I'm really puzzled about my thyroid journey and I'm a bit stuck about where to go next - any ideas would be gratefully received....
When first diagnosed 4 months postpartum back in 2010 I ended up on 200mcg Levo - never felt well, symptoms didn't resolve, weight kept creeping on etc. Labs were always in top 25%, always had a suppressed TSH of 0.1 - sometimes down to 0.01.
2 yrs ago I switched to Thiroyd NDT to see if that would help - got up to 5 grains and started gaining weight v quickly up to 4lbs per week (I was eating low cal which I know prob didn't help).
Last summer I switched over to T3 only, got up to 125mcg split over 4 does per day, again it caused extreme weight gain. My weight doesn't creep on however it seems to spike up in jumps, i.e. 8lbs overnight which I reason to myself is water but it never comes off, need bigger clothes etc, so might be mucin but still feels like fat.
I stayed on t3 for 7 months then went back to original dose of 200mcg t4 and slowly added up to 40mcg t3 - again symptoms cold, brain fog etc never really resolved and the weight continued in spikes - I've now gained over 25lbs since I was dianosed and at 5'3" it's noticeable. 4 months ago I cut out all white carbs/sugar, kept low GI veg, berries etc, strength training 3 times per week and this has had no impact on weight which is frustrating to say the least - although it hasn't been spiking up it has been completely static for months (up and down within 1-2lb range). Importantly I noticed that when I took my t3 doses my pulse and temps dropped considerably within 2 hours.
I started to wonder about thyroid resistance of some kind given the previous doses of various meds haven't had an impact - so in pure frustration I stopped all meds over last 2 weeks, in this time my basal temp has steadily climbed from 35.8 to 36.7 (glass therm) and I've felt much better mentally, mood wise, no change in weight.
I am feeling a bit chilly and tired by 8pm though, so last night I thought I should add in t3 again because despite feeling better I'm worried about causing harm, I took 25mcg at 5am this morning, but temps have dropped again and I feel cold in my bones and miserable this morning temp back down to 35.9 - I guess I'm wondering if my body is somehow blocking exogenous thyroid meds regardless of the dose (don't even know if that's possible).
I have a medichecks kit ready to go to test bloods but not sure whether to continue with no meds for a while before testing (how long?) to get a baseline - keep going with t3 but go higher than 125mcg even though it didn't work last time?
I'm really stuck... I'm also supplementing with Multi Mineral, Selenium, Thiamine & Iron + 1000 vit C for low Ferritin. Ferritin which was 25 (15-150) taken last week, it has been 25 for last 7 yrs, doc not interested because in range, TSH only was tested and was 0.02 (not helpful I know).
Apologies for writing War and Peace - if anyone has any ideas, advice or I've missed anything obvious I'd really really appreciate it... xx
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katyfow
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I think I’d stay off all meds and test (the T3 you’ve just taken will be completely out of your system within a couple of days) - then go from there. You need TSH, FT4 and FT3 as a minimum for testing. You mentioned post partum - which makes me wonder whether your hypothyroidism actually would have resolved if you hadn’t taken ever higher doses. Then again, it may not!
Do you know if you have Hashimoto’s?
And have you ever tested B12?
Finally, as your ferritin won’t come up - have you ever considered something like gluten sensitivity? How are your bowels?
Thank you so much for your reply and your advice - that's what I wondered, when I was first diagnosed my TSH was 200> and my FT4 was well below range at 1.4, I was referred to an endo and he said these were the most extreme levels he'd seen and I would need to take levo for life - I never thought anything more of it just relieved to know why I felt so bad!
It was only a couple of weeks ago when I was so frustrated that I started tracking backwards and reading up on postpartum thyroid, and I realised that with postpartum medication is usually stopped after 1 year to see if thyroid lasts on it's own.
Both tests for antibodies were done at diagnosis, I can't find the results but don't recall Hashi's being mentioned, or there being a flag about them at the time. B12 hasn't been tested since 2016 but then it was 661 (197-771) so was pretty good.
Bowels are ok - because I've cut carbs/sugar except Paleo style low carb veg/berries I've eliminated all gluten sources that I can think of - they tested for Coeliac at the beginning which was negative but I know lesser sensitivities wouldn't necessarily show - maybe that might be the key and the Ferritin might start to rise with this w.o.e. - fingers crossed.
I know this may well sound a little kooky but... compared to 50 yrs ago, we (even men) are exposed to so many xenoestrogens (fake estrogens) and they sure mess up our hormones at seemingly younger and younger ages. I wonder if maybe using a natural progesterone cream (over the counter) might be of help to you? The progesterone cream can blunt the effects of too much estrogen which may be impeding your absorption of thyroid hormone into your cells. The progesterone also enhances the sensitivity of our cells to all our hormones, not just thyroid. I had awful insomnia (came on suddenly) and the use of natural progesterone cleared it up within just a few weeks.
Here is an excerpt from an article by Chris Kresser that explains this.... " Second, elevations in either testosterone or estrogen (extremely common in hypothyroid patients) affect the levels of circulating free thyroid hormone. For example, high levels of estrogen will increase levels of thyroid binding protein. Thyroid hormone is inactive as long as it’s bound to this protein. If you take thyroid replacement, but you have too much binding protein, there won’t be enough of the active form to produce the desired effect."
If you decide to use natural progesterone cream, just count the first day of your period as day one. Count 10 - 12 days then start applying approx. 10 mgs each day for 10 - 12 days then stop. Your period should start within a few days. Apply the cream to alternating sites in order to avoid saturation at any one spot. Most instructions say to use 20 mgs per day but, over the years, this has been found to be a little much for most of us.... 10 mgs seems to be a good dosage.
Do read/purchase this book if you want more information. It is usually available on Amazon.. "What Your Doctor May Not Tell You About Menopause". Here is a site that has OTC natural progesterone in the UK. nhmpersonal-imports.net/aca...
Others may have their favorite progesterone creams. By the way, progesterone (natural... not the rx type) helps in other ways besides cell sensitivity. Bone health, brain fog, mood etc.
Thanks so much for your reply - I haven't considered/read up on estrogen/progesterone, I'll take a look, thank you for the links and book recommendation.
I have read a previous post about your mother's unusual Thyroid test results. She also seems to have thyroid issues could indicate a genetic condition in your family. Thyroid hormone resistance is genetic and would be a strong possibility.
Treatment for thyroid hormone resistance was developed by Dr John Lowe and involves a single daily dose of T3. Multiple doses do not work. It is also best to take the T3 away from food and drink, which can reduce its effectiveness. Dr Lowe found that people can need very high amounts, although most people feel well on 100 to 150 mcg daily.
Thank you for your reply - that's very interesting. I've been reading Dr Lowes articles this weekend on ThyroidScience.com. I'm going to hold off and test bloods on Wed, then once I have a baseline I'll look into a single dose from there if necessary - that might be the key, I certainly seem to have been able to take high-ish doses without experiencing any effects for some reason.
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