Hi there, I'm here again asking for advice please? having received a phone call from my doctor following blood test last week, he says that I'm hyper once again & wants to further reduce my t4 meds 😢 my results are:
TSH = 0.05 (range 0.4 - 5.5)
Free t3 = 3.6 (range 3.1 - 6)
Free t4 = 6 (range 11-26)
I have hashimoto's and coeliac disease.
I feel very unwell, gaining weight, dry itchy eyes, exhausted, deep tingling pain in shins & feet etc...
I started self medicating Tiromel-t3 in September 2017 & built up to to 37.5mcg thus far, reducing my 100mcg of Levo down to 50mcg as advised on another support group.
I'd be grateful for any input/advice ☺ thankyou in advance
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Bbe4gem
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Just because you are taking T3 doesn't mean that you need to lower your dose of Levo, that would depend on your FT4 result before starting the T3. And just because you're taking T3 doesn't mean that an FT4 result way below range is right.
I take Levo plus T3 and I need both FT4 and FT3 arond 75% through range, if my FT4 is near the bottom of the range I can't function. It's all very individual, we have to experiment, tweak our doses and find what dose and FT4/FT3 levels suit us personally.
Looking at your results
TSH = 0.05 (range 0.4 - 5.5)
Free t3 = 3.6 (range 3.1 - 6)
Free t4 = 6 (range 11-26)
I would say that considering you take 37.5mcg T3 it's not doing much for your FT3 level. And your 50mcg Levo I would have thought would at least bring your FT4 to bottom of range. Maybe something is stopping the replacement hormone from getting into your cells.
As you have Hashi's are you addressing this with a strict gluten free diet and supplementing with selenium l-selenomethionine 200mcg daily as these can help reduce the antibodies, as can keeping TSH suppressed.
Did you know that Hashi's causes gut/absorption problems, and as you already know you are Coeliac this could be part of your problem. Check out the information and links given by SlowDragon in her reply near the end of this thread healthunlocked.com/thyroidu...
You certainly need your nutrient levels testing - Vit D, B12, Folate, Ferritin - and you will need to address any low levels or deficiencies.
You say you are "here again asking for advice please" yet your profile shows no other posts that you have made asking for advice on this forum. What does your other forum say about your current situation?
As for your doctor saying that you are "hyper once again" it might be an idea to educate him in that when you have a diagnosis of hypothyroidism then you can't suddenly develop hyperthyroidism, it's not possible. What can happen is that you can become overmedicated and he's obviously looking at your TSH only and wants to dose by that, point out that your FT4 is bottom of range and FT3 barely in range.
Does your doctor know that you take T3? If he knows anything about it then he should know that it has the effect of lowering, even suppressing, TSH.
The first time I came on healthunlocked was 10 months ago when I asked for advice on getting a supply of NDT. However I didn't manage to get any & instead went on holiday to Rhodes & managed to purchase a supply of liothyronine, & Turkey tiromel. I did this because my endo who is NHS said my t3 levels were very low & it looked like a conversion issue, but he could not prescribe t3 & neither will my Gp (they reluctantly test my free t3 & free free t4 as it is) my Gp doesn't know I take t3 because they said if I do self medicate they will not monitor me & I can't afford to go private.
I have always been low in both free t4 and free t3 & I am a very strict coeliac, 4years now with rare cc issues. I supplement with selenium, zinc, vit c, primrose oil, omega 369, I take full spectrum betaine hydrochloride, turmeric, apple cider vinegar, & due to low levels of b12 (levels 232 prior to supplementing & 434 afterwards, but Gp insists that's normal) I sublingual Jarrow b12 x 3 daily, I also take d3 & k2 mk7.... My NHS GP's are very unhelpful & I'm lacking confidence & energy to challenge, I get very anxious & upset so it is difficult for me, which is why I am trying my best to look after myself.
I didn't realise that it's not absolutely necessary to reduce Levo when taking t3, I will increase it back to a hundred & perhaps add in another 12.5 of t3 as I really feel lifeless & my tingling psin in lower extremities is horrible 😔
Thanks for taking the time to advise me I really appreciate any help, my brain fog is awful! ☺
Only increase your Levo by 25mcg at a time, leave 6-8 weeks before retesting/increasing. Also, only increase T3 by 6.25mcg at a time. And don't change doses of both Levo and T3 at the same time, you wont know which increase is beneficial and you may miss your sweet spot where you feel best. You may find that getting FT4 back into range will make a difference, then you need to find where in range both FT4 and FT3 need to be for you to feel best. Personally I would start with increasing Levo, you may have enough natural conversion for the increase in Levo to raise your FT3 a bit as well. It's a lot of tweaking and takes time unfortunately.
The tingling in lower extremities could be low B12. 434 is still low (GPs know nothing about where nutrient levels should be). I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment." You can check signs of B12 deficiency here b12deficiency.info/signs-an...
And an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
You also need a good B Complex when taking B12 as that will balance all the B Vitamins.
Sublingual and oral sprays are best wherever possibly when you have Hashi's and gut problems as they bypass the stomach.
How are your other nutrient levels at the moment? Vit D, Ferritin, Folate?
I will take your advice & increase Levo first by 25 etc, it does make sense, I think I'm struggling with everything & have a really cloudy head 😴 I appreciate all the advice & links etc & will read back on this all nxt week properly, as I'm camping at the moment & my battery isn't lasting too long plus my network isn't good by the coast... I'm really interested in the info on b12, I have so many symptoms so I'll be looking into this ASAP... Doctor refused a vit D test last time, but my ferritin & folate was within range 6 months ago...
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