I feel really lost. I was diagnosed hypothyroid 2011, have never felt right on any dose of levothyroxine. At the moment I take 25mcg but might as well be none. My symptoms are sweating, dry skin, difficulty swallowing choking fits, hard stools, chest pain, depression, joint aches, heavy periods, fatigue, cold intolerance, puffy eyes that come and go. Advice appreciated x
TSH 5.7 (0.2 - 4.2)
FT4 14.8 (12 - 22)
FT3 3.6 (3.1 - 6.8)
Anti thyroglobulin abs 416 (<115)
Anti thyroid peroxidase abs 98.5 (<34)
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Jax02
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Hi Jax, although your FT4 FT3 are just in range your TSH is shouting to make more hormone, you're right 25mcg is just enough to stop any hormone production & make you feel worse.
What dose were you on and can you tell your GP you felt better on that?
Remember not to take medication before your blood test, else the medication will be measured & not your actual levels. x
Ps don't forget to ask your GP if your vital minerals are at good levels too - iron/ferritin B12/folate & vitamin D - for starters.
200 to 25. Very hypothyroid, double trouble with not one but two thyroid antibodies (you have Hashimoto's...), but feeling better with all of those hypo symptoms? How quickly did you go from 200 down to 25? 200 mcg might have had you over medicated, which can give you different symptoms. May I ask what your symptoms and your bloods were when you were up at 200 mcg?
I don't blame you for wanting less than 200 mcg. It would make me really sick, too, or it would kill me (I'm on less than half of that). You're happier on less than 200 mcg because you feel better. I would too!
If you want to get out of hypo and have no symptoms, you'll have to take a whole lot more than 25 mcg to ever get there.
Hi Jaz02, Oh my! No wonder you have all those hypo and Hashi's symptoms! You are very under medicated. Did your doctor tell you that you have Hashimoto's? This is based on your high thyroid antibodies, which mean Hashimoto's. Hashioto's is an autoimmune disease where your body is attacking your thyroid. This can cause hypothyroidism, or low thyroid hormones T3 and T4.
25 mcg levo is not the starting dose, 50 mcg is. So your doctor has left you under medicated from the start, which is why you are currently so hypo. How are you taking your thyroid medication? It needs to be taken on a completely empty stomach, either first thing in the morning, or in the evening after having not eaten for ideally 4 hours, which is when the stomach will be empty from the last meal. Thyroid medication is taken with water, but you cannot consume any other beverage or any food for 1 hour. Calcium and iron containing foods or supplements should be taken far apart from your thyroid medication, at least 2 hours, if not 4 after your thyroid medication.
Many people begin to feel better when they are gluten free. This reduces inflammation and enables you to absorb nutrients efficiently. You are under-medicated. Selenium supplements needed too.
So how is your diet ? Any other medication ?
I am suspecting anaemia so please have B12 - Folate - Ferritin - Iron Profile - VitD tested asap. Thyroid meds rarely work well if any of the previous are low.
Hi I feel better on less levothyroxine. I was taking as much as 200mcg levothyroxine at one time. Diet is mostly nothing all day and I take no other medication. Vitamin and mineral levels checked December 2017. Thanks x
Hi Jax, Hijacks?? Is that a typo...nothing all day? No food? Please tell us more. What do you eat when you eat? 200 mcg, now 25 mcg? Yowsers! Metabolic roller coaster.
I completely agree with Marz on the gluten free, as like many, that has been my experience. Inflammation is the enemy of thyroid disease and especially those with autoimmune diseases like Hashimoto's. At first I didn't believe that hooey. I thought, no way, no me, sounds silly. That's when I took a turn for the worse. I cleaned up my diet, and oh what a difference it made!
It is constipation. I don't go for a few days, maybe even a week and when I do it happens after eating or drinking and it comes out hard but I have an urge to go
Yes, that's what happens when you are hypothyroid, don't take the correct dosage of medication to take your FT3 up near 3/4 range and FT4 over 1/2 range. Low thyroid = slow metabolism.
Hi Jax, I am following this closely as i, too, am on 25mg of levo, and am still suffering the same symptoms as you, but minus the heavy periods as I am 64. I just moved to a new home, so have just moved medical practice. I will follow your posts with interest to see what happens. I believe my rose should be higher...then I might feel better and lose some of these debilitating symptoms. Good luck!
How long have you been on that dose? You should have been told to get bloods done again after 6 weeks (it takes that length on time to get a new dose fully into your system) if it's long than that I would go to your new doctor and tell him you were supposed to have been retested at the right time so could he please so it now?! Before you do that though this forum is recommended by NHS Choices for dysfunction of the thyroid gland and is run by Thyroid Uk do look at there web site and read their excellent advice and print off any thing relevant to show to your doctor.
Oh no, not you, too doreeng! You are under medicated if you are still suffering. 25 mcg is not even the usual starting dose, 50 mcg is. If properly medicated, you will have little or no symptoms at all.
As the others have said, you are very under medicated. See your GP and get dose increased by 25mcgs.
You need to take exactly same dose EVERYDAY for 6-8 weeks and then have new blood test. Dose should be increased in 25mcg steps, retesting 6-8 weeks after each increase, until TSH is around one and FT4 towards top of range and FT3 at least half way in range
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's
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 stomach acid and then low vitamin levels
Low vitamin levels can really affect things badly and affect Thyroid hormone working. It's essential to get vitamin levels optimal.
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
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)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first along with vitamin tests above
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased
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. (Patient to patient tip, GP will be unaware)
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
It's not surprising that you're feeling ill. You are ill and your doctor is negligent. B12 and iron deficiency is the result of under treatment. As you have an autoimmume illness it's essential to understand that you won't improve without taking on the inflammation. Inflammation, is now understood (Radio 4, Monday) to cause depression. Therefore, Omega 3, Vitamins A, D, K and E, Zinc, Magnesium, Selenium and Vit C could all help. Diet is the best way to achieve this. Gluten and Dairy can trigger antibodies so many avoid either.
Like many with Hashimoto's, you probably had low vitamin levels. Essential to test vitamin D, folate, ferritin and B12 at least once a year and supplement, often continually to improve and keep optimal
Gluten intolerance is extremely common and likely need to be strictly gluten free.
Ask GP for coeliac blood test before changing to strictly gluten free diet for minimum of 3-6 months. If it helps stick on it.
Dose of Levo will need increasing back up in 25mcg steps, retesting 6-8 weeks after each dose increase. Increasing until TSH is around one and FT4 towards top of range
Supplementing vitamins to keep these optimal and gluten free
If FT3 remains low then, like many of us with Hashimoto's, you may need addition of small dose of T3
No wonder you felt bad with those levels. You were under medicated here, too. Your FT3 is very low, as SlowDragon says. I felt horrible with low FT3 too. That's why I take T3 and T4.
If you FT3 was closer to where it should be, you'd have felt much better. With Hashimoto's, you want to be amply medicated to help take some strain off your thyroid. It's got double trouble because it's doesn't just have a hypo problem. It also has an autoimmune attack problem. Properly medicated Hashi's people tend to have TSH under 1.0, closer to 0.50, or even under 0.50. Mine is well below 0.50. As a result of nicely suppressed TSH, your FT3 and FT4 should be up over 1/2 range but not much over 3/4 (too high leads to other symptoms).
Firstly, has anyone suggested an alternative to Levo or the brand you've been on - it's unlikely, but they must have noticed you have low T3. You were not converting properly on 200mcg, nor are you converting any better on 25mcg, so I can see why there's a problem. You could have a genetic conversion issue which could be tested (it's the D102 gene)
, or you're not converting properly due to very high antibody levels / not enough co-factors for conversion. To reduce antibodies you could take selenium and cut out gluten and reduce sugar (as it promotes inflammation) and reduce the amount of stress / intense exercise you do. To aid conversion you need good levels of iron and vitamin d at the very least. If nobody is offering you a complete thyroid panel to include b12, folate ferritin and vit d then chase it up and post your results here.
You already had almost nonexistent FT3 in both the labs you already posted. Both were at the bottom of the range. FT3 should be up near 3/4 range, which is 5.875. You were miles away with 3.6 and 3.8.
I tried speaking to my doctor and endo about my FT3 and they just say it's irrelevant, my symptoms are causing me concern and I need to go back and insist on treatment
Yes, we understand and would feel that way too. But.....you are extremely hypo, have autoimmune thyroid disease Hashimoto's, and you still have all sorts of symptoms that you listed.
I would get your vitamins and minerals optimal first. It makes a huge difference! The Fab Four, Vit D, B12, folate and ferritin help the Thyroid work better and.can reverse a bad conversion rate, I've done that myself, plus they can get rid on other symptoms as well so really a win win situation!
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Is that a typo...nothing all day? No food? Please tell us more. What do you eat when you eat? 200 mcg, now 25 mcg? Yowsers! Metabolic roller coaster. 
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Please Help me :( - updated 19th Sept
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