I posted yesterday asking about a possible link between POTS and hypothyroidism as I was seeing the Endocrinologist. He hadn't heard of POTS before. But when he looked at my recent results, see below (currently on 45mg Erfa & 25mg Levo) he said that it seems more likely now that I have central hypothyroidism and/or pituitary problem as my thyroid levels haven't really improved after 8 months of medication (started on 50mg Levo and started taking Erfa in Sept this year).
He thinks my flushing may be due to Lupus as it's like a butterfly rash across my cheeks and nose. But although I had a positive ANA, all other antibodies were negative for Lupus, so I thought it would be pretty unlikely but he's suggesting that the Rheumatologist looks into it again.
I asked if I should have a scan of pituitary/thyroid but he said it was unlikely to show anything. I've also asked the GP about a scan but they can't refer you unless you have an obvious lump?
He said that the treatment would be the same for central hypothyroidism but that I should stop taking Erfa as hasn't helped me. He suggested trying T3 (10mg a day) along with 25mg Levo.
I'm willing to try anything to see if it helps, but wondered if there's something else I should be doing/taking to improve my situation? Many thanks for your help.
Latest blood tests are below.
TSH - 0.47 (0.27 - 4.20)
Free T3 - 4.23 (3.1 - 6.8) Highest level since starting testing in April 19
Free T4 - 11.0 (12.0 - 22.0) Lowest level, but know that NDT has an impact
Total T4 - 56.9 (66 - 181) Lowest level, but know that NDT has an impact
TgAb antibodies - 271 (<115) Highest level
TPO antibodies - 21 (<34) Highest level
B12 Active - 130 (>37.5)
Serum Folate - 16 (8.83 - 60.8)
Vitamin D - 70 (>50)
Ferritin - 194 (13 - 150) Highest level
DHEA Sulphate - 1.7 (1.65 - 9.15) Same level
Cortisol - 221 (166 - 507) Same level
FSH - 4.44 (no range as no periods from being on the coil)
LH - 4.09 (no range as no periods from being on the coil)
Oestradiol - 2,135 (no range as no periods from being on the coil) Very high level.
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ShonaGreen
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For someone with primary hypothyroidism - the commonest type of hypothyroidism - doctors don't look at the level of thyroid hormone (Free T4 and Free T3) people have they use TSH as their gold standard indicator of thyroid status. It's a sadistic way of treating people with hypothyroidism, and completely inadequate, but it is what they do.
In central hypothyroidism the pituitary can't produce enough TSH to stimulate the thyroid to produce sufficient thyroid hormone to keep you well. In that situation the TSH has to be ignored and the levels of Free T4 and Free T3 have to be used to titrate dose of Levothyroxine or other thyroid hormone replacement (such as Erfa).
The dangers of not getting a central hypothyroidism diagnosis when it is justified is that treatment with thyroid hormone replacement of any kind could push your already inadequate TSH very, very low. Then doctors start panicking that you are actually hyperthyroid and take you off your Levo or whatever it is you are taking.
So, coming back to your original question - what is the treatment for central hypothyroidism...
1) It is the same as the standard treatment for any other kind of hypothyroidism - replacement of the thyroid hormones that your thyroid should be producing but isn't.
2) Dosage of the replacement thyroid hormones must be determined by levels of Free T4 and Free T3, not TSH.
But when he looked at my recent results, see below (currently on 45mg Erfa & 25mg Levo) he said that it seems more likely now that I have central hypothyroidism and/or pituitary problem as my thyroid levels haven't really improved after 8 months of medication (started on 50mg Levo and started taking Erfa in Sept this year).
I've looked at a couple of your earlier posts, and the dosages of thyroid hormones you are being prescribed are absolutely tiny. It's a bit like taking a quarter of one aspirin for a headache. Why are your doctors being so damn cautious?
According to STTM, Erfa contains :
30 mg tablet embossed �ECI 30�, has 18 mcg. of T4; 4 mcg. of T3 (as compared to 19/4.5 in US brands) Equivalent to the US one-half grain.
If you are taking 45mg of Erfa then it contains 27mcg T4 and 6mcg T3. On top of that you are taking 25mcg Levo. So your total dose of thyroid hormone is only :
52mcg T4 + 6mcg T3
If we take T3 as being 3 times as potent as T4 then your 6mcg T3 is equivalent to 18mcg T4.
If your 6mcg T3 is 4 times as potent as T4 then your 6mcg T3 is equivalent to 24mcg T4. So your dose is equivalent to roughly 70mcg - 75mcg Levo.
This is utterly inadequate. You need to raise your dose of one or the other of your thyroid meds - either the Erfa or the Levo. A common dose of Levo for people with thyroid disease is usually around 100mcg - 200mcg Levo.
Thanks for taking the time to respond humanbean , what you say makes total sense. I guess I'd like to have a firm diagnosis of central hypothyroidism (or not!) but it doesn't seem possible. The first Endo I saw didn't think I had a thyroid problem, that I was part of the 5% population that have low thyroid levels and suggested I might be having a mid-life crisis?! I found my current Endo on the Thyroid UK list (closest one but still far away for me). He seems to be popular but I'm wondering if this is because he prescribes NDT and T3?
I guess the main issue now is to make sure that I start taking the right dose. He's prescribed me 20mg T3 (10mg twice a day) and to remain on 25mg Levo. I'm thinking I should increase to 50mg Levo, but should I do this at the same time as starting T3? Would it be better to start taking just the T3 (and 25mg Levo) to see how it makes me feel, and then increase to 50mg Levo in a week or so?
I really appreciate your help. I feel like I've got a lot of balls up in the air again just as I had started to get my head around things! But I know it's a trial and error situation so hopefully will get on the right track soon!
Seems to me obvious that thyroid hormone replacement of any kind is not going to help unless you take enough of it. And, you are obviously not taking enough of it. So, if that is obvious to my untrained eye, how the hell can it not be obvious to someone who is supposed to be a specialist in his field? I just do not understand. Ask him why he just doesn't try increasing your dose for goodness sakes?
But when he looked at my recent results, see below (currently on 45mg Erfa & 25mg Levo) he said that it seems more likely now that I have central hypothyroidism and/or pituitary problem as my thyroid levels haven't really improved after 8 months of medication (started on 50mg Levo and started taking Erfa in Sept this year).
I cannot believe that such gobbledygook could come out of any mouth, let alone the mouth of an endo! Does he even what central hypo is? Your thyroid hormone levels haven't improved because you haven't been taking enough thyroid hormone. What's that got to do with the pituitary? Your problem lies more with the lunkhead that is writing your prescriptions rather than your pituitary. I just cannot follow his reasoning at all - probably he can't, either! I would say this leaves me speechless, but that would obviously be untrue! lol
Hi greygoose , I agree that it doesn't make sense to keep me on such a low dose. I'm not sure why that's the case, but I only get to see him for about 5 minutes before the next person is called. I tried to push him yesterday to explain why he thought it was central hypothyroidism now, even though when I first saw him my thyroid levels were pretty low. He was quite adamant that it doesn't matter whether it's primary or central hypothyroidism, just need to get the medication right.
I guess I've been feeling grateful that he's trying to help me and have just trusted his advise. I'm not sure if seeing another endocrinologist would do any good now? But I'd really appreciate people's opinions as I'm still so new to this and have a lot to learn!
In my response to humanbean, I mentioned that I think the next step is to increase up to 50mg Levo, but not sure if I should do this at same time as starting T3?
He was quite adamant that it doesn't matter whether it's primary or central hypothyroidism, just need to get the medication right.
And I agree with him. So, why isn't he doing that?
I'm not sure if seeing another endocrinologist would do any good now?
Depends on the endocrinologist. You might find one with a bit more common sense. On the other hand, you might find one that dismisses you out of hand.
I think the next step is to increase up to 50mg Levo, but not sure if I should do this at same time as starting T3?
This is insane! Why on earth take NDT AND levo AND T3? Why not just increase the NDT?
But, no, you shouldn't increase the levo at the same time as starting T3. What's more, you shouldn't start T3 at such a high dose. Start with 5 mcg, and increase by 5 mcg every two weeks. Suddenly adding in 20 mcg in one go would be a tremendous shock to the system. This guy may prescribe NDT and T3, but he really, really doesn't know how to dose it.
Thanks greygoose , from what I've read about T3 today I had a feeling that starting on 20mg T3 might be too much, I wasn't going to post another message about this but I'm glad I did now!
He's stopped the prescription for NDT Erfa as it didn't seem to help me, have been feeling pretty bad since I started taking it. So he replaced Erfa with the T3 , and advised to continue taking 25mg Levo. So fingers crossed that I'll start to see some difference, either from taking the T3, increasing my overall medication or a combo of both!
Once you have started meds , you can't really tell if you have primary or central hypo. The treatment is exactly the same as for both, except that you always ignore TSH with central hypo.
Increasing Levothyroxine dose should slowly raise FT3 too.....but many with Hashimoto's also need the addition of small dose of T3 alongside. Typically 2 or 3 5mcg doses per day alongside 100mcg Levothyroxine
Cortisol often improves once FT3 increases.
Vitamin D is still too low. How much vitamin D are you supplementing? Aiming for at least around 80nmol and around 100nmol may be better
Folate low too. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Hi SlowDragon , thanks for your reply, I really appreciate your advise.
I think the endocrinologist was aiming for me just to take NDT, but as it was such a small dose to start with, I insisted on continuing with Levo. I can see now that 25mg has been too small a dose so will increase to 50mg. Also have my prescription of T3 so will start with 5mg daily.
A while ago you suggested taking Better You sprays, and I've been taking DLux 1000 Vit D and Vit B. Also take the Igennus Super B tablets, I think this contains folate? Is there anything else you'd suggest taking?
I also take Amitriptyline in the evening for migraines (don't think this interferes with thyroid meds). Also Nifedipine in the morning for Raynauds (which I know can interfere as it's a calcium channel blocker so I take this about 4 hours after taking thyroid meds.
I hadn't realised about getting the butterfly rash with Hashimoto's, for years I've thought this was rosacea but it never responded to treatment for that. After I had my twins it got really bad. But now I'm thinking about it, since I started taking Levo it hasn't been so bad, but having a bad flare of it the last few weeks.
I went gluten free for 3 months over the summer but to be honest I didn't see any improvement so stopped doing it. I'd consider trying it again if think it would make a difference, maybe after Christmas!
Migraine is likely due to being hypothyroid and Raynauds too
Levothyroxine must be taken on its own, never with any other medication .....when ever you take it
As you have Hashimoto's you likely need 3000iu vitamin D daily.....at least through winter....possibly slightly less in summer. Test twice year to check levels
Better you make a spray that includes vitamin K2 mk7
Do you supplement magnesium. This is co-factor to take alongside vitamin D . You will see magnesium supplements recommended often on here
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