Please help- running out of options (new here)

[lg09]

Hey there, I was just hoping someone would be able to help me. I've been sick for over a year now, and have seen so many doctors, mainly gastroenterologists as I was diagnosed with SIBO. But nothing seems to have helped in that area (e.g. antibiotics) I just came back from a rheumatology appointment and he is saying my problems are all due to internal inflammation (which he says isn't showing up on the blood tests at all but is probably still the case) and thus I need to go on HIV medication, which is just super scary. I can't shake the feeling that my symptoms feel really hormonal: weight gain, bowel disturbance (diarrhea), extreme fatigue, depression, fibromyalgia, heat intolerance, puffy face, mottled skin. All these things I've never had problems with before, I've been tested for EVERYTHING, and all my bloods keep coming back normal. I recently tried introducing an iodine supplement and felt so good for like 10 days and got ALOT worse. These are my thyroid results:

TSH 2.87 (optimal 1-2.5, normal 2.5-4.3)

FT3 5.7 (normal 5-6.8)

FT4 11.9 (normal 12-17)

T4 81.1 (normal 66-181)

TgAB 12.7

TPOAb 10.3

Also my ferritin and folate were both low. And I have a history of the past year of being anaemic.

Can anyone shed any light on any of this? Is it completely in my head that its a thyroid problem (obviously only my FT4 is low)? Why would I respond to iodine if it wasn't?

Thankyou if you can help.

[SlowDragon Administrator]

Clearly your FT4 is low

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

What are ferritin and folate results?

What about vitamin D and B12 ?

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin D and B12 levels

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

As you have gut issues have you tried strictly gluten free diet ?

Iodine is a controversial supplement, especially if you do have Hashimoto's

thyroidpharmacist.com/artic...

drknews.com/iodine-and-hash...

[lg09 in reply to SlowDragon]

Hey thanks for replying.

B12 134 (normal 37-188)

Ferritin 40.5 (normal 13-44, optimal 44-150)

Folate 14 (normal 8.8-40, optimal 40-60.8)

Vit D 49 (sufficient 50-75, optimal 75-100)

All my bloods were done fasted and in the morning.

I'm pretty much everything free, gluten/dairy/low FODMAP

[SlowDragon Administrator in reply to lg09]

Push to get ultrasound scan of your thyroid

SIBO and Hashimoto's often linked

thyroidpharmacist.com/artic...

So all your vitamin levels are slightly low

Vitamin D, GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, you will probably need on going maintenance dose to keep it there.

test twice yearly

via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs.

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Magnesium

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

folate on the low side.

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

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

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Ferritin also slightly low. See if you can get full iron panel testing for Anaemia. Iron isn't always low when ferritin is low.

Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

[greygoose]

Oh these damned doctors and their drugs! Silly man.

Why would I respond to iodine if it wasn't?

Because that's the way iodine works. To begin with, it stimulates the thyroid, you have more thyroid hormone, you feel better. But, long-term, it acts as an anti-thyroid drug - it used to be used on people with hyperthyroidism, in the days before carbimazole, etc. - so you end up with less hormone, and you feel worse. Excess iodine can also be quite dangerous, triggering Hashi's and even cancer. So, really not a good thing to self-treat with. I know a lot of people think the solution to all thyroid problems is to throw iodine at it, but that's just not true.

So, when were those thyroid tests done in relation to you taking iodine? Long time after? While you were taking it? Are these the only thyroid results you have? Your TSH is too high for comfort, says your thyroid is struggling, so it's started making more T3 and less T4 - although that could have a connection with the iodine, but it depends on the time-line. Did you get tested for iodine before you started supplementing it?

What about the ranges for those antibody tests?

[lg09 in reply to greygoose]

I did the tests before taking any iodine. After taking the iodine my TSH went down to 1.84 (after 2 weeks) but not sure whether that's because different labs did it. And no I've never had a test for iodine.

Tpoab (normal 0-34)

Tgab (0-155)

[greygoose in reply to lg09]

Doesn't matter which lab did the testing, a TSH is always a TSH, and it's 'normal' around 1. It shouldn't be over 2. But, the iodine would have caused your TSH to drop slightly because it stimulated the thyroid, as I explained.

Both those antibody results are negative, for what it's worth. But, you can have Hashi's without ever having raised antibodies, so it doesn't mean a lot.

[Heloise]

Hi ig, good comments from SlowDragon and greygoose. So you aren't taking any thyroid hormone? So actually if that's true you are not that bad. There are plenty of things that can affect you. Low thyroid means you may not be eliminating well and building up toxins hence you end of with SIBO. Did he try rifaximin? It stays in the gut without setting up the terrible gut killing effects of broad spectrum. If not, it did not help your gut. You need to build up your microbiome. Berberine and herbs like olive leaf, oregano oil, etc. can help but getting your metabolism up will do the most.

If you are middle aged you could be estrogen dominant and estrogen interferes with thyroid hormone. We get excess estrogen in our food but low progesterone can be the problem.

Sometimes estrogen dominance also means insulin resistant.

[lg09 in reply to Heloise]

Hey thanks for replying. So yes I've actually had a course of Rifaximin and it helped a bit while on it with gut issues, but immediatley after I'd finished was back to normal. I'm 23 and had all my hormones checked pretty much and all normal. What do you mean by getting up the metabolism? Thankyou

[Heloise in reply to lg09]

Every cell in your body needs thyroid hormone. If your don't produce enough something is not going to work right. You burn calories more slowly than normal and that starts a cascade. One of those is you don't digest or eliminate well, so food is fermenting instead of digesting and those microbes accumulate which is why you have SIBO. I watched a summit hosted by Shivan Serna and Alison Siebecker.

What are you taking to stimulate your thyroid? Foreskolin or some pharmaceutical?

I've recommended watching John Bergman's videos on you tube. He seems to know about everything and how it works.

[Lora7again]

With a TSH that high it looks like your thyroid is starting to fail. A healthy person has a TSH of around 1 or even lower mine is 0.70 and I feel full of energy so I am probably slightly hyper but my GP says I am in range. Unfortunately it can take years for your thyroid to completely fail so your TSH will continue to rise and you will begin to feel worse and worse. Here in the UK they let our TSH to get to 10 before they treat us so they like us to really suffer. When my TSH was 9 I felt so ill I could not get out bed and my hair was falling out, I had night sweats, my nails were lifting of their beds ... I felt like the walking dead. I decided to take my own health into my own hands and with advice from people on sites like this and ones in the US I obtained some Thyroid S and decided to self treat which sounds drastic but what could I do my own Doctor refused to help because of NHS guidelines. I have just looked closely at your ranges and see they are different to the UK ... I still think your TSH is still too high my range here is in the UK is 0.35 - 4.94 mu/L

[Lora7again in reply to Lora7again]

What? I just read they gave you some kind of supplement which stimulates your thyroid! Sorry that is me just reading blood results and not what caused them. Them you need to let your thyroid recover because it might stabilize. When I was overdosed on PTU by my stupid Endocrinologist I went to see Dr Gordon Skinner and he advised my GP to give me a prescription for Levothyroxine which helped my thyroid recover ... I have Graves'Disease btw

[Lora7again]

Also what is your CRP? That shows what inflammation you have in your body. Mine is over 9 and too high because my thyroid is under attack from thyroid antibodies.

[SlowDragon Administrator]

Getting vitamins optimal and ultrasound scan of thyroid are your next steps