Because of pressure to lower T4 from 75mcg to 50mcg from Endo and intervention fromGP I gradually stopped T3 and then have been off T3 for 10 weeks due to a confusion with an appointment.
I might add that I was hopeful after sorting my bowel out , no gluten, as suggested here . That I wouldn’t need to obtain T3 .
I decided not to drop my T4 to 50mcg
I have just had the monitor my health blood test back as I couldn’t stand it any more .
TSH. 0.23. 0.27- 4.2
T4. 16. 12-22
T3. 2.8. 3.1-6.8
As I said this was on T4 , 75mcg weekdays and 100mcg . No T3 .
Can’t imagine what my life would be on 50mcg T4 only !
The comment was ‘These are unusual results and we suggest to consult with your GP !
No s***.
A scandal for all who suffer at their hands !!! Grrrrrrrr
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Gcart
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Your T3 is below range and considering it is needed in our millions of T3 cells - brain and heart have the most, why don't doctors understand this whatsoever and increase your dose?
I’m mad about this. I have felt awful . Couple of weeks didn’t seem too bad but it gradually got much more difficult in so many ways ! Ad you say what can’t they understand ????
They are supposed to be 'trained' in many conditions' but as autoimmune conditions are common, especiall dysfunctional thyroid glands, they should be much more educated and stop the unnecessary suffering of their patients.
I think they forget that we have to analyse ourselves if we don't feel well at all and, initially, we cannot figure it out. As the months go on, we get better educated thanks to the many members whose knowledge is brilliant and most would be better doctors than 'doctors'.
I cannot tolerate levothyroxine at all. I believe that many others are in the same boat. The insistance by the professionals that T4 is the first and foremost prescription is because it is cheap and T3 more expensive. They have not been trained like our previous doctors when there were no blood tests at all but were diagnosed according to their symptoms.
This skill has been lost and with the removal of NDTs (natural dessicated thyroid hormones) another nail was put into th coffin of the very first replacement that saved lives from then on instead of a horrible death without the need of blood tests to diagnose patients.
I actually gasped when I read your results. What an absolute disgrace thyroid care is.
You poor thing; you must feel absolutely dreadful.
I have some T3 now as I used Germany . Now have the supply from R……. 50 p for 20 Thybon. You will know supplier I will write to GP , see if he has any comment to add re what they/he has done to me .
Never again will I feel pressure like that and do what ‘they ‘ say !
Thank god for this forum and all the help given freely .
Since TT I suppose this would be how this last 8/10 weeks would be for me for last 5 plus years . Plus plus years prior undiagnosed!!
I will write to GP , see if he has any comment to add re what they/he has done to me .
Hopefully I'm just being cynical here, but I wonder if your doctor might say you need to cut down your Levo because your TSH is under range? They are so stupid on thyroid matters.
I'm assuming you have no thyroid as a result of thyroid cancer. How you cope with your levels and no thyroid, I simply can't imagine.
I think we all need to keep in mind only defer to someone if they actually know anything and certainly more than you. Stand your ground and take no ‘do-do’ off these imbeciles.
So far I have had diagnosis by a fellow sufferer. Wise lady!
Then initial dose of Levo and four subsequent increases each time by a different GP (5 in total). Not a single one of them knew as much as me (and I’m still learning), or the person who recognised my symptoms.
My knowledge/enlightenment has been bought about by fellow sufferers and this forum. The horror of it all is for most of us this should not be something we suffer, it should be managed and we should be able to get on with our lives. I appreciate it can get complicated for some with concomitant conditions/health issues.
One thing that has really struck me about reading people’s stories is that the more they muck you about, the less likely you are to get back to a sweet spot, so stand your ground and do not take any ‘do-do’ (trying to keep it expletive free).
I am getting actavis . I just cut for the 25 to make up 75 . I was given Teva some time ago but didn’t get on .
At present as soon as I took blood test at home Wednesday. Didn’t wait for result before starting back with 5mcg T3 which I will do for about a week then go to 10mcg I was doing better on that dose before this .
I expect I will be some time getting back to feeling better !
Thank goodness for Roseway now .
Easier than getting from Germany .
Couldn’t find my words and writing became hard , couldn’t think how to form letters . Other physical problems also
I wonder how many people are left with ,so called, dementia and mental health
Oh my, you didn’t say what T3 you were on but exact same problem as myself, except I only reduced the T3 to 5mg aday and when we was on 75 of T4 my highest free t4 reading was 16…once!The reason they dropped it, yeah no tsh. The head aches and all the other symptoms are back.. and me trying to do a house move, including a drive down threw Europe!
More bloods on the 29th of this month, so we will see (how much less free T4 will be showing)
Previously they questioned the TSH, and I saw a consultant and we spoke about pituitary issues which are almost impossible to test, but can be the cause of zero TSH. I have never felt well with this condition, as I don’t think any of us have really.
Good luck with getting some resolve with your situation!
I get migraines. Most frequent trigger is fatigue which I know can happen when my thyroid levels drop. If my levels drop too much then the migraines are terrible and include vomiting. My migraine meds do not work at this point.Moving house really takes it out of you - I know, I’ve done it several times - and be aware it can take a long time to get your strength back. So make sure you look after yourself and rest when you can
I'm in the same boat, and I'm also considering taking the reigns back from the doctors as I'm currently off work due to back problems made worse by being undermedicated, and I'm considering suing my gp practice for negligence if things don't improve. I'll be posting again after my next endo appointment some time next month.
I feel exactly as you do as far as my Dr and endo are concerned.
I was on 150mcg of levothyroxine but after goining a new surgery the Dr said I were being over medicated and dropped my levo by 100mcg ! ! ! This was not done gradually it was straight down to 50mcg.
My B12 was low so you can imagine the state I were in. I was in the most dreadful pain and just simply unable to function. I had suicidal thoughts and was unable to see any point in life, I can honestly say I have never felt so ill and can fully understand what you are saying.
I was now showing I were under medicated so the Dr sugested putting my thyroxine up to 75mcg - apparently by doing this the Dr now tells me I am once again overmedicated. I have refused to lower my meds untill I have seen my endo ( appt next Friday ). He is a professor of medicine and I intend to discuss why a physician with such a high status would agree to such a dangerous drop in my medication.
I have changed the appt from a phone consultation to a face to face because I want to see this imbacile squirm as I go for his jugular.
Good luck Jillymo. Pin him to the wall but whatever you do keep very calm and polite so they cant write you were aggressive on their notes! Ive had to challenge a few times and you know its being calm, polite but insistant that seems to wind these people up. They dont know what to do as they cant tell you to leave as you are not being rude or aggressive (even though they are!)......just knowledgeable. I once had a surgeon who completely lost his rag.....I just sat there calmly, listening and speaking quietly. (A friend of mine had had a very bad experience and terrible results from his surgery which he blamed her for -he maimedher) The nurses behind him were in stitches, couldn't stop lauhing at him -he couldnt see them but I could. Am sure my confrontation was the centre of any conversation at their lunch breaks. Naturally I chose a second opnion and didnt allow him to operate on me. Most of these poor consultants have over inflated egos and are not that skilled......but there again there are some real gems out there who do amazing work and they are never arrogant or puffed up......you just have to find them!!
Dear Jillymo, I really concur with waveylines 's calm approach!
I would also add that it can be good to take someone with you for support - preferably male & senior - it's much more difficult for a 'doctor' to be rude or dismissive in front of a witness!
I think that, sadly, we have to play the 'game', and it helps if we know the rules & the opponent's likely strategy!
Hello HappyHealthyGirl, I agree with what you are saying.
Unfortunately I l have nobody to speak up for me and i'm unable to attend the sugery. My Dr is not arrogant but she does not seem to understand the importance of treating the symptoms which in my case have been ignored.
When feeling desperately ill it is difficult to stand on one's feet let alone play games or figure out strategys. The rules are simple with regard to B12 deficiency - if patient has neurological symptoms the correct treatment needs to be administered ASAP.
My endo is a professor and I am no newbie to thyroid issues I have sufferes from hypothyroidism for more years than I care to remembertogether with hypoparathyroidism so i'm considered a rare case. I can not believe a professor of medicene woulfd be stupid enough to drop a patients medication bt 100mcg !
The drop in my meds together with the B12 problem made me very ill indeed. I have other autoimmune illnesses to contend with and do not want further damage to my heart, suffer further heart failure or suffer any more strokes or TIA's - I have antiphosolipid syndrome.
My patience out of pure fear of neurological damage and coronery manifestations I decided to take the B12 into my own hands and am now self injecting.
My Gp only works two days a week, Albeit I am able to consult the other Drs in the practice the conversation always ends up with ' wait until yor Dr is in at the end of the week ! 😱
When you have spent your life constantly battling with Drs and consultants patience becomes very limmited.
I am seeing my endo face to face tomorrow so fingers crossed I dont blow a fuse, 🤞
Just a quick_ish note to wish you well for tomorrow seeing your endo.
Sorry to hear that you don't have anyone to accompany you in person - perhaps you could imagine us all standing beside you, and behind you, supporting you when you're there?!
👭👭👭👭👭👭👭👭👭
I would urge you to stay calm, especially as when we're stressed we go into survival mode & our brains stop working!
The other thing I would recommend is to breathe! If we take a deep conscious breath (into the stomach) it makes our bodies relax, and has the bonus of providing more oxygen to our brains as well!
I'm sure that you have printouts of any results & supporting documentation ready to take with you. Plus a list of questions that you'd like answered....
I know all too well how frustrating it is and can be....hold your head up, stand tall, have a confident smile on your face, and imagine the best outcome....
The consultant didn't even do my bloods he went by the ones my Dr had taken. Although I am still slightly out of range he was happy with the way things are going. I was pleased there is no change with to my meds.
With regard to the previous ateration to my meds from 150mcg to 50mcg it seems an error was made. what should have occured was my medication should only have been atered by 50mcg leaving me on 100. Who is to blame for the blunder be it his secretary or my surgery I dont supose I shall find out.
I’m with you. Over drs. I have Graves and have been over medicated this week and all I got from the drs was “sorry we overshot the mark” my T4 is 5!!! Range 10-24 and T3 is 3.5 range 2.0-6.0. I was bed bound for 2 days with thoughts of taking an overdose “. Honestly. I asked for some T4 to help my poor body. No. You’re not getting any T4 today, tomorrow or ever. Instead. You can half your PTU dose and it may take “we don’t know how long exactly” for you to become well. Oh and we will see you in 7 days as scheduled for your 6 monthly appt. seriously done
So sorry t ohear this........its negligence. Id move change practise......appalling. Just this week Ive had to challenge a new GP to the practise.......arrogant idiot tried to throw his weight around and directed me to do something alleging it was the policy of the practise and followed this up in writing......however I found evidence he was lying and complained to the practise manager........he was told off. She was most apologetic. Another one noted to avoid at all costs!!
It is very hard as you know. Only you can advocate for you. I am finding at GP level a good level of compassion and the GP has said I am not asking for anything u reasonable from the endocrinologist team so I feel there is support at a GP level but at an endocrinologist level there is a lack of actual care for the real person who is suffering. Tomorrow I see the endocrinologist l. I can only hope I am allowed two support people as we are at level 2 in New Zealand but hospital letter hasn’t said anything so that will be my chance to say if only one person is allowed to attend as support then it is not outlined in your appt letter. Big sigh
GPs are pretty useless with thyroid. I never expect help from them anymore. And the one time I was sent to see an NHS endocrinologist I saw a really young man who didn't have a clue. I pay to see a private endocrinologist now. He writes to the GP and tells him how to Levo to prescribe and what tests he wants running. GP obliges. I then buy T3 from Roseway Labs with a private prescription. They also have NDT if you can get a private prescription. I'm not sure how many brands, but they do have Armour.
We are on our own with this condition. It should not be the case, but it seems to be so. We have to learn and do the best we can. My problem is I'm fearful of T3 because I have a heart arrhythmia and Cardiologist tried to scare me off T3 completely. Hospital doctor warned me to stop it and have some more Levo. GP says my issues are not my thyroid (are they heck as like), previous HRT doctor freaked me out over T3. And as a result I think I've been too tentative. Well no more. I've had enough. I don't recognise the fat old looking lump that I have become. I'm daring myself to be braver.
Go for it Fancypants. I have a heart arrythmia too......and yes a really stroppy cardiologist tried to create trouble behind my endos back......it didnt work but its so unpleasent dealing with these so called professionals who are wrongly stepping out of their area to advise on something they know nothing about. He and I had several very long consultations lasting an hour each time and all he wanted to do was lecture me on my thyroid meds!! What the ........? I fought back each time......he didnt like it. He finally closed my case and moved me to a different heart specialist who is a lot more on the ball! I was glad to be shot of him.
I've not been on for a few days. These cardiologists have a lot to answer for. They could try learning about the importance of T3 and the heart. There seems to be so little appetite to learn anything new after leaving med school or specialist training.
I have had a terrible week. We lost our beautiful Burmese cat on Wednesday. She was 22 years old. We loved her to bits and this week has broken us. But before that happened, last Friday I thought "sod it, I'm going to raise my dose" and took 35mcg of T3 in 3 doses of 15 x 15 x 5. And I had no adverse effects from the increase. Probably the first time ever. It's been hard to know if it's helped at all because of the awfulness of the week, but I think there have been a few improvements. Not much, but a bit and certainly no worse. I'm encouraged. I'm giving it 2 weeks and will then try going up to 40mcg and hold it for a while.
Am so so so sorry for your loss Fancypants. Our pets are really important family members and their loss is huge. Big big Hugs.
Re T3. I found that being on combination medication whether synthetic T3 &T4 or ndt my sweet spot is around 38mcg for T3. We are all different but good for you yes! You are right few if any professionals have a clue & frankly most are not interested in optimal doses (if they have even heard of that expression!). I found my optimal dose then pushed the professionals to back me......not how it should be at all but the reality.
Thank you. It's been really hard on us. We have never lived in this house without a cat. We had 3 at the start and she outlived them all. She was my husband's favourite and she adored him. He could do anything with her. She loved to cuddle with me. She was so petite and so clever and cute. Very pretty too. The house is empty. She was vocal, those orientals are, and so it's now silent. It's horrible. I can't stop crying. I keep seeing my husband's eyes are red too. She is very, very missed.
Part of why I'm hopeful about this dose increase is that I managed to get through this awful week in a better physical condition than I would have done a few weeks ago. I will see how I feel next week. I have this issue where taking T3 has totally tanked my T4 levels, so I am interested to see what happens to them if I finally get to a point where my FT3 starts to come up a bit.
It's early days, but fingers crossed. My fluid control is really to pot though. Not peeing enough. I hope it's more to do with the stress than anything else. Both of us sound like chemical factories inside. I can hear our guts gurgling and popping and Fizzing. I'm sure that's the stress. It does a number on us, stress.
It probably is stress induced....and nows not the time to be making any more changes. You both need time and space to grieve the loss of your adorable cat and to be able to comfort each other. I'm a dog person. I have a miniature long haired daschund. She is the sweetest, incredibly affectionate & loving & devoted to me.....I would be heart broken without her.
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T3
I Can't tolerate levothyroxine or liothyronine
Help with interpreting labs
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High TSH, dose titration
