't had a biliary attack since Christmas which I'm so thankful for. (I've also saved the NHS the cost of surgery (and overzealous surgeon) for gall bladder removal, for the sake of 25mcg of Levo and will not let my GP forget that!!)

I'm expecting another conversation when I get my next annual check, as I've added T3 to my Levo, which will further suppress TSH, but at least will be able to point to my sensitivity to TSH increase with Levo reduction.

There are so many different and personal implications when our meds are reduced, it's such a shame that the whole process is such a battle.

Charlie-Farley profile image
Charlie-Farley in reply to Meno56

Hi Meno56

Thank you so much for sharing though I was not the intended audience 😂. I found some stuff a few months back that back up what you say it’s so cool to be able to join the dots and get another’s perspective.

Biliary cholangitis was the thread I was following at the time.

Charlie-Farley profile image
Charlie-Farley

Hi Minster21

for any discussion on TSH, tattybogle has compiled a group of references debunking the fear of suppressed TSH. We are truly blessed on this forum with some great minds.

You may also like...