I have not been in contact for sometime due to being on 75 micrograms of levothyrine for the last 5 months. (Had a total thyroidectomy due to a cancerous nodule etc.) I have been walking around like a zombie during this time! Had a blood test done 2 weeks ago to reveal that 1) my thyroxine levels are about okay 2) I am aneamic. The doctor suggested that I could take 75 microgms one day and then 100 microgms the next day to see if this would make me feel any better. Also the doctor prescribed Iron tablets 250mg twice a day for a month. I'm feeling absolutely washed out and my lower back hurts along with week feeling legs. I'm not sure if I should start taking 100 microgms of levothyroxine everyday?
Just wondered if anybody has got any ideas/experience on the above matter? Thank you.
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cameleyes
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Do you have the results/reference ranges you can post so that we can see what "okay" means?
The doctor suggested that I could take 75 microgms one day and then 100 microgms the next day to see if this would make me feel any better.
This may or may not be enough, seeing your results would help us comment.
I'm not sure if I should start taking 100 microgms of levothyroxine everyday?
Do you have enough tablets to do this? If your prescription only allows for 75/100mcg then what will you do if you run out and GP wont prescribe more?
Also the doctor prescribed Iron tablets 250mg twice a day for a month.
Hopefully you will be retested after this to see whether you need to carry on or an adjustment in dose.
If testing iron then iron tablets should be left off for 7 days before the test and you should fast for 12 hours before test - so an early morning appointment is better so that you don't have to go too long without food. You can have water.
We really need to know what your blood test results and ranges are - are you still under the hospital or have you been discharged ?
Everywhere I read when very unwell suggested that ferritin needed to be at least over 70 for optimal conversion of the thyroid hormone replacement T4 - Levothyroxine.
Your need to take iron supplements tells me your ferritin level is now too low and that alone can cause the weakness, ' zombieness ' and brain fog that you describe yourself currently struggling with.
As previously written a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
T4 - Levothyroxine is a pro hormone, a storage hormone and needs to be converted by you body into T3 the active hormone that runs the body and said to be around 4 times more powerful than T4.
Your ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D , inflammation, any physiological stress ( emotional or physical ) dieting depression and ageing.
Some people can get by on T4 only :
Some people need to add back in a little T3 - making a T3 / T4 and likely replacing 'that little bit ' of T3 their own thyroid gave them :
Some people can't tolerate T4 ad need to take T3 - Liothyronine only :
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains al the same known hormones as that in the human thyroid gland nd derived from pig thyroids dried and ground down into tablets referred to as grains.
You might like to start reading around all things thyroid on here in other peoples questions and through thyroiduk.org - the charity who support this forum and where I started my learning curve around 6 years ago.
I will need to become your own best advocate and take back some control of your health as it seems at present from 5 months ago you are not getting any better, and likely your metabolism has slowed down too much causing nutritional deficiency which simply compounds living without a thyroid when not optimally medicated.
Thanks so much for your advice. I have now printed out, hopefully the relevant results: Serum TSH level 3.0 miu/l (0.35 - 4.94 )Serum ferritin level 25 ug/L (30.0 - 200.0 ) Outside reference range. Serum ferritin between 15 - 30ug/L is indicative of reduced iron stores
Serum total 25-hydroxy vitamin D level 60nmol/L
Serum vitamin B12 level 355 ng/L (190.0 - 883.0 )
I was discharged in December of last year ( Had op for removing a papilliary cancer node, so left thyroid gland removed and the right gland had been removed 6 years ago - this turned out to be a benign tumour. So hence now no thyroid at all.
As the actually tumour size was within range I did not need Radio Active therapy, so the consultant discharged me. However I thought that if you have any recognised cancer/surgery you should be followed up for 5 years? However perhaps the NHS have moved the goal posts here?
The medication is:- Levothyroxine sodium, which now I'm trying to alternate each morning between having a 75 micrograms and the next day 100 micrograms? Thanks again for your reply.
I think you need to know why your ferritin is so low, as when this happened to me I had to have an endoscopy and colonoscopy before iron tablets were prescribed.
I now find I feel at my best with a ferritin at around 100 : folate at around 20 : serum B12 at around 500 ++ and vitamin D at around 100:
We generally need a TSH down at around 1 or under and this will happen as your dose of thyroid hormone replacement is increased - as you look very hypothyroid and clearly not well :
It is essential that you are dosed and monitored on your T3 and T4 blood test results and we generally feel at our best when out T4 is up, in, or towards the top quadrant of the range as this should in theory convert to a decent level of T3 at least over 50% through.
Do you have a T3 and T4 blood test result there or have you just been managed and dosed on a TSH reading as this is all too common in primary care and very wrong and happened to me.
The computer dogma that doctors refer to has no idea of your medical history and the fact you do not have a thyroid.
If this is the case you need to arrange at least a finger prick postal blood test - Monitor My Health is a recognised NHS hospital trust who can do this for you and you can find their details on the Thyroid UK website.
We can explain the results and ranges to you, and advise you on how to proceed with your doctor.
Is there another doctor you can see as I seriously think you are not getting enough support in primary care from this doctor ?
If not I think I would ask to referred back to an endocrinologist.
Thyroid UK hold a patient to patient recommended list of sympathetic endos and thyroid specialists both NHS and private.
There maybe someone on this list within your catchment area if you prefer a face to face appointment though many endos now doing these ' virtual consults ' if travelling is an issue for you.
Serum ferritin between 15 - 30ug/L is indicative of reduced iron stores
Serum total 25-hydroxy vitamin D level 60nmol/L
Serum vitamin B12 level 355 ng/L (190.0 - 883.0 )
No folate result ?
Vitamin D and B12 are too low
What vitamin supplements are you currently taking?
Low B12
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) .This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
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