Please help ..why are my levels dropping and I'm feeling awful again :(

Hello you lovely people. Please bear with me this maybe a long post.

I was really poorly back in Nov last year when I was under medicated on 150mg of Levo my Tsh was over 20 but my endocrinologist prescribed T3 20mg and reduced my Levo to 100mg.

I felt great and thought this is it .. I'm cured. But that was back in Jan and didn't last long. I'm feeling worse again. I'm confused at what is going on.

Please help me.

I have pa and have regular injections of B12 and supplement with the spray in between and this is fine. I also take all the vitamins recommended on here and have gone gluten and dairy free since Jan.

My blood tests in Jan were :-

TSH. < 0.10 Range 0.30-5.50

Free T3 5.5 Range 0.00-7.00

Free t4 12.1 Range 11.59-22.70

B12 1802 Range 223.00-1132

Folate >20 Range 3.90-20.00

Ferritin 38 Range 14.00-186

Thyroid per oxidase ab 71 Range 0.00-33.90

Vit D 140 Range 50.00-125

Iron 20 Range 11.00-30.00

Today my test results came back :-

TSH. < 0.10 Range 0.30-5.50

Free T3 4.9 Range 0.00-7.00

Free T4. 12.5. Range 11.59-22.70

B12 1595 Range 223.00-1132

Folate >20 Range 3.90-20.00

Ferritin 33. Range 14.00-186

Thyroid per oxidase ab 60. Range 0.00-33.90

Vit D 170 Range 50.00-125

Iron. 22. Range 11.00-30.00

I really don't understand why as I'm taking the drugs correctly .. why have my blood tests dropped.

Please, please any advice out there greatly appreciated

Thanks

Marie x

15 Replies

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  • Sporty-mi Were both blood tests done under the same conditions? Were they done at the very earliest appointment of the morning (what time). Did you fast overnight? Did you leave off Levo for 24 hours? Did you leave off T3 for 12 hours?

    What are you doing to raise your ferritin? Are you taking iron tablets? Are you taking each one with 1000mg Vit C to aid absorption? Are you taking your iron supplement 4 hours away from your thyroid meds and 2 hours away from your other supplements?

    Are you taking Vit D 4 hours away from thyroid meds?

    Are you taking magnesium 4 hours away from thyroid meds?

    As you have Hashi's, don't forget that Hashi's swings will make symptoms and test results fluctuate.

  • THANK YOU SO MUCH FOR TAKING THE TIME TO REPLY.

    Yes they were done at the same time around 9..

    I did exactly the same thing I always take other tabs 4hrs apart from thyroid men's and stopped both 24hrs before tests.

    I'm not taking iron tabs but do take "spatone" liquid iron daily. Didn't know how to raise ferritin ?

    Yes I have hashi but I'm so disappointed as I was feeling great when I first went on the T3 and I'm feeling terrible again 😥

  • T3 should be left off for 12 hours, not 24. So you can assume your FT3 would actually be a bit higher than is showing in those results. However, there is still plenty of room for an increase in meds. An increase in Levo will raise your FT4 and if your conversion is good it will also raise your FT3. An increase in T3 will raise just your FT3. As long as FT3 stays within range then you won't be overmedicated.

    Spatone liquid doesn't contain very much elemental iron. This is what I have found:

    "One Spatone sachet contains 5mg of iron in solution. Scientifically shown bioavailability, as high as 40%, means one sachet can provide up to 2mg of iron."

    The recommended level for ferritin is at least 70 for thyroid hormone to work properly, and for females 100-130 is best. So you have a long way to go.

    If you can tolerate iron supplements then Ferrous Fumarate (buy from Amazon, not your usual pharmacy) is normally recommended. Each tablet gives about 65mg elemental iron, and to raise ferritin one tablet twice a day is the usual amount, taken with 1000mg Vit C to aid absorption. You would need to retest after you'd finished the packet of 84 tablets.

    If you can't tolerate the Ferrous Fumarate (some people experience constipation and tummy upset) then iron bisglycinate such as Solgar Gentle Iron is not so harsh but only contains 20 or 25mg elemental iron.

    If you are a meat eater then eating liver once a week will help raise ferritin, which is what I do as I can't tolerate iron supplements. A meal of about 120-140g liver, or mince it and hide in casseroles, cottage pie, curry, bolognese sauce, eat pate, all will help.

    As well as a strict gluten free diet helping to reduce antibodies, (and dairy free), are you supplementing with selenium L-selenomethionine 200mcg daily which also helps. As does keeping TSH suppressed which yours is so that's good.

    By the way, you won't be 'cured'. What you can hope for is to reduce the antibodies and hopefully the antibody attacks, but you will still have some antibodies which will attack your thyroid until it is eventually destroyed, then you'll have full blown hypothyroidism without the fluctuation that Hashi's causes.

  • Thank you so much seaside susie

    That's very helpful - I go to see my endocrinologist in a couple of weeks and I'm hoping he will uncrease meds !

    I know I won't be cured. I just want to feel better like I did when first introduced to T3. I'm taking selenium.

    Interesting about the iron though .. I will try iron tabs and hate liver but will give it a go !

    I noticed my vit D is high not sure whether to stop the d3 I'm taking or reduce it ?

  • Your Vit D is good, only just over the recommended level, certainly not enough to worry about. There is a risk of toxicity when level goes past 220. What dose D3 are you taking? You need to maintain your level so you could reduce to 5 days a week instead of 7 like I do.

  • Ah thanks .. I'm taking 10,000 iu D3

    Maybe I should take it 5 days like you 😊

  • OK, well 10,000iu daily is a loading dose. You've now reached a level where you can reduce, try 5000iu daily now and perhaps retest in June and you maybe able to reduce again during the summer.

  • Ah right I didn't realise .. thank you I will take one every other day.

    Thank you Di much for your help x

  • Hi Sporty-mi, are you sure your labs t3 ranges really start at 0? My labs other ranges look similar to yours but the t3 range is 3.1-6.8. Anyway if your t3 ranges are correct then in January at 5.5 you were at 79% in the range - ie in the magic upper quartile where most of us feel well, whereas now at 4.9 you are at 70% in the range. For many myself including that's enough of a drop to feel rubbish. You need to get it back in the upper quartile.

    Why does it happen? There are various theories and many on here give fantastic advice on supplementation etc. Some may also suggest adrenal issues, but in my case my adrenal function was actually better than I expected, so I've been looking for different answers. In my own experience, I have found that my ft3 & ft4 levels first raise, then often drop back after each doseage increase I've done (three steps forward, two steps back - so progress but slow) and my own theory is twofold -

    - First, sometimes for combo t3/t4 users ( ie with conversion problems), if you still have any thyroid left then when you increase your dose your body is initially flooded with extra t3 and feels wonderful. It takes a few days, sometimes weeks for the TSH feedback loop to catch up and say 'woah slow down thyroid production boys, we've got plenty of t3 here!' So in effect your body will downgrade your own thyroid function to counterbalance the extra t3 you've just given it. This explanation is how I remember it (hopefully not horribly inaccurately!) from Paul Robinsons Recovering with T3 website and his suggested solution is to add more t3 to the dose.

    Second - when you've been hypo and your tissues have been t3 starved for a long time, your metabolism slows and downgrades functioning to a lower gear (eg first). When you start to finally reach decent levels of t3 with your replacement therapy, your body's need for t3 actually increases because you are shifting up a gear (eg second third etc) so to speak, and your body now needs more gas to run! So with each doseage increase a little bit more of you comes back to life, and your body's need for t3 will keep going up like this until you reach full health again. For me various symptoms have been dropping off and disappearing like this along the way (awful muscle aches gone! Joint pain gone! Constipation gone! Hairloss gone! Most recently, my skin has come back to life and is now supple and firm again not a puffy papery mess!). When my levels drop now, the only symptoms I have are exhaustion and cold (though that's enough) so I hope I'm getting close now.

    This seems to be what's happening to me anyway. Hope it provides some food for thought and you feel better soon :-) x

  • TSH is always suppressed on medication containing T3, its an unfortunate side effect, but not significant as long as you have enough T3. And what is noticeable is that your FT3 has dropped. So you need more T3. More T4 might do it, but I assume you were prescribed the T3 because you weren't converting well, in which case it will do little for you.

    Most people feel their best with FT3 in the top quarter of the range. In your case with that stupid range (T3 is essential for life, after all! so 0 means you are dead!) I'd say an ideal range for you would be 5.5 to 6.

  • Nonstopmummy thank you so much for explaining in so much detail. That even I can understand with my rubbish brain fog brain lol.

    That makes sense to me. And yes I've only just been prescribed T3 in January. I go back to see my endocrinologist on the 13th and I'm hoping to god he increases the T3 and not t4.

    It's great to be able to chat with someone who understands I live alone and look after my elderly parents who think I'm a hypochondriac lol. And few friends who think I'm nuts !

    What dose are you on now and how long has it taken you to feel well again?

    And thanks Ruthi .. yes that is the range on my blood test report from the docs !

    X

  • Sporty-mi three weeks ago I was on a daily dose of 125mcg levo + 18.75mcg t3, a ratio of approx 6.6:1. This produced the following results:

    TSh 0.02 (0.27-4.2)

    Ft4 19.9 (12-22) this is at 79% in the range, in upper quartile

    Ft3 6.2 (3.1-6.8) this is at 84% in the range, in upper quartile

    I was 5 weeks pregnant at the time. Had felt great but then started crashing -panicked thinking it was my adrenals but no it was just the pregnancy lowering my thyroid levels super fast! In just three weeks levels dropped to:

    TSh 0.02 (0.27-4.2)

    Ft4 15.5 (12-22) this is at 35% in the range, in lower mid quartile, drop 44%

    Ft3 6.2 (3.1-6.8) this is at 38% in the range, in lower mid quartile, drop 46%

    This is normal in pregnancy as thyroid demands increase greatly so Ive just upped my dose to 150mcg Levo + 25mcg t3 - ie I have increased both t4 and t3 proportionately to keep the ratio of approx 6:1 the same, as I believe this is the correct ratio for me. You will see that in both sets of results above, my ft4 and ft3 are in the same part of the quartile range (ie both high or both low). To me this indicates that my meds ratio is exactly what I need to correct my conversion deficiency, as both t4 and t3 are being used up by my body at the same rate, ie in balance. Prior to starting t3, my ft3 was always much lower in range than my ft4, which is how I realised i had a conversion problem in the first place.

    Not everyone on here needs these two to be in balance, some don't even need t4 at all. Some only get on with ndt, and so on. We are all different, and this is just what seems to be working for me.

    I still have not achieved feeling well all the time - as mentioned it seems to be three steps forward, two steps back with me - but I have made a lot of progress in the last nine months and lost a great many symptoms along the way, especially since the addition of t3 (and had some wonderful if short periods of wellness after each doseage increase) so it feels like I'm on the right track :-) x

  • Ps I totally know what you mean about family / friends thinking you're a hypochondriac - it can be lonely and unsupportive and that's why this forum is so great because everyone on here actually understands how you feel :-) x

  • Nonstopmummy.. poor you wow your test results have changed dramatically. I guess it's trial and error. Thanks for your help and support. It means so much to me.

    I just hope my endocrinologist will increase the meds when I next see him as it was a fight just to get the prescription for T3 lol.

    I do hope your feeling better soon.

    Take care and keep in touch. I'm here for you too. If only a sympathetic ear xx

  • Well I've been back to endo today and he has increased my T3 to 40mg (was 20mg per day)

    My tabs are 20mg per day .. and I'm supposed to take half in morning and half at night but I take them at night with my levo (100mg)

    He said to try half tab 3 times a day at first going up to one twice a day !

    I would prefer to take it all at night.

    Do you think if I take 2 tabs at night this will be ok or should I increase slowly ?

    Any advice greatly appreciated

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