I was diagnosed with an underactive thyroid and Hashimotos in 2010. I have not done great of T4 and never felt really well. Anyway i was sent to see an endo a couple of months ago due to having flushing episodes, my last bloods showed raised TSH and low T4 even though i was having hyper symptoms. Endo told me to take 100 of levo.
Latest visit to endo he told me that i should come off levo completly as i was not feeling any better on it. He continued to say that my thyroid bloods have never really been that bad and that i have been boderline underactive. I was so confused with what endo said because i was diagnosed with an underactive thyoid and the reason that my bloods were not that bad was because i was put on levo. I did say to him that because i have an autoimmue thyoid disease surely my thyoid gland would be destroyd and not producing any thyoid hormone wo which he replied who said this happens.
I feel very confused about my endo visit and everthing i thought i have learnt about thyroid disease is now questionable.
I beleived that thyoid disease was a life long condition which required medication regardless if i felt well on it or not. How can the endo take me off it and replace it with nothing.
Anyway he realised i was not happy about coming off it and said to reduce it to 75.
I felt like i had gone mad and bascally for 5 years i had been taking levo when i didnt need to. The reality is of course i do need some thyroid hormone medication as without it i would become more unwell. I know this so why does the endo not know this.
When i was diagnosed in 2010 my T4 was 10.2 and my TSH was 13.5 and antibodies were 1000 plus.
If your reading this and this has happened to you could you let me know out it played out..i don not want to stop levo and be very ill and of course i do not want to take it if i dont need to.
Thanks
Christine
Written by
yorkshiregirl44
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My initial diagnosis was subclinical hypothyroidism with not too similar blood test results as yours and TPO antibodies 4 years ago.
I have seen an Endo twice and on one occasion he did question whether i should be taking levo or not which shocked me as well. i asked him how i would go about not taking it and he in my opinion retracted somewhat! Needless to say i still take levo and i think i would be a lot worse if i didnt.
Like a lot of people i started on 50mcg and am now on 200mcg which is a hefty dose and i am trying to improve B12, ferritin, vit d levels to try and feel well again, if this doesnt work (i have never felt well on levo either) i might go down the self medicating route of some T3 added to a reduced dose of levo (others on here are much better informed than i am about this).
It does sound to me that you have symptoms and your initial blood test suggested hypo so i dont really understand why your endo said come off the medication!
I am not medically qualified to offer advice but im sure if you post your recent blood test results for TSH, T4 and T3 and any others like ferritin, B12, iron, folate if you have them others who have more experience will reply to you.
Until seeing the endo yesterday i never questioned not being hypo and at no point was i ever told i did not have an underactive thyroid.
I have felt unwell on levo but is that any reason to take me off it without diving me some other thyroid meds.
Its all very strange and for the last few years i have learned so much from this site all of which was challenged yeaterday when endo said the things he did.
It sounds as though your endo is a diabetes specialist, not a thyroid specialist and just wants to get rid of you - possibly without reading your notes. You were very obviously hypo in 2010. You might just be having a Hashi attack now, where the dying thyroid pumps a lot of hormones into the blood stream, making you feel hyper. The best way to alleviate attacks is often by taking enough Levo, NDT, T3, whatever to suppress TSH.
Need to find an endo with a clue who understands autoimmune disease.
Flushing can be caused by other hormone imbalances or by low blood sugar. If your TSH is high and your T4 is low, it is very unlikely that you are Hyper. You need to get free T3 done as well.
T3 is being tested this time.....im still in shock from endos comments and non of it makes sense.
He does specialise in diabetes with a special interest in thyroid cancer
He said to take 75 of levo with a view to weaning me off. Of course i was not happy with this..why should i be when i have a thyroid disease that needs hormone replacement.
Was the Endocrinologist qualified? It doesn't sound to me as if he is.
If you were diagnosed with hashimotos you will become hypothyroid but the diagnosis allows levothyroxine to be prescribed before your thyroid gland cannot produce any more hormones.
I would dismiss what he suggests and speak to your GP.
I would expect him to be qualified but what do i know anymore....
Its quite funny if you think about ,he said my bloods were not too bad.....of course this was due to levo....without levo it would be a totally different story...why can he not see that.
I cant beleive that five years down the line after diagnosis an endo has said to stop medication.
I'm afraid there are a number of doctors that think like that. They see that your numbers have improved, and you're feeling better, and they say oh, you're cured! You can come off the Levo now! And they think they've done a great job of 'curing' you. Totally rediculous, but nothing surprises me anymore.
Don't doubt yourself, you know more than he does. You cannot come off the levo without dammaging your health. So, just ignore him, and talk to your doctor. Unfortunatley, not all endos know their job - i.e. hormones. All hormones. I just pity his thyroid cancer patients! I Wonder if he knows they can't live without thyroid hormone...
Yorks, it's not yourself you should be doubting, but your endo. Did your endo read your blood results from 2010? I've seen several members taken off Levothyroxine by endos recently because "they probably weren't hypo to begin with and don't need Levothyroxine". They've all spent several weeks or months becoming hypo and had to resume Levothyroxine.
TSH >10 is overtly hypothyroid, there's no ifs and buts about it being borderline or subclinical. It will have been Hashimoto's destroying your thyroid which caused the hypothyroidism, and high antibodies are evidence of recent attacks on the gland. Suppressed TSH reduces thyroid activity which can dampen Hashi attacks. Feeling hyper may be due to a recent attack destroying thyroid cells which dump hormone into the blood as they die. Some people reduce Levothyroxine during hyper phases and reinstate the higher dose when it subsides and they begin to feel hypo.
Other reasons for flushes are, of course, peri and menopause. Your GP can blood test for these.
If you've never felt well on Levothyroxine it's probably due to low FT3. As your FT4 is low it will be difficult to convert sufficient T3, and the addition of some T3 will help. I felt ill on Levothyroxine, not just because FT3 was low, but because Levothyroxine caused a lot of adverse effects. Adding T3 significantly improved FT3, but more important for me, it calmed the adverse effects Levothyroxine only was causing.
I know iv got hypothroidism so why dosent he and yes he had my original blood test results.
He said that high antibodies did not mean anything and he could have antibodies which would not always mean he would get hypothyroidism. Its shocking advice from him..does he think my thryoid is going to kick start by some miracle.
Reading the replies from the very knowledgeable people here hopefully you have come to the conclusion that your Endo is wrong. The fact that your blood tests on diagnosis confirmed hypothyroid and coupled with having antibodies confirms this and to back this up you have symptoms all of which to my experience suggest that taking some replacement will be helpful.
I spoke to my doctor when the Endo suggested to me about coming off the medication and she raised her eyebrows...that was about all. I think what my endo was getting at was that maybe i had started levo too early and that i needed to feel a lot worse than i was already and that the symptoms he felt were not thyroid related! We read about this a lot here im afraid and this backs up what Clutter was saying about Endos stopping meds to allow us to feel worse and then start on the treatment again! Not very helpful at all.
I think if i were you i would go back to your doctor who will hopefully listen to you, see if you can get your doctor to get all of the blood tests done as suggested by reallyfedup123 and if not and you can afford it get it done privately.
If you post your results on here others will reply to help you with this.
I know i've been tempted to come off of Levo but i think i would feel a lot worse if i did i dont think i am quite tweaked yet but as mentioned in an earlier post i am trying to sort out vitamin deficiencies first which can hinder levo uptake before i go down the self medicating route of may be T3 replacement.
In my non medically trained opinion you have received good advice here but not from your Endo. And the best advice i have received is from the lovely people here who are far more knowledgable than any doctor or endo i have seen.
Good advice from you an everyone else...it scares me to think what would happen to people who do not know about tthyroiduk and do exactly as their endo suggests.
Yes Christine it is a scary thought. If i didnt know about this site i would be severely under-medicated and extremely anaemic .
I have given up with my Doctor now since it was suggested that it cant any longer be the thyroid causing all of these symptoms and because all or nearly all blood tests for other things are "in range" albeit low in range i must now have M.E or chronic fatigue! So like many others who share and post on here...im going it alone for now. The Endo i saw on both occasions was dismissive so unless i want to pay to go private im on my own with this..but im not as this site is a godsend of support. I do hope you find some answers.
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