My mum is feeling well talking 75mg of thyroxine, when it is reduced to 50mg she feels unwell with palpitations.
These were her most recent blood results:
TSH : 0.05miu/L
Serum Free T3 : 4.6 pmol/L
Serum Free T4 : 28.9pmol/L
What are the normal ranges for these? HerGP has now referred her back to the consultant. He discharged her as he was happy for her to continue on 75mg on the following results last February because she felt well on the following readings:
TSH is 0.30 miu/L, fT4 31.3 pmol/L (12-22), fT3 4.3
pmol/L and Vitamin D 130 nmol/L.
Mum has Atrial Fibrillation and Barrats Oesophagus and is on medication for these as well as taking a statin. She is also taking a vitamin supp, probiotic and T Convert.
Ii just feel we aren't getting anywhere because they keep adjusting her dose up and then down but mum feels well at the moment and doesn't want to reduce to 50mg again and start suffering unpleasant symptoms again. There must be a conversion problem but not sure what this means or what can be done about it. Is it safe for mum to stay on 75mg with these blood readings?
Confused.com!
Thanks for any advice.
Lynn
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Lynny66
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Can you add lab ranges to these results? They vary from lab to lab so we need her specific ranges to interpret her results [you can edit your post with the "more" button on the right]
Having said that, TSH is low - but so what? [except that so often it's all doctors will look at and they freak when it gets to the bottom or below the ref range] And free T4 is high - possibly above range.
So if it is above range but free T3 is sayhalf way through the range, that would suggest a conversion problem, And that will get worse if her levo is reduced.
She is only over-medicated if free T3 is over-range - so either stay on the levo at a dose that suits her - or ask the endo for a trial of lio.
Serum free T4 level 28.9pmol/L ( 7.70 - 20.60pmol/L) However her consultant was happy to leave her when it was 31 back in February because she was feeling well and if her thyroxine is reduced she shows symptoms.
Her T3 is normal 4.6pmol/L (4.20 - 6.90pmol/L)
However the TSH is supressed at 0.05mIU/L ( 0.30 - 4.80mIU/L)
The GP seems to think she needs to be referred back to the consultant because the TSH is supressed and not good for her Atrial Fibrillation which she is on medication for. GP also mentioned osteoporosis worry at 79 years on this dose.
We are talking to the consultant again tomorrow. I just wanted to understand about TSH. How can we raise this without reducing thyroxine? I understand because the dose is high her body isn't making TSH- is that correct?
It was suggested she could have a conversion problem.
Can you explain a trial of lio, what problems are incurred with this and would Thyroxine be stopped altogether?
Mum feels well and is getting anxious that they may reduce her thyroxine again and start the circle of events. How dangerous is a supressed TSH level ?
Low TSH and over-range free T4 and free T3 are a real problem if you are NOT on thyroid meds. Once you are on thyroid meds, the position is very different - but the subtlety here seems to elude most GPs
When you are on thyroid meds, low TSH is not a problem at all; there is no increased risk of osteoporosis; many of us have a very low TSH for decades with no issues. Mine is lower than your mum's and I'm not at all worried ...
I think diogenes [who is a proper scientist doing thyroid research, not an interested amateur like the rest of us] has either posted or replied to other people about this, so click on his name and look and his posts and replies for more detail here]
But adding the ranges just shows how very badly your mum converts - her free T3 is a feeble 14.8% through range when her free T4 is quite a lot over range.
A lio trial would involve a small reduction of levo and - usually - building up slowly on lio, best to do 1/4 tablet at a time, increasing every week or so, until you are on a whole tablet, hold for 6 weeks and re-test. Reduce levo and/or increase lio as necessary until both "frees" are in the top third of range and she feels well. Go really slowly with dose changes until she finds her sweet spot. It may take a while. Very rare to stop levo completely.
Advantages: for me, it's been transformative - I feel completely well, have all my old energy back, go for a 5 mile walk along the sea-front every morning; weigh what I did more than 15 years ago before diagnosis (and before menopause). I was taken off it for a miserable fortnight earlier in the year [see the post I did then] so can vouch for the complete change back to being me again being quick and wholly attributable to lio.
Disadvantages: it's not a magic pill and some people don't get on with it. This can be a particular problem because it takes so much effort to get it on the NHS and they see people like me saying how fab it is, so it's a double blow. It can be too strong for people - even on 1/4 tablet they get palpitations and fast heart beat. But you won't know unless you try.
Also - cost, It's very expensive - particularly compared with other European countries, following one of the scandalous price hikes you may have read about when the price went up several thousand per cent - although the cost is now dropping. But it's still much more than levo.
Also, it has a very short half-life, so is difficult to measure, so a lot of endos don't like it. There have been no clinical trials, as far as I'm aware, on how it affects people, so the endos who don't like it will use that to say it does no good - and the thousands of us who disagree are just "anecdotal" not "research" [you don't need to be a genius to work out that if you never test something clinically you will never get clinical results either way]
Also, it reduces TSH - it's just what happens. Arguably if your mum has very low TSH anyway she can hardly get much worse - so there may be nothing to lose there.
If your endo is willing to give it to her, I'd grab the chance with both hands. She could (should?) have a dexa bone scan beforehand so she can know definitively if there is any change in bone density after starting lio to put her mind at rest on the osteo issue.
Hi Lynny , you may find this post and the LINKS in my reply to it interesting re. risks of low TSH on Levothyroxine (, which basically don't start until TSH is below 0.04 and are still relatively small even then .)
Also...a recent study shows there is a small increased risk of AF when FT4 is over range, it was posted here a couple of day's ago. And so it might be less 'risk' if your mum lowered t4 a little and took some t3 alongside( which is what the trial of T3 would achieve), doing this is highly unlikely to raise TSH though and may well lower it a bit further. Getting to the right dose could be difficult and time consuming. If she already feels good on Levo as she is even though FT4 is over , and TSH is lower than they would like , it may be a difficult decision whether to mess with things to try T3 , or leave well alone and insist on keeping Levo dose that she feels well on.
I have TSH0.05 ish and very over range Ft4, (i'm on Levo only) and have decided i'm ok with these 'risks , but i'm 54 and don't have heart issues , we have to make our own minds up about risk vs quality of life, but the point is Dr's should involve us in this decision, like they would for any other medical treatment.
Many thanks for your reply. Mum already has AF and is on medication for this. Her thyroid issues started when she was in her early 50's too and I often wonder if the AF that happened later was the cause of this however I have no idea what her levels were then. I expect it had something to do with it. She is 79 now.
I know she is keen to stay on her 75mg dose because if they reduce it she will show symptoms again. I think she is anxious of taking anything new, with all the trial & error that goes with it. She feels well now on this dose but I guess it depends on the long term safety of being overt range FT4. We'll see what the endo has to say tomorrow about it. Thank you.
There are no normal ranges. You have to use the range that comes with the result as ranges vary from lab to lab.
FT4 looks high, higher than any range we've every seen on the forum, so that would indicate that she's taking too much Levo. However, I would guess that her FT3 is possibly lowish in it's range, so that may mean she is not converting T4 to T3 very well. T4 is a storage hormone and it has to convert to T3 which is the active hormone that every cell in the body needs. So you can see how important it is to have the ranges that come with the results so that we can accurately interpret them, we can't guess when it comes to ranges.
He discharged her as he was happy for her to continue on 75mg on the following results last February because she felt well on the following readings:
TSH is 0.30 miu/L, fT4 31.3 pmol/L (12-22), fT3 4.3pmol/L
I am amazed that her consultant did not freak out at that FT4 result. 99.9% of them would.
Without the FT3 range it's hard to say, but I imagine she does have a conversion problem and what she needs is less Levo to bring her FT4 back into range, which will also lower her FT3, and the addition of T3.
But one thing that is very important - when did she take her last dose of Levo before both of these tests?
She is also taking a vitamin supp
What is this supplement?
Statins aren't agood idea for females. If humanbean is around she will pass on some information, I'm afraid I don't have the details saved.
I agree 😢 I was diagnosed last August with TSH of 32. And can’t take levo of any kind because of really bad symptoms, so stopped them and my doctor has refused anything else. But turned it on me by saying I’m refusing to take it. I have been left with nothing at all. They haven’t even contacted me since.
Never been a good doctors and have n choice to change gp.
I cannot afford private prescription, so basically left with nothing and I’m not that well at all.
I’ve been reading and found helpful the following: The Starch solution by John McDougall and Thyroid Healing by Anthony Williams to Help with my immune system. Good luck
You have to do your best to find another doctor who will listen to you.
Ask to be referred to an Endocrinologist as your GP is another who has no idea how having insufficient thyroid hormones in our body can affect us.
You have to have replacement thyroid hormones. Ask to be referred to an Endocrinologist at your local hospital as our body cannot funcion without T3 - should convert from T4 levothyroxine into T3.
T4 (levothyroxine) is an inactive hormone and has to convert to T3 (liothyronine) the Active Thyroid Hormone needed in the millions of T3 receptor cells which enables our body to function as normal and brain and heart have the most T3 receptor cells.
The fact that few doctors appear to know anything to do with the thyroid gland in this modern era, except to prescribe levothyroxine we might have a struggle.
Before blood tests were introduced we were diagnosed upon our clinical symptoms alone and prescribed NDT (natural dessicated thyroid hormones) (now withdrawn in the UK due to 'False' Statements being made about it by medical professionals who we'd imagine would be/should be more knowledgeable about it) - NDT being the very first life-saver for people who were hypothyroid and was prescribed from 1892 onwards until its complete withdrawal in the UK a few months ago.
If you find levothyroxine (T4) intolerable, ask to be referred to an endocrinologist for a trial of T3 (liothyronine). They are the only people who can prescribe T3 (this is because T3 increased by a huge amount of money that the 'powers that be' decided to withdraw it). That is the great excuse that they were waiting for as more and more were requesting a trial of T3/T4, or T3 alone and scientists have proven that patients who weren't improving on levo (T4) did with a combination or T3 alone.
Thanks for the advice but I know from the thyroid trust site that Lancashire isn’t on the new ccg list as yet for T3 in my area. But they are fighting for more areas. So they don’t think I’d get it from Endos either.
Just stay on 75mg, the thyroid is very complex, if she still has her thyroid, she is producing thyroxine, so getting the dose right on a daily basis is very difficult. Don't worry about it and don't get fixated on results of blood tests because they will vary from day to day. In my opinion it's how you feel not what your bloods say. I am unable to take thyroxine it does nothing for me, I am on liothyrine t3, and as long as I feel OK in myself I am happy. Hope this helps😃
I note your Mother is also on statins! I am assuming this is because her cholesterol level showed 'high' thus the prescribing of statins.
The fact is, and on this forum we are aware of how badly doctors are trained about anything to do with a dysfunctional thyroid gland, when we have thyroid hormone replacements the cholesterol level should reduce without statins. A higher cholesterol level is a 'clinical symptom'.
It is as if we - the patients- have to become knowledgeable in order to feel much better - as the majority of medical personnel are ignorant except to prescribe levo. The following is an excerpt:
"This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid".
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