Need your advice on what next, two years after Hashimoto's diagnosis. I've supplemented like a demon over the past year - Vitamins D, B12, C, selenium, multi-vitamins with minerals, iron, Omega 3 fish oil.
Bloods much improved but still have borderline low levels of FT4 and FT3, ice-block feet, puffy face and body despite Paleo eating, low basal temp (35.4 to 36.2), dry thinning hair, threadbare outer eyebrows, dry, itchy skin, low mood and bouts of knock-me-over fatigue.
Stopped taking Nutri Thyroid glandular regime (from functional meds doc) last November to get a clearer picture of thyroid hormone levels. Had been on them since last March and, though TSH fell <1, thyroid hormones remain stubbornly low, just within lower NHS range.
Also stopped bio-identical HRT for two months to see if it was a factor in 2.5 stone weight gain just before and after Hashimoto's diagnosis in April, 2013. Weight did not budge but insomnia returned with a vengeance, along with joint inflammation (history of sero-negative Rheumatoid Arthritis).
Still doing water aerobics, bodypump (strength training with weights) and yoga - gives me energy, keeps me sane.
Gluten-free since March, 2014 - making everything from scratch, nothing processed - and sugar intake remains near zero.
Latest blood results:
Folate 14.9 (<2.7)
Ferritin 68 (20.0 - 300.0)
Vitamin D 76.2 (70.0 - 150.0)
B12 766 (160.0 - 800.0)
TSH 1.25 (0.3 - 4.2)
FT4 11.2 (9.0 - 23.0
FT3 3.7 (2.5 - 5.7)
TPO antibodies only down to 260 from 598 (despite gluten-free)
Endo visits were useless but seeing nice, newbie GP on Tuesday.
How best to boost thyroid hormones? Trial of levothyroxine? If so, what starting dose and when increase? Was on Synthroid for a year at puberty when first had low thyroid hormone levels. Now 57, post-menopausal. Frightened of all the stories of hair falling out and the rest but need to try something.
Huge thanks for your advice
Maxi
xx
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MaxiFrustrated
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Classic response from diagnosing endo when lived in Switzerland - watch and wait: "yes you have an autoimmune attack underway but your TSH is only 3.47 so monitor".
Six months later, when back in London. GP endorsed ongoing monitoring and referred me to endocrinologist.
While I waited 6 months for that appointment, went privately to functional meds guy who put me on what I now know is the routine three Nutri Thyroid products. They skewed the picture, nicely suppressing TSH but leaving thyroid hormones in the basement. Endo thus declared me euthyroid. GP deferred to endo. Endo wedded to TSH and only TSH, simply does not acknowledge clinical symptoms.
Functional meds guy lapped up my deepening knowledge of all things thyroid, irritatingly asking me what I thought was wrong and pushing me to do more £££ tests so I dumped him.
So I've built up my vitamin and other hormone levels in readiness for meds.
Sometimes we do go round in circles. If you email louise.warvill@thyroiduk.org and ask for a copy of the Pulse Online article by Dr Toft of the BTA and read what he says about antibodies. I think you should now take things into your own hands as you have begun to do.
If your GP won't prescribe levo according to the guidelines by Dr Toft, you may have to 'go it alone' as some have been forced to do. You will get support/assistance from members who've had the same experience.
If you have antibodies they are attacking your thyroid gland and eventually will be hypo. Dr Toft says levo can 'nip things in the bud'.By that I think he means that you are going to be hypo anyway why not begin medication until the TSH reaches the 'magic number' 10 which is ridiculous in itself as 10 is far too high if people have clinical symptoms.
Thanks Shaws. Beyond dizzy from all the circling we all seem to end up doing.
Have read that article at least six times over the past two years.
From all the reading I've done re Hashi's, it seems most do best on NDT but what a faff it seems to get it - more trouble now than ever.
Love to get some feedback from anyone with Hashi's getting good results from Nature-Throid. I can no longer afford to pay outside NHS as barely working. Named-patient basis from GP still works for some yes?
Very few I believe. It's ridiculous really. They give levo and then umpteen other meds for the symptoms rather than a decent dose of anything that might make us well with no need for 'extras'. Probably costs more, i.e. visiting GPs, unable to work or carry on a normal life, etc. ect.
Maxi, Your regime has improved your TSH and lowered your antibodies but I don't think you will get NHS treatment until your FT4 or FT3 drop below range or your TSH rises over range. Your symptoms sound hypothyroid but most doctors will tell you they are non-thyroidal with your latest results being within range. I don't think you will get a trial of Levothyroxine so you may have to consider self-medicating unless you are prepared to wait for your thyroid to deteriorate. Some people do experience hairloss when starting Levothyroxine but not everyone and it will usually subside in a few months.
VitD is in the optimal range but you might consider supplementing 2-3,000iu softgel capsules or spray to boost it up the range as good levels of vitD aid T4 to T3 conversion.
Ta Clutter. Taking a sublingual spritz of 1000 Vita D spray daily but perhaps I'll bump it up along with my 20-minute forays into the garden with my sleeves rolled up.
Pls have a look at my response to Shaws - looking for feedback re Nature-throid as many Hashi's peeps seem to do better on NDT from the off.
What think?
Can folks PM me with best sources if I do end up going it alone?
Maxi, Different meds and brands work for different people. Some Hashi patients don't do at all well on NDT and are better on synthetic T4, T3 or T4+T3 while others do extremely well on NDT.
It's rare to get NDT prescribed on the NHS which is why so many self-medicate.
Why not start with Levothyroxine and see whether it suits? You can always try adding T3 if it doesn't and NDT if neither help but you do need to trial each for at least 3 months. Thyroid is no quick fix
Perhaps I should try for a trial. Read somewhere that only 15% of Hypo folk don't get on with Synthroid / levo or other synthetics. Since it is indeed what's on NHS offer, perhaps perhaps.
Just did another tour of the STTM site and many postings about levo v NDT and my Sunday brain is shutting down for the night.
Hi - I am new to this forum and see it has been a few years since ur last comment but wanted just reach out. I totally relate to everything u were going thru and wanted to say that doing almost everything the same I am in naturethroid and it has changed my life. The fog lifted and for the first time in months I felt like myself again... I hope u have been doing well on ur journey!
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