Have had my TSH suppressed for 30 years due to total thyroidectomy 1992. Had my thyroxine reduced from 100mcg to 75mcg 10 Feb because since October 2019 various health problems started to appear.....cardio, high cholestrol, high blood pressure and pre-diabetes. Been prescribed Bisoprolol Fumarate, Amlodipine, Aspirin, Statins which I take daily pending ongoing investigations to determine a diagnosis concerning heart issues. Hence endo reduced thyroxine 10 Feb 2020.
Initially I went to see him to discuss a reduction in T4 plus addition of T3 due to NHS blood results (October 2019)showing low FT3. Wont't go into the details of the meeting but basically he refused to prescribe T3 but he did reduce the thyroxine. He kindly informed me that I had been speeded up for 30 years due to thyroxine dosage and this had now effected my heart. In a nutshell he was saying I had been over medicated!!!!!!
Pointed out to him that FT3 was low in October and asked him if FT3 would go even lower if thyroxine was reduced to 75mcg. He would not address my question but he did blind me with medical science that confused me. I walked away with reduced thyroxine.....that was it.
Now I have medichecks thyroid kit and have arranged to have blood drawn tomorrow. Am concerned about FT3 going lower due to reduction of thyroxine since 10 February 2020. (low FT3 affects the heart and much more) I suspect it is too soon for blood test. Question is: when would be the appropriate time to get thyroid blood check with medichecks?
I have not given up on T3.....its a work in progress.
thanks to everyone on this site....priceless!!!
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dragon51
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You need the blood test to be early as possible in the morning, before nine ideally. Don't take your medication till after the blood is taken and drinking only water from after your evening meal the night before. Have a 24 hrs gap from last dose of medication to blood draw. Taking it afterwards. This gives you higher tsh and lower ft4.
thanks Hibs, don't think i have fully put you in the picture regarding my concern about getting thyroid blood test tomorrow. My concern is dose was reduced from 100mcg to 75mcg 10 February so its only been 13 days on reduced dose. So is it worth going ahead with the blood test via medichecks.
Hi slow dragon re:I imagine you will feel pretty unwell by then???? Correct me if I am wrong but do you mean the more my dose is lowered the more likely I will get hypothyroid symptoms?
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
I imagine, unless extremely petite, you are already on too low a dose
Low vitamin levels are extremely common on levothyroxine, especially if under treated and on too low a dose
Low vitamin levels tend to lower TSH .....
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
First of all a suppressed TSH wont harm you and I don't understand why doctors believe this. People who've had thyroid cancer have to have a suppressed TSH. We, hypothyroid, feel much better when TSH is 1 or lower. The problem is that the 'educated' doctors who believe a lowTSH is 'dangerous' god knows where or who educated them.
Well, I have my thyroid gland and couldn't improve on levothyroxine, in fact I had more clinical symptoms on it than before I was diagnosed (by myself and TSH of 100).
I think, as you haven't had a functioning thyroid gland at all that you should have been prescribed NDT (natural dessicated thyroid hormones such as Armour etc). NDT was the very original thyroid hormone replacement since 1892 and made from animals' thyroid glands, so more conducive to the human body than a synthetic hormone. There were no blood tests previous to levo and we were diagnosed and treated according to clinical symptoms alone. Doctors were very knowledgeable and skillful and before 1892 we just died if we were hypo and they could diagnose a hypothyroid patient and prescribe without blood tests, gradually increasing, dose until symptom-free. NDT contains T4, T3, T2, T1 and calcitonin. These were freely prescribed in the NHS until it was decided it should be withdrawn. That decision meant that patients had to source their own.
Our body can work without T4 (T4 should convert to T3) but it cannot without T3 as T4 - levothyroxine is an inactive hormone and the patient has to be a good converter of it into T3.
I must also state I'm not medically qualified but for you to be prescribed all of the following:-
Bisoprolol Fumarate, Amlodipine, Aspirin, Statins - you are being treated due to developing conditions that may have been avoided if on NDT or T3. Now - it is your heart. No wonder it is struggling as our heart also needs T3. Brain and heart need the most T3.
Sometimes I wonder why those who are 'supposed to be educated' can actually reduce a patient's dose of thyroid hormones to try to 'fit' into some sort of range instead of all the emphasis being upon the distressing clinical symptoms and the relief of them.
Do you follow this procedure for blood tests?:-
The earliest possible appointment, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take dose afterwards.
A higher Cholesterol level is actually a clinical symptom of hypothyroidism which should reduce if on an optimum dose of levo and that you are a good converter of it into T3. I think you will be able to tick of a few more from the following link.
hormonerestoration.com/ - this is by an 'expert' in the field of hormones and it is no wonder he cannot take on any other patients.
We need quite a number of doctors of his ilk who actually knows how hormones work in our bodies and the ability to restore them.
The aim is a TSH of 1 or lower, Free T4 and Free T3 in the upper part of the ranges.
I don't want to scare you but whoever is dealing with your health is lacking in something or other:
Excerpt:
"If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.5 days ago
Thank you Shaws for such informative and eye opening comments and links to relevant data. Have not read all the data, nor do I claim to fully understand all what i have read, but was blown away by hormone restoration site you suggested I look at. To say the least, what a knowledgeable, ethical and compassionate doctor he is.
When I look back to 1992 when I had thyroidectomy due to cancer I am disgusted as to how I have been treated within NHS. After surgery and thyroid issue my life went downhill mentally, emotionally and physically. What a nightmare!!! Just as the good doctor states I was given psychiatric labels and treated with harmful drugs and the root cause of the problem (thyroid hormones) was basically ignored. Harmful drugs went out the window a long time ago, the psychiatric labels are in my medical records which does not help, but still I became totally opposed to taking any medication off a doctor apart from thyroxine.
Now here I am taking medication for heart issues (not yet diagnosed) related to low conversion of T4 to T3 that GP and endo are not interested in.
I think its time to pull away from NHS and sort my own thyroid problem out with the help from wonderful people on this site.
I too was dosed and monitored on just a TSH blood test :
I too had my Levothyroxine reduced because of a suppressed TSH :
No other numbers were run, to establish where my T3 and T4 were :
I tested myself and my T3 was 25% through the range and my T4 at 20 at 80% :
This gave me a conversion ratio of 1/5 :
The endo I saw thought this was fine, as suggested a dose reduction in my T4 :
I asked for a trial of T3 and was quickly despatched out the door, as with a suppressed TSH
I didn't qualify !!!
It's not like we haven't tried to get help from the medical specialists - is it ?
I think you should wait a while longer before doing the blood test, as you now have these seeds of doubt and wont trust the results, and presume your next step is to self medicate ?
I trialled T3 for myself and I dropped 25mcg T4 and added 6.25mcg ( quarter of a tablet ) T3
It worked and I could remember my name !!!! It worked for me but I also trialled NDT as thought I might as well have a ' go ' on all the options available.
I chose to stay with the Natural Desiccated Thyroid, and this was the treatment for over 100 years prior to the introduction of Levothyroxine, and the blood tests and guidelines of the 1970's.
Prior to this time your doctor believed you and gave you a little NDT, and if that relieved your symptoms that was ' your dose ', if you still had symptoms the dose was increased until you felt well.
So simply, and it worked for the majority of the patients.
It is pig's thyroid, dried and ground down into tablets, referred to as grains, and each grain contains T1. T2, T3, T4 and calcitonin, all the known same hormones as the human gland.
My tablet contains a set amount of 9 T3 and 38 T4 and I take 1 + 1/2 grains and feel well.
This ratio of around 1/4 suits me though read of people adding in a little extra T3 or T4 for optimal wellness for themselves.
ahhh pennieannie so grateful for your reply.....loved the bit where you said T3 worked for you and you "remembered your name". What a joy.
Yep you correct, I am going to self medicate with NDT as soon as possible. The way endos treat some patients is tantamount to neglect or even abuse in relation to the Hippocratic Oath.....DO NO HARM !!! Enough is enough....!
Your reply about dose clarified a lot of questions I was going to post on this site which has helped me see how simple the change to NDT can be.
Got to do a bit of research as to where I can source it.
Does NDT come in various dose strenghts?
The weight has been lifted out of my head with your reply. There is light at the end of the tunnel now.
If you want to talk direct to someone, you need to press the reply under their name otherwise your post goes on the rolling screen but the person it's notified :
I just happened along and saw you had replied to me :
So, NDT is grains/tablets and currently the supply isn't plentiful owing to swine flu in Africa.
I'll PM where I buy from and the only choice is basically Thyroid S with each tablet known to contain 9 T3 and 38 T4.
I stopped 125 T4 one day and started NDT the following :
The levothyroxine takes about 6 weeks to leave the body :
I took 1/2 a grain at around 3 in the morning :
The following week I increased to 3/4 of a tablet :
Week 3 - I went up to 1 tablet :
Week 4 = 1 + 1/4 then Week 5 = 1 + 1/2 then
Week 6 = 1 + 3/4 and felt anxious and uncomfortable, so I dropped back down to 1 + 1/2 and have stayed there :
This equals 57 T4 and 13.50 T3. and relatively low compared to what I read on here.
This might be because I have Graves Disease I don't know :
I find it ' softer ' than T3 - and now in my second year still experiencing improvements - recently aware that I'm not needing a ' nap ' every afternoon.
I monitored my temperature and blood pressure every day as I upped my dose :
I still maintain vitamins and minerals and take a yearly blood test to cover all the necessary.
Did I ever recommend you a book Your Thyroid and How To Keep It Healthy ? It's written by a doctor, Barry Durrant - Peatfield and he has hypothyroidism and believe takes NDT.
It's a relatively easy, sometimes funny, insightful read and has helped me understand my situation. We may not now have this amazing little gland but we do need to know what it did so that we can try and compensate where we can.
P.S. I started on half a grain/dose but I had already trialled T3 and knew it made sense.
If your coming directly from Levothyroxine and a ' T3 virgin ' maybe start the first week with just a quarter of a grain/tablet.?
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