Lots of hypothyroid symptoms and don't know wha... - Thyroid UK

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Lots of hypothyroid symptoms and don't know what to do

satu55555 profile image
4 Replies

Hi,

I have lots of fatigue, weakness, problems with sleep (waking up in the middle of the night and being unable to get back to sleep), bad brain fog, dizziness (but not 100% of the time anymore, but when I get any kind of stress, even the smallest worried though), no stress tolerance, cold and heat intolerance, hot flashed when a bad day, a little bit of balance issues when walking on a bad day, lots of issues with shoulder and neck muscles (fibromyalgia), long recovery after any activity, my metabolism is really slow (energy production), weight loss impossible and weight gain super easy, numbness and tingling on skin if stressed, dry ears and some other symptoms.

My labs in February were:

TSH 1.75 mlU/l (Range 0.40-4.00)

Free T4 15.39 pmol/l (range 10-21)

Free T3 4.15 (range 3.5-6.5).

TyglAb <15 (range <60)

TPOAb 69 kU/l (range <60)

Reverse T3 nmol/L (range 0.14-0.54)

So I have had a bit of hashimotos, which has been treated with nutritional methods of dairy-free and gluten-free diet so this should be down by now. I will check in a couple of months.

Here's the issue. With my labs tests not being the worst but still having lots of symptoms, my doctor wanted to try temporary medication. My labs have improved noticeably during the last 16 months so they were noticeably worse. So I just tested Nature Throid medication starting with 1/4 g months. On the first day I started having lots of issues with it and it only got worse the next 2 days. So I stopped it. The doctor said that now that we have tested the medication, I don't seem to need it. The problem is that my life is very limited at the moment.

I also have gone through issues with low cortisol, but this is pretty good now and I don't have the symptoms I used to because of this. I also had very bad small intestinal bacterial overgrowth that was treated with Rifaximin antibiotics for a month and since then (5 months ago) I've been taking lots of probiotics and other things to help the gut recover. So all of my issues were caused by a longterm bad stress and I ended up very burnt out. Hence the low cortisol, thyroid issues and gut issues.

My functional doctor thinks that I've had thyroid issues for a few years and the issue has got on cell level so the cells are not working properly, which is what the super slow metabolism shows as well.

So my issue is that I have all these symptoms, no medication and I don't know what to do anymore. My doctor is on summer holiday until the end of July so I can only speak to her after July. I'm also meant to start some new work things in August, which I'm not able to do in the condition I'm in. I work part-time from home, which is ok, but I'm not able to go anywhere as I simply don't have energy to do so.

Should I still try Thyroxine medication (synthetic T4)? Would this possibly still work, even though Nature Throid wasn't good for me? I'm just thinking that maybe my body just got too stimulated by the T3 in the medicine and I would be better off with the inactive T4 medication?

What do you think about my lab test for Reverse T3? It's in the middle of the range, but I've understood that it should be at the low end of it.

Any suggestions?

Thank you!

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startagaingirl profile image
startagaingirl

Hi - it sounds like a lot of your symptoms could be down to nutrient deficiencies. balance and nerve issues, for instance, are usually associated with low b12. Aches and pains with low vit d. Nutrient deficiencies could also explain why you had such a bad time in trying to take NDT as t3 is very unforgiving of any deficiencies. Have you had any tests for vit d, vit b12, folate and ferritin? It is important that these are all fairly high for thyroid effectiveness, not just in range.

satu55555 profile image
satu55555 in reply to startagaingirl

I've been working with a functional nutritionist to get my levels of nutrients better. I had about 20 deficiencies due to stress and SIBO.

With B12 my last test Nov 2016 showed 528 pmol/l (our range 138-652, but I know it needs to be at least 500 so it's not great. So I'm still taking B12. I have the issue with B12 that my body cannot take active B12 at all. Within a couple of days I would be in a really bad condition. A year ago I was in hospital for 4 days after taking methycobalamin 500mcg for 4 days. So I take at the moment hydroxocobalamin 500mcg, 5 days a week.

Vit D was 82 nmol/l - We're working to get this over 100. I take 60mcg 3 days a week.

Ferritin was super low still in Nov 2016 as my SIBO was not yet treated at that point so I wasn't getting my iron. In Nov ferritin was 34 ug/l (range 13-150). It had risen though tiny bit from the previous test. Now that my SIBO is treated I hope I'm getting enough iron. I've been taking iron a bit less recently so maybe take more again.

I have not had a folate test taken, but now that you mentioned it I'll add it on the list.

I'm waiting for a referral that my doctor sent me last week via mail for exactly these tests. I asked for the referral as it's been a long time since Nov that any of this kind of test have been taken and I keep taking supplements. I'll just pay the full price for the folate as this would be a good idea to check as well.

I have a full range of supplements, but I'm sure it's not perfect so good idea to see if these nutrients could be a reason why things didn't go well. Thank you very much for your advice!

startagaingirl profile image
startagaingirl in reply to satu55555

Have you tried the simple thing to help absorption - going strictly gluten free? All the supplements in the world won't help if you are still increasing damage through intolerances.

Don't forget that with b12 supplementation you also need to take a multi b to balance them all. B12 works with folate so supplementing less than the full set may cause difficulties. I am surprised you had trouble with the methyl form of b12 as that is more easily absorbed than hydroxo as that needs to be converted.

Good luck

Gillian

satu55555 profile image
satu55555 in reply to startagaingirl

Hi Gillian,

Thank you. Yes, I'm on a dairy free and gluten free diet. Dairy free since Sept last year and gluten free since Feb this year.

I have a B-complex to balance the Bs. My B complex has 200mcg of folic acid. So not methyl folate, but as I have a problem with active B12s, I might not be able to tolerate methyl folate either. But I get that folic acid daily from the complex and a bit more from my strong multivitamin.

Yes, the methylcobalamin and also adenosylcobalamin are easier to absorb, but I get overmethylation with these so I cannot take them. So will have to stick to the hydroxy.

Thank you.

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