I saw my endo today and he agreed that while my T4 was good at 18.8pmol/L (range 10-20) my T3 was still very low 4pmol/L (range 3.5-6.5) and as I haven't experienced any improvement that it's clear upping levo further would not help and that I need to add T3 as I appear to be a poor converter. He has given me a private prescription of T3 and I wondered where the best ie the quickest and cheapest place to obtain T3 is and also what price it is likely to be?
I also have a question about central/hashimotos. I was diagnosed hypothyroid because I had very low T4 and T3 levels but a normal TSH and both antibodies tests showed no antibodies and so he said he believed I had central hypothyroidism but that we would see how I responded to mediaction before diagnosis. Today he confirmed I am hypothyroid and I asked him about whether the cause of my hypothyroidism would need investigating as I know you normally have a pituitary MRI with central hypo but he said no and that he's treating it as hashimtotos - he said that only 80% of hashimotos patients have antibodies and I did also have a grandma on my dads side that had hypothyroidism but I thought central hypothyroidism was seperrate to hashimotos? It just seems strange to me that I would have hashimotos but no anitbodies AND a normal TSH? Can anyone shed any further light on this?
Huge thanks to everyone!
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liaratsoni
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Thank you so much for that advice. He explained that it has a short life and that normally you need to take twice a day so I was a little surprised when he said to start by taking the 10mcg in one go! I think I will take 5mcg twice a day. Can I ask does T3 need to be taken away from supplements/calcium etc like levothyroxine?
My prescription reads 20mcg (1/2) tablet once a day x 6 weeks
Thank you I will send my endo an email. I haven't had my levels tested for a while and am planning to get them done privately again as they have always been low. I have been gluten free for over a year since before diagnosis.
The fact you are already gluten free may explain why TPO antibodies are not raised ....though approx 20% of Hashimoto's patients never have raised antibodies
I think your endo is either a bit confused, or a lazy, lying so-and-so. It's always difficult to know which.
Central hypo is when the problem lies with the pituitary (Secondary hypo - the pituitary doesn't produce enough TSH to stimulate the thyroid to make thyroid hormone) or the hypothalamus (Tertiary hypo - the hypothalamus doesn't produce enough TRH to stimulate the pituitary to make TSH), rather than the thyroid itself (Primary hypo - the thyroid is incapable of making enough thyroid hormone for whatever reason - and there can be many reasons).
So, with Central hypo you have low TSH and low thyroid hormones.
With Primary hypo you have high TSH and low thyroid hormones.
Hashi's - aka Autoimmune Thyroiditis - is when the immune system attacks the thyroid and slowly destroys it. Usually diagnosed by high antibody levels. It's true that not all Hashi's people have high antibodies, but your endo has got his numbers back to front. It's about 20% that never have high antibodies, 80% do.
Now, if you have Hashi's, all that can be done is to prescribe thyroid hormone replacement of some kind, increasing until the patient feels well - or, as most endos thing, until the TSH is back somewhere in range! They think that's easy. lol But, with Central hypo, there's a lot more testing to be done because the pituitary doesn't just make TSH, it makes a lot of other hormones, too. And, they could also be low, causing other problems. That means more work and more careful dosing of hormone. I'm not casting any aspersions, but if an endo denies the need to do further testing, we can all draw our own conclusions…
I was a bit confused! Especially as the last time I saw him he said I had central because my TSH was low-normal! Don't know if he forgot! Last time I saw him back in october he did the full pituitary testing and said everything was ok - I usually prefer to check results myself after this whole ordeal getting diagnosed and how many times I was told I was 'normal' but he didn't provide any ranges. This whole journey has been crazy!
No, they don't tend to supply ranges, do they. I wonder if that's deliberate on their part. If you don't have the range, you can't interpret the result.
Anyway, just because the other pituitary hormones were 'normal', doesn't mean you don't have Central hypo, because if the problem came from the hypothalamus, it would just be the TSH that was affected. But, they rarely do any tests for the hypothalamus. Strange mind-set they have.
Hi liaratsoni , I was interested to see your post as think I'm in a similar situation to you. First thyroid tests showed low levels of TSH, Free T4 and Free T3 and the good folks on here suggested it might be central hypothyroidism,. Sadly, my GP had no idea about it but prescribed Levothyroxine and referred me to an endocrinologist.
She thought I could be in the small percentage of persons where it's normal to have low thyroid levels, or maybe I was having some sort of mid-life crisis?!
I then found a private endocrinologist who initially thought it could be central hypothyroidism but wanted to see how I responded to treatment, starting with Erfa and now T3. However, he's kept me at low dosage levels, so it's not surprising that my Free T4, Total T4 and Free T3 are still low. He's now written a letter to my GP raising the question of central hypothyroidism. But when I asked about further investigations, he said it wasn't needed as you treat it the same way as hypothyroidism. I've also had some tests done to check for pituitary issues, mostly low (but with crazy high oestragen) but as they're in the range I've been told that all is normal. I'd like to at least have a scan done, but neither the endocrinologist or the GP think it's needed, and can't have it done without a referral.
I had a private prescription and got it from one of the pharmacies mentioned on the Thyroid UK list. I'll PM you with the info. I've asked my GP if they can provide it, they initially said No but asked Pharmacy Manager to consider it, am still waiting to hear back a month later, so guess the answer is still No!
On a more positive note, I've been feeling a lot better since taking T3, with much improved energy levels I'm starting to feel a bit more like myself! It would be great if we could get it through the NHS, but I'm just happy that I'm feeling a difference now, I hope you do too!
Thank you so much! We do sound really similar! Mine were also all quite low and I am the same - a little bit concerned that they aren't going to do a scan but I already had to pay to see the endocrinologist privately just to get diagnosed and there's no way i could afford a private scan! I too was hoping that I might be able to get it on the NHS in the future but after previous experiences with my doctors I'm not hopeful! I can't believe that they STILL won't give it to us on the NHS even if an endocrinologist says you need it! I hope you get a positive response eventually! I am really glad to hear your doing so well! I can't wait to get started on the T3 and hopefully finally see some improvement too!
...I'd have to make a wave with that ? Awful. I'm afraid I get a bit demanding these days after years of no help at all haha
Yes I saw endo today, for first time and he remarked I had no thyroid antibodies but was ok to agree it is hashi when I told him two sets of tests had been over range, that I had done a while ago, he agreed that 80percent of us are hashi
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