Too much time today for pondering but not enough clarity to make sense of anything. So after 2nd child born, (6th) pregnancy, developed a goitre. Got really anxious by the speed with which medics reacted. Bloods done I think, obviously probably just told all was normal 🤦♀️. Had a fine needle aspiration, fine needle my A***e, told inconclusive, but probably not cancer. Told surgeon please try and save what you can.
Afterwards he told me the whole Thyroid gland was completely covered in nodules and he couldn't save any. Then waited a week for histology results. A junior was told to pass onto me that it was not cancer, but no other information.
So about 8 or 9 days following op they tried to send me home without any meds.
I pointed out to them that as I haven't had a thyroid for over a week and I no longer have any capacity to produce Thyroxine it might not be a good idea to send me home without. Beginning of a long battle for appropriate treatment.
Suspected for years that things were not great but only when I found this site and all the info on here I found out things were definitely not great.
So looking at the scant information on MY GP app, it lists me as having/being secondary hypothyroid. But should it say primary ? autoimmune and then removal.
Wondering does it make a difference , would they (Dr's) even know?
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Polo22
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Looking at your post from five days ago you had high fT4 and low TSH because you were taking 150 mcg levothyroxine plus 12 mcg liothyronine. I assume your doctors know this?
The low TSH does not indicate secondary hypothyroidism because it is a result of your thyroid tablets. You will now have primary hypothyroidism because you don't have a thyroid.
The last set of results are from private testing, I have tried to get GP to listen for years but more so since joining here and learning exactly what they should know. My numbers TSH, T4 vary and despite showing them previous private tests including T3 results which seem to show quite poor conversion they refused to listen, refused to refer to Endo and told me they don't test T3 as it is not important or significant., and refused to accept private test results. So eventually acquired T3 and had been taking it for 8 weeks when this test done. Early days but starting to see light at the end of the tunnel.
They don't know yet about self medicating with T3, but they will when I can eventually get an appointment, they know I SI B12, they didn't like it but if they can't treat appropriately I'm not prepared anymore to suffer in silence.
If you had a diseased thyroid varying levels would not be unusual. Now you have no thyroid your levels should become more stable.As regards fT3 point out endocrinologists always measure it, it's simply not recommended for screening by GPs
appreciate the reply but I must not have explained situation, thyroid was removed 28 years ago, have TSH and T4 only on My GP app going back to 2014 TSH usually going from 0.05 with T4 at 19.2, also had TSH 0.05 and T4 of 32.3, , but have had TSH 5.3 with T4 of 19.8 so yes variable at times, it won't have helped that was always told back then to take thyroid meds morning of testing and that it didn't matter vwhat time test was
That's quite different! I wouldn't expect your TSH to jump around like that. If they were different assays there would be a small chance of assay interference causing false numbers.
If you get a low TSH when on moderate doses of levothyroxine it would suggest your pituitary is underperforming. TSH stimulates deiodinase particularly in tissues such as the brain and skeletal muscles. If this happens simply restoring serum fT3 is not enough because T3 in these tissues is locally regulated. Endocrinologists do not appreciate this.
I did explain that endo would measure FT3 and tried to point out it might be poor conversion he wasn't interested, also doesn't follow guidelines about retesting after supplementing for deficiencies, and stares at me blankly when I asked about high cortisol, wanting high CRP looked into
All hypothyroidism is treated the same - ie replacing the low hormone levels.
Either admin error or mis understanding that as you were not hypothyroid prior to surgery.
With central hypothyroidism doctors *might* understand the TSH is unreliable & lower / under range, with low levels, but many doctors will automatically be looking at TSH.
If you were to raise it at an error, it could well confuse matters. I’d ignore it.
primary hypo = thyroid not capable of making enough T4/T3 even though pituitary is asking it to .ie somthing wrong with thyroid gland .
Secondary hypo= pituitary and/ or hypothalmus not asking thyroid to make enough T4/T3( due to pituitary not making enough TSH).. ie nothing necessarily wrong with thyroid itself.
obviously it can get a bit muddy, because people can have secondary hypo AND have some sort of thyroid gland damage at the same time.
But if your original diagnosis and levo prescription was made on the basis of over range TSH , then your official diagnosis should say primary hypo or just hypo ~ followed by thyroidectomy .
it shouldn't say secondary unless there was originally a problem with 'not enough TSH' BEFORE you took any thyroid hormone.
See not sure about what bloods were taken before thyroidectomy, I do know I had several miscarriages before first baby and several more before 2nd. Number 2 baby was officially pregnancy number 6, but at the time if I got a positive pregnancy test and started to lose I didn't go for help because I thought well there isn't anything they can do. I had been complaining of being exhausted, dry skin , not being able to shift baby weight despite breast feeding exclusively and hair falling out at an alarming rate. I was dismissed and told your a Mum now get used to it.
Just wondered so would it make any difference?
They have been trying to get me to start statins, start hypertensives and start with meds for type 2 diabetes, and wouldn't listen that treating thyroid effectively could improve or alleviate these . My cholesterol has I think started to improve a little already after 8 weeks of T3.
So for example ..... if you did really have a secondary hypothyroid diagnosis , then you could have used it to remind your doctors that your TSH is not to be trusted because it doesn't go high enough for some reason ... and so it should be ignored and your dose adjusted by looking at just your fT4 ( and fT3) results and symptoms instead.
BUT ..... your TSH result from about a year ago (8 ish , then 5 ish ) pretty much proves to anyone looking at those results that you do not have secondary hypo now , and therefore that you probably never did have it .. because you pituitary is clearly capable of chucking out lots of TSH when it wants to now , and any GP will be able to see this when they looked at those recent results.
So it doesn't really make any practical difference to anything now if it says 'secondary' or 'primary' or just 'hypothyroid' on your record . they know your TSH can go up now , so they won't be willing to ignore it now .
and it doesn't make any practical difference to what happened to your thyroid in the past .. that was removed for some other reason in the 1990's ..... secondary hypothyroidism does not lead to the removal of the thyroid , it is treated with thyroid hormone replacement , exactly the same as primary hypo is.
So you are in the same boat as the rest of us with ~ needing to get them to see fT4 and fT3 and symptoms as just as important as TSH. getting them to adjust dose to optimise those things and not be ruled by TSH to the exclusion of all the other evidence.
Thank You, I was getting my drawers bunched going round in circles, thinking I had it straight in my mind then going round in circles again and not being at all sure about anything,,, getting loads of headaches and bouts of anxiety, but that could just be the result of resisting the urge to throat punch someone
It is not a stupid question - but what is stupid is that the treatment remains the same, whether you have a failing thyroid or no thyroid at all.
It just seems logical to me that if there is no thyroid to stimulate to produce thyroid hormones, a TSH reading, seen in isolation mean nothing at all as the HPT axis - the Hypothalamus -Pituitary - Thyroid - feedback loop is now open ended as there is no thyroid there to complete this circuit feedback loop - on which a TSH reading relies.
It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and on T4 monotherapy we generally feel best when the T4 is in the top quadrant of its range as this should convert to a decent level of T3 at around a 1/4 ratio T3/T4 :
I fully understand that in primary care you are likely to be dosed and monitored on just TSH readings and why many forum members are forced into getting their bloods run privately and even then with an obvious T3/T4 imbalance you may well find yourself against a wall of denial and non acceptance of the results by your doctor.
T4 is basically inert and a prohormone and needs to be converted by your body into T3 the active hormone that runs all your body functions and synchronises as best it can ( when there isn't a thyroid ) your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
No thyroid hormone replacement works well until your core strength vitamins and minerals, those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels and I know now I need my ferritin up at around 100 : folate around 20 : active B12 75++ ( serum B12 500++ ) and vitamin D at around 100.
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.
Some people can get by on T4 monotherapy.
Some people find that T4 seems to stop working as well as it once did and that by adding in a little T3 - Liothyronine - they can restore hormonal balance and their health restored.
Some people can't tolerate T4 and need to take T3 - Liothyronine only :
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same hormones as that of the thyroid and derived from pig thyroids, dried and ground down into tablets referred to as grains.
Although all these treatment options are meant to be available on the NHS - as they were at the turn of the century - it has become a post code lottery and your primary care doctor can now only prescribe T4 and you need a referral to an endocrinologist to assess your need for any other treatment option - which is likely based on financial rather than medical need - as hospitals are cash and time poor - and T4 the cheapest treatment option.
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Secondary hypothyroidism 
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