Hi, I know this is a UK site, but I'm hoping someone may have a bright idea to help me decide what to do next (sorry it's a bit long!).
I posted a few days ago about my latest set of test results which showed FT3 @ 74% of range, but despite this I had a number of symptoms return or get worse. I've been trying to figure out since whether I'm being a hypochondriac or whether there is something else going on.
The one thing I hadn't seriously considered was that as some of the symptoms included a return of allergy / sinus / itchy skin which had been helped with antihistamine, could it be that there is something in Synthroid that was the problem (I had been taking Actavis in the UK which wasn't perfect but was OK).
A Google search threw up that it has a number of additional ingredients In Synthroid, including povidone, talc and acacia. A bit further down the page it listed the known side effects of Synthroid, a lot of which tally with what I'm experiencing!
I needed a repeat prescription so went back to the doctor today and suggested that Synthroid wasn't agreeing with me and that I don't think my meds should have been reduced. She wouldn't agree to changing the dose, but agreed that I may be having a reaction to Synthroid so gave me a prescription stating that it wasn't to be Synthroid to see if that improved things.
The only problem is that the only other alternative brand available here in Canada (eltroxin) has pretty much the same ingredients and has got worse reviews than Synthroid.
A referral to an endo isn't on the table and even if it was is likely to take months, and I'm not working so can't afford to go private, so now I'm stuck again and not sure what to do - keep taking Synthroid, try and source Levo from outside Canada or if I'm going to have to go through the he hassle of importing, just give up and move onto something else (thyroid gold / NDT) to see if I do any better on that.
Apparently Actavis is the only Levo that doesn't include Acacia (I think this ingredient might be some of the problem), but it is only available in the UK - has anyone managed to get a UK pharmacy to ship it overseas with a prescription?
Alternatively I'm going to be in Hong Kong / Thailand in a months time so could try and get something there to trial - does anyone have experience of buying over the counter there or do you need a prescription? If anyone has a reliable source of a product without too many fillers could you please PM me details?
Thanks in advance.
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Kiwidel
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You're a star! It sounds good, just looks like it's not available in Canada and is horrendously expensive in the US. 😕 At least I now have the name of an alternative. Thanks!
Hi. Interesting post. I am from Canada too and I have found I can't tolerate Synthroid. I definitely have a reaction to it but my doctor does not believe me! Since coming off synthroid I have had less bloating, less stomach pain, and drooping on the right side of my face has cleared and my very low mood is gone. I still have a itchy rash that has not cleared. I honestly think it is an auto-immune response. Anyways, I know you are seeking alternative medications. I have been on Erfa and it has been the best so far. Apparently there are quite a few varieties of thyroid medications available but for whatever reasons the Endos refuse to prescribe. I have been having difficulty finding something that works. I'm very tired and It's very frustrating!
Yes, I share your frustration. It's a bit of a roller coaster - I left the Drs feeling positive that I might have a way forward, now I feel like I'm being forced to either keep feeling unwell or dropout of the medical process and source my own medication / blood testing.
I'm nervous about this as I'm meant to be monitored for my low immune system so I don't know if me going off piste with meds will stop that happening.
I asked the dr about Erfa a while back and she said that it was rarely prescribed - have you had it prescribed or are you sourcing it yourself?
At the moment I think trying to get thyroid gold from the US is going to be my best / least expensive option, assuming of course it will get through customs.
I'm only a drop in patient at the moment and all of the Drs I've researched that are open to NDT seem to not be taking patients or have a very long waiting list and a very large fee for their services which I'm not sure is justified given the reviews they have got from patients.
Where do you live in Canada? If you live in the toronto area and are willing to pay for some blood work, there is a doctor whose reputation for helping people with thyroid issues is excellent. She will prescribe you erfa. Problem is might take few months to make an appointment. I, myself, am waiting to finally see her at the end of December. If you want to get a list of doctors in Canada, especially Ontario, you can check Facebook page for Canada thyroid group. They are very helpful.
Hi, thanks for responding. I'm in Toronto. I am a member of a local Facebook group (FTPO) that has a list of doctors which I am looking at, the problem is a lot of them aren't taking new patients or will only take in family members of existing patients. I'd be interested in any contacts you might be able to provide though.
Check for dr Andrew kiellerman. He has a clinic in Mississauga. He charges though $250 for 1 hour and when I went with his blood work requisition to the dynacarelab, they quoted me close to $500, which I can't afford
Hope it works for you.
Otherwise, check the support group : Canadian thyroid support group from Facebook.
I also had concerns about Synthroid ingredients. I decided to use Levoxyl (by King Pharmaceuticals; now owned by Pfizer) because they declare it is gluten free. From a letter King sent me, ingredients are: levothyroxine sodium, croscarmellose sodium, magnesium stearate, microcrystalline cellulose. Levoxyl is distributed in the US, so I can't imagine why it would not be available in Canada.
Thanks for your response. I've been to a couple of different pharmacies and both only offered Synthroid or eltroxin. I've seen since that others have had to ask pharmacies to buy in other brands for them specifically so that's another option I need to explore.
If your FT3 is high it may indicate that you are pooling or converting excess T4 into RT3 - reverse T3, which will bind to the sites on the cell that T3 binds with, thus preventing your cells from using the T3 so it is building up. As far as Sythroid is concerned I think it is evil! No one I know has ever done well on it and find that if they switch to a natural dessicated thyroid like Armour or WP (WP has the least fillers in it), they do much better because they have all the T4 T3 etc. in it and your body doesn't have to convert. So if you have conversion problems, which it doesn't look like you do, it, NDT, will work better. You might like to get the book; STTM - Stop The Thyroid Maddness and read it for a more thorough explanation. Note: there are two NDT meds that are marketed that sound the same; WP which stands for Weston Price and another one called Westhroid. WP only has 2 fillers in it, which you can google to read up on.
It' s very possible that now that your thyroid is within normal range your allergies are acting up. Histamine, the chemical responsible for allergies is Isuppressed in . hypothyridism.
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