Just been told to lower my levo once again, this has been an on-going saga however for many years now, as I have for many years had suppressed TSH. And because my latest blood test shows my TSH still suppressed at <0.05 and my FT4 at 24.something, ref range up to 22, so just slightly higher than should be, so my Dr wants me to lower the levo. However, I am loath to lower my levo because of other under active symptoms I am still experiencing, such as weight gain and can't lose any and if I do, its a miserly pound and then I put two back on the following week, (even though I am a very active person) tiredness, can barely stay awake after 8 pm at night. However my Dr (who is lovely and very understanding) is concerned about other things by me having a suppressed TSH, such as osteoporosis and I believe heart conditions? She only mentioned osteoporosis. I have been on 150mcg of levo and I have agreed to go on 125/150mcg alternate days, which we both agreed probably wasn't going to lower my TSH enough anyway 😑
My Dr said also that I could be suffering from Sleep Apnea and that could be why I am so tired during the day and fall asleep before actually making it to bed at night, she got me to fill in a questionnaire, can't remember the name of it, but I scored high enough to be told to see my doctor, as something wasn't right. However, I am not overweight. Whilst I am in fact carrying a whole stone more than I should really be, I am not the typical stereotype for sleep apnea.
However the good news is I am being referred to see another endo, who 'may' try me on T3/T4 combo as the one I had been seeing for 2 years was at a loss to getting me on a dose of just levo that suited me and in no way wanted to try me on T3.
Not sure why I have posted this here, other than to have a moan 😊
Thanks for listening to me moan 😃
JillO
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JillOliver
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JillOliver - I could have written a fair bit of your post!
Hypo (treated) for donkeys years. Always suppressed TSH. Residual symptoms. Increases in Levo that took my FT4 over range, as high as 30 (12-24) at one point. Still symptomatic. That GP who allowed the dose increases and high FT4, but never looked into why I still had symptoms, left. New GP totally freaked at suppressed TSH despite me lowering the dose of Levo and FT4 now in range (near the top) and FT3 in range. Just kept quoting 'overmedicated' to me.
I had to take things into my own hands because I wasn't going to get any help. I committed to spending what it takes to find answers.
Private testing showed severe Vit D Dr, very low ferritin, very low folate and, surprisingly, a decent level of B12, virtually non existent sex hormones and top of range cortisol with under range DHEA. On top of that I wasn't converting T4 to T3 well enough.
With guidance from here, I optimised all vitamins and minerals, am addressing the adrenal and sex hormones and I now add T3 to my prescribed Levo.
I'm not there yet, still tweaking meds, but in a much better place than I was.
I would start looking at other things and start by asking for the following to be tested
Vit D
B12
Folate
Ferritin
If these aren't optimal ( which is different from just 'in range') then thyroid hormone can't work. The problem is that doctors don't know this.
You also need FT3 tested as well as TSH and FT4, but this is rarely done on the NHS unless there is something drastically wrong with the other two.
You can, if you wish, get your own private test done to include all these, plus thyroid antibodies, with a fingerprick blood test with Blue Horizon Thyroid Check Plus Eleven or Medichecks Thyroid Check Ultravit.
Thanks for the reply! I have just frightened the living daylights out of myself Googling symptoms of osteoporosis! I have some, I am sure of it! 👀
I take a multitude of vitamins and minerals, inc. Vit D, B-Complex, Liquid B12, chromium, zinc, flaxseed, anti-oxidants and a couple of others. My ferritin has been as low as 48 before, a few years ago, and so I took an iron supplement and felt much less sleepy and achy. But I think you are right, I will invest in a private blood test now getting everything you have listed tested!
Soooo fed up of the same old same old, your TSH is suppressed, your FT4 is too high! Aghrrrrrr! 😑 then why do I not feel full of energy and why am I falling asleep on a washing line and what's going on with my weight!
Osteoporosis and heart are ways of scaring us into submission by taking less hormones than we need, which may well give us other more serious problems in the future. A link by Dr Lowe who was an Adviser to Thyroiduk.org.uk before his untimely death. Read the introduction and then the pages below.
Thanks Shaws! An interesting read! And I take the majority of supps listed and also exercise vigorously, mixture of weight training and endurance, plus some HIIT (tiredness and lethargy permitting 😑) have done all my life without too many breaks (as in stopping, not broken bones 😊) So hopefully my bones are as strong as they can be.
Will look at getting private blood test done now as suggested by SeasideSusie and hope I don't have sleep apnea!
Jill - As I was trying to understand why I was so unwell on such a high dose of Levo (200mcg at one point), after addressing all the deficiencies and low levels, the more research I did the more I discovered (obviously 😆 ).
I'm not saying this is relevant to you but it seemed to fit my situation. All that Levo I was taking wasn't making me feel any better despite a stupidly high FT4 and an in range FT3. I read about reverse T3 and it made sense. The high FT4 wasn't improving my FT3 so was very likely making rT3 instead. Unfortunately to test for rT3 you need a venous blood draw which I couldn't get done at the time (NHS don't do it). So, 12 months after supplementing and adding T3 I had the opportunity to test rT3 when Blue Horizon introduced their home phlebotomy service. The result showed my rT3 very close to the top of the range - 22 (10-24). The way to reduce high rT3 is to lower Levo and add T3 which, of course, I had been doing for 12 months. Logic tells me that if my rT3 was that high after 12 months of using T3, then it was probably a fair way over range to start with. If I had known that at the beginning then I would have tweaked my meds differently and my rT3 would be a lot lower at this stage.
I am now waiting to repeat testing my rT3 to see where to go from here with my meds.
So, if you wanted to check your rT3 then the tests to go for are Blue Horizon Thyroid Check Plus Twelve or Medichecks Thyroid Check Ultravit plus rT3. They cost a fair bit more but you can decide if you think it's necessary, and you do need a venous blood draw, it can't be done with a fingerprick test.
rT3 info I came across and saved that you might want to check out:
Wow! Thanks very much SeasideSusie, I have always known about reverse T3 but didn't where to start! I'll have a good read of the links So with the reverse T3 test, do they send you everything you need and then you have to get your blood drawn by a nurse? I'm sure I did that with another test I had done many years ago and the nurse was fine about it
Just re-read your message "you do need a venous blood draw, it can't be done with a fingerprick test" That's for both the Blue Horizon Thyroid Check Plus Twelve or Medichecks Thyroid Check Ultravit plus rT3 - got it!
That's right. It's a shame it can't be done with a fingerprick test or I could have had it tested at the very beginning. My surgery won't oblige and the hospital (which is between 1.5 - 2 hours drive depending on the traffic on our country roads here in Wales) won't do blood draws for private tests unless a GP requests it. I offered to pay but still needed a doctor's letter.
I can only say for sure with BH home phlebotomy service, although I imagine it's the same whichever method you use for venous blood draw. Everything needed is in the kit. The nurse who came to do mine preferred to use her own 'butterfly' needle thingy (note very technical term 😁) rather than what was sent. I can't say for Medichecks.
Medichecks have their thyroid thursday offers on today and one of them includes rt3 and all the essential vits also ft3 I have deleted the email unfortunately but remember it was £20 off Offer is on til midnight.
My GP started muttering about dropping levo when my TSH was 0.05 and FT4 was 23.3 (12-22). I pointed out that research had shown that it was being hyper that increased risk of heart and osteoporosis not low TSH or slightly above FT4 Fortunately I had done a medichecks inc FT3 on the same day as my nhs test and it showed my FT3 was only midrange and i had no hyper type symptoms so she agreed my levo could stay at 125 and trusted me to come back if i developed any hyper type symptoms. But then my GP has a clue🤔
Oh wow!! Thank you very much Phoenix605! You are a star!! My blood test results don't add up to how I am actually feeling. So I have similar results to you then! 😊👍
I have a private blood test now from Blue Horizons, waiting for nurse to come to mine in a few weeks and draw my blood. Should I stop taking all my supplements in the meantime in preparation for the rest or carry on taking them? Currently taking B-Complex, D3, flaxseed oil, anti-oxidants, chromium, liquid B12, zinc, think that's it 😄
Ask Louise.Roberts@thyroiduk.org.uk for a copy of the Pulse article that explains that some people need over range FT4 and suppressed TSH in order to feel well. Pulse in the doctors'own magazine so your GP should take some notice of that.
Finally found my myth debunking reasearch link from University of Dundee again!! try waving this under the nose of your GP when they start muttering about osteo and heart risk😈😈😈, I admit I dont get all the ratio bit but the Main Outcome Measures and Conclusion paragraphs should be easily understood even by GPs 😁 it gave me the confidence to challenge the mutterings and didnt even have to show it in the end. According to this we have LOW TSH not suppressed anyway.
PS We really are alike, Teva and Wockhard are BAAD juju, my joints and tendons are still recovering. Oh and sleep apnoea, good job Im single, my mother says I sound like a dying warthog at night😜 mine is definately weight related, so get the levo right, lose some weight🤞🤞(ok a shed load) and bobs your uncle. I didnt get rid of the lingering fatigue etc until I sorted my terrible B12 and vit D levels
Hi Jill, apols for the delay, I am in spain and they are having mobile data issues so not been getting any messages, I have replied out of sequence to your supplement question as the column got too narrow to write in! I am not sure with most of them as I havent been retested yet since starting proper supplementation. I do know that biotin can skew results so you should stop taking it a few days before the test and you could leave it a week to be safe. It might be worth starting a new question as someone might well have a better idea with the others.
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