Confused, no change, what am I doing wrong? - Thyroid UK

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Confused, no change, what am I doing wrong?

Chickenlady2009
Chickenlady2009

Just got my blood test results back. Everything is worse!

I've been on 75mg of levothyroxine since the end of April. ( On meds since 2015)

Gluten free for a year. Did a Cyrex blood test in March and was told to cut out sesame, oats, rice, dairy as I was creating anti bodies to those foods. So of those foods for 9 months.

Didn't feel better so about 10 weeks ago started AIP. (AIP is no nuts or seeds, no nightshade veggies, no grains. So basically just meat and vegetables) However I stick to it rigidly for three weeks and then occasionally cheat. It's usually with egg or something else my cyrex lab test told me I was ok to eat. My joint pain is really bad so I'm taking ibuprofen, which is not AIP complaint.

So with all my dietary changes I thought I would be doing better.... But.....

TSH 0.38 (0.4-4.5) out of range-low

T4 1.1 (0.8-1.8) (gone down since June)

T3 2.4 (2.3-4.2) (gone down since June)

Ferritin 26 (10-232)

In June this was 33. Nov 2017 it was 16. I've been taking supplements for an entire year. Every day since June, without fail, I'm taking dessicated liver tablets. Before that I was taking iron bisglycinate 50mg. Why isn't it improving? I'm taking with orange juice.

Do not understand why my T3 and T4 is lower when my TSH is also lower.

I'd be really grateful for anyone's input on this.

Thanks

17 Replies
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Hidden
Hidden

I am concerned that you are undereating which will reduce you thyroid levels and I have read somewhere that a low TSH, T4 and T3 can be related to starvation/very strict dieting.Have you any idea of calorie intake. Can I suggest that on the kind of diet you are having a much higher fat content might help. My feeling is though that everything is much too restrictive. Do you have hashis? Have you been tested for thyroid antibodies? Higher nature do a good vitamin C, taking one before all meals might help you digest your food better and your thyroid hormones.You have absorbtion issues by the sound of it.This sound improve when your thyroid hormone levels pick up.You are not well and need lots of rest and TLC.You sound a bit stressed, so gentle walks,some mindfulness. Buy yourself some flowers that sort of thing.

I have found aqua fit great for joint pain it has helped me no end but you need to avoid strenuous exercise for time being.

Chickenlady2009
Chickenlady2009 in reply to Hidden

Thanks so much for responding, MandyJane.

I was doing the diet because I had been advised ( by a FB thyroid support group) that it promoted gut healing, reduced inflammation and aided absorption. My gut actually feels pretty good.

Joint Inflammation is out of control agony at the moment.

I do have hashis. I thought my antibodies would go down doing this diet. Thyroglobin should be =or < 1 and it's at 2. In January it was 1.

Thyroid peroxidase is 101 and should be less than 9. Up from 67 in January.

Cholesterol is bad, too. HDL should be >50 and it's 44. LDL should be <100 and it's 111. Total cholesterol was good though.

I'm 5' 2" and I clocked up my last two days calories- 1500 per day. I don't think I am starving myself. I keep eating a lot of plantain chips which are quite calorie dense. i'm also just substituting sweet potatoes and butternut squash for grains/potatoes. But I guess I am doing something wrong. I will keep a food diary from now on.

Thanks again for your input.

shaws
shawsAdministrator

If you were diagnosed in 2015 but was only increased to 75mcg of levothyroxine in April this year you've been underdosed. Your doctor has not increased as your TSH is very low which means your T3 is also low when it should be near the top of the range.

Once diagnosed and given 50mcg of levo we should have a blood test every six weeks which should be at the very earliest, fasting (you can drink water) and allow a 24 hour gap between last dose and test and take afterwards.

If you have been gaining weight it is also probably due to being underdosed as the commonest question on the forum is 'weight gain'. I see you have also gone gluten-free and that you have had a Cyrex blood test'. I have no idea what Cyrex do, but the fact that your 'gluten-free you've already restricted yourself but the fact is that rice and oats don't have gluten you should have been able to eat them. Your diet should also contain carbohydrates as it gives us energy. Just taking meat and vegetables is not a 'varied' diet.

Did you have your blood test at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. If not your results will be skewed. TSH is early a.m. and drops throughout the day and may mean the difference between getting an increase or not.

Your T3 should be nearer the top of the scale rather than the bottom. To get the best results we need a Full Thyroid Blood Test which is TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Your ferritin is extremely low and you do need B12, Vit D, iron, ferritin and folate tested. Your T3 is at the bottom of the range and T3 is the only Active thyroid hormone and is needed in all of our T3 receptor cells. T4 i.e. levothyroxine is an inactive hormone and has to convert to T3 and as yours is too low which would prove your dose of levo is not sufficient.

You have to have another look at your diet as we have to have a varied one and it is puzzling that you've been told that quite a number foods cause antibodies. I don't know of any food that causes antibodies but if you have gluten-free helps but you are doing more than going gluten-free I think you are not on sufficient thyroid hormones to raise your metabolism as well as not eating sufficient of good foods for your body to function optimally. Ask GP to do the following and also follow the advice (above) on how to get the best result

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate. Post results on a new post.

You've had some good advice, so I'll just summarise a few points that have come to my mind:

1. You seem inadequately medicated - if you don't have sufficient thyroid hormone (whatever the cause), no tinkering around at the edges will help you to feel well.

2. Whatever good stuff you ingest, including supplements, if you aren't absorbing it effectively/adequately, it can't do much good.

3. You are very exclusion-focused in your eating, and I'd say that it isn't so much what you exclude, but what you eat to sustain you. It sounds like you may be consuming too few calories which is definitely counter-productive with hypothyroidism, and possibly too restrictive a nutritional range of food.

4. Stress can lead to elevated cortisol levels which can affect the conversion of T4 to T3 - studies have shown that stress can inhibit both type I iodothyronine 5′-deiodinase activity as well as type II 5′-deiodinase activity.

5. Have you tested for selenium, which is essential for thyroid function.

6. As an aside, I recently read a health blog where the blogger had used both Cyrex and also another testing option, and surprise surprise the results most definitely did not match. There could be a number of reasons for that of course, but it's worth bearing in mind.

Thanks for your response, MasieGray. I will ask for a selenium test and start counting my calories daily. I did not think I have been eating too few carbs/;calories (see above reponse). Now you have pointed out Cortisol levels, I wonder if that is the reason behind the skewed TSH and T3, T4. As i have really bad inflammation, recently.

I think i was shafted with the Cyrex labs tests, which were really expensive and not covered by my insurance :(

Hidden
Hidden in reply to Chickenlady2009

chicken lady.If you go onto one of the calorie counting weight loss apps such as MyFitnessPal or weightloss resources you can imput your weight, height and activity levels and it will tell you how many calories you need to eat. You want to ask for a figure to maintain rather than lose.

You do need increase in levo,if you are unable to get this via doctor you might want to consider supplementing thyroid hormones yourself and self treating. Thyroid hormones are in themselves good for gut health.

Chickenlady2009
Chickenlady2009 in reply to Hidden

Thank you, I will do the my fitness pal thing.

I really appreciate your help!

I don’t have as much knowledge of the other elements as the others but my specialism is diet and I just want to point out that you are very wise to follow the autoimmune protocol. By eating meat, fish and vegetables you are not cutting out any food groups you are eating protein, fats and carbohydrates in all of their natural and real food forms. Carbohydrates are supplied by fruit and vegetables in nature and by removing grains, all you do is remove processed carbs. Lots of people make this mistake in believing that carbohydrates are grains and pasta. Anyway it’s extremely difficult to stick to the real food or paleo diet but I can personally testify to its importance for recovery. I would also recommend that you might find Doctor Peatfield’s book very helpful. Best wishes

Yes, I agree, really hard to stick to. Most of socializing is eating out. I'm just eating before I leave the house and having a glass of water at the restaurant. People must think I'm crazy. But I also have really bad food poisoning reaction to restaurant salads and food that sat under a hot lamp or kept warm, so I never touch those. This leaves my menu options at zero.

Lol, really, I should be skinny, but I'm 20lbs over weight. I'm not even doing AIP to lose weight, only for inflammation! Lol, it's not working for either!

Thanks for commenting on my post. I appreciate your input.

SlowDragon
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

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)

If also on T3, make sure to take last dose 12 hours prior to test

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

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

Your FT3 and FT4 are both far too low

You need 25mcg dose increase in Levothyroxine

Highly likely you have low vitamin levels too. Have you had B12, folate and vitamin D tested?

If not ask GP to do so

Your ferritin is terrible. GP should do full iron panel. You may need iron infusion, or ferrous fumerate 2 or 3 times daily

Your vitamins are likely low because you are under medicated

Getting vitamins optimal is essential for good thyroid function

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

If GP won't increase your dose due to low TSH ask for referral to endocrinologist

Email Thyroid UK for list of recommended thyroid specialists,

please email Dionne at

tukadmin@thyroiduk.org

New NHS England Liothyronine guidelines November 2018

sps.nhs.uk/wp-content/uploa...

Thank you Slow dragon. I've seen two endos, both useless and didn't care about my dire vitamin and iron levels. I'm now seeing a gp ( here in the USA, referred to as primary care physician) who has Hashimoto's herself and has read the Izabela Wentz book. I see her next week. I refuse to be fobbed off any more!

SlowDragon
SlowDragonAdministrator in reply to Chickenlady2009

Low vitamin levels extremely common with Hashimoto's

Gluten intolerance often involved

Good your reading Isabella Wentz

Other good sites

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Ofcourse, everyone here will tell you complete labs need to be done, b12, vit. D iron, thyroid panel. For me, many years of low iodine led to being hypo. i love t3! So much better than t4. Will never go back. Im sick of dealing with this dr.s i have noticed they all have to follow their chart protocal. In the end, they work for health ins.co. and are afraid of being sued. Ive had to go to mex. To stock up on t3. Ive kept records and notes on the side affects i have on t4 and have to convince new dr.s that t3 is what works for me. Ive read that absorbtion rates of t4 can be 40 to 80% can sone food or medication be interferring? Absorbtiob rates of t3 are about 95%

Thanks for your response. This thread is over a year old. I am now on T3 and feeling much better. I also found a doctor who prescribed a massive dose of B12. I take that and betaine pepsin HCl with meals. That's helped a lot. My ferritin is still really low. I also think the Cyrex lab test was a waste of money. I added rice and sesame back into my diet and have no problems.

There's definitely a problem with finding a good doctor both in USA and UK. The one that prescribed the betaine pepsin HCl and B12 wouldn't prescribe T3. She moved away and I found a functional Dr who prescribed T3, even then I had to ask for it. Functional doctor moved away, too! but I don't think she had really helped me anyway.

I actually have no doctor now 😱.

I'm guessing you're in southern California from your name.

I'm in Southern Orange county.

There are no functional doctors that are taking new patients local to me.

I have to go into drs. Office "PREPARED" with notes. I tell them firmly and with authority,(lol) li have tried t4 many times with bad side affects, ( surges in hormones from rage to tears, like a freakin rollercoaster) and that what works for me is t3. If they aren't willing to work with me i move on. I get b12 shots from mex. And take probiotics and digestive enzymes for digestion issues. Lived in yorba linda for almost 20 years, now in grand terrace. Glad to hear your better

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