I've just gotten off the phone to my GP and she said I didn't need my Levo increasing. I'm currently taking 50mcg, they started me on 25mcg? She also said my low ferritin didn't need treating. I had an iron panel which was normal apart from the ferritin.
I'm supplementing myself with Vit D spray because it was low over the summer and taking Centrum Performance multi vit.
She wants to see me tomorrow because she wants to rule out.....drum roll.....cardiac issues! I've been breathless, fatigued and generally unwell since last April. I just thought it was all down to being undertreated and being anaemic?
Any help and guidance would really be gratefully received.
Thanks in advance.
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Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
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.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
That’s a very good idea, thank you SlowDragon. I was told i was having a full panel. Excuse my ignorance but what would the full panel show? I really appreciate your help. 😊
Many people find Levothyroxine brands are not interchangeable.
Which brand of levothyroxine are you currently taking
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
Are you currently taking Teva?
Teva, Aristo and Glenmark are the only lactose free tablets
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)
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
Low iron and/or low ferritin frequently linked to hair loss
Heavy periods are classic sign of being hypothyroid and will lead to low iron and ferritin ask for full iron panel testing for Anaemia
Never supplement iron without doing full iron panel test for anaemia first
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Thanks again SlowDragon, This is why I’m so frustrated at the moment. It’s such a complicated condition & is so ‘chicken & egg’. And a lot of GPs are winging it when it comes to advice.
She made me feel like a hypochondriac this morning.😢
"Obviously you need 25mcg dose increase in levothyroxine ... " says the wise and kind SlowDragon . Your TSH is MUCH too high and your free T4 is on the floor. You need this to be at least 2/3 through the reference range [and to test free T3 at some point and for this also to be nice and high in range]
Multi-vitamins are not generally recommended here - greygoose does an excellent analysis of why they're not worth taking - in summary they contain too little of the stuff you need.
You must feel rubbish with these results - but hopefully you can get the dose increase you so desperately need and feel well soon x
You are not wrong in your initial statement - as it is mostly down to being under medicated and low vitamins and minerals.
When my ferritin was at 22 I was breathless, exhausted, and everything you are currently feeling :
I've found out that I feel at my best when my ferritin up at around 100 for optimal conversion of T4 ; and the anti depressants readily prescribed are not the answer, and yes, we are all made to feel like hypochondriacs because doctors are not taught about vitamins and minerals and don't acknowledge their own short comings and specialise in making, especially women, feel small.
I need my vitamin D at around 100, folate at 20 and serum B12 at around 500 + :
Your TSH is too high and your T4 too low - a dose increase in Levothyroxine is one step needed to help you start metabolising for yourself, but initially you'll also need to start supplementing both vitamin D and especially ferritin to build up your core strength.
Asda do little tubs of frozen chicken livers and I keep myself topped up with one tub a week - they are very clean and mild to taste. Defrosted and flash fried down in a little olive oil I then whizz this down into a pate and store in the fridge, taking a spoonful each morning, with a dollop of mayo, helping this little medicine go down.
Is there another doctor in this surgery who might be better clued up on Thyroid health ?
I'm with Graves Disease and post RAI thyroid ablation in 2005 and manage lingering Graves, thyroid eye disease and hypothyroidism and now self medicating and much improved.
Well. I don't like them much either but those chicken livers are so mild - and with a dollop of mayo the taste is over ridden.
I couldn't get on the prescribed iron tablets and wasn't offered an alternative and started off with Solgar Gentle Iron and Spatone liquid iron and eating loads of liver.:
There are other brands and options out there, and bit of trial and error, as always.
I did ask for an iron infusion but that went down like a lead balloon.
I think once I got to about a ferritin level of 40 my breathlessness eased and I knew I was improving but it was a slow build.
Well, Hugs all round then - you will get better health, believe in yourself, 'cause you are not wrong.
If you find yourself against a brick wall, that you know you can't go through, just back off, as you can always go around this obstacle.
There are other options available and you can do all that needs to be done without the additional stress and upset of trying to be understood by someone who is not prepared to listen,
Well, I was also going to write last night, not to loose any sleep over this, but thought just the suggestion might trigger a restless night !
Seriously, the private companies can offer finger prick test kits you can do in the comfort of your own home, and some offer home visits where a nurse visits you and does it all for you - though think with Covid that may have been suspended.
All you can do is ask your doctor, and it seems many are now restricted by what they can do, so try not to take any of this to heart :
There are options, and yes, it shouldn't be like this, and not what any of us grew up believing the NHS was, but there we are.
Sadly, the options cost money, but it was the only way I managed to turn things around for myself.
No, don't cry! [sending you a big hug from the south coast]
We've all had to teach ourselves, because GPs do very little on thyroid as part of their training (and nothing at all on nutrients). Have a good rootle around the hypo section of the main Thyroid UK site and look at helvella 's excellent glossary [in "pinned posts"] to help get to grips with the jargon
Idiot's guide to what you are aiming for: low in range TSH; high in range free T4 and free T3; middle of the range nutrients - with vit D in 3 figures
It can take a while to get the meds you need (and a supportive GP so if yours is an idiot can you see someone else?) - but there's absolutely no reason why you shouldn't feel tip-top once you get it right x
You have such a lovely way with words! Thank you! 🥰 I shall go now immediately and look at the links you have suggested. Thank you so much and for the lovely hug....I’m a massive hugger and missing them the most at the moment. xx
Your ferritin seems low but another part of the puzzle is haemoglobin. Haemoglobin is the fire, the ferritin is the store of coal to keep the fire going.
Doctors won’t treat your iron unless you go below the range but that doesn’t mean you can’t top up yourself with a supplement.
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