Hi all, it’s been a while since I’ve posted and sadly this past year my thyroid health has not been good.
My TSH has remained at 0.01 (range 0.27 - 4.2) despite dose decrease Aug 2017 and Endo wants to decrease again.
Bloods Aug 17:
TSH 0.01
FT4 14.3 (11 - 23)
FT3 4.5 ( 3.1 - 6.8)
Dose decreased from 125mcg T4 to 100mcg and stayed at 25mcg of T3
Bloods Oct 17:
TSH 0.01 (0.27 - 4.5)
FT4 11.7 (11-23)
FT3 4.8 (3.1-6.8)
Endo wants another reduction, this time T3. I have blood test this Friday and speak to Gp Friday week.
Just had email back re suppressed TSH and he apologised but even though we don’t have this week’s blood results he wants to reduce as he can’t recommend treatment that will lead to problems due to suppressed TSH.
My email to him was long, his email back to me longer!!!
Where do I go from here?
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KT304
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“Clear medical evidence that TSH suppression (TSH < 0.04 mIU/L) increases risk of arrhythmia as well as osteoporosis. Cardiac arrhythmias such as atrial fibrillation increase the risk of stroke as time goes on”
They want TSH of 0.1 mIU/L.
I was advised of a dose reduction due to low TSH, I explained I function better with it very low and questioned the evidence of perceived arrhythmia in hypothyroidism, his response was above.
I hope at this point that more organised members will give some links to studies that cast doubt on these statements.
Do you have arrhythmia?
Have you got signs of atrial fibrillation?
Have they done a bone density scan indicating signs of osteoporosis?
All these things are possible with or without suppressed tsh. If they can raise t3 and t4 into the upper part of the range and raise tsh above 0.1 at the same time then great they should write a paper on how they do it.
From your prospective. Do you want to feel well and get on with your life? You arent feeling well with levels you have now. Do you think you will feel better with lower levels of t3 and t4?
If you look at the posts from diogenese they go into great detail about the latest thinking in the endocrinology world and the promlems of trying to get tsh, t3 and t4 into their reference ranges all at the same time.
Many thanks greybeard, I don’t have any signs or symptoms other than being totally under medicated and have not been referred for a bone scan.
I would appreciate any links to studies because I’m sick and tired of battling these (what they perceive themselves to be) omnipotent and yet are in actuality controlling delusional f***wits.
I forgot to mention I’m DIO2 confirmed which he knows yet ignores and 12 years post Radioactive treatment for Graves, which nearly killed me. Now I’m the other end of the scale, facing a non-functioning life with Hashimoto.
This study by a group to which diogenese belongs talks about the broken link between tsh t3 and t4 in people with thyroid disorders. It explains why there is great difficulty in getting all three into their box all at once.
doi.org/10.1371/journal.pon...
I'm sure it will give endo a headache. You will have seen a reply to you from diogenese explaining the shortcomings of your endos stance
Sorry, not so. All the studies in randomized clinical trials supposedly showing suppressed TSH increases the risk of AF and OP are fatally flawed. For OP the risk is 1 extra patient fracture per 1000 patient years (very small even if it exists). With increasing AF, one does not know if suppressed TSH is the cause, because there are so many other possibilities mixed in as the patient panels were not sufficiently examined such possibilities. Lastly, the basic statistical analyses are in ALL trials incorrectly done, so the conclusions are unsound. The same is true for preference for combined T4/T3 therapy over T4 only in RCTs.
I fear arguing on those lines won't cut much ice with such people. Best is to say that there are papers showing a) TSH is unreliable in monitoring therapy b) all 3 parameters TSH,FT4 and FT3 should be used as monitoring tests and c) the primary aim is to get FT3 in the upper part of the reference range (by T4 or T4/T3 combo) and pay most attention to this, and not to TSH or indeed FT4.
Sorry to hear about the difficulties you’re experiencing. I also, always have suppressed TSH and at 0.01 I feel very poorly indeed. For me the T3 and T4 tests are the only useful ones. I don’t think it’s likely that any endo would say anything in an e-mail that could be used against them in future- they have to indicate they are complying with guidelines and acting in the interests of patient according to established medical knowledge. However in my experience they can be very supportive if you ‘do your own thing’ to find a dose that works for you, improves how you feel. I don’t know if this is possible for you to do? If you do go down this route, be careful and make changes gradually, T3 can be tricky to get right. Wish you lots of luck. It is possible to feel well, but probably not possible to get TSH in range. Personally I don’t care about my TSH, I just have to be careful when I come up against medical staff that think it’s important. For me it isn’t. I’m well on T3 Armour combo, but it’s taken a while...
I used to self medicate, just T3 only, but GP was not happy. It was due to them I started in the first place, with TSH round the 4.4 to 4.8 mark and them saying I was "within range". With the help of this board I got private BH bloods, some T3 from Greece (Sadly lady who supplies her website has gone) and monitored myself. I had the DIO2 test which came back as unable to convert fully T4 to T3 and got referred to a private endo. At first all was ok, I was keeping fit, lost 30/35 lbs on paleo diet, running, levels pretty good, but slowly and surely I got sucked into the NHS Endocrinology system, and my health has got worse and worse.
Funny, you saying find your own dose...at my best was T3 only, anywhere between 37.5mcg and 50mcg and that was because I was "jumping" the system with no T4 to convert, just go straight in with T3. My T4 then was negligible and my TSH very low. Best I ever felt. Now I'm locked into this blood test request via NHS for Endo's to look at to decide my dose, have to take T4, am lucky to be given T3 but just feel instead of 44 like I'm 94. I'm losing the will to live/fight/scream!
Whilst I can't advise on your current situation I would love to hear about your T3 experience.
How did you take your doses - split doses ?
I was taking T4 worked initially for a year then it stopped working & Reverse T3 test showed off the scale high levels. So stopped T4 & started T3.
I'm on low dose 25mcg split dose.
Blood test results due next week.
However clearly not on enough T3 as piling on weight ( never had a weight problem). I'm eating plant based gluten free diet from December ( was vegetarian gluten free before that).
Pretty much always in one go before bed, even T4/T3 combo. I started self medicating on ThyroidS but had side effects like zombie feeling, constipation, joint pain so went T3 only and always taken what I needed in one go. If, when I was running frequently, I’d take an extra 6.75 or 12.5 depending on how I felt. (Pill cutter)
Gluten free is tough, but paleo I found easier. My health is further complicated by diverticulosis, at present I can eat nothing and still gain weight.
I think he mentioned something about weight in the email, I’ll go check
He said “ I do understand that you are likely to gain weight when you move from a thyrotoxic state (which is the case when you have TSH suppression) to a state of normal thyroid activity”
I’ve been thyrotoxic.... during Graves....I quite categorically stated I was not thyrotoxic today.
I thought normal thyroid activity meant your weight stabilised...yanno on the correct dose!!!
The killer side effect is the confusion. Not that I have any experience of dementia, but my husband and I joke that I have it. The inability to get words out, remember things short term yet long term is fine. Tiredness, hives, bad skin, itchy scalp, weak nails, joint pain - like deep in the bottom cheek.
I think I have to ride out next week’s blood test and results, let them say what they have to say and start topping up. Will also ask GP to refer me for a dexa scan, if they say I’m at risk then really they should prove it .
I have osteopenia. My DEXA scan was two years after TSH was suppressed. I very much doubt suppressing TSH for 2 years caused low BMD. I think it is far more likely my early menopause before age 42 and severe vitamin D deficiency <10 are why BMD was low.
I will ask my gp if she is willing to refer me for a scan. I’ve been on NHS thyroid meds since Feb 2016, and last year told I’m pre-premenopausal, not anywhere close yet (age 44) After logging into see my B12 results there is bone profile results, will grab in a moment.
As for raising TSH for the Endo I suppose I could go without meds for a while but not something I really want to do! I’ll speak to GP and see what she says. For other health problems re my bowels she has been amazing.
I will cut and paste them Clutter, and see what happens on the 16th at the Doctors. One suspects like you mention below it will be an annual reoccurring conversation!
I've had TSH suppressed <0.01 since 2012. In 2016 different consultant endo (same dept) decided TSH should be less suppressed and 0.05 would be dandy. I had two dose reductions which saw FT4 and FT3 decrease but TSH didn't budge and a third reducation a year later with the same results. Endo wanted to reduce T3 but I refused as I was feeling less well and said I would source on the internet if she reduced my prescription without my agreement. She thinks the suppression increases my risks of heart damage and osteoporosis. I've said I prefer to feel well today even if it means I have adverse health outcomes in the future.
We had the conversation again in 2017 and I expect we'll have it again at my next appointment in the spring.
TSH set point can change and become stuck (See Diogenes posts). I suspect the only way to raise TSH will be to stop taking thyroid meds altogether for 3 or 4 weeks. I've done this twice for RAI and TSH soared beautifully but I'm not prepared to do it to satisfy my endo's wish for TSH 0.05.
I would go in the opposite direction of the GP , Endo , and the dose reduction.
If you had never felt well on any of the lower doses when raising , why would you want to go back there. Old ground does not need revisiting.
Your levels are no where near sufficient , despite the fact that your TSH is showing no correlation to them .
You have two pieces of heavily weighted evidence that say you need more hormone, 2 out of three ain't bad as 'meat loaf 'says . T4 and T3 show a need for an increase but the TSH does not , but TSH is only one piece of evidence that has no real weight whatsoever except in the medical profession's book of spells.
If you have high T4 and T3 High hormone levels, this will have an impact on you , a low TSH on its own will do nothing except keep your own gland from producing , which if you have hash's is what you want in order to reduce the antibodies.
If it were me and I was forced to continue to use levo , with your hormone levels I would be straight back to the 150mcg area , with a view to later going higher than I had ever been before. You want to achieve big things , sometimes you have to go to scary and unknown places .
Of course in reality I would know that this would not be happening with those doctors and endo, so their services would no longer be required.
Its a long journey to recovery , don't need to carry dead weight that holds you back. I would leave the country before going back to levo and the doctors no longer have any input on my condition. I use thyroid -s instead of levo.
I am as free as a bird , to do what I feel is right for me. I was once unable to get out of bed , whole body pain , and the darkest depression that made the whole world empty and meaningless.
Right now I am currently 3 months into touring south east Asia and having a great time in Cambodia.
You know where I would probably be now if I was still with the doctors 3 years on ?
Honest answer - dead .
Corporate criminals and conventional thyroid doctors take hostages.
And I watch her every day, how could I not remember that!
To quote Mr Manilow - We are who we choose to be. Nobody is going to come and save you. You’ve got to save yourself.
I have AF and an under active thyroid. My TSH was 0.02 for a very long time and nobody bothered. Then a locum lowered my Levothyroxine because of heart worries. Has taken me 10 months to get it put back where it was. Saw cardiologist two weeks ago and she advised a low TSH would have no bearing on my AF
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