Thyroid UK
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Breathing Trouble?

I’ve been on many different thyroid therapies over the years. Mostly have used T-3 only. But have also done well on WP thyroid. However I kept having AFIB attacks so they keep yanking me off thyroid because TSH is so low but it’s supposed to be low on t3 only therapy! And my FT4 and ft3 are both in the low normal range.

In October I had to have parathyroid surgery and they also removed my right thyroid lobe due to a very large nodule that had been growing for years. After that I did end up in the hospital with AFIB due to hyperthyroid and had to stop all thyroid meds. When we started over I used my endocrinologist instead of my naturopathic doctor who is who gives me the natural thyroid. Endocrinologist wanted me on synthroid once my levels went back to hypo with a TSH of 5.69. Ever since they stopped my thyroid and I went hypo I’ve been having a very hard time breathing like I’m not getting enough air. Also feel like a zombie. For a couple of occasions over the past few weeks I NEEDED to feel good so I took the WP for a few dys here and there and symptoms all improved, even breathing!But I’m due to take another thyroid set of labs next week and I don’t know if the little of WP I’ve taken is going to mess up the test or not? And I don’t know if I can stay off it long enough. Plus there’s the whole issue of not being able to get it from the manufacturer these days.

Would adding cytomel to synthroid do the same thing for me? My doctor said she’d be willing but she wanted to see what synthroid alone did first but now that I’ve messed that test up... I don’t know whether to let her know what I’ve had to do just to breathe or just do the labs and hope they still show hypo....?

So frustrating. Also I’d lost 80 lbs but since all this thyroid switching have regained 40 :(

Any help or suggestions would be greatly appreciated!

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Do you know your levels of B12 - FOLATE - FERRITIN - VIT D ? They all need to be optimal for you to feel well and for thyroid hormones to be effective ....

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B-12 has usually run just over the normal limit (1546, range of 200-1100). Haven’t had folate checked. Ferritin was last tested a few months ago and was 36.4 (10.0 - 291). Other labs done last month were:

TSH: 5.59 (.34 - 5.60) **She said I technically am not hypothyroid because of this!

Free T4: 0.94 (0.70 - 1.80)

Free T3: 2.7 (2.5 - 3.9)

Vitamin D (25-OH): 36.3 (30.0 - 100.0)

I guess my question is would adding cytomel to the synthroid be as good as switching back to WP and if so, what kind of dosing? They are all worried about me going back into AFIB! But I’m worried about not being able to breathe or function :(

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Your Ferritin is too low and needs to be at least 70. I would ask for a full Iron Profile to rule out anaemia. It could be the cause of your issues and the LOW T3.

Am assuming you are supplementing B12. VitD also too low and if you are in the US it needs to be at least 60. All these things need to be optimised before increasing your doses successfully.

Folate works with B12 in the body so needs to be tested. Low Iron/Folate/Ferritin/VitD can be one of the causes of AFib - along with low T3. Every cell in the body needs T3 including the heart and currently you do not have enough to go around 😊

Sorry do not feel able to advise on your doses ...

Your TSH needs to be 1 or under so you need an increase in your dose.

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Is the TSH all they ever test? It's very difficult to answer questions in the dark, like that, without knowing levels of FT4/3, how much of what you've been taking and for how long.

Your endo sounds like a bit of a sadist, most of them are, always wanting to make you sick again so that they can 'see' what this or that regime does. You could have told her. And, if you were well on NDT, she should have allowed you to stay on it. After all, it's your body, your life and your health. Not hers! She doesn't have to suffer the consequences of her experimenting. And, she is there to guide you, not dictate to you. Just tell her what you want, what makes you feel well, and - if necessary - go back to your naturopath. No reason you should suffer for her entertainment!

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She’s checking FT4 and ft3 too but really only seems to treat based on TSH... I posted labs above. My dosing was never totally optimized but for many years I was on 75 mcg of cytomel only. Then was trying 95 mg of WP and then had the surgery and AFIB so they took me off everything and now we’re starting over. She currently has me ononly 50 mcg of Synthroid...

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It sounds as if you need to get rid of the endo fast! Treating by the TSH is the best way to keep the patient sick. 50 mcg is a starter dose, so no wonder you are under-medicated!

She obviously knows nothing about thyroid to say that you are 'technically not hypothyroid' because of the level of your TSH. That is so totally wrong, I don't know where to begin! Even ignoring the fact that a euthyroid TSH is around one, it is your low FT3 that makes you hypothyroid, because it's low T3 that causes symptoms. She is a public menace, and your really shouldn't waste your time and money on her! Either find another endo, or go back to your naturopath before she makes you really ill!

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