I know TSH isn't everything, however, I'm puzzled as to how the notes on my file after my NHS TFT last week say "on appropriate medication"!
Just to recap, I had been taking 100mg levo daily for 6 weeks (having reduced from 125mg after being well over range for T4 and having symptoms).
My private results on the 4th Jan were:
TSH - 25.21 (range 0.270 - 4.2)
T3 - 4.0 (range 3.1 - 6.8)
T4 - 23.4 (range 12 - 22)
My results from the GP on the 12th Jan were:
TSH - 18.76 (range 0.270 - 4.2)
T3 - 4.0 (range 3.1 - 6.8)
T4 - 22.1 (range 12 - 22)
Since the day of the GP test (12th Jan) I have dropped my Levo to 75mg daily and introduced 6(ish) mg of T3 for 3 days and now i'm on around 12.5mg daily (for the last 3 days).
I still have body aches etc. so i'm wondering whether to take 3/4 of a 25mg tablet a day and then see how I go.
Prior to my GP blood test, I had passed my private TFT to my DR and asked if she could speak with my Endo and look to trial T3 (I have been consistently well over the range for T4 since RAI with a reasonably low T3).
I just can't believe my results would come back with no changes required when I feel terrible and my TSH is still high!
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Thyroidsam
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Do you always get test done as early as possible in morning before before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?
Which brand of levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
Which vitamin B complex are you currently taking
Did you remember to stop taking this a week before blood test as biotin can falsely affect test results
I take Wocka 25mg tablets (I got my GP to put me on a single brand 6 weeks ago).
Both tests were done at 0830am, without taking any levo before hand etc.
I’ve been taking vit D, folate, magnesium and B12 for around 7 weeks. I didn’t stop taking the B12 as it didn’t list biotin as an ingredient.
When I provided my private test to the GP she was in agreement that my T3 looked low in comparison to my T4. I just can’t believe that my NHS TFT was deemed ok!
My TSH only really jumped up when I feeling so unwell mid November that my Endo stopped my Levo for a week (the headache etc. eased, but all came back after 4 days back on the same dose. He then dropped me to 100mg which I stayed in religiously for over 6 weeks. Prior to joining this forum I’ve been going up and down in levo amounts, seeming to lot tolerate increases very well. Other than a test in July 21, I see to now have the lowest T4 that I’ve had, but I only had a slighter higher T3,level when running over range in T4. My T4 is crept up and it was in Oct 21 that I started to feel the worst I’ve been. It’s now been nearly 3 months of struggling through life! I’m just surprised that they have said I’m on the right dose when my TSH is still high and I feel rubbish!
Hardly surprising that TSH shot up after a week with no Levo
Likely resulted in dramatic drop in vitamin levels
When very hypothyroid we frequently develop low stomach acid, this leads to poor nutrient absorption and low vitamin levels result in poor conversion of Ft4 to Ft3
It can take many months for vitamin levels and stomach acid to return to correct levels
Your early results after RAI suggest you are a poor converter of Ft4 to Ft3
Results from 2015-2018
On no medication
Had you previously had Graves’ disease definitely confirmed by high TSI or Trab antibodies test prior to 2015
Results in May 2019 don’t suggest hyperthyroid…..more typical of autoimmune hypothyroid disease (hashimoto’s).
Were TSI or Trab antibodies tested for Graves’ disease at that point
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid. Ft4 and Ft3 were not high and on Carbimazole you rapidly became hypothyroid (over medicated on too much Carbimazole)
Hey. Yeah I think everything has gone down hill for me since the RAI. I was on block and replace for perhaps 4/5 months after it. Then taking off all medication to see what my thyroid would do (it went underactive), then I started on Levo but was getting awful symptoms with the higher daily doses (which at the time I presumed was from being underactive rather than from the Levo). However, before October 21, anytime I increased my levo dose, I would feel more unwell, get a tender thyroid on one side, very dry mouth, feel sick etc. In October 21 I started to feel that way on 125mg daily. It's an odd one! I'm not aware of ever being diagnosed with Graves, I think it was put down as being viral. I had perhaps 3 years or so where I went back to normal as such 2015-18(ish), although I gradually started to feel worse and then when the tiredness kicked in, I got a blood test and was deemed overactive again.
I also appreciate that all the old test results were at various times of the day etc. and weren't under the strictest of conditions - but it is all I have to go on to see how I used to be pre-RAI. Even when you look at my levels in Sept 21 ( i had taken a couple of weeks of 150mg levo a day prior to the test- which gave me the same symptoms and tender thyroid). But at that point I was complaining to my Endo that I felt hungover with a daily headache etc. The only time I felt well in 2021 was for a week or two between levo dose changes, and the latter part of the year where I stuck to doses for longer periods of time i've felt awful!
Replacement levothyroxine dose is approximately 1.6-1.8 mcg/kg. What would this dose be for you? Are the private and NHS tests using the same lab kit? You should probably repeat your tests using a different test kit provider and do the necessary checks for TSH assay interference. If they can't find a problem with the test itself and since you had normal blood tests before, there are very few explanations for your results such as a TSH secreting adenoma.
At 1.6 mcg/kg it would be about 128. But I’ve been well over range for T4 when on higher doses and still over range when on 100mg a day.. I’m just trying to work out what the equivalents would be in terms of T3 & T4 combo, with my levo at 75mg a day. Test kit wise, the Thriva kit would have been tested in England and my GP test in a lab in Northern Ireland, just a week apart.
Are the reference ranges the same for all the tests? There are a few manufacturers for the reagents that are used for the tests (Abbot, Roche, etc). If there is an interference you may have different results using different reagents. Did Thriva comment on your blood tests? The interference is the simplest reason for your tests results. If it's just a technical problem you don't have any additional health issue.
RAI may not destroy completely your thyroid and also what is left of your thyroid can keep declining for years. Did the endocrinologist say if they were planning to destroy your thyroid or just damage it?
You could just discard the TSH for now and adjust your medication according to the FT4 and FT3. What's the dosage of your T3 pills? Can you manage to split them into 4 equal parts?
HI Annabianca, thanks for the reply. Yes the reference ranges were the same for both the lab in England and the one here in Northern Ireland. Thriva commented to say that I should contact my GP about my TSH level.I would have thought with even lowering my daily levo from 125mg to 100mg, that my TSH wouldn't rise like that (i'd only taken a week of levo mid Nov), so I had a good 6 weeks on 100mg a day.
At the time, I think they told me the percentages of those who would go underactive, those who RAI wouldn't work for and the percent who would return to normal. Other than that, I've not idea what they were trying to do.
I've had two ultrasounds on my thyroid since the RAI, about a year apart with no changes and apparently it is tiny. I was getting thyroid pain on the right side when I went for the second scan and they couldn't see anything.
As my FT4 was still over range, i've dropped that to 75mg a day now and i'm currently taking 1/2 a 25mg Tiromel tablet a day (in the morning). It's been 6 days now (3 days or 1/4 tab and 3 days on 1/2 tab), I initially felt a little better, but I can't say i'm feeling to great at the moment. I was thinking of taking 1/2 tablet in the morning and 1/4 in the afternoon - So around 18mg(ish). I guess with my weight I should be on around 150mg a day of levo only (if I could tolerate my FT4 being high 20's early 30's).
If the reference ranges are the same, it's likely that they are using the same reagents. Your GP should really ask the pathology lab to send samples to a different lab. Assay interference isn't a rare problem. You can't monitor your dose without reliable testing. Do you have any contact with the endocrinology clinic to ask for advice?
The only thing you can rely on is that your dose is under the full replacement dose, which makes unlikely that you are overmedicated.
18mcg of T3 seems a bit high for 75mcg of levothyroxine.
Hey Annabianca, I believe my GP has sent an e-referral to my Endo, however, he is a diabetes specialist rather than thyroid. I have a call with my GP booked for Thurs. I had to wait weeks to get any reply from my Endo (that was also with my wife phoning his secretary daily and me emailing for advice) back in Nov 21. I ended up paying to see him privately where it was more of just a quick chat and then a reduction in levo. Had all my blood tests over the past year or so included FT3, I may have been able to definitely confirm times when I have felt really rubbish being directly related to low ish T3. What is clear though is I’d need to be well over range with my FT4 to be at an average level for FT3. With my T3 at 4.0 at the moment, I feel absolutely terrible! Do you think I should just stick to 1/4 tab twice a day, so 12.5mg for now? I was hoping I’d feel some sort of relief after a week of T3.
It's easier to start at lower dose and increase later if needed than starting too high. But you really need to sort out whatever is happening with your tests.
Well, irrespective of what you were diagnosed with, which remains a mystery, you are now hypothyroid and have had RAI thyroid ablation.
You will therefore have poor conversion and to help you have any form of wellness you'll likely need to look at more then just monotherapy with T4.
No thyroid hormone works well until your core strength vitamins and minerals are maintained at optimal.
So once your vitamins and minerals are built back up to optimum levels you need to consider either a T3/T4 combo or switching to Natural Desiccated Thyroid.
I too had RAI thyroid ablation back in 2005 for Graves Disease becoming very unwell some 8 years on :
I can't add much more to what I've already written on your opening post a month ago :
Once I had built up my core strength vitamins and minerals I self trialled both the above options.
They both worked but I found NDT softer on my body and much easier to dose.
I'm now 4 years into the original thyroid hormone replacement option that was used successfully for over 100 years and on which Big Pharma launched it's independent T3 and T4 compounds and then systematically tried to destroy the credibility of the former well used and tolerated option.
TSH has probably gone high due to stopping Levothyroxine, never a good thing. I stopped my Levo once for about a week. Oh boy what a mistake. My TSH went really high and I felt dreadful. It took some time (weeks) to settle down again after restarting Levo. My trouble was I am a poor converter of Levothyroxine T4 to active T3. My magic bullet was introducing the correct dose of T3 along with Levothyroxine. I mistakenly thought Levothyroxine was making me feel unwell when infact it was my body trying to convert to T3 which it was failing to do that the real issue was. I was only converting 8% of Levothyroxine to active T3. I also did the DIO2 gene test through Regenerus Laboratories which came back positive. It was then I knew I was converting poorly. The NHS wouldn’t trial me on T3 due to costs. I went private as advised on here. My life has changed so much for the better since I went private. I’m now taking liquid Levothyroxine plus T3 medications. I feel full of energy and years younger. The NHS was never going to help me. Thank god I found this site and took their advise to go private.
How long did it take you to find the right T3 level? I’m currently taking around 12(ish)mg of T3 in the morning, but that said, I was moaning to my wife as to how unwell I felt last night before bed. I then went back to waking up at 3ish in the morning, unable to sleep with a pain/sensation in one side of my thyroid. I took my meds around 4, fell back to sleep a bit later and then woke at 8, minus the really ill feeling (and sensation in my thyroid). I’m guessing I’m not getting enough T3 yet….
For me I take my 5mcg of T3 twice a day leaving 8hrs apart. Sometimes if I’m exercising a lot like going the gym regularly I may need to take it 3 times a day to keep my energy levels up. I stopped going the gym due to covid so I reduced to twice a day.
I've actually noticed something (I think already). I'm on day 4 of taking 1/2 25mg T3 tablet a day (7 days in from starting T3). As my post above, I had been taking the half tab first thing in the morning. I felt unwell last night and then woke in the early hours of today unable to sleep, so I took today's half a tablet (around 3ish) and when I woke i felt unwell, but not to the same level as i did. However, by around 12pm today, I was complaining to my wife again about feeling really ill, thyroid hurting etc. I took 1/4 of a tab around 1pm and although I don't feel anywhere need 100%, I don't feel like death that I did a couple of hours ago. I'm wondering if the symptoms i'm getting is my body crying out for T3 and my tender thyroid is due to my body trying to make it work? Today will be the first day that i've taken 18.75mg of T3 - so i'm wondering if i'm currently not taking enough (along side the 75mg of levo - it will be a week now since I dropped to 75mg).
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