Newly discovered Hashimoto's from private blood test, due to see GP and also a private thyroid specialist in the coming weeks and thinking about what I want to do. Plan is to try and get Levo from NHS GP, and then look more in depth with private doctor about the full picture with vitamins, cortisol etc. and potentially get T3.
I'm interested in starting off with a T4/T3 combo rather than Levo only (and I know the private doc does do this) because conversion issues seem likely. Has anyone else done this (started straight off on a combo rather than T4 only first)?
Would be trying NDT but cost is high and worth seeing if synthetics tolerated first. Health history is a bit complicated by a connective tissue disorder (poor absorption/uptake of everything) and a long period of intense stress. I'm doing a full cortisol DHEA test, but it's likely there'll be some issues. Have also probably been hypo for about 10 years.
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seveneleven
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I'm interested in starting off with a T4/T3 combo rather than Levo only (and I know the private doc does do this) because conversion issues seem likely.
How do you know conversion could be an issue, is your TSH 1 or below with high FT4 and low FT3? That's the only way you'll know if you have a conversion issue. Are your key nutrients optimal (they need to be before starting T3).
Maybe post your results, along with their reference ranges, so that members can comment.
I wouldn't jump the gun, start with Levo which is the norm, give it some time to see how you get on and to see whether or not you might have a conversion issue. If you do well with that (as very many people do) you'll save yourself a lot of money.
Thanks, that's helpful. Finding there's just so much info to get to grips with it's hard to know. Recent results seem to show fluctuating T4 (added below). I'm doing another private test this week because I want to get up-to-date vitamins to see if supplementing is helping and get one more thyroid baseline before I start any treatment (guessing having two above-range tests will help me NHS wise).
One thing I would say about starting on combo treatment is that I have seen people here who have done that and in later years when finance is perhaps tighter and their situation different they then do not know if levo only would have worked for them and they always wonder. At that point it's a lot harder to go back and try levo only. If you try it and assess your conversion rate as you go along then you will know at least in your own mind what is right for you.
By the way it's really not possible to assess if you are converting well until you have reached at least very close to your optimal dose of Levo + all key vitamins are at optimal levels.
That's a good point, thank you. Think I'm just anxious about being even more out of action with work commitments looming in the coming months. But I suppose there's really no way of knowing what will work beforehand.
People can sometimes feel worse on starter doses of levo (and any treatment option) as it doesn't fully replace their original output. That's something to think about.
There is a genetic test that might indicate if you will have problems. Sometimes when we have these genes they are not 'switched on' though so people might get this test done once they have tried Levo and appear to be having conversion issues. Even if you had this test done in advance and it was positive, I would still recommend trying levo only until you got to an optimal level on that. regeneruslabs.com/products/...
Ah yes have thought about this test but prioritised cortisol for the moment. Have already got a genetic condition, and the whole family is a bit wonky and can never seem to raise vitamin levels etc.
I've seen different things about starter doses...some 25mcg and sometimes 50. Is lower/higher better, or does it depend on weight? Aware I should probably know what to ask for from GP in case she doesn't treat thyroid much.
Aah I sense a common issue here. Honestly there is no point in ‘pushing’ this process for commitments of any kind. The blooming process takes its own course. Pushing it tends to do the complete opposite! This illness tries our patience to the limits. I hope you take advice and do the levo route first for all the reasons you have been given.
I'd recommend pushing for a 50mcg starter dose as per NICE guidelines for healthy people. people with cardiac issues and the elderly start on the lower doe of 25mcgs.
There is a weight calculation as to how much levo you will eventually require. It's not precise though and I wouldn;t recommend starting out at that dose. It puts people ito a state of shock sometimes.
Cortisol is often low when hypo.
I have hEDS myself, POTS, Pandysautonomia etc If you're taking a good amount of vitamins then raising their level isn't an issue. Iron/ferritin can be very slow and difficult to raise in the general population anyway. Recommend testing ferritin, folate, B12 & D3 and supplementing individually to get levels optimal. Multivitamins not recommended.
NICE recommends dosing by weight - only a suggested starter dose if over 65 or CV issues.
1.3.6 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.
1.3.7 Consider starting levothyroxine at a dosage of 25 to 50 micrograms per day with titration for adults aged 65 and over and adults with a history of cardiovascular disease.
That's NICE for you! I agree it's nuts when you read it like that! The worst thing is that doctors often use NICE slavishly without thinking for themselves...
That's really interesting and helpful! Am a researcher and often find that NICE guidelines are either wacky or out of date with current evidence, and they're taken as gospel even among a lot of academics. Deep sigh.
Mostly TSH but have had the odd FT4. No test since change of make.
But have been taking levothyroxine long enough that I have convinced myself I have an idea when dose is wrong. And the odd time I have felt even slightly over-dosed, it has been unpleasant. Far more so than might have been expected - e.g. 100/112.5 alternating versus 100 every day. So an average of just 6.25 based on claimed dosages.
Just wondering, would a 'happy medium' starting dose for 95kg be 100mcg then? Or is 50mcg just a safer bet in case you overmedicate? Maybe it doesn't really make a difference if you titrate up fairly quickly anyway.
Prescribe 50 in most cases. But allow the person themselves to increase dose, as they think and feel appropriate up to, say, 90% of full predicted dose. And supply with a suitable range of tablet dosages.
Provide the person with a well-written document which explains the process. Suggesting that small, even tiny, increments can be good. That dropping back from a dose increase could be sensible. Remind that the result of a dose usually change takes time to be noticed. That they might want to ramp up to, say, 75% very quickly. And that the feeling of "running out" by end of day is quite a good sign that an increment is required.
Provide the person with a ready-signed blood test request (or whatever is required with the technology in use). Thus they can go and get another test when appropriate - and not have to persuade a receptionist to ask the GP to send a request out.
Encourage the person to contact the prescriber if they feel the need.
Encourage the person to consider making contact with other hypothyroid people.
I know this is ultra-idealistic, especially these days. And this approach wouldn't suit everyone. But the truth is that doing something towards this this might actually reduce the cost of handling the person's needs.
Thank you, that's helpful. Hopefully GP will be amenable (have to convince her to prescribe in the first place based on private bloods), but backup is private thyroid clinic, so will get started either way and go from there.
Hi, yes I started off straight away on combined therapy (NDT) as I had reason to believe I have conversion issues and I’d read so many horror stories of people getting much worse on T4 monotherapy and wanted to avoid that.
Mm, yes it seems everyone responds differently. My sister does great on T4 only, but she started when she was 8...I guess before things had a chance to go too haywire! Are you finding the NDT is working for you?
Thank you, was wondering about brands. Think I want to avoid Teva with mannitol as have gut and bladder issues. Do I just request a specific one from the pharmacy, or does it have to go on the prescription specifically? Not dealt with prescriptions of any kind for years. Wonder if I might be ok with lactose ones though as take anti-histamines sometimes, and they're usually lactose. Suppose just have to try and see what works.
I started off with T3/T4 (Novothyral). Ideally you have done blood test for FT3 and FT4 before taking combo medicine (the figures you published make me wonder if you changed lab? Try to stick with same lab to be able to compare results (reference ranges and testing kits vary). Start with low dosis like 25 mg for two weeks, see how you feel before going 50 for a fortnight. Testing regularly is important in the first year. Every person has his/her individual "feel good parameters" for TSH and T3 T4, it is more important how you feel rather than the figures of the lab printout. I have alternated over years between combo (more expensive) and Levothyroxine without problems (but based on blood work and how I felt). State of intestines (microbiome) is important as it affects speed and degree of absorption/efficacy of thyroid hormones.
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