Levothyroxine was increased 8 weeks ago to 150mcg from 125mcg following a total thyroidectomy in September. I still feel exhausted and have episodic tingling and aching in my legs.
I got Medichecks results today which I include here and would welcome thoughts.
Ferritin 62.1 (13-150)
Folate 7 (>3.89)
B12 >150 (37.5)
Vit D 75.1 (50- 175)
TSH 0.4 (0.27-4.2)
Free T3 4.95 (3.1-6.8)
Free Thyroxine 25 (12-22)
Thyroglobulin 36.4 (<115)
Thyroid peroxidase antibodies 144 (<34)
Thank you all.
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Do you always get same brand of levothyroxine
Which brand
What vitamin supplements are you currently taking
Folate is low
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
B vitamins best taken after breakfast
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
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
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Aim for Vitamin D around 80nmol and around 100nmol maybe better
Ferritin borderline low. Look at increasing iron rich foods in diet
Are you on strictly gluten free diet?
Or tried it?
Hi Slow Dragon
Thank you for your reply. The blood
Test was done early before any food or drink other than water. Last dose over 24 hours previously. And Always same brand of meds.Northstar.
I’m confused by your comments re B12 and folate as they seem well in range to me. The in brackets numbers are the normal ranges from Medichecks report.
I take high strength Vit D, vit C and selenium at least 4 hours apart from meds. I was talking multi B high strength but stopped as this was too high well with outside normal range in the previous test earlier in the year.
I have in the past been gluten free for 2 years with no discernible benefit. I
Thanks
Northstar 25mcg is Teva brand and Teva brand upsets many, many people.
50mcg and 100mcg Northstar are Accord
Accord don’t make 25mcg
So you might want to consider getting your prescription changed to 100mcg and 50mcg tablets and then cut the 50mcg in half for 25mcg
Folate under 10 is frequently too low when on levothyroxine
Suggest you change to only Accord levothyroxine and retest in 6-8 weeks
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva
List of different brands available in U.K.
thyroiduk.org/medications-f...
Teva poll
healthunlocked.com/thyroidu...
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
I’m on 150mcg produced by Accord. 50 and 100. I take meds early morning and have ensured the brand is constantz
What is an ideal figure for folate?
Thanks
Depends on ranges
Medichecks don’t list top of range these days....but was always previously listed as 3-26
If taking folate or vitamin B complex most people would expect folate to come back over 19
Some labs folate range is up to 60. Then would be looking for at least over 30
Thank you
Your ft4 is over range so I suspect they might want you to reduce the Levo. If they do, perhaps ask for a trial of T3 to bring your T3 high in range. There's definitely a mismatch in your T3 and t4,levels so looks like poor conversion.
Thank you Jamanda.
I have suspected that I have a conversion issue for some time and these results would appear to suggest this.
I feel I need more meds as I still feel unwell but as you say the T4 is already over range and the T3 is not very highat all. I definitely don’t feel hypo. In fact I’m more exhausted than before my operation.
What was the reason for your thyroidectomy? Most people without a thyroid need a combo of t4 and t3 meds in order to feel somewhat normal again and just increasing the t4 meds just won’t cut it for most of us.
Hello Mazzer
Can I just add that a fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 said to be at about 10 mcg plus a measure of T4 said to be at about 100 mcg :
So, synthetic T3 is called Liothyronine and synthetic T4, is called Levothyroxine ;
T4 is a storage hormone that has to be converted by your body into T3 which is the active hormone that the body runs on and is said to be about 4 times more powerful than T4 with the average person utilising around 50 mcg T3 daily, just to function.
Your conversion can be compromised by low vitamins and minerals, ant physiological stress ( emotional or physical ) depression, inflammation, dieting and ageing.
So a mixed bag, but it is essential that ferritin, folate, B12 and vitamin D are maintained at optimal levels and this is an area you can do something about yourself, as you may well be " in the range " but not high enough for optimal conversion of T4 into T3.
The accepted conversion ratio when on Levothyroxine only is 1 / 3.50 - 4.50 : T3 to T4 : with most people feeling better to come in at around 4 or under:
So, if we divide your T3 into your T4 we get 5.00 showing poor conversion.
Your T4 is over the range and at 130% whilst your T3 is at just around 50% in the range :
Both these vital hormones need to be balanced and usually most people feel at their best when both T3 and T4 are in the upper quadrant of their ranges.
Since your T4 is over range the logical solution is to drop a little T4 and add a little T3 :
Since you have lost your thyroid you have, in effect lost 20% of your overall well being and over time this is bound to pull you down and the adrenals, that pick p the slack in the short term, will also start to suffer under this extra strain on your body.
Personally speaking I just think it makes common sense that if there has been a medical intervention and the thyroid surgically removed or ablated with RAI that both T3 and T4 be on the patient's prescription for if, and probably when, both these hormones will need to be prescribed to bring the hormones into balance and to a high enough level that is acceptable to the patient and restores health and wellbeing.
The thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.
I'm with Graves Disease, post RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism. I found little help nor understanding with my continued symptoms and ill health and I too found myself on here, looking for answers.
There's a lot to take in and understand and just reading of other peoples situations can help with your understanding, especially if dealing with the dreaded brain fog - stuff does sink in.
The Thyroid uk website is excellent source of further information and you can turn a lot of this around for yourself and be better able to ask the right questions of the medical profession and know if you are being given the correct information.
Hi Pennyannie
Thank you for your helpful response. I have spent several years battling with the medics over this. I had a goitre and it was only once this became sub sternal that I got any recognition that my thyroid was a cause of my ill health. I suspected prior to my op that I was not converting adequately but was always fobbed off with the “normal range” response despite a diagnosis of Hashimotos. I was not medicated.
I was hoping that after my operation in September I would feel better on. Levothyroxine. These current results kind of confirm for me that I need To try T3.
Thanks
Hey there -
Yes, even with everything you can control being optimal, without a thyroid, without replacing the T3 your thyroid once gave you, you will be " under par " and struggle more than is normal to just get on with " life " :
Some people can get by on T4 only, some people at some point in time, seem to stop converting , and some people simply need both these vital hormones dosed and monitored independently to restore the patient to their former self.
However obtaining a prescription for Liothyronine however, may not be so easy.
There does appear a post code lottery throughout the uk - excluding Scotland - where CCGs are advising no new prescriptions of T3 and for those patients already on T3 I read the suggestion is to reduce dosage and or encourage switching patient back to T4 :
Doctors in primary care are not allowed to write a T3 prescription and you will need a referral to an endocrinologist.
Thyroid uk hold a list of " sympathetic endos and specialist " who you would be better placed to be referred to, if this is your thinking.
I failed both getting my doctor to prescribe Natural Desiccated and getting a trial of T3 by my local hospital.
I have gone on to self medicate and trialled both T3 and NDT for myself - they both worked and it was like my pilot light had been reinstated and repaired ????
I have settled on NDT and it's now been over 2 years and I am much improved, thanks in the most part to this amazing forum.
Thanks Scrumbler.
I am very motivated to get this sorted as I have felt unwell for a long time. It’s reassuring to read these replies as it confirms for me what I have instinctively known for ages. I felt that I needed to give the Standard route a fair go but it’s been 5 months since my op and 2 increases and I feel that I’m full of T4 raging around whilst feeling more and more exhausted.
Hey there again - just another thought !!!
If you go into - analyseopenprescribing - and then go into analyse you get up a form in which you search by CCG and or surgery who prescribes the most T3 - Liothyronine.
So you can see by surgeries, how " yours " compares to others in your area and if the prescribing is high I would presume your surgery are more supportive than another showing lower levels.
However having tried unsuccessfully to find out, we aren't able to know, by name, which doctors within a group practise are more supportive to thyroid patients than others.
You need to enter the drug as Liothyronine and for NDT if interested, enter Armour :
Hope that wording works, as my knowledge of cut and paste requires scissors and glue !!!
Brilliant thank you
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