I’m one of the lucky ones who still can get T3. I take 20mg twice daily. No Levothyroxine, because my Endo doesn’t think I need it. My TSH is high as would be expected and my Free T3 is at the top end of normal. Despite my blood tests suggesting that I am ok I’m very symptomatic. I’ve gained 9 lb since January, my outer 1/3 eyebrows are patchy and thin. I’m losing hair, feeling colder than usual and also I’m quite constipated. I also have Fibromyalgia and take an aromatase inhibitor for breast cancer. Currently I’m off work with stress and whole body pain + fatigue. I’ve been feeling very unwell- anxious and also have a strong urge to eat carbohydrates in the afternoon. All these symptoms have indicated in the past that my thyroid is out of kilter. Last year I was swopped from Mercury Pharma to TEVA and exactly the same thing happened- again my blood results suggested that everything was normal as soon as I was back on Mercury Pharma all went back to ‘normal ‘.
Now although I’m back on Mercury Pharma I’m experiencing similar problems. I have filled in a yellow card. The pharmacist and doctors are scratching their heads. Does anyone have any idea what is happening to me? I feel like I’m falling apart! My Endocrinologist says that it may be that I’m not getting the full benefit from the T3 at receptor or pre receptor cellular level. I’m not sure where that leaves me, or whether I can do anything to help myself. Any advice would be very welcome. Thanks for taking the time to read my post 😊
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Boltongirl
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People who have 'Thyroid Hormone Resistance' have to take larger doses than 'normal' pf T3. One of our deceased Advisers - an expert on the prescribing and use of T3 also covered fibromyalgia and did research on it too. He himself took 150mcg of T3 in the middle of the night - he ensured nothing would interfere with the uptake.
Unfortunately his website was removed after his accidental death but I have a couple of excerpts:-
First, I will give a link which helps you to recover your health i.e. Safely getting well with thyroid hormones:-
December 21, 2002 Question: Great site! My problem is a little different. Over the past three years my TSH readings have ranged from 5.05 to 6.93. However, I have no hypothyroid symptoms whatsoever. My weight has remained constant for over 30 years (I'm a 55-year-old male) and I run five miles nearly every day. As a precaution to an even higher TSH reading, I went on 25 mcg of Levoxyl (T4). What a mistake! Ive never felt right on thyroid medication (it makes me feel hyper) but even worse. My cholesterol, which normally is in the 170 to 180 range, shot up to 217, which, of course, is high. From what Ive read on your site, its not uncommon for cholesterol to elevate on a low dose of T4. You don't have to convince me that T4 isnt the way to go. My question is twofold: First, should I even concern myself with thyroid medication if I feel great with a TSH of 6? And Second, should I simply try a low dose of Armour? Thanks in advance.
Dr Lowe: Thanks for the compliment on our website. You didn't say whether the level of thyroid hormone in your blood is high-normal or high. If it is, you may have mild general resistance to thyroid hormone. In general resistance, most of the tissues of the body and brain, and perhaps all of them, are partially resistant to thyroid hormone. That is, the tissues don't respond as readily to thyroid hormone as do most other people's tissues. Because the patient's pituitary gland is partially resistant to thyroid hormone, it continues to secrete TSH until the blood level of thyroid hormone rises higher than normal. When the thyroid hormone level rises high enough, it begins to suppress the pituitary gland's production of TSH. As a result, the patient's TSH and thyroid hormone levels are either high-normal or high. Because the body tissues are also partially resistant, the high-normal blood level of thyroid hormone doesn't overstimulate them. So the person has normal metabolism and feels normal despite having fairly high TSH and thyroid hormone levels. I dont know whether this is applies to you, but it is a possible mechanism.
The thyroid hormone preparation you took, T4 alone, is an extremely poor test to see whether you might benefit from thyroid hormone therapy. Nonetheless, taking thyroid hormone may be of no value to you. I say this for several reasons: You're apparently healthy, feel well, and have no evidence of deficient thyroid hormone regulation of your tissues, such as high cholesterol. Its highly likely that your elevated cholesterol after starting to use Levoxyl resulted from the extremely small dose you were taking. That low a dose isn't likely to benefit anyone other than a very small pygmy. Moreover, you're correct the small dose may impede metabolism and cause abnormalities such as your high cholesterol.
March 17, 2000 Question: You and your coauthors have written that many fibromyalgia patients are resistant to thyroid hormone. From what I've read, thyroid hormone resistance is hard to prove. How do you know when a patient is resistant to the hormone?
Dr. Lowe: If a patient has either "general" or "pituitary" resistance to thyroid hormone, this is indicated by the results of thyroid function tests. However, our studies suggest that perhaps 40% of fibromyalgia patients have "peripheral" tissue resistance to thyroid hormonenot pituitary or general resistance.
Patients who have peripheral tissue resistance to thyroid hormone have normal thyroid test results before treatment with thyroid hormone. So, we don't know that they have peripheral resistance until we've treated them with plain T3. (Of course, we treat them with T3 as part of more comprehensive metabolic rehabilitation). A three-part therapeutic outcome tells us which patients have peripheral resistance.
First, resistant patients recover from their hypothyroid-like symptoms and signs only with extraordinarily large dosages of T3 (called "supraphysiologic" dosages). Second, despite these large dosages which might hospitalize a person who doesn't have tissue resistancethe patients have no indication of tissue overstimulation. (We use various objective tests to rule out overstimulation, such as serial EKGs and various biochemical tests. We also closely scrutinize patients and use various physical exam procedures such as the Achilles reflex test.) Third, although the patients have recovered from their symptoms and signs with high dosages that don't overstimulate them, lab tests show that they have extremely high blood levels of free T3.
If these patients did not have tissue resistance to thyroid hormone, the high blood levels of T3 would cause severe overstimulation (termed thyrotoxicosis). Hence, we know the patients' peripheral tissues are resistance to normal levels of thyroid hormone. Unfortunately, we don't know the mechanism of the tissue resistance. But we're determined to identify the mechanism through further studies.
p.s Dr Lowe never prescribed levothyroxine - only NDT or T3 for resistant patients.
TSH should be low if you are medicating adequate thyroid hormone.
Therefore, I would say you are under medicated and wonder why your endo has said you don't require any T4. Having FT3 levels at the top of the range means nothing if you don't feel well and I actually need my FT3 levels much lower.
Weight gain, patchy eyebrows, constipation and feeling colder would suggest you are symptomatic and T3 isn't working on an intracellular level but just floating in the blood stream.
An urge to eat carbs indicates blood glucose and cortisol issues. Cortisol helps control the way our bodies uses fats, proteins & carbs and levels may become deficient through compensating for low thyroid hormone (or enough thyroid hormone that isn't working properly).
All thyroid hormone replacement requires adequate nutrients and iron to work well. Have you had Vit B12, folate, ferritin and Vit D recently tested ? Have you had thyroid antibodies recently tested ? (as an elevation can raise inflammation that may prohibit thyroid hormone replacement from working properly).
I take VitB12 1200 mcg and D 6000 IU in an oral spray daily. I feel that this has had a good impact on my energy levels and immune system. I don’t currently take folate and I’m not sure which supplements I would take for ferritin. My diet is generally very good although I crave bread and chocolate in the afternoon and into the evening. In my memory I’ve never had my antibodies checked.
I do have high blood sugar and also lots of stress in my life - your mention of cortisol and blood glucose chimes with me. I’m currently off sick with stress and my HBA1C went for 38 to 46 in three months. I did take Dapiglaflozin for prediabetes which seems to be working but I had an enforced break- I source it from Spain because currently it’s not licensed for pre diabetes and ran out.
From reading your reply it makes sense why I’m not absorbing my T3. Also explains why I’m so anxious and in pain.
I guess I need to work out how to piece the jigsaw together and work with my lovely endo who currently doesn’t have an answer but agrees that I may not be absorbing.
Hi @Boltongirl 👋 What do you mean ‘TSH is high as would be expected’ ? That’s not right? It should be low. Why has he put you on T3 only? Did he says you’re not a good converter? T3 is fine if that’s what you can tolerate but otherwise T4 first, then maybe a combination and the T3 only or NDT. I’m intrigued 😃
Thanks for your post. My understanding is that because I don’t take T4 it will be high because T3 doesn’t give biofeedback to my pituitary.my endo is adamant that I don’t need T4. He’s never really said why I’m better on T3 but knows that some patients do better. Crucially he supported me when the CCG said I couldn’t have T3. I think at the time he saved my life 😊
With Hashimoto's many patients need good levels of FT4 AND FT3
Have you ever tried taking mainly Levothyroxine and small dose T3?
Typically 100mcg to 150mcg Levothyroxine plus 3 x 5mcg T3
If only taking T3 then 40mcg T3 is likely not enough
TSH should be under 2 when on replacement thyroid hormones. Vast numbers on here find on correct levels of T3 and Levothyroxine, it's very likely TSH drops well below 1
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
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 with Hashimoto's
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
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
Medichecks currently have an offer on until end of May - 20% off
Just a different slant-I'm taking Letrozole after breast cancer plus I was already taking NDT. I had quite a job to get things to settle down again. I still take the Letrozole when I go to bed but I ended up taking extra NDT for almost a year! What was/or went wrong I've no idea but put it down to shock of my diagnosis, introducing the Letrozole or lowered B12 from the general Anaesthetic but I did go for a chat with one of the pharmacists in the local cancer hospital who said what I was saying wasn't unusual and she would ask around and do some digging for me. She was unsuccessful and sadly moved to another city but knowing others had suffered in a similar vein helped me to accept but it took along time to settle down. I didn't have Chemo but I did have theee weeks of radio therapy. I don't now if your cancer is recent or not but thought better to share than not.
Thank you. I’m 5 years post starting aromotase inhibitor meds. I started on Letrazole but then changed to Exemestane which I tolerate better. It could be that I stop this soon as I’ve had 5 years. I find I tolerate it best in the morning for some reason. Lately my internal thermostat which is always running hot seems to have cooled considerably although I’m still heat intolerant. We are a bag of chemicals and I know that as I’m getting older I’m changing and this too can upset the apple cart.
Possibly. My endo describes it as a soup of drugs. Possibly my Exemestane- cancer drug is influencing my situation- I’ve been on it for several years though.
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