Will I ever improve?

Long story short, I had a goitre and overactive thyroid when I was 20. It was removed and there are traces of thyroid left. I was put on Levothyroxine 100mcg for a few years. My weight gain was quick and my moods unstable, constantly tired. Meds increased to 200mcg and weight shifted. Was fairly stable mood wise, able to train in the gym 4 times a week and complete triathlons.

Fast forward to 2 years ago, I moved to the UK, bloods were tested and TSH levels showed too much T4 and meds dropped to 100mcg. 12kgs picked up in 3 months and moods were pretty erratic with suicide ideation. Referred to Endo who tried me on Armour Thyroid - didn't work, more weight and worse moods. DNA tests were done and I results show that I have a double mutation on DIO1 and DIO1.

Referred to Psychiatrist who advised my thyroid disease is presenting Rapid Cycling Bipolar, need to be on a MUCH higher dose. Slowly he increased the dose by 50mcg every 2 weeks, with ECGs. I am on 700mcg now, moods are more stable - weight is down 7kgs and stuck there. Heart Rate is between 72-85. I find when I try and run, even a slow jog, Hear Rate is shooting up to 185bpm (my max)

I am better than I was, but not near where I was before my mutant genes activated. If I do HIIT at the gym, I am wiped out for 3 days. I find I lack the motivation to do anything.

The psychiatrist wants to put me on anti-psychotic meds, one of the side effects is weight gain - which I don't want. It also makes you very drowsy and there is a risk of Diabetes with the weight gain. There is also talk about putting me on Procoralan, to reduce my heart rate - which I am sceptical about.

Anyone else have the same situation as me and do you take anything else in conjunction? Any advice to improve my quality of life would be greatly appreciated!

[haggisplant]

Gosh that’s an awful lot of thyroxine. What have your latest results been?

[Hidden in reply to haggisplant]

TS4 is really high, but from what I understand, with the mutations on DIO1 and DIO2, my body is not absorbing the meds, which is why I have to have such a high dose.

I am not presenting any overactive thyroid symptoms at all.

[greygoose in reply to Hidden]

If your FT4 is high, then you are absorbing it - otherwise it would not show up in the blood. But, you are probably not converting it to T3. Has your FT3 never been tested?

Also, your TSH does not show that you're on too much levo. The FT4 tells you if you're on too much levo, but you still need the FT3 tested to see if you're converting it.

The DIO1 and 2 mutations can affect conversion, as far as I know. So, it would show up in the blood as high FT4 and low FT3. It is low T3 that makes you hypo and causes symptoms. Unfortunately that you saw a doctor that doesn't understand any of these basics about thyroid and reduced a dose you were happy with.

[Hidden in reply to greygoose]

TSH 0.01 mIU/L 0.027 - 4.2

Free Thyroxine >100.0 pmol/l 12.0 - 22.00

Free T3 20.1 pmol/L 3.1 - 6.8

[greygoose in reply to Hidden]

Yes, ok, you're obviously over-medicated, now. But, that does show poor conversion. To need your FT4 that high to get 20.1 FT3. If you divided that by 4, your FT4 would still be over-range, and your FT3 just about 5, just over mid-range. So, you don't convert very well, and having such a high FT4 makes your conversion even worse. What would be better for you would be to take a lower dose of levo, with some added T3. But, you would have to bring your levo down very slowly - 25 mcg every six weeks - and add in the T3 when the FT3 gets too low.

[Hidden in reply to greygoose]

Thanks so much.

I can't understand if I am overmedicated why I have weight issues.

What is the optimum range I should I be within?

[greygoose in reply to Hidden]

Optimal is not a number in a range, you are on your optimal dose when you feel well, and your symptoms have gone, no matter where your numbers fall. Labs are just a guide, because it's often difficult to know if we're over or under-medicated. Unfortunately, doctors don't always see it that way.

Being over-medicated can make you put on weight just like being under-medicated can. People who are hyper sometimes put on weight, rather than losing it. So many hypo/hyper symptoms cross over. And, thyroid hormone is something you need just the right amount of for you - not too much and not too little.

[haggisplant]

So did they test t3? What was it? And tsh?

[Hidden in reply to haggisplant]

They did Test all 3 thyroid functions - I will ask for the results, not sure what TS3 levels were

[Hidden in reply to Hidden]

TSH 0.01 mIU/L 0.027 - 4.2

Free Thyroxine >100.0 pmol/l 12.0 - 22.00

Free T3 20.1 pmol/L 3.1 - 6.8

[SlowDragon Administrator in reply to Hidden]

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Did you do the test this way

Your results suggest you are extremely over medicated

FT4 should be under 22

FT3 should be under 6.8

[SlowDragon Administrator]

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

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Ask GP to test vitamins and both TPO and TG thyroid antibodies

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Come back with new post once you get results and ranges

[Hidden in reply to SlowDragon]

I will have my last blood results shortly.

If the DIO1 and DIO2 are activated, how does that affect the blood tests?

[fibrolinda]

Confused as you were pretty okay on 200 did it not occur to him that this was maybe the dose you need. Increasing by 50 every week must have been one heck of a shock for your poor body!!! No pauses to see how you felt just increase, increase, increase. Now you are very likely over medicated but instead of 'slowly' reducing dose till you feel well he wants to put you on other drugs to treat the symptoms caused by over medication? As I said, confused.

[Hidden in reply to fibrolinda]

No one knows why the mutated genes activate. It could be stress or environmental factors.

[greygoose in reply to Hidden]

Possibly the stress of being taken off a dose that made you well, and doing it by a drop of an insane 100 mcg in one go. I should think that would shock anyone!

[Hidden in reply to greygoose]

do I have recourse for this?

[greygoose in reply to Hidden]

I know nothing about the law, but a complaint to a higher authority would be a good idea to try.

[Hidden]

Dear Sammy - I feel so sorry about your medication and different opinions of a psychiatrist. One minute you were stable in mood, had lost weight and now suddenly the psychiatrist has suggested anti psychotic drugs. As you have difficulty with intense exercise, then your heart is unable to cope. Your heart beat raises dramatically.

What you might need is gentle exercise such as walking for half an hour. Alternatively use a static bicycle machine which can be adjusted for your height to cycle every day increasing the level of time over a period of weeks so you can cycle for about 20 minutes a day at your own pace. Also it is important to have your vitamin levels checked along with iron. Vitamin D deficiency can cause mood swings with depression. Combined with B12 and iron levels being low, these can also affect your mood. To reassure you that your blood is normal ask for tests to be done for vitamin and mineral levels. Magnesium deficiency and potassium as well as zinc and copper deficiency can also affect moods.

If it were me, I would not take the mood drugs recommended by your psychiatrist as it has not addressed your heart function problem. If you have not already had a diabetes test recently then ask for one. Supplements are available but some foods may help raise your levels which will help your heart especially Iron and folates.

Leave a gap before going back to the psychiatrist and have the tests done in the mean time so you can you can check if they are slightly near normal or well within range.

When you have had these tests done I would then have tests for gluten allergy dairy egg and grains. If you have a gluten intolerance this can damage your thyroid function and affect your colon too. You can have these tests for free on NHS. If you are lactose intolerant this can lead to problems including diabetes. Lactase is milk sugar, and if you are enzyme deficient as many people are, then going on lactase free milk may help.

Take care.

[Hidden]

Hi Sammy there is interesting information on a website concerning reasons why people cannot process vitamin D easy-immune-health.com ( vitamin D absorption),

Magnesium is essential to process vitamin D as well as calcium. Other enzyme deficiency such as DAO are dependant on zinc and copper. If any of these minerals are too low, then this will affect the vitamin D absorption. Vitamin D3 is converted from sunshine from the skin in the liver and kidneys. There are sources of vitamin D3 from food such as coconut oil and also sheep's wool, I buy a d3 supplement from a chemist which is a small dry tablet. These essential minerals may help you process the vitamin D. Will find some information on DAO enzyme deficiency which is a genetic enzyme disorder in about 30 percent of people but can be treated with an enzyme supplement. May be this is part of the genetic link enzyme which is disturbing your metabolism? No need to reply.

[Hidden]

As you have had a near total thyroidectomy the D102 and 101 and 103 are not converted to T3 and T4 in the thyroid. However the enzyme D102 is present in other parts of the body (iodothyronine deiodinase 2 ) selenoprotein is essential as an activator created by the enzyme - selenoprotein p is part of hepatic synthesis. Sepp 1 affects the whole body. The selenoprotein is mediated by selenium and megalin. Selenium is necessary to help T3 and T4 which are now being supplemented by levothyroxine.

ncbi.nim.nih.gov/gene1734 - gene expression

Title D102 iodothyronine deiodinase 2 shows how the thyroid gland would synthesise the enzymes. There is a page with a graph of the amounts of the enzyme found in other body tissues as well as the thyroid to help create T3 naturally in other places in the body. Press more on the page to find the graph of body parts which use D102. eg oesophagus and endometrium stomach.

In a post on thyroidunlocked created by member Rouser who needed information on how to convert selenium to T4 - title - " Selenium Methione and Total Thyroidectomy", 10 months ago, showed how member ResearcherUK explained how selenium is essential to the conversion of T4 into active T3 in the liver, kidneys, guts, and heart. Rouser explained that after his thyroidectomy his ferritin levels were too low. After supplements his ferritin levels rose and he felt so much better even though it was not the optimal level of 100. His ferritin levels had gone down to about 10. During the thread the importance of selenium and zinc were emphasised on how the levothyroxine is converted in the body without the thyroid gland. To find Rouser just click the member tag and type in his name and the post will come up.

The updated gov information Feb 13th on ncbi US Gov. website seems to indicate that even if your thyroid has been removed, there are other areas where T3 is activated through the enzyme which can be activated with a single sec residue on the upstream sec.

[helvella in reply to Hidden]

For clarity, the gene that affects T4 to T3 conversion is called DIO2 - that is, three letters and a number. Not D102 - a letter and three numbers. (Similarly for D101/DIO1 and D103/DIO3.)

The name comes from the enzyme that this gene affects which is a deiodinase. It removes an iodine atom from a thyroid hormone molecule - it deiodinates it.

On this forum we probably understand, but if you wish to look it up anywhere, it might help to get it right. If you are discussing with a doctor, and get it wrong, you are providing an excuse for them to dismiss what you say.

(More strictly, two single-nucleotide polymorphisms (SNPs) on the DIO2 gene, rs225014 and rs225015.)

academic.oup.com/jcem/artic...

The Wiki article provides a basic introduction as to what a single-nucleotide polymorphism (SNP) is and why it can be important:

en.wikipedia.org/wiki/Singl...

[Hidden in reply to helvella]

Thank you for the accurate update. I had taken Sammy's use of D101 and double gene

deficit in her post. The the US government paper Feb 2019 used the title D102 as a reference point. I hope the explanatory website link will show the key points to alternate pathways other than the thyroid gland of enzymes which compensate for removal of the thyroid gland. I hope the post from member of thyroid unlocked would also help to understand the importance of ferritin levels as well as other minerals selenium and zinc to help process the thyroid supplement. I will follow up your links.

[helvella in reply to Hidden]

Sammy actually posted DIO1 and DIO2.

The link to the DIO2 gene description on the National Institute of Health site is:

DIO2 iodothyronine deiodinase 2 [ Homo sapiens (human) ]

ncbi.nlm.nih.gov/gene/1734

[Hidden]

Hi Sammy - info on DAO enzyme deficiency might be of interest in links below. Apologies for using abrevs. for DO1/DIO2 earlier reply - computer keeps jumping! -I try to write in note form for links as data needs a professorial interpretation.

No need to reply.

daodeficiency.org

factsvfitness.com

[Hidden]

Definitely DIO1 and DIO2rs225014 and rs225015 double mutation from 23andme dna test