I'm desperate for advice and would appreciate help. GP & ENDO say my TSH is suppressed and at my age, over 60, can cause heart issues and brittle bones and need to reduce dose. Endo said the TSH is what they go on, that TSH was important indicator. IS THIS CORRECT? I insisted that every time in past I'd reduced my dose, I felt worse, although never felt right.. Here's my background story. Apologies it's long! 😳 but mentioning in case this is relevant, useful info!
I had a total thyroidectomy 20 years ago, following a year of trying to get my thyroid balanced, following a mistake of the NHS where I'd gone into A&E for something else, when they noticed my groitre,, and took blood test suspecting Graves for overactive thyroid. When they discharged me they said they'd get back to me for a follow up blood test in about 6 to 8 weeks BUT I heard nothing and they'd given me no letter, no contact details. Only my medication of a starting dose of Carbimizole and Beta Blockers. I started feel awful. I'd no idea who to contact. Thinking back now I should've just phoned my GP to sort BUT they were prescribing the pills!! I was working, had a 4 year old and was feeling very ill as by now 5 MONTHS HAD PASSED.!! Eventually my husband got a contact through a friend who worked at hospital. Following my call, I got an urgent appointment and when consultant took one look at me, sent me for urgent blood test straightaway and told me to halve my dose and come off beta blockers!! After few days consultant phoned with blood test results saying I'd become VERY UNDERactive and to completely stop treatment altogether!!! HOWEVER, after that my levels would not balance and I'd go from very overactive to very underactive experiencing all the symptoms in extreme. They said I needed have gland removed but needed to be balanced. In the end they gave me high dose of Carbimizole and Levothyroxine together and that worked!! I was booked for urgent surgery.
All was a success and an alternating dose of 125/150 seemed to suit me. The consultant at that time told surgery by letter that people like me usually felt better with an ELEVATED T3. My TSH has always been suppressed.
However, now I'm over 60 doctor and endo say TSH too low and need reduce dose so they agreed to a very slow gradual reduction. So from being on 125/150.. over several months, they've got me down to 125 for 2 days a week and 100 for 5 days. My stomach feels so bloated, face around jaw line in particular feels dropped.. I feel I've aged. My nails are very weak, keep splitting and lack energy.
So I'll list the last few months thyroid results below. However, since reading your responses to other people, I've discovered blood test should be done early morning 24 hours after last dose!!! No Doctor has never told me this. Over the years I'd tend to go afternoons when quieter!! So my last blood test will be first time ever done correct way!
Please let me know if my ENDO and GP are correct.
TSH LEVELS
September 2020 and February 2021
0.03. (0.34 - 5.6 iu/ml)
August, Oct, Nov 2021
0.01 (0.30 - 4.20)
March & July 2022
0.01 (0.30 - 4.20)
So TSH no change! Stayed suppressed despite lowering levo a lot 🤔
NOTE, This has confused GP and she has asked me, are you sure you're following correct dose!
T4 LEVELS
Sep 2020 25.80 (7.5 - 21.1)
Feb 2021 26.10 (7.5 - 21.1)
Aug 2021 23.4 (9.0 - 23.0)
Oct 2021 21.8 ( " )
Nov 2021 23.9 ( " )
Mar 2022 19.5 ( " )
July 2022 18.1 ( " )
T3 LEVELS
Sept 2020 5.40 (3.8 - 6.8)
Feb. 2021 5.50 (3.8 - 6.8)
Aug 2021 4.5 (2.4 - 6.8)
Oct 2021 4.3 ( " )
Nov 2021 4.4 ( " )
Mar 2022 4.8 ( " )
July 2022 3.5 ( " )
Again, apologies this is very long! Thanking you in advance.
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CosmicGirl61
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It is better to have a higher TSH but you are having hypothyroid symptoms. I suggest you clearly describe the symptoms and the effect they have on your life and ask for some liothyronine along with a reduction in levothyroxine. People who have had their thyroid removed generally do not do well on levothyroxine only therapy.
Thank you so much for your advice. I've never been offered anything except Levothyroxine in the 20 years since thyroidectomy.. I agree my TSH results are really low but I've already reduced levo dramatically and it's stayed same but T3 in particular reduced to what seems extremely low. I've noticed when I eat my stomach feels very full and stomach even when wake up feels full but after meals looks like I'm pregnant. Something is not right
When you are hypo (or hyper) intracellular magnesium is lost and the muscle in the gut ('smooth muscle') tends to contract giving a sensation of bloating. I would push for some liothyronine as it's not good to have high or high normal fT4 levels. You could also take a magnesium supplement to help with your bloating although this is no subsitute for effective thyroid treatment.
Thank you again for your reply. I didn't know magnesium can help with bloating so learnt something new 😊 A long time ago I did ask if there was some other medication and doctor said no!! 😢
TSH focus is how doctors are taught - but this approach will make you unwell.
Ideally your TSH -should- be in range. However your FT4 & FT3 *must* also be in range & your FT3 is in danger of going very under range. (doctor prefer the TSH looks nice) Most feel well if FT4 in top third or range & FT3 as least top half.
Ask doctors why TSH is so low if frees are also low? It’s not you Frees which are too high it the TSH which is not responding appropriately.
When you have previously been hyper the feedback mechanism which affects TSH response becomes down regulated. HPT axis (Hypothalamic-Pituitary-Thyroid. So your TSH may not respond to low levels.
Are your doctors assuming that if your frees are low (or under range) for long enough that the pituitary (which makes the Thyroid Stimulating Hormone) will rise high enough to “stimulate” your (not existent) thyroid to produce?
TSH doesn’t affect heart and bones (it tells the thyroid to produce hormone ) it’s the high FT4 & FT3 which *usually* accompany low TSH which damages heart & bones. Heart & bones also need good FT3 levels but doctors don’t seem to be concerned with that?
Your conversion of FT4:FT3 looks low.
For levo to work well folate, ferritin, B12 & Vitamin D need to be optimal (in range not same as optimal)
Have these been tested?
Your poor monitoring when diagnosed causing you to swing hyper - hypo then using block and make me wonder what was the cause of your hyper. Did you have thyroid antibodies confirm if your hyper thyroid was continuous?
Editing to add.. gluten intolerance often issue with graves & thyroid conditions.
Hi PurpleNails 🤗 THANK YOU so much for response AND everyone's replies below. I'm overwhelmed by the replies ❤️ There's a LOT to take in and I'm panicking because GP appointment on phone call only is this Thursday at 9.10am. 10 mins. Not my favourite time of day as I'm struggling have quality sleep and waking up🥱😴 It's like having a crash course in understanding what our GP's AND the Endo who I've seen once don't seem to. The confirmation on here that I'm not going mad is THE BIGGEST RELIEF 🙏🍾🥂💃💃 I had vitamin test last year in September BUT only because I'd asked because I'd said my nails are so weak. Won't grow and feel tired all the time.. I can post all those results below BUT when having my latest thyroid test in July when I saw blood test form I was soooo annoyed because she'd only asked for TSH!!! So I told receptionist that the Thyroid UK had told me (they hadn't 😉😉) to also have T3 and T4 done. I also added Iron, ferritin and D but annoyingly I forgot the B12! Doctor is currently on holiday but she had received all my results just before she left but just sent a letter saying D was INSUFFICIENT and been told to take 1,000 to 2,000 daily for 6 months then 400 a day thereafter. I'm at risk person because I also have Vitiligo, triggered by my extreme swinging back and forth 20 years ago due to NHS fault.. I used to have skin that tanned easily and loved holidays on the beach but now I'm almost white apart from patches on legs and feet. So have to use factor 50 on holiday! And sit in shade.. So have a phone call appointment Thursday. In response to: Did you have thyroid antibodies confirm if your hyper thyroid was continuous?
I'll never know because they did blood tests when I'd gone to A&E for something else. They suspected Graves. They did physical tests such as seeing if my hands had a tremor.. Of course I never heard back until I'd tracked down department 5 months later. Don't know if those results were lost forever and they could only treat me thereafter and so kept swinging back and forth. Thank you again ❤️
After 20 years on T4, and with suppressed TSH, there's no way the pituitary is going to wake up suddenly and take up the reins again for controlling your thyroid problem. The possibilities of bone and heart trouble are if the thyroid hormones T4 and T3 are grossly out of the socalled reference range for FT4 and FT3. After all this time, your body has reacted to the new situation by refining and altering the exact relationships between TSH, FT4 and FT3 and it won't rapidly reverse if at all. The answer to any medic giving scaring forecasts like they do is simply to say, I either have a life more miserably tedious if my TSH is OK and my thyroid hormone levels are too low, or I live my life well with thyroid hormone levels that make me so, even if it may slightly raise the possibility of fractures and heart arrhythmia and reduce my life by a year or so. Besides, these diseases happen far more often with people with no thyroid problems at all, so you can't even say with any certainty that any disease is indeed likely to come from thyroid dosing.
THANK YOU, THANK YOU for your detailed response. Means so much 🙏 Trying to digest everything but I agree, I'd rather FEEL better than a life feeling FAT with no energy I'm only 5ft 1.5"!! So with a huge pregnant looking stomach and my bust become huge I feel like a barrell!! 🥺 The worst is haven't seen doctor for about 2 years since covid!! STILL only doing telephone calls and makes me mad, as how can docs know how I am by not seeing me?!!! Your confirmation of what I felt is such a relief. Thank you! ❤️
HiI tried to tell my Dr that I would be more likely to get osteoporosis and have a heart attack if he kept reducing my dose to get tsh into range because I wouldn't be able to walk let alone exercise! He told me the risks of being undermedicated were "negligible". When I told him I wanted a quality of life and to feel well, he said he wanted me to be well too, "to a point!". It's impossible to get Dr's to listen and engage in any kind of dialogue! I'm losing the will with them. It's just too hard!!
BiscuitBaby, ' the risks of being undermedicated were "negligible"'
Perhaps your doctor doesn't know that thyroid hormones are as essential to life as food and drink? I wonder which is more harmful... being permanently a bit dehydrated and undernourished, or having to permanently survive on too low levels of thyroid hormones.
RedApple, I don't think he does. He didn't appear to notice he had a real live person in front of him. He barely took his eyes off his screen long enough to see I was there! My company send out evaluation forms and phone calls to people I visit to get feedback on my visit and how I help or otherwise. It can help with identifying training needs etc. If I had treated someone the way I was treated I would be having to answer some questions! Maybe feedback forms should be introduced for doctors. Maybe then they'd have to work on their manners and training needs!!
The TSH test was devised to diagnose hypothyroidism....not as a guide to dosing!
High TSH suggests low hormone level ( hypothyroidism) ....low TSH suggest high/ over production of hormones
It has been adopted as a lazy way to medicate.
TSH reflects the level of hormones in the blood....not the level of each hormone
It is a pituitary hormone....not a thyroid hormone
Once medicated it is important to test FT4 and FT3 for an accurate evaluation
T3 is the active thyroid hormone and must be adequate to flood the cells of the body....it doesn't become active until it reaches the nuclei of the cells
Low cellular T3 = poor health.
You would benefit from a full thyroid test
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and TG
Your symptoms suggest undermedication and possibly the need for a little T3
Medics are frequently not highly conversant with thyroid disease.....so patients suffer. The lucky ones arrive here!!
Suggest you read the following, make notes and then visit your GP and ask to have a full thyroid test . The results will determine how your medication needs to be adjusted.
THANK YOU SO MUCH for your response. Really appreciate. Thank you for private link. My husband wants me to go privately. I have GP telephone appointment Thursday morning to review recent blood test results! She's had 2 weeks hol. When GP and Endo said I should reduce levo because of suppressed TSH, because of my hesitancy at reducing, they did say, I don't have to reduce levo but of course I should be aware of the risks if I don't!! 🙄 I'm so grateful to you and everyone on here who have so kindly responded. I'm going to tell GP I want to increase back up my dose. I've gone from 125/150 levo.. to only 100 for 5 days.. Much too low for me and 125 only for 2 days 🥺 I'm going to say I want to increase to 125 daily and see what happens 🙏 but find a private endo to see if I can get T3 also. No point GP or current Endo prescribing as they clearly don't understand or how to medicate! I'll ask GP though for the other tests I didn't have which was B12. What is thyroid antibodies TPO and TG?? Don't think ever had that tested before.. If GP won't do them then will try private blood tests. Thank you again!
TSH doesn't stay the same all day, it has a daily (circadian) rhythm. Doctors think (wrongly) that it is the best way to test if people with thyroid disease of some kind are correctly dosed. But it is a very poor indicator precisely because it doesn't stay the same all day. See these links :
Because TSH varies so much throughout the day it makes a huge difference when diagnosing thyroid disease as to whether somebody is deemed hypothyroid/euthyroid (healthy or "normal")/hyperthyroid. Once someone is diagnosed it can make the difference between getting an increase in dose of one's hormone dose(s) or a drop in dose.
Free T4 and Free T3 vary throughout the day too, but not nearly so much as TSH.
Patients have learned that Free T3 is the test that is the most reliable as an indicator of "wellness", Free T4 is not quite so useful but is still needed. TSH is rarely helpful. Free T3 being too low and we feel hypothyroid (underactive), too high and we feel hyperthyroid (overactive). And for those who have found their "sweet spot" on the Free T3 range they can vary a lot. Someone might feel well with their Free T3 at 55% through the range and someone else might feel well at 80% through the range.
Age does have an impact on TSH but it isn't nearly as strong a factor as doctors generally imply. For more info see this link :
You might find this reply to a post helpful - it discusses some of the many patterns of results that could make a doctor decide that someone is overdosed if they only look at TSH. The entire thread could be helpful too :
With doctors trying to reduce your dose of Levo you really need to say something like this (but more diplomatically, because I'm not diplomatic) :
"I already have lots of symptoms of hypothyroidism and feel unwell. My TSH has been low for many years. If you reduce my Levo even further there is little or no chance my TSH will rise, all you'll achieve is lowering my Free T4 and Free T3 further. I am more concerned with my quality of life than numbers on a test. Please put my dose back to where I felt well."
The TSH was originally introduced as a diagnostic tool to help identify a person suffering with hypothyroidism and was never intended to be used as a measure of anything once any patient was on any form of thyroid hormone replacement.
T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body, much like petrol runs a car.
T3 is the active hormone that runs all one's bodily functions including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
The fact you have T3 and T4 results and ranges shows a gradual decline in both your T3 and T4 results with little or no change in the TSH - which just highlights the limitations of a TSH reading.
It is essential that you are dosed on your T3 and T4 blood tests results and we generally feel at our best when our T4 is up, in or towards the top quadrant of the range as this should in theory convert to a decent level of T3 at around a 1/4 ratio T3 / T4 :
However some people need to run their T4 slightly over range to get a decent level of T3 - and as you can see this was your situation in 2020 until your T4 levels started to drop back into range and then your T3 stated to fall away.
The accepted conversion ratio when on T4 only is said to be 1 / 3.50 - 4.50 and we generally feel at our best when we come in at around 4 or under :
So to find your conversion ratio / metabolism just divide your T3 into your T4 and you will see what has happened:
In Sept 2020 we had a T3 of 5.40 and a T4 of 25.80 = a conversion @ 4.70 and slightly wide of range :
In July 2022 we had a T3 of 3.50 and a T4 of 18.10 = a conversion @ 5.17 showing your metabolism struggling and having slowed down further causing these symptoms of hypothyroidism that you describe above.
No thyroid hormone works well until your core strength vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels
When hypothyroid the whole digestive track slows down, and you may find difficulty extracting key nutrients from your food no matter how well you eat, as you also likely have low stomach acid and unable to breakdown and utilise the vitamins and minerals effectively.
Conversion can also be compromised by inflammation, any physiological stress ( emotional or physical ) dieting, depression and ageing so whilst we can't stop time, we can try and do something about some of these other factors.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg
T3 is said to be around 4 times more powerful than T4 and so by not replacing that little % that your thyroid once supported you with, it's in effect, like having been down regulated by around 20% of your overall well being and given time this puts additional stress on one's body.
The logical solution is to be dosed and monitored with T3 and T4 being kept in range and balanced at around a 1/4 ratio which will mean adding back in a little T3 - Liothyronine along with your T4 - Levothyroxine possibly at a slightly lower dose.
Some people can get by on T4 only.
Some people find that T4 seems to stop working as well as it once did and need to add back in a little T3 to restore thyroid hormone balance - making a T3 + T4 combo:
Other people can't tolerate T4 and need to take T3 - Liothyronine only :
Whilst others find their health restored better by taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroid dried and ground down into tablets referred to as grains.
Your doctor currently can only prescribe T4 - should you wish to try these other thyroid hormone replacements options you will need a referral to an endocrinologist and currently on the NHS it has become a post code lottery driven by costs rather than medical need.
Thyroid UK the charity who support this forum hold a patient to patient list of recommended endo's and specialists, both NHS and private as it is also about seeing the sympathetic ' right ' endo to get a fair hearing and understanding of your health issues.
As for why your TSH is stuck down at 0.01 - join the club :
You haven't a thyroid - your HPT axis ( the Hypothalamus / Pituitary ? Thyroid ) feedback loop on which the TSH relies is broken as your thyroid isn't there to complete this feedback loop mechanism.
Mine was there, and still is, I have Graves Disease and had RAI thyroid ablation back in 2005 becoming more unwell around 8 years later in an ever deceasing circle of wellness as I was dosed and monitored on just a TSH and my T4 reduced to try and get my TSH to respond.
Rather than just looking at your TSH which doesn't tell him anything that has been factually proven to be true - why doesn't your endo look at your diminishing T3 level and do something about that ?
I was refused all treatment options other than T4 monotherapy and I now self medicate and run my own blood test and am much improved looking after myself.
To me it’s not just a lottery with reference as to costs, there is also a lottery about who is in charge of the culture of the endocrinology departments. In my area the endos have made very public statements about their opinions. Whilst we want our medics to take care of us within the current knowledge of treatment, we don’t want them wallowing in their out of date knowledge and opinions. Current standing of treatment in the UK relies on very few omnipotent persons. If it’s so simple to treat hypothyroidism (the consultants announce with teeth gritted) why are the GPs not allowed to just get on with it? There’s just more than a whiff of ‘banana republic’ in the UK rules and regs around hypothyroidism prescribing.
Hi Pennyannie, thank you for your response. Sorry only just responding. Been so busy BUT please know I'm so grateful for the info sent. Ah, so my TSH will struggle to rise because I don't have a thyroid. Makes sense and due to my past where I was swinging from over to under and back, I'm certain this is what's caused issues. I've never felt 100% "normal" but how can anyone know what "normal" feels like after years and years. All I know is I always have to pace myself. When we were in tenerife in May, temperature was approx 25° but I felt quite effected from the heat and found lacked more energy to walk much. Literally had push myself and then collapse on the bed..
Here are my vitamin results of which I only had done because I told the Receptionist to add on, including T3 and T4! As GP only asked for TSH!! 🙄
B12 391 (160 - 800) July 2022
D 32.4 (50 - 150) July 2022
Serum Folate 4.4. (2.7)
(Folate reading from November. I forgot to ask for this)
Serum Ferritin 79 (20 - 300) July 2022
The doctor is due to call me to discuss all my results tomorrow morning but before she went on holiday she sent me a letter to say my D was INSUFFICIENT and advised to take 1,000 to 2,000 daily . Would you say B12 is enough?? My nails won't grow. Keep splitting whatever I do..
Ok - so from my experience I know I feel at my best with a Serum B12 well over 500 : folate up at around 20 : vitamin D up at around 100 and everywhere I researched said that ferritin needed to be at least over 70 for thyroid hormone conversion and I know I feel at my best when mine is around 100 :
When taking vitamin D you need to also take MK7 - K2 as this helps direct the hormone to your bones and teeth and not your arteries.
Apart from the vitamin D all the other results are in the ranges so you don't qualify for a NHS prescription and will have to supplement these yourself.
For Folate - a methylfolate supplement rather than folic acid is recommended as this is the most active form of B9.
B12 nuggets are suggested and it's also suggested you take a B complex to balance and support all the B vitamins out.
For the ferritin, your level is almost there - if you eat meat just try adding in liver once a week :
I've found Asda sell little tubs of frozen chicken livers - they are very clean and mild to taste - once defrosted flash fry in a little olive oil and then whiz down into a pate and keep in the fridge in an old jam jar - and 1 tub a week seems to maintain my ferritin level.
A spoonful a day helps this medicine go down especially with a dollop of Hellman's !!
There are numerous brands and would suggest you look up replies from Seaside Susie and Slow Dragon who post extensively on recommended vitamin and mineral.
There is also a section on vitamins and minerals - just scroll up to the top of this post and on the right hand side under Topics you will see this subset.
No worries and just to say - with the weather we are currently experiencing if has been very uncomfortable for me to keep my temperature regulated and the thought of Tenerife wouldn't have been on my bucket list either !!!
Many thanks for your detailed response. Really appreciate your help and overwhelmed by so many responses on here. Just to say I've put my vitamin results above in reply to Pennyannie. I need to know what you think re B12. GP is calling tomorrow morning. Thank you
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Hi, the tsh has absolutely nothing to do with anything with the thyroid when being medicated. Google Dr Midgley who invented the tsh t4 and t3 tests and says that t4 and t3 are the ones to use in blood tests
"Google Dr Midgley" ..... might not find him as he's not 'a Dr' (well not that sort of a Doctor anyway ..... he's a scientist )
John E.M.Midgley.
He post's on here as 'Diogenes' and has replied above ~ Find recent posts from him on his profile page ( details of his groups latest research work on thyroid and informing us of other research ).
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Endo that prescribes armor and not only levothyroxine?
Levothyroxine Dose and stable levels - help with results 
Suppressed TSH - thoughts? 
