Hi, it's been a while since I've been on here and, up until my operation last May I had been stable and feeling good for a good two years on Levo 125mcg and having done AIP and massive lifestyle changes two years prior... Since May I have felt awful, no matter what changes I make to diet, lifestyle, I feel awful!
Right now, I am really really struggling. My symptoms are horific; I am having constant joint pain, irritability, inability to cope with stress, brain fog and so on and so on and so on... No help from GP, who says TSH normal (always has been since first diagnosed and started Levo). I did a medichecks Ultr Vit Thyroid check and free Thyroxine hight at 24.55, Thyrogloblulin antibodies at 123.400 & TPA at 130.7 both very high, but inflammation markers low. My Vit D low but not deficient.
I am really wanting to start to feel better and have been thinking perhaps a shift to NDT?? What advantage will this have over Levo (I am fully aware of the disadvantages iro cost and sourcing, etc. but open to that if will improve my symptoms and make headway with antibody count?) Maybe going back to strict AIP and going back to basics, eliminating any foods triggering antibody flare ups??? At a loss as to what else I can do....?
I really want to feel well. I'm not struggling with weight gain (infact have lost quite alot of weight since my operation in May 16 actually) and possibly my symptoms are more akin to hyper? (My sister has Graves and our symptoms are similar at the moment).
I am really struggling so any advice / thoughts would be so welcomed. I am seeing a new GP at a new surgery next week and although skeptical of support, I am still hopeful that I may get some support and wellness.
Many thanks in advance
RobynSM
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RobynSM
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Hi - whilst your b12 is in range it may well be causing you problems. Anything under 500 can cause issues - this is the minimum level in Japan, for instance, but uk range is too low. It is usually recommended here that the level is kept to around 1000 for optimum use of thyroxine. The normal supplementation is with 5000 sublingual methyl cobalamin, accompanied by a mixed b vits to balance and maintain your folate levels - b12 supplements will use that up.
Your vit d is also a bit low and could do with supplementing as well, 5000 in per day for 3 months then re-test is the normal advice. Ideal is in range 100-120.
I don't see a ferritin level - have you had that tested? It needs to be a minimum of 70 up to mid-range.
Bringing these up may help with t4 to t3 conversion but you may still need some t3 or ndt as Clutter has said.
Hi Gillian, thank you!!!! I'm looking at ordering the B12 now (I use the Biocare vit D & will probably go for same brand?) I didn't have Ferritin checked this time, will look at getting tested now - thank you.
Do you think NDT would help? T3 looks optimal on paper? Was thinking of switching from Levo to NDT completely; but understanding from your message is supplementing levo with NDT?
Thanks Gillian, really appreciate your thoughts, x
Sorry - your ft3 is probably not optimal - it is only 29 % through the range, most people will feel better with this in the top third. But your t4 is over range so conversion from one to the other is not good. Nutrients may help but possibly not enough. There are several options for treatment in general - T4 only, T4 +T3, NDT and T3 only (also ndt + t3 or t4 combo possible). This is the order of least demanding to most. Different people suit different methods and it is usually a matter of experimentation to find which suits. I would be inclined to add some t3 to your levo to begin, but you would need to get nutrients a bit better first as any deficiencies could make it difficult to tolerate t3 .
Steady as she goes, it is better to be patient and build up slowly, tempting as it is to get better right now!
BTW there are timing issues with when you take supplements relative to food, levo and each other, suggest you make a new post when you are starting to get more detail - I am no expert!
Thank you Gillian Really grateful for this advice today - will start with Vit D & B12 and looking at NDT as a possible switch over time, perhaps like you suggest a T3 as well as Levo an option; will see what transpires with new GP on Thursday, if not lucky will do gradual switch to NDT.
I take my levo first thing in the morning, half hour to forty mins before b'fast - was taking it in the evening last thing at night but was taking magnesium then so switched to morning.
So appreciative of this support - and interpretation of results; I thought B12 & T3 within range from results. Thank you!! x
Did your Medichecks test include FT3? If FT3 is low you will probably benefit from adding Liothyronine (T3) or switching to NDT which contains T3. It is very difficult to get T3 prescribed on the NHS due to cost and a private prescription will cost £258+ for 28 x 20mcg so many members buy European T3 online without a prescription and self medicate. NDT isn't licensed for UK use and is rarely prescribed on NHS and most members using it have a private prescription or buy online and self medicate.
Thyroid peroxidase and thyroglobulin antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
Hi Clutter, thanks for response - my T3 is within range (are you suggesting that if fine NDT won't have any advantage over Levo?) Yes have Hashi's & have been managing it with GF and initially (four years ago now) did AIP for six months followed by slow introductions, it was a hard journey but felt good and was stable for a further good two years - but since last May (2016) I have been feeling hideously symptomatic again, symptoms are so bad; aching joints, sluggish, exhaustion with bouts of manic energy in between, wading through treacle feeling, irritability and constant exhaustion.
Vit D is low but not hugely so, I do supplement anyway, but will increase and see if makes a difference. My antibody levels are really high which (to me) indicates something is triggering the flare up? But, inflammation markers are low so just not sure. I'm aware of NDT limitations iro named prescription (if lucky) and privately sourcing - prepared to do this if it will help, but if only effecting T3 then that isn't where my issue is as is within normal range and I'm so symptomatic? I'm also prepared to go back to AIP and start from scratch again if this will help. (I've posted my results above).
In range doesn't mean fine, it simply means it is within a very broad range. I think you are a poor converter because FT4 is over range but FT3 is low in range. I believe you'll benefit by reducing Levothyroxine dose slightly and adding some Liothyronine (T3) to raise FT3 or switching to NDT which has T3 in it.
Suppressing TSH <0.1 will reduce stimulation of the thyroid gland and help reduce Hashi flares and symptoms.
Low vitD will also cause joint pain. I would supplement 5,000iu daily for 6-8 weeks and then reduce to 5,000iu alternate days and retest in May. VitD is optimal around 100 nmol/L. Take vitD 4 hours away from thyroid medication.
Clutter, this is so valuable to me - thank you. So, thinking about converting to NDT and recognition this will most probably be an unsupported process on part of GP is slightly scary.... Any suggestions of resource / support for this process?
Also, suggestion of suppressing TSH further - I do that with levo at moment, and when / if switch will be with NDT; guessing it would be about adjustment of dosage to get optimal levels of TSH, as well as other hormones?
I've just ordered B12 (Biocare) and will research articles you've provided links for - so grateful for the support Clutter, thank you
TSH 1.67 isn't suppressed. <0.1 is suppressed. I don't suggest you increase Levothyroxine dose to suppress TSH because FT4 is already over range.
I would reduce Levothyroxine to 50mcg and add 1 grain (60-65mg) NDT. Two weeks later stop taking Levothyroxine and increase NDT to 1.5 grains. Two weeks later add another 1/2 grain NDT. Hold at 2 grains for 6-8 weeks and have a thyroid function test including FT3 before increasing further.
If you want sources for buying NDT send me a private message by click on my user name and clicking on Messages.
Sorry, forgot to say, with vit d3 there are important co-factors. Vit k2-mk7 helps re-direct increased uptake of calcium to bones rather than arteries and the other one is magnesium. There are several different forms of this - avoid oxide - I use citrate. Xx
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Really grateful for this advice today - will start with Vit D & B12 and looking at NDT as a possible switch over time, perhaps like you suggest a T3 as well as Levo an option; will see what transpires with new GP on Thursday, if not lucky will do gradual switch to NDT. 
Please help with test results!
Help with results
help with thyroid and antibody results please
Results help please
