Coooey hiii everyone it’s me again. Here’s a copy of my bloods done yesterday. Bare in mind I upped my levyo dose to 100 about 4 weeks ago. I feel much better in myself not on the floor like I was. The doc says I’m too high and to take 100/75 on alternate days, again, which is 87mcg. Iv tried that I told him and I was cold, depressed and constipated. He agreed I look much better. But has to advise me to lower my dose. My endo will tell me the same thing. I said well if feeling like this is so bad for me. I’d rather die like this, than die depressed and on the floor. He agreed but just kept saying I have to advise you that going by your blood test results you need to lower dose. You know the hormone guy told me when discussing taking my thyroid out. Oh we can monitor you much better without a thyroid than with. Yeahhh right. I don’t want to lower again as I fear I’ll commit suicide if I feel so low as I did again. Am I risking my health sticking on the 100mcg??
Blood results : Coooey hiii everyone it’s me... - Thyroid UK
Blood results
Before blood tests and levothyroxine were introduced we were given NDT. No tests then and we took doses until symptoms were relieved. Some took doses between 200 and 400mcg and they didn't drop dead.
The TSH is from the pituitary gland and rises when we begin to have a failing thyroid gland. The links within the following is from one of our TUK Advisers:-
healthunlocked.com/thyroidu...
Your FT4 is higher than I’d expect for someone without a thyroid on 100mcg levo (it’s not a particularly high dose). And as your FT3 *isn’t* at the top of its range, it made me wonder - how long after taking your levo dose did you you have those blood tests taken?
I didn’t take my levythroxine until after the blood test
That’s interesting. 
Well, I must admit, I’d be minded to stay on a dose that made me feel better as well. But you may well struggle to keep your doctors on board with that (as you’ve already found).
Before the “invention” of TSH monitoring though, it never used to be an issue. People were dosed on the amount of levo that made them feel better...
Do you think I should lower my dose slightly then?
No - because I can see from previous posts that 87.5mcg wasn’t enough! And also that a few months ago you were on more than 100mcg. I think it’s quite likely that the next time you’re tested on 100mcg that the FT4 level will be lower. Nothing to back that up with, just a guess. Your levels keep fluctuating, don’t they?
It’s a bit of a puzzle as to why your levels are fluctuating so much given you’re thyroidless. Are you consistent with taking it (every day, same sort of time, away from food and other meds/vitamins etc).
Yes I take it every morning at least 3 hours away from food and , and wait 2 hours to take my co-drydamol. I was self teetering my dose for a bit as I felt so unwell. So despite what they say I’m going to stick with the 100, and as u say wait at least 3 months and see what results that shows. Also is it true do u know if I go abroad somewhere hot I have to lower my dose?
Well, I’ve never changed my dose when I’ve gone on holiday to warm places. I think there’s probably something in needing *slightly* less in the warmer months, but for a week or two away I certainly wouldn’t mess with it (coming home from holiday is bad enough without suffering the after effects of lowering my dose. The dose decrease wouldn’t kick in until you got home in most cases - assuming 1-2 weeks in the sun.
I think a good plan is to change nothing unless you have to. While on T3 I sometimes had to reduce in hot weather, but once it is properly stable there’s no need.
You feel well now, you didn’t feel well on the slightly lower dose. Why risk your health again based on one test. Give it a while and have a second test on the same dose. You may be amazed how much the test results fluctuate on the same dose! And GPs can’t explain that fluctuation - they never tell you about the confidence interval/ error margin of the test - and they don’t accept that taking a dose on the day of the test makes a difference, and it certainly does
I remember telling a GP 20 years ago that I wasn’t going to take a lower dose just so I’d live longer while feeling dreadful. I’m still healthy, fingers crossed. (Now on T3 and NDT , total thyroxine equivalent of 275). I think they need to record in the notes that they’ve advised, you’ve decided etc. It’s just the compensation culture, and they’re following the protocol.
Be confident in your own judgement, it’s the only definite thing in all of this.
TSH: <0.02
FT4: 29.4 (11-23) = 153% of range
FT3: 4.7 (3.9-6.8) = 27% through range
Are both your doctor and endo blind I wonder?
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in balance in the upper part of their respective reference ranges when on Levo. Your FT4 needs to come down and your FT3 needs to go up.
You are not converting T4 to T3 well enough as can be seen by your FT4 and FT3 results, also good conversion takes place when the FT4:FT3 ratio is 4:1 or 3:1, yours is 29.4 / 4.7 = 6.25 : 1
What you actually need is a reduction in Levo and the addition of T3. Whether your endo will agree to prescribe T3 is another thing.
Morning Suzie I go on holiday to Spain on the 14th April. Do you think i should reduce as they ask or stay on a 100? I have been feeling much better in mood lately but still getting v tired. Nails and hair seem to be improving I think. Iv just took my 100 so too late for today to reduce
I think you are going to be tired because of your low FT3, that will be causing problems and I don't think things will get better for you until you have some T3 added to your Levo.
By the way your B12, Folate and Vit D are fine. You are missing Ferritin and you need that tested. As Heloise says it needs to be at least 70 for thyroid hormone to work.
I can't advise you what to do about your dose and going on holiday, but if it was me then I wouldn't reduce now and risk spoiling my holiday.
Thanks susie I don’t know what I’d do without u guys 🙏🏽🌈💕
Thank u so much for that Suzie. I’ll see what they say eh!!??
Yes to what Seaside Susie says. For some reason you are not converting your levo (T4) to FT3. Two things necessary for that is a balanced cortisol level and a ferritin level of about 70. I'm not sure what is happening to your excess levo. Sometimes it turns into reverse T3 which it always does to a certain extent but if a lot of it is reverse you will feel badly. Have you had a ferritin test at any time? Find out if it is high enough.
stopthethyroidmadness.com/l...
Hi thanks do you think I should stay on a 100 then or reduce to 87.5 like they ask?
Stay on what makes you feel well. I realize you are new here but after five years I've seen such ignorant medical treatments and usually have to go against it even if it means supplying yourself. They are also obstinate about allowing the use of NDT which was used 100 years ago and/or T3 which has been a lifesaver for many.
Thanks Heloise I don’t see my endo till June and yes my doctor tho nice is clueless. I go Spain next week and I’m nervous as never been away thyroidless before and been prone to stress and anxiety tho iv calmed myself down a lot just lately. Any advice on a sun holiday in my current circumstances. I’d rather not go but as my bf paid n booked iv no choice
Do you have enough Levo to last? hmmm I'm trying to remember if you can get thyroid hormone there. I think a vacation might be lovely if you can pace yourself and relax. I don't think you are on a high enough dose to give you loads of energy possibly. Hard to tell though. Can you eat well while away? Have you tried avoiding gluten at all?
I see you are on a painkiller.
Yes co-dryadamol 20mg morning 20mg Evening. Why??
Yes I think iv enough Levo. Iv more energy on a 100, i was literally on the floor on the 87.5 I was planning my funeral, kept thinking I’m going to die. At least now my mood is elevated. I had a lovely reiki attunement yesterday so hoping that good energy lasts through my holiday i will pace myself on holiday and have lots of massage to relax. Also best stay away from alcohol as that can raise cortisol can’t it. Yes I been eating quite healthily don’t eat a lot of gluten. Been having fresh orange juice everyday for the vitamin c. Just read should avoid that if cortisol levels are high which I defo think mine have been as was getting so stressed and anxious all the time
I am leaving now but may add more later.
Ok thanks for your help and advice
That sounds like a plan. I read some of your posts. The dose of levo really doesn't depend on height or weight but your results are strange. I don't understand why you would have that high level of T4. Your T3 is too low. How would you feel about adding some T3 to your Levo or trying and NDT which contains both?
I think it might be because iv been getting so stressed. Oh also I was having yakobee drink twice a day for protein as my muscles seem to be wasting away. Iv since learnt contains soy so to stay off it which i have maybe that impacted. Surely if I lower my dose my T3 will go even lower. Yes I would defo try T3 and or NDT but how my GP or endo won’t prescribe them will they
Get your Vit D, B12, folate and ferritin checked. I had similar results to you and got the Fab Four optimal and reversed my conversion issue. It took me 5 months but that is dependent on how low you are. I don't have antibodies but this worked for me plus it has other good points, it helps your thyroid work better and it can get rid of symptoms caused by these being low.
Hi thanks for that Look further down tho I think they checked for all them
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