Thyroid advice, please!

[chocoholic17]

Hello All,

I'm wondering if anyone could offer any advice, please, about how my recent thyroid blood test results appear. I had raised TPO antibodies of 368, a few years back, so was treated for Hashimoto's. I was put on Levothyroxine for a while but symptoms persisted, including increasing pain in both legs. (The pain was diagnosed as peripheral neuropathy due to my, Type 1 Diabetes, Hashi's, B12 deficiency or Lyme Disease...take your pick. My neurologist says all can cause it and it's impossible to tell which one.

I saw a private endocrinologist, who wanted me on NatureThroid, after genetic tests showed I have methylation and detoxification problems.

I saw a good nutritionist for several years, who worked really hard to help me change my diet and support my immune system through good quality natural supplements. I cut gluten and dairy, which led to my stomach being less bloated and digestion improving.

Yes, I know all this is complicated. My own brain is in a whirl too, trying to juggle everything.

The problem I now have is that my NatureThroid has been denied me by my G.P. as they say it's no longer licensed by the CCG. I wrote lengthy letters to the CCG, citing back up from two endicrinologists and my neurologist to remain in Nature Throid but got nowhere. I know I can buy Nature Throid but I'm not even sure now if that was right for me. I'd only been put back on Levothyroxine for about two months, before getting blood results which appear only slightly out of range.

The big thing is that my TPO antibodies have plummeted from 368 down to 31 . A huge positive decrease. I'm assuming this must be down to everything my nutritionist did but could that huge drop be down to the Nature Throid or Levo on its own?

I don't know who to approach with this...the private endocrinologist, who's advice to be on Nature Throid is worthless (unless I pay privately for it), my nutritionist who I trust but is not a doctor and cannot alter medicinal drugs, the G.P. who has dismissed my Lyme Disease test results, genetic tests and any need for T3 for thyroid issues or my NHS endocrinologist, who also dismisses any need for T3.

Apart from diet and supplements, what else could cause that huge drop in TPO antibodies?

I'm putting weight on, the pain in my legs is awful and is starting in my hands too, my neck is painful, I have this huge tiredness, very dry eyes and generally just feel out of sorts.

My latest thyroid results are:

TSH 0.05 (0.27 -4.20)

Free T4 28 (12.0 -22)

T3 4.3 (3.1 - 6.8)

I obviously have a whole raft of other blood test results but not sure if anyone is interested in those in relevance to thyroid issues.

Any thought or advice very welcome, please.

[Missy789]

Personally I found that when my T4 was at the highest point in the range I had more body pain and was much more fatigued. Your T4 looks too high. Have you ever had your B12, Iron and Ferritin, Vitamin D or any other nutrients? Having these in an optimal spot does make a huge difference in how you feel. I also had burning dry eyes.

[Missy789 in reply to Missy789]

Have you ever heard of Isabella Wendtz? Her books and website are very helpful. thyroidpharmacist.com/artic... And it definitely could and probably was the diet changes that you made along with being on thyroid hormones that decreased you antibodies.

[chocoholic17 in reply to Missy789]

Nope, Isabella Wendtz is not a name I'm familiar with, so I will look her up. Thank you for your suggestion.

[chocoholic17 in reply to Missy789]

Hi Missy789, Yes, the nutritionist made sure I had the minerals and vitamins I needed. I currently only take a methyl multi vitamin, as I have methylation problems. I also have monthly b12 injections too.

Do you think because the antibodies are into normal levels again, it's just possible I may not even need any medication now? I always thought that my autoimmune conditions were 'incurable' but does that rule out just not needing meds? Maybe I'm just being over-hopeful!!

[greygoose]

Your antibodies dropping mean nothing. They fluctuate all the time. But, whatever their level, you will still have Hashi's, and you will still need thyroid hormone replacement of some kind. Looking at your results, you don't convert well, and you do need some T3. The NHS won't prescribe it because it's too expensive, but that doesn't mean you don't need it. Do you have any blood test results from when you were on NDT?

[chocoholic17 in reply to greygoose]

Hi Grey Goose,

The only thyroid tests I can lay my hands on from before were the following:

Shortly after starting Nature Throid. 11/11/2016. Free T3 5.1 (3.1 -6.8)

TSH 3.2 (0.27 -4.20) Free T4 12.2 (12.0 - 22.0)

29/05/2018. TSH 0.76 (0.27 - 4.20). Free T4 13.1 (12.0 - 22.0)

( I don't have a T3 result for that date, as the doctors wouldn't always let me have one)

Thanks for your help.

[greygoose in reply to chocoholic17]

You were obviously under-medicated on the 11/11/16 tests. How much were you taking? Presumably you'd increased the dose by 2*/5/18. Doctors are so ignorant. If you're taking T3 or NDT, obviously you need your FT3 tested every time. There's no point in testing if you don't.

So, why don't you think that NDT was maybe not for you? How did you feel? And, how much did you end up taking?

[chocoholic17 in reply to greygoose]

I was on 1 grain ( 65mcg) for a long time but I still didn't feel 100%, so the endocrinologist increased it to 1 and 1/2 grains but almost immediately, I had bad palpitations and felt seriously unwell, so it was immediately reduced again. I still felt better on 1 grain than I do right now but never felt totally well and the leg pain has always been my biggest problem. This afternoon it's been so bad, I've been close to tears but it's reminded me of just how bad it was before I was on Nature Throid and the two months of insomnia, that accompanied that pain. I think I'm just worried that if I go back to my G.P. (As he requested once bloods were back) that he will just up the Levo and I'm not sure if that would be the right or the wrong thing to do, if I can't convince him to reinstate the NatureThroid. With neither the G.P. nor the NHS endocrinologist not even believing T3 is needed by anyone, where does that leave me?

When Nature Throid was denied me, I was told IF I wanted to stay on it, I could probably buy it online but it was said with a sneer, as if I'm deluded. I want to be monitored and properly advised but with my G.P. not listening to requests from a private endo I feel frustrated.

[greygoose in reply to chocoholic17]

He increased by too much. Increases should only be 1/4 grain.

I doubt the doctor will want to increase your levo, because your FT4 is already well over-range. But, you said you knew you could buy your own NDT. Why don't you do that, if they won't prescribe it? As for being monitored and properly advised, surely you've realised by now that they're just not capable of doing that. You'd probably be better off going it alone. Like so many of us do, and feel better for it.

[chocoholic17 in reply to greygoose]

I probably will do that, greygoose I just wanted to garner others thoughts on things (from others in the same position) before I go back to the G.P. I'm so worn down with fighting for proper treatment (for all my conditions) that I'm starting to doubt my own mind.

[greygoose in reply to chocoholic17]

It's not your mind you need to doubt, but the competence of your doctors. But, I know it's good to get confirmation of that. I can get very lonely.

[chocoholic17 in reply to greygoose]

Thank you, for your understanding and advice, greygoose. I wish you well.

[greygoose in reply to chocoholic17]

Thank you.