Thyroid UK

Elbows and feet pain

Hi everyone, I have hashimoto, hypothyroid, off and on not well for the past 5 years. I am on 100 mg levothyroxine and the doctor told to reduce it to 75mg due to palpitation. I have painful elbows and when I stand up my feet hurt so much. I am putting on a lot of weight too. I used to weigh 105 lbs and now I’m 120 lbs. My latest reading of blood test

TSH <0.01 mlu/L (0.30 - 4.64)

Free T4 22.0 pmol/L (9.1-24.4)

Free T3 4.02 pmol/L (2.23-5.35)

Tg Ab >4000 lU/ml <115

Tpo Anti 144 U/ml <34

The doctor said everything is in range and I don’t need any supplements. Please help me so depressed. Many thanks and looking forward to your views.

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And yet another example of how little GPs understand blood test results, and how little they know about thyroid!

No, everything's not 'in range', your antibodies are very much out of range, so you have Hashi's. But, I doubt your GP even knows what that is.

Your TSH is out of range, but that is irrelevant, and in no way means that you are over-medicated. But, he doesn't understand that. Also, as you have Hashi's, that is exactly where you need your TSH to be. The less gland activity there is, the less antibody activity there will be.

Your Frees are in-range, on the other hand, but that doesn't mean much, because the important one, the FT3, is too low in range. It's only just over mid-range, and that is obviously too low for you, because you still have symptoms. There's room for an increase, even though your FT4 looks good.

Palpitations can be a symptom of under-medication.

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Thank you so much greygoose, please advise me what to do next

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I think your next step should be to get your vit D, vit B12, folate and ferritin tested, and supplement according to results, to optimise your nutrients. Your thyroid hormone will work better when all levels are optimal. :)

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I can only agree with Greygoose! Most doctors know frighteningly little about thyroid disease and treatment.

Given that your FT4 levels are close to the upper normal range, yet your FT3 levels are lowish, I bet you don't convert T4 to T3 very well. I have been there, and I needed T3 as well to feel truly well. I'm not saying you will, but if you are a bad converter, adding more T4 (that is, going beyond 100 mcg a day) might not be the answer.

I also agree with Greygoose about the TSH; I've had a suppressed (<0.01) TSH for over a decade (I also have Hashimoto's) and I feel much better than when my TSH is "anywhere in range".

Many patients with Hashimoto's who have been hypothyroid for years have developed adrenal fatigue which makes it more difficult for the body to effectively use thyroid hormone. I think in the UK the only way to find out is to order private labs (hopefully, others in the UK will chime in and tell you more about this).

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Thank you so much anna69, can you too please advise me what should I take in order to feel much better. I am done with endocrinologist and Gp’s. Really appreciate a lot if greygoose and you tell me what supplements and should I take t3 medication with levothyroxine?

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It would be well worth getting vitamin levels tested, have you got any results from tests? Don't take docs word for it that all are ok. In range is not the same as optimal.

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Well, it's all trial and error, I'm afraid...as we are all different.

I started out on T4 only but never felt well on it, but was told by half a dozen doctors during the ten years I spent taking it that my levels looked "just fine", and that my thyroid disease was in no way responsible for how I felt.

Seven years ago, I switched to NDT, and am doing very well on it, but it took some tweaking and also a lot of time to find the right brand for me. Not everything works for everyone, you know.

I briefly tried taking T3 only but felt terrible on it. I know others who thrive on T3 only, though, which only proves once again how different we are.

If you want to try T3, I'd suggest either adding some synthetic T3 (5 or 6.25 mcg) to your T4 (T4 might have to be adjusted accordingly) or switch to NDT slowly by adding half a grain and decreasing T4 at the same time, increasing NDT and decreasing T4 every other week or so until you've found your maintenance dose of NDT and weaned off T4 completely. Both T3 and NDT can be difficult to get a prescription for. I am not in the UK so others will have to comment on this, but I have seen many posts about how difficult it is to get T3 or NDT in the UK...many members, myself included, self medicate and order the drugs we need online.

My own experience is that if additional T3 is what you need, you'll feel better very quickly even after adding low doses of T3.

Some people combine NDT and T4, and some NDT and T3, so it can take some time to find out what works optimally for you.

Remember: there is no right drug, brand or dosage for everyone. But, if you feel terrible on T4 only, and your FT3 levels are lowish, you should not just accept the doctor's comment and assume your thyroid is not to blame for how you feel. It's possible to feel better, you most likely will, but please be patient as it might take some time to find the right drug(s) to achieve that. Thankfully, there is so much knowledge and experience in this forum that there will be people here ready to accompany you every step of the way.

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If your vitamin D, folate, ferritin or B12 are too low this really slows the way thyroid hormones work.

With Hashimoto's it's very common for them ALL to be low

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

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

Ask GP to test vitamins - show to GP if they are difficult

See Box 1. Some possible causes of persistent symptoms in euthyroid patients on L-T4

onlinelibrary.wiley.com/doi...

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Your FT3 is LOW , this shows you have poor conversion. Very common with Hashimoto's

Improving vitamins (assuming they are low) and going strictly gluten free should help.

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PS. I think this article explains it very well:

chriskresser.com/3-steps-to...

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Thank you so much to all the lovely people for your assistance. I greatly appreciate the amazing information you have provided me with. Will definitely update you’ll soon with another blood work done.

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