Hello everyone,First a brief history.I am with Graves since 2018 and had a total thyroidectomy June 2022.Everything Ok.Went to GP with unrelated problem and she did bloods just to check.Feb Gp bloods:
TSH 10.38(0.38-5.5)
T4. 19(10-18.7)
She referred me straight back to endo.
I did private bloods:
TSH 15.9(0.27-4.2)
FT4 17.4(12-22)
FT3. 2.9(3.1-6.8)
My Gp bloods were about midday and my private ones about 10am.I took my levo around 2-3am that day both times for comparison.
I was taking 100mcg/5days and 50mcg/2 days.
The endo rang me 27th Feb and told me to increase levo to 100mcg every day which I did.
I did private bloods 6 weeks later:
TSH. 9.22(0.27-4.2)
FT3. 2.6(3.1-6.8)
FT4. 20.6(12-22)
He rang me when I wasn't at home so he caught me on the hop.I didn't ask for his results but he said there was still a little room for improvement so to increase to 125mcg per day.
I think now he had only done TSH.
After 6 weeks I did my own bloods again.
TSH 0.17(0.27-4.2)
FT4 33.5(12-22)
FT3 4(3.1-6.8)
I am still waiting for endo to contact me after 2 calls taken by answer machine.It will be 5 weeks next Tues since I did hospital bloods.
Of course when I got my private bloods back I put myself back down to 100mcg/day.
I had all symptoms of overmedication,sweating, frequent bowel movements,twitches and restlessness and insomnia.
Did start taking 125mcg every other day for about a week but still feel overmedicated.
Should I ask GP to refer me to someone else?I have the list somewhere and I think an endo near me on NHS is T3 sympathetic.Do you think that is what I need to try?I did full Monty bloods and was low in only vitamin D which I am supplementing now.Can I do anything else to aid conversion?I do take amitriptyline and propranolol for migraine but couldn't bear to think about stopping them.Sorry for the long winded post,any ideas would be gratefully received.All bloods both private and hospital I took my levo that day in the middle of the night for comparison really.
By the way I don't feel too bad,could I continue feeling OK with an under-range Ft3 or will I just crash and burn eventually.?
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I took my levo that day in the middle of the night for comparison really.
So for each test how many hours before the blood draw did you take your Levo?
Can you post your results for vitamins, as just being in range is not good enough.
If your FT3 is very low then it can feel very much like you are over medicated when in fact its just the effects of low FT3.
Long term low FT3 can lead to all sorts of health issues so better to get it raised if possible. OPTIMAL vitamin levels will help but you may or may not need added T3.
Propranalol will reduce T4 to T3 conversion. Is there an alernative you could explore?
Hello there, thankyou for your quick reply.It would have been around 9 hours for the hospital/GP bloods and around 7 hours for my private bloods.I usually take my levo when I go to the toilet around 2/3am so it is well away from food and my amitriptyline I take around 9.30/10pm.I'll look out my vitamins and post.I did think about asking my GP if another beta blocker would work but I am a bit nervous about changing something which is working brilliantly regarding my migraines.I could try a phone consultation to enquire.I do have a sort of internal shaking but did attribute it to my graves.I have heard many times on this forum though that over/under active symptoms can feel very similar so you could be right on that score.I'll look out those vitamin levels and post them for checking.Thanks again.
I would recommend taking your last Levo dose 24 hours before your blood test time. Your FT4 is high because you are measuring what you have just taken and not the stable hormone levels. It's just for one day.
Jaydee1507 have you made a mistake in this last response? It reads like you advise the OP to take her Levo right before the test rather than 24hrs before the test.
Hi Jaydee,So you think I have a little room for increasing my levo ?Because I took my levo before the test it is showing a higher level than it actually is.I didn't think it would make that much difference .But the way you explain it ,I am not measuring the stable levels in my blood.Yes I can see that now.I do think 125mg per day was too high.Having had an overactive thyroid for a long time I did recognize the signs.Maybe half that dose?Then retest.?I found my vitamin results:
17/4/2023
Ferritin 84ug/L(30-150)
Folate-serum. >45(8.83-60.8)
Vitamin b12 active. >150(37.5-188)
Vitamin D 57(50-250)
I was advised to supplement Vitamin D .I take vit D +K2 4000iu.
I also take high strength vit C and selenium and zinc.I am trying to find a magnesium which doesn't upset my stomach.
I didn't say you had room for an increase of Levo, just that your results showing over range would have looked quite different had you spaced your last levo 24 hours before the test. You would need to retest with that dose timing to know exactly where your stable blood levels are.
Your ferritin could be a tiny bit higher. For best use of thyroid hormone ferritin should be 90-100. Keep up eating the red meat, pate, chicken livers.
For magnesium you could try a topical 'oil' spray. Also good as it avoids the stomach and absorption issues with other meds etc
Hello Jaydee, I have gone back to my previous dose of 100mcg levo per day until I hear from my endo.I can see that I don't know my correct Ft4 until I have been on the same dose for 6 weeks and use the protocol advised on here for blood tests.I can then make a more accurate judgment. I don't really eat much meat only chicken really but I'll try with beef to help my Ferritin levels.I've heard of magnesium flakes for the bath but as we don't have one I've had to discount them.I'll check out the oil,it may be just the right thing for me Thankyou.
healthunlocked.com/thyroidu... post discusses recent scientific findings that appear to show that high ft4 levels when on t4 only can increase the possibility of developing cancer
I would definitely ask for a t3 trial so that you can reduce ft4 by decreasing your levo and increase ft3 by introducing t3 liothyronine.
Hello Lalaloot,thankyou for your reply.I have heard a little about this so I will definitely read the article.When my endo finally gets back to me(I'll ring again tomorrow)I'll ask him for a trial.I know he only tested TSH because I asked blood nurse.He won't have any idea what my FT4 or FT3 is.He does listen though when I say I have private blood results.Fingers crossed.
Thankyou DippyDame for the very detailed reply.It is what I thought myself actually but I was hoping not to have to go down the T3 route with all it's difficulties.I will also my endo for a trial on the NHS and hopefully I will be one of the lucky ones.If not I am now in a position to take the private route if necessary as long as the cost is not too extortionate.I know T3 prices have come down alot.I will access this wonderful forum if I need help.Is there a nice guideline to quote to my endo in support of my T3 request?It might help my case.Thanks again.
The fact the your FT3 is so much lower than the FT4 should be proof enough to a knowledgeable endo that conversion is poor!
It is utterly rediculous that T3 is treated with such disdain by medics....if used correctly it is no more dangerous than many prescribed medications....probably less so!
But T3 must be respected it is a powerful hormone
I need high dose T3-only to function and, like others here, have had to both self diagnose and self medicate with T3.
1.3.4Do not routinely offer liothyronine for primary hypothyroidism, either alone or in combination with levothyroxine, because there is not enough evidence that it offers benefits over levothyroxine monotherapy, and its long-term adverse effects are uncertain.
Common Variation in the DIO2 Gene Predicts Baseline Psychological Well-Being and Response to Combination Thyroxine Plus Triiodothyronine Therapy in Hypothyroid Patients
Vijay Panicker, Ponnusamy Saravanan, Bijay Vaidya, Jonathan Evans, Andrew T. Hattersley, Timothy M. Frayling, Colin M. Dayan
Thankyou for all the info.Some light reading for me.I just want to get it all straight in my head for when I ask the endo.I think I'll write it down as points then carry it with me so I have it to hand.The trouble is you don't know when he will ring you.I think I was at someone's house last time and it's a bit awkward when they catch you on the hop.Do you think it's worth testing myself for the gene?and is it expensive or should I not bother?
I always used to write a list of points I wanted to make and Qs I wanted to ask....stopped me squawking like a demented parrot!!!
I would try an endo first for T3 if that fails then consider a Dio2 test...it shouldn't be necessary !!
I inherited the snp from both parents.....but my thyroid journey turned out to be more complex which is why I was left with only the option to learn and take control
Yes it is,that's very true.I've found the list of TUK recommended endos so I've got that in my back pocket too.I'll try my own endo first then take it from there.
Thankyou,I've just had a quick scan through and it just seems common sense to me.The more information you have the better chance of a successful outcome.Surely anyone would want to get as much information as possible ie looking at TSH,T4,andT3 in conjuction with each other to decide on the best treatment.It was also interesting how thyroidectomy was seen to change the relationship between the 3 hormones.That also could be expected as well.Thanks for your good wishes
I felt dreadful when my FT4 was over range and benefitted hugely from a small amount of Liothyronine in addition to Levo, to get FT3 higher in the range/ address conversion issues.
I would do some research on finding an endo in your area who is supportive of combination treatment. Perhaps start a new post asking for recommendations in your area & checking the TUK list. Obviously members can only only advise on individuals via private message, but this re may help you making a decision.
Hello Buddy195,Thankyou for you reply.I am going to ask for an NHS trial of T3 first then take it from there.I did send for the list of endos from TUK but it is lost somewhere in my phone so I'll have to try and find it.If not I'll send for it again.I'm think I remember seeing 2 or 3 near me.Thinking logically I think T3 will be my best option but as I can feel levo whizzing through my body after I've taken it I will take it very slowly.Thanks again.
having ' lost ' your thyroid you have lost that little bit of T3 that the thyroid kick started and helped with conversion of T4 into T3 :
When I trialled a T3/T4 combo it was like a light bulb being turned on in my brain - and like my pilot light having been repaired and been turned to ' on ' :
It is said that a fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg - with T3 being around 4 x more powerful than T4 ;
I'm sorry, I thought your migraines were resolved by having had the thyroidectomy.
I think these other drugs you are taking may have some bearing on your low T3 reading.
However having ' no thyroid ' you obviously need to consider a full spectrum thyroid hormone replacement as you can't restore health and well being without sufficient level T3 and you will not be able to achieve this on just T4 monotherapy.
Morning Pennyannie,Thankyou for your detailed reply.Yes, having no thyroid will certainly complicate things as I won't be getting even a scraping of the other trace elements the thyroid produces.I will first ask my NHS endo for a trial then if that's a no go I'll have to look at alternatives.My endo is a very nice approachable man but a diabetic specialist.I think at times he has been out of his depth with my Graves and didn't seem to understand why certain results were happening when he was doing the logical thing.My migraines are much improved and(touch wood) I only seem to get the aura now when I do get one.I tried to come off amitriptyline very slowly but the side effects were bad so I still take it.I will ask GP if there is an alternative beta blocker.I think it helps me alot as I still have the jittery internal shaking and I must admit I don't cope with stress very well, I get overwhelmed and just want to put my head in the sand.Thanks again for your reply.
I believe the internal jitters and the not coping with stress, getting overwhelmed and not wanting to put yourself back ' there ' are all normal responses when not well and with an obvious imbalance of T3 / T4 thyroid hormones.
Once your T3 and T4 are balanced your health and wellbeing will improve and you will feel better able to cope with what life ' throws your way ' - let's just go one step at a time.
I have to say, since Graves and loosing my thyroid - I've had to look at myself. adjust and accept some limitations - especially around emotions - and now try and wear a bullet proof vest at all times as I am not as resilient as I once was.
Yes I certainly agree with you there.I have made some lifestyle accommodations too.I can't possibly do any "keep fit" cardio exercise. I Would just not have the strength.I was always active.Walking the children to school and back 3 times a day at one time.pushing a double buggy up from town,walking everywhere.I know I'm 25 years older but I accept my limitations and just try to keep active.I also try to take one thing at a time so as not to overwhelm myself.You have to have a bit of fight in you to keep going but to try and take on too much at once you would be on a road to nowhere.I'll start by asking for a trial and take it from there.Thankyou again for your support.
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