Hi all, just really interested to hear what dose of meds you are on if you've had total or partial thyroid removal. When your having your blood tests at GP surgery do they make note on the Lab forms that you have had a thyroidectomy along with the Levo dose you are now taking?
Full or partial thyroidectomy: Hi all, just... - Thyroid UK
Hi I had a TT many years ago.
I take 275mcg of thyroxine, I used to be on 300mcg and felt fine, but you know the powers that be think they know best and I've had to reduce.
I've never had the medication dosage on my blood test request form, I think it just says suppressive therapy. Not sure if it says anything more.
Hope this helps.
I too would be quite interested to see what dosage other people with a TT are taking, as I've always been told my dose is much too high.
I believe people are undermedicated these days and are suffering unnecessarily.
Hi Fredric, I had 7/8ths of thyroid removed 30 years ago and am only on 100mg 4 days a week and 75mg 3 days - low isn't it. I was on 175mg for 10 years and felt almost human but gradually over the last 3 years my meds have been reduced. Don't you get fed up with it - I do.
Gosh your dose does sound low to me! Not sure how you function on that.
The Endo I saw tested for T4 and TSH and when I asked what the T3 result was, was told that he didn't test it!
How can they know about conversion if they don't test for it!
Keep researching and talking to as many medical people as you can.
Ps. I gleaned from the tv prog. 'Hospital' last week that Head and Neck consultants are very thin on the ground as people do not choose this speciality due to it's complex nature......this is not helping us!
Hi Fredric, your comment about head and neck doctors just about sums the situation up really. I thought my dose was low considering I was on 150mg a day??. I can't understand why all of a sudden I am over medicated? It's not as if I have a thyroid gland that is pumping out the hormone?? I have never had T3 tested in 30 years !!
Hi DoeStewart, I also had 7/8ths thyroidectomy 30 yrs ago at that time I was 7st 9lbs, within 6mths weight doubled to 15st. I’ve always been on Levothyroxine 100 to 120mcg & felt lousy all these years with lack of sleep & lethargy, chronic arthritis. I’m due two knee replacements but my surgeon won’t do my ops until I lose weight because with obesity & chronic asthma the anaesthetic is too risky. So I joined Slimming Workd & Gym 11 months ago & Lost 3 stone, but have come to a standstill over the last 2months & no matter how much I diet I’ve not lost even one pound. My blood tests are always normal but I’m never given any info on the levels. I’m only sleeping about 3 hours every night & this is interrupted sleep, I’m shattered during the day with chronic pain in every bone & muscle in my body. My hair is falling out rapidly. My GP keeps saying my bloods are normal!!
Through all this I’ve managed to keep that 3 stone off but need to lose 2 stone more for knee replacements. My daughters neighbour is now taking Armour & says she feels better than ever. Have you ever taken this?
I’m at the end of my rope now & thinking of doubling up on the daily dose of my Levothyroxine !!
Hi nannycasey, first of all,.congratulations on your weight loss, fantastic achievement. I know how hard it is to lose just 1lb, for me to lose any weight I have to cut my calories to 1200 a day and exercise like crazy.. I have never tried Armour but if you read posts on this site many people are self medicating. Have you ever had your bloods tested privately?.most GP surgeries only test TSH and T4. Without T3 test these mean nothing. I have just used Medichecks and had full thyroid and vitamin panel done. They send email to you with results. I posted on here and had advice from others on forum. My vitamins were at low end of range so have been advised to sort that out first. I wouldn't double Levo dose, you will more than likely feel worse, Levo should only be increased in 25mg stages and retested after 8 weeks. Do you have up to date bloods and ranges? If so, post them on the site.
Hi Doestewart, Total thyroidectomy (TT) here. I was fine on 137mcg of Levothyroxine for quite a few years until my brand (Forest Pharma) was discontinued - I never found another brand which suited me. I am now on 1.5 grains of Armour Natural Desiccated Thyroid (NDT) and I am in very good health. The trick is to keep struggling with or without your doc's help (most of them do not know enough to help) to get to your optimal dose. You may have to have a blood test and change your dose every couple of months to get to the sweet spot - but do not give up. I expect you will get discouraged along the way. I got discouraged when I was getting sicker and sicker obeying my doc, but I turned my discouragement into anger and quickly got what I wanted!
Well done you LAHs. Sorry I don't know enough about NDT or the difference it can make. I am very tempted to self medicate though and go my own way with it. So many people on this site have had to go down this route. I just get so fed up with those who should be obeyed just looking a TSH and T4 ranges and tellng me that my results are 'normal. They have no clue what my range was before thyroidectomy so how do they know what's normal for me now?. I am biding my time at the moment as am waiting to be referred to Endo, I am curious as to what they will say about my ongoing hypo symptoms. If no joy then self medication is the way forward and I will be back on here for help with that.
The first step in self mediating is getting your own blood tests done. Your current dose sounds very strange, so I think it would be well worth doing just that one step. Then you'll be able to double check whether doctors have been right in the dose reductions they've given you.
Partial thyroidectomy in April 2017 on 100 mcg on levothyroxine.
Hi Mands74, how do you feel on that dose of Levo? Hope all is going well for you.
It’s taken a year to get to it but feel really good and not half as tired as before . My gp has never noted that I am taking meds when having bloods. Think I have been really lucky as my levels have always been”in range” tsh3.9. My doctor has said just because I was classed as in range was not normal for me , so she has aimed to get tsh to 1 or under . Last results tsh was 0.06 but t4 19 so happy to keep me on 100 mcg as I am functioning well .
Total thyroidectomy for benign reasons in 2015. Currently on 125mcg and feel fine.
Hi, I had a Hemi in Jan and then a total thyroidectomy 6 weeks later in 2014 due to Thyca in both lobes plus in three lymph glands...after the hemi i had no medication & felt ok-ish, a day after the total i was given 60mg a day of T3,i stayed on this until the following January then was put on 150 mg a day of Levothyroxine....then follows about 18 months of feeling rubbish,then my oncologist put me on 100 levo plus 30 t3 a day & after a few dodgy months I’ve never looked back,i later found out the oncologist had told his registrar to put me on the t4/t3 mix at least six months earlier but she obviously knew better than the professor...oh and the bloods ,ive had 99% of my blood test done at the hospital,in fact my consultant told me it’s better if they delt with all the bloods,I’ve never been told or seen one result or number but do know im on a suppression dose.
Hi Debeee, wow what a roller coaster you've been on, so pleased your feeling better and seems your meds are sorted. I have read of people going to see Endo, being prescribed meds by them but GP ignoring the Endo and just sticking with Levo?? It's a disgrace isn't it, it's us who suffer the consequences of it. Even though a hospital consultant has advised my GP that I need referring to Endo, my surgery has told me I need to discuss it with the Doctor before they will refer?? Is this just money saving? I haven't seen an Endo for 30 years !!. Keep on feeling good, keep on top of your own thyroid health and if in any doubts you can always get advice from knowledgeable site members.
I had a PT back In 1999.. I was so ILL for years after it was removed unable to function , the drs kept telling me my blood works were fine your ok, they did not understand what it was like for so many years without medication.
Yes that’s what I said no medication until July 2016!!! They started me off on 50 mg and recently put me on 75mg in the last 6months... still feel like crap I am now self medicating with T3 50mg, I still have bad days, having fibromyalgia still makes me so lethargic . Other than that
Life Goes On
Hope this helps someone.
Hi redchud, I know what it's like to have no replacement meds. I had my thyroidectomy in May 1988 and the Endo had advised me I would receive my thyroxine from GP afer my operation. It took me 2 years to receive those meds and I had been visiting the Dr every 2 months to tell them I felt awful, I was on the floor with fatigue. I had a 15 month old son when I had the operation and in a desperate need for help I called the health visitor to come to my home. She took one look at me and asked me why I looked so ill? I gave her all the information and she told me to make an appointment with the Dr. I explained I had seen the GP only the day before. The health visitor insisted and I got an appt in 2 days time to see same Dr. Before I had even got through the Dr room door they were already writing my first script for thyroxine !!. Oh the power of that health visitor who looked at me and knew I was unwell unlike the GP who only looked at TSH. You were many years without your meds and that must have been truly awful. I am glad you are sorting your own thyroid health out by self medicating T3 and hope you will gradually start to feel more and more well once you have sorted your own levels. Thank you for telling me your journey- take care.
Hi redchud and DoeStewart, I can't believe how long you both suffered before getting somewhere. I had a PT in 2011 and am feeling worse and worse as time goes on, but haven't ever been able to try any medication. It is just soul destroying keep going along and being made to feel like I am wasting their time, but I honestly feel so ill sometimes I don't know how I am going to get up and look after my daughter and work. I have only just found this forum though, and am both saddened to hear the fights people are facing, but grateful to have found people that understand what I am going through. Thank you for sharing your experiences and giving me some hope that I might get somewhere someday. Perhaps we need thyroid specialists whose initial training was in nursing as they may be better at treating the patient as a person and their symptoms, not just TSH level numbers in isolation!
Total removal 18 years ago. I am on 250 mg of synthroid daily. Did great until earlier this year and,out of nowhere, my TSH dropped dangerously low-.09. I was hospitalized 4weeks ago and now cannot get stable. Miserable feeling and my anxiety is unmanageable 😩😢
It sounds like you were on too high of a dose for you and it built up in your system - I have found too much can cause anxiety. Did reducing it help at all?
I left hospital after total thyroidectomy about 8 years ago on 100 but my tsh was30 so they changed it to 200. It’s been same since despite me putting on about 4 stones!! I’d like a higher dose but because it’s in the normal zone they just don’t care 🤷🏼♀️
Tsh 4.7 I think but I’m waiting for latest blood results do it might have changed
I had my thyroid removed in Oct 2015 in France they remove the whole of it thus stopping the need for more surgery later on.
Before I wasn't on any medication and after my TT was put on Levo. This made me ill and also I put on weight. After 8 months I joined this site and now self medicate with NDT 2.5 grains per day.
The only symptom I have is feeling slightly tired most days but I am 71 years of age and don't exercise as much as I should. My weight is perfect too. I use Blue Horizon for my blood test once a year now it is Thyroid 11 and it will give you all the tests you will need to start you off.
I never visit the Doctors or Endos I have learnt more on this site than anyway else.
I do take supplements to help support my health which I was recommended to on here.
Hi Bunnyjean - wow you seem more or less sorted on your NDT- good for you. What were the symptoms when you were on Levo?
Whatever the dose over a period of 8 months or so I felt pains, one in my ankle which I injured 38 years before and had never had pains since the accident I was so weak that I couldn't get up from the floor. I also put on 10 lbs in weight which I knew was not right I had never been overweight in my entire life. In short I just felt so ill.
Only the year before the TT I was swimming twice a week doing my yoga and walking so fit.
Levo definitely not for you Bunnyjean. It's such trial and error finding what suits and then getting dose right. Worse still is getting the medical profession to listen to us. I'm glad your feeling better on NDT and getting on with life. When our bodies aren't properly medicated it feels like walking through treacle with a sack over your head. Onwards and upwards for you Bunnyjean.
I am due to have a thyroids Tony next week and am very prone to weight gain and like what you have said re self medication.
Can you please advise me how to get NDT should I decide to go down that route as my GP is clueless about thyroid issues as evidenced during my three years of Graves Disease
Thank you so much
TT for thyCa in 2015. Been on 125 since then. I do add 25 extra a week if feeling bad. Nothing other than thyCa written on form but endo requests as still under hospital.
TT in 2011. 1 grain NDT and 50mcg T3.
Hi thanks for reply, are you living outside of UK?
Yes, I am in the US. Even though T3 is prescribed here, it is still difficult to find a doctor that will do it. Even then they give you piddly amounts. I did finally find a functional medicine doctor that is fine with my dose.