Hi, this is my first post, looking for any advice. I have been unwell for several years now, lots of odd symptoms originally non specific, thyroid tested back in 2021 and was raised tsh , I don't have any numbers to share I was just told they were raised and that my tpo antibodies were also positive. I have had further tests with some showing in range tsh and over range tsh, my last set of blood tests were done on 4th December 8.30am no food/fluid before hand, my results were: Vitamin D 60nmol/L (no range) >75 optimal for bone health
Serum vitamin B12 298ng/l range 190 - 883
Serum ferritin 24ug/l range 30 - 200 ug/l
Serum Folate 5.6 ug/l range 3.1 - 20 ug/l
Serum iron 20 umol/l range 9 - 30
Serum Free T4 10.5pmol/l range 9 - 19 pmol/l
Serum TSH 6.9miu/l range 0.35 - 4.94
I spoke to the doctor today who has agreed to do a trial of levothyroxine 25mcg , she advised me to up my vitamin D supplement and to start a B12 supplement and is giving me some prescription iron tablets also, with a retest of thyroid levels on 19th February 8.20am.
Does this sound right in terms of a trial treatment? Any advice on do's and don'ts when taking the levothyroxine?
I was diagnosed with long covid may 2022, still unwell Nov 2023, then diagnosed with chronic fatigue syndrome, now subclinical hypothyroidism as of today!
Lots of symptoms, main ones being, hair loss, puffy hands, eye area, dry gritty eyes, rapid weight gain, poor memory, fatigue, post exertional malaise, slow heart beat at rest, fast heart rate on exertion, to name a few. Any advice welcome thankyou in advance x
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Lots of symptoms, main ones being, hair loss, puffy hands, eye area, dry gritty eyes, rapid weight gain, poor memory, fatigue, post exertional malaise, slow heart beat at rest, fast heart rate on exertion, to name a few.
Most of these can be attributed to low thyroid and very poor vitamin levels and iron levels as direct result
Ferritin is deficient
Folate, vitamin D and B12 all too low
Have you got your levothyroxine yet
Do you know which brand it is?
Standard STARTER dose is 50mcg …..so GP is being cautious
But your ferritin is very low
Important to improve all your vitamins as well as address low thyroid levels
Have you had coeliac blood test
If not request GP does so at next test
High thyroid antibodies confirms autoimmune thyroid disease
Hi, thanks for the reply, I picked up my medication today, the brand is teva, but the pharmacy has given me 12.5mcg instead of 25 mcg, I have to go back tomorrow to get it sorted out. I've also been prescribed ferrous sulphate 200mg up to 3 times a day, again have to collect tomorrow as wasn't in stock today! I had blood tests for coeliac at the same time as the others and it came back negative.
Unless you are lactose/dairy intolerant try to avoid Teva initially as Teva upsets many people
Ask pharmacy if they have Wockhardt or Mercury Pharma 25mcg tablets instead
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots,
Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
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)
Aristo (currently 100mcg only) is lactose free and mannitol free.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
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
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)
Bloods will need retesting in 6-8 weeks
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
starting on only 25mcg may initially make symptoms a bit worse ……persist and push on to get dose increase to 50mcg after next test
It typically takes 6-12 months to slowly increase dose levothyroxine up until on high enough dose and all symptoms resolved
Ferritin will frequently take several months to improve too
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
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
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 folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
No not vegetarian or vegan. I've been taking 50ug vitamin d per day and about once a week take a different vitamin d which is 4000iu have been taking the smaller dose for years as was very deficient before so advised to take a daily small dose. Prescribed ferrous sulphate 200mg up to 3 times a day.
I appreciate all the advice and will need to keep rereading it due to awful brain fog! But will start with the ferrous sulphate for 10 days then look into the others you advise on
Thankyou again for the reply, advice and links, alot to read through. I have collected my correct prescription now, they have given me Hillcross levo, which does say teva uk on the side, I am lactose intolerant, so maybe it will suit me better, what symptoms can I expect if it doesn't agree with me? Bit nervous about taking it now, but will try and hope for the best🤞
How long would it be before I get any side affects, if it didn't agree with me, and what would they be? I feel so unwell most of the time I don't know if I would recognise if the teva levo was making me worse 🤔
Advice: Document everything! Your meds, your appointments, and any other info you pick up about your ailments. I would recommend a journal to keep track of the really bad days and see what was happening around you at that time. Read as much as you can, because you are going to have to be your own doctor almost to make sure of any tests, procedures, and meds that may help. Hope this helps, I’m still trying to get the proper help after several years now - it isn’t easy. I wish you the best!
Yes, my memory is pretty poor lately also. Those of us suffering with disease(s) need to stick together. Nobody knows how bad we feel as someone else going through the same thing. Wishing you the best in your journey.
Ah I had a couple of these trials on levothyroxine a number of years ago. It happened twice under two different doctors. I was horribly symptomatic and slightly raised TSH. I was put on 25mcg of levo and asked at later appointments asked if it had helped. It has made no discernible difference so both doctors stopped the levo rather than increasing it as needed. I had no idea at the time, no more sense than the doctors I was dealing with. I doubt if you will notice any benefit from 25mcg, try not to let the doctors stop it rather ask for an increase pointing out that 50mcg is a starting dose. Work on getting your vitamins and minerals in a good place in the mean time, they make a big difference to thyroid health.
Thanks for your reply Hectorsmum2 it is my worry that they will stop the levo if it appears to not help, I was very surprised that they were going to trial it, so I guess my disbelief is making me paranoid that they will find a reason to take me off it again!! Have been feeling so unwell for so long now guess I'm just hoping for a miracle. Its quite hard to keep up the fight for help, but the doctor I have seen the past 2 appointments has listened and seems to really want to help, just hope I can keep seeing her, as I've seen some doctors who just say I'm depressed etc! Fed up .. yes ... depressed... no! Will work on improving my vitamin levels so hopefully that'll help me too
They will probably go by the lab numbers to decide whether you need more or to stop it. It’s great you have found one that seems to listen and care, but they won’t go by how you feel.
Example: yesterday I went to a new doctor for my pain management. When I asked for help of any kind they told me I “wasn’t a good fit for the practice”. I expressed my dismay at that comment and inquired what they meant by that. The response was that I was at too high of a dosage of opioids and as such too much of a risk of overdose.
Again dismayed, I responded I was more than willing to reduce the opioids and that I already had started weaning myself down. It was still a no, can’t help you and they turned around and walked out of the exam room. That was it, Good bye 👋🏼
I thought doctors were supposed to have some sort of oath about ethics in caring for their patients. When did they abandon it? I don’t remember reading about it. Aha, the Hippocratic Oath, named after Hippocrates. I wonder if this is where hypocrisy and hypocrites come from: doctors.
Sorry, starting to vent and that isn’t good for either of us. Wish you the best of luck and Happy Holidays!
Wow, sorry you've had that happen, when the whole point of their job is to help make people feel better and you get fobbed off, ignored, etc , it's amazing how so many treat their patients so poorly.
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First results after starting Levothyroxine 
Medi checks blood results
Igennus Super B complex or a multivitamin when only needing modest B12 supplementation to achieve a good level of B12
Update test results after 2 month. I need help to understand if I’m going on the right direction! 
