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General help and advice on sorting my thyroid

General help and advice on sorting my thyroid

Hi all, I'm going to try to keep this short but the story is a bit long and complicated. You can see more in my profile but at this moment I would like to see whether a trial of T4 would help me. I have very little energy and lots of pain walking up stairs/hills especially. I guess I've had that pain for at least 4 years now. I have all sorts of other things going on. SIBO is top of mind and my focus at the moment. This will be affecting my thyroid. I'm working with a practitioner who has me on increasing drops of Biocare liquid Iodine and Nutri Advanced Nutri Thyroid. We are tackling the SIBO but suspect I have a structural problem which may prevent me sorting out easily.

Here are my test results from January this year from HealthCheck:

TSH 1.72 (range 0.27 - 4.20).

Free Thyroxine 16 (12-22).

Total T4 98 (59-154).

Free T3 3.9 (3.10-6.80).

Thyroglobulin antibody 10 (0-115).

Thyroid peroxidase antibodies 9 (0-34).

I should add that I have worked on my adrenals in the past as I had adrenal fatigue for years with low cortisol. I had the Dutch hormone test in November which showed my adrenals now producing a nice curve of cortisol but my body not metabolizing it. The notes said "the patient shows significantly higher free cortisol compared to metabolized free cortisol. Check thyroid !"

I have been given a few Levo 100 mcg by a friend as I thought I may just cut some up and try it but it would be good to hear your advice and recommendations on obtaining it via NHS if possible or needed. I have absolutely no faith in the NHS or GP ability to manage any of this and am prepared to manage it myself if I have to.

Just realised it might be sensible to include my Ferritin 110 ug/L. Folate 10.1 ug/L. Vitamin D 67 nmol/L.

Thanks for reading :)

Heidi

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heidle

I take Activis and have never had them packaged like that - in 6s. Mine come in a box of 28 with 2 x foil blister strips of 14 tablets each.

Did your practioner do a urine iodine test and were you deficient, before suggesting the liquid iodine - not a good idea unless you are deficient.

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Hi Susie, I think she has cut the strip. She gets them from her GP so nothing unusual.

No he hasn't done a urine test and I will chat to him about that. Thanks for your comments. Any thoughts on whether I should be trying to get T4 based on my results please?

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It takes 6-8 weeks for Levo to have any effect so taking a few is really not going to help you.

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Ah okay. I'm not taking them. I'm hoping someone will tell me whether or not they think I should try and get them based on my results and if so, how to do that :)

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if you want to try Levo you will have to tackle your GP, T3 is low so you might be lucky but most wouldn't prescribe with your TSH and T4 not to bad.

As SS has said unless you are iodine deficient you should really not be taking it as it could be making you worse.

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heidle

TSH 1.72 (range 0.27 - 4.20).

Free Thyroxine 16 (12-22).

Total T4 98 (59-154).

Free T3 3.9 (3.10-6.80)

Apart from FT3 being just below range, those results probably wouldn't suggest that a GP should prescribe Levo. As we aren't tested when fit and well, none of us know where our "normal" levels are. One might expect to see, in a fit and healthy person, a TSH of no more than 2ish and possibly Free Ts around mid-range. Your FT4 falls just below mid-range. Your Total T4 could probably be doing with being higher, it's not very low but certainly not high, it reflects your FT4 really. It's your FT3 that's a problem, you're not converting the T4 that you do have into sufficient T3.

Have you had vitamins and minerals tested, particularly

Vit D

B12

Folate

Ferritin

We need good levels, and ferritin in particular for thyroid hormone to work and conversion to take place (our own hormone as well as replacement) needs to be half way through range. So as a first step I would be looking at optimising all those vitamins and minerals. Optimal levels are

Vit D - 100-150nmol/L according to the Vit D Council, the Vit D Society and Grassroots Health

B12 - an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Folate - at least half way through range

Ferritin - half way through range

Also selenium helps T4 to T3 conversion, as does zinc.

Iodine is a contentious issue. Hypothyroidism can be caused by iodine deficiency. But you wont know that you're deficient until it's been tested. Supplementing iodine, without a deficiency, can cause problems. Adults need 150mcg daily, but not necessarily in supplement form. Iodine is easily available from diet, particularly white fish and non-organic milk and yogurt

bda.uk.com/foodfacts/Iodine...

From btf-thyroid.org/information...

Iodine

People with hypothyroidism should avoid preparations high in iodine as it can make the condition paradoxically worse. Additionally, in certain people it could provoke hyperthyroidism.

The British Thyroid Association has issued the following statement on the use of iodine supplements and we have advised our members accordingly

•The thyroid gland requires iodine for normal function. Adults need 150mcg of iodine per day.

•Typically we obtain the iodine we need from a normal healthy, balanced diet. Table & cooking salt in the UK contains little or no iodine. Too little iodine can result in thyroid swelling (a goitre). Goitre in the UK is not due to iodine deficiency Too much iodine can be dangerous and cause either under activity of the thyroid (hypothyroidism) or, in some cases over activity (hyperthyroidism).

•If you are taking thyroid hormone (eg. levothyroxine) for hypothyroidism or for a goitre (an enlarged thyroid gland) there is no need to supplement with iodine. It will do no good.

•Also, it can be harmful and dangerous to take iodine if you have an overactive thyroid, even if you are on standard anti thyroid drugs, as the extra iodine counteracts their effects.

•Should you take iodine supplements at any time? Only if it is recommended by your GP or hospital consultant.

So it makes sense to test iodine before considering supplementing. And not the loading test where you take an iodine pill before hand, that is apparenty a flawed test. The best test is said to be a urine iodine test that establishes existing levels without supplementation. One such test is

Genova Diagnositics Urine Iodine Test END25

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Thanks for that. I did post my results for folate, D and Ferritin. I'm aware that my folate isn't as high as it should be and my D is certainly not optimal and I've been deficient for years. I self inject B12 so can't test.

I'm currently taking Selenium and zinc in various forms though don't get along very well with zinc because of my weird digestive issues.

I'll look at getting my iodine tested.

So you feel it would be better to continue to optimise my existing low levels of D, folate, zinc, selenium rather than pursue T4 supplementation?

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heidle

I did post my results for folate, D and Ferritin.

I didn't go back to your original post so I didn't see them, it appears you have edited it to add those results. So it looks like you need to work on Folate and Vit D. Not sure what your range for ferritin is (I'm post-menopausal and for that group it's lower than for other females) but it's recommended to be half way through the range.

So you feel it would be better to continue to optimise my existing low levels of D, folate, zinc, selenium rather than pursue T4 supplementation?

I'm not medically qualified but that is what I would do first. Once they're optimal, retest thyroid and see if your levels have improved. If not, then it's time to think where you go from there.

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Ah yes I realised as soon as i'd posted I should have added those results so edited my post :)

Think im technically postmenopausal too and think my ferritin is ok.

Thanks for your help I'll keep doing what I'm doing and working with my practitioner but will revisit the iodine issue !

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As you have mentioned digestive issues I am wondering how your diet is ?

Are you taking any medications ??

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Ooops ! - just read your Bio 😊

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Hi

You’re had lots of good advice.

You do need to address your vitamin levels first as if low they will not help your symptoms.

With regards the Levothyroxine, I’m on the same brand and my pack comes with 14 tablets per pack (100mcg).

You say your friend has given you this, even if you did take it, you are going to run out.

Levothyroxine needs to be taken every day for life. Not just take it for a few days.

The problem you face, and I did, was that as your TSH is not 10 or over then the NHS will not start you on Levothyroxine.

You might find a sympathetic GP that will start you on Levothyroxine due to your T3 results and your symptoms (you haven’t listed them) but, I doubt it.

They are obsessed with TSH results despite T3 being very important.

Also when we start on Levothyroxine, we start on 50mcg (25mcg for elderly and heart conditions) and have a blood test 6 weeks after taking it to see how our TSH, T4 & T3 levels are, then we increase until our results are TSH 1 or below & T4 & T3 in the high figures of the ranges and most importantly are symptoms have gone.

Your taking selenium and zinc which is good. I also take B12, magnesium and vitamin D & C.

Make sure you don’t take too much vitamin D as this can make you ill, especially with the good weather we are having at the moment.

Iodine be very careful, unless you are iodine deficient you don’t need it.

Best Wishes

Peanut31

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Thanks for that. Yes I figured I'd have enough for a couple of weeks and maybe I could see if I felt any better. Before I did this I was hoping to find somewhere I could obtain future supplies. Anyway....now I'm sticking with my original plan which is to continue working with the guy I'm working with to try to get some of my levels up and sort my SIBO. It's all very challenging!

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We can help with suppliers, but, members will not be forthcoming with this information until you sort everything else out.

Vitamins etc, this is what I did. However, I got worse only because I had Hashimoto’s and my TSH eventually shot up to 12.2, that’s when the GP started me on Levothyroxine.

Best wishes

Peanut31

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My guess is that you have hashimoto's or inflammation of some sort. Have you had your antibodies tested? If your antibodies are high it is preventing the conversion of t4 to t3, thus your low t3. Eventually, your TSH will shoot up, like mine did. I especially think this is true if you are having gut issues along with previous cortisol problems. That is how mine was found. Hopefully you are also looking at reducing or illuminating gluten from your diet as well.

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I'm hoping that's not the case. Previous thyroid tests have all been "within range" ...even T3. And no antibodies so I'm feeling okay about that. My T3 has reduced since getting sick with sibo. It's been nearly 3 years of my poor microbiome suffering. I have mito problems around energy production ( variety of things there). I need to get a lot more magnesium into my cells us all the usual folate, D etc. I'm suboptimal in all of them. I need to fix my gut and up my levels. Then my T3 should be better. That's a big ask though. Ps have been paleo since I got sick so no gluten. Thank you for taking the time to comment :)

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