Hello. It’s been awhile since I’ve posted. I am having some issues with medication again so will likely post more in the future. But I wanted to start by asking for some opinions. I was diagnosed with hypothyroidism in 2011 at the age of 26 by a naturopath in the US due to low T3 levels. My T4 was in range and she didn’t test my TSH. She tested for antibodies for Hashimoto’s and it came up negative. I started treatment on nature thyroid and symptoms improved. I’ve had to jump through many hoops to get medication here and when I sit with doctor’s they question my diagnosis. Is it possible to have under active thyroid without Hashimoto’s? And what if just the T3 is below range? I’m worried I was misdiagnosed and medicated for an issue I might never have had? Any insight would be greatly appreciated.
Hypothyroid without Hashimoto’s?: Hello. It’s... - Thyroid UK
Hypothyroid without Hashimoto’s?
Do you feel well? Not all hypo's have hashis. Can you post your latest blood results, and ranges, please, and any supplements - so people can give more detailed advice.
I don’t feel well as I had to stop my T3 recently due to unlucky postcode lottery. My endocrine (In West Berkshire) is happy to prescribe T3, but the CCG there forbids them doing so on the NHS. She can advise the GP to prescribe, but we recently moved to an area under East Berkshire CCG who have Liothyronine as a red label drug so they are unable to prescribe it. So I have two doctors who are willing to prescribe, but the CCG’s prevent them (risk of losing licenses). I am feeling so deflated. I have a 17 month old and we want to try for baby number 2 and I’m terrified this will cause me fertility issues. Let alone trying to manage symptoms.
I am currently on 100mcg of Levothyroxine. Most recent labs from 13th of Feb:
TSH: 2.32 (0.27-4.2)
T4: 19 (range 12-22)
T3: 3.1 (range 3.2-6.8)
I had them done in early December and they were following. Unsure why my TSH shot up as I didn’t change my medication at all. Same ranges as above as all tests done on the NHS
TSH: 1.25
T4: 20.5
T3: 3.4
I’ve been bad with my supplements and have just been taking a prenatal vitamin (Naturelo) as I am still breastfeeding my little boy once a day. It is a pretty comprehensive multi but but only 800IU of D3. Has 13mg Zinc, 70mcg Selenium, 210 mg Magnesium, and 290mcg Iodine from organic Kelp included in the multi.
If I were you, I'd stop that prenatal vitamin immediately! The last thing you need is iodine. 100 mcg levo is already giving you 65 mcg iodine, plus what you get in your food. It's so easy to over-dose, and iodine in excess is anti-thyroid. As well as causing a host of other possible problems, including thyroid cancer.
You would be far better off getting your vit d, vit B12, folate and ferritin tested, and supplement according to need, rather than indiscriminately with a multi. 
Isn’t iodine essential in converting T4 to T3? I don’t eat any dairy and only have salmon 2x a week. No other seafoods. Unsure if I’m getting any in my diet.
No. Iodine is one of the ingredients of thyroid hormone. But, if your thyroid can't make thyroid hormone, it doesn't need the ingredients, does it. Perhaps you're confusing it with selenium? Selenium is essential for conversion. But, even that you don't want too much of.
Ok. I used to take D, selenium and zinc. How much selenium is recommended? 100mg?
Iodine is not recommended for thyroid patients unless you have tested deficient. iodine can cause problems with the thyroid. Iodine sent my thyroid of kilter.
I'm not surprised you don't feel well - you can see that you're a "poor converter" as your FT3 is below range while your FT4 is nice and high. I'd email Dionne at Thyroid UK to get a list of lio-friendly endo's to get your lio restored (you may need to travel, given your CCG's attitude).
And if you have the fight in you, I'd write to your MP to complain about a life-saving prescription being withdrawn ... and there's a Guardian journalist (who attended the Thyroid Trust conference in January I posted about) - sorry I don't remember her name - who is interested in hearing from people who have been kicked off lio.
Good luck x
Thank you. I can’t afford a private prescription in the U.K. though. My endo is pro T3. And my Gp is willing to follow my Endos lead. But the CCG prevents either of them from prescribing it on the nhs. And private scripts are upwards of £400 month 😞
Which is why so many purchase from Germany - using an NHS or private prescription.
Have a look here:
thyroiduk.org.uk/tuk/treatm...
Post again if you need help.
Thank you. So my pro-T3 NHS endo should be able to write me a private script that I can fulfill with the chemist in that link? She has told me she can’t directly prescribe it but can advise my GP to do so. I haven’t asked about a private script. Am due to speak to her in 2wks. I will have better luck with my endo than my GP who doesn’t understand T3, but does care about patients and would follow consultant advice if she were allowed. I don’t think she’d write me a script though.
Technically, either should be able to write a private prescription but there could be all sorts of issues which they feel inhibits them doing so. I am afraid you will just have to ask them and see how it goes.
If they DO write one, make sure it says: Liothyronine 20 mcg - 100 tablets. (Or multiples.) Must NOT say "Liothyronine sodium" nor specify numbers like 28 which are UK-standard.
Sorry if I wasn't clear. I was suggesting that you see a different endo, not in your CCG area, who WILL prescribe lio on the NHS. You can see any consultant in the UK - it doesn't have to be the closest geographically - although you will obviously have to travel to see them, and to collect your medicine, so it can't be wildly inconvenient.
Ok that makes sense. Sorry For so many questions, but would I need a referral from my GP to see that endo out of my CCG area?
Yes - but I'm not sure they can refuse. Good luck x
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