Hi all, I’m relatively new to the site and have only posted once or twice but hoping for some thoughts from you all please.
I’ve taken Levothyroxine for over 25 years and over that time by daily dose built up to 350microg a day. My weight has gone up and up over the years (I’m really heavy now, too embarrassed to say how much but it’s huge). My energy levels have gone down and down and down, along with loads of other symptoms. I’m 50. I assume I’m also menopausal as my period has more or less stopped but I’ve never discussed any options for that with my Doc. I also have high blood pressure and take various tablets for that. I recently pushed to get referred to an Endocrinologist and he said T3 would be worth trying. My results at the time were
Tsh 0.83
T4 26.1
T3 5.1
I managed to get some T3 (Thybond Henning that I am currently using , but also have some Tiromel I haven’t tried yet). The endo recommended reducing my Levo to 200micorg and taking 20microg twice a day. I weaned it in gradually and am now at the full dose.
The first two weeks I felt really great - almost jumping out of bed in the morning. But over time the weeks I’ve just gone back to the same, and I’d say feeling even worse than before. I think I’ve also put on even more weight. Been on these for maybe 7 weeks now. I’ve not yet had bloods redone, so don’t know where I’m at with that. But I’m totally gutted, think I was really hoping this was the answer and now I feel at a real loss as to what to do next.
I’m doing what people recommend and taking the first T3 separate from other tablets in the morning and waiting an hour.
Would appreciate any thoughts or guidance.
Thanks
Written by
Curlysand
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Can you please add your ranges to the results? Ranges differ from lab to lab so without them we should just be guessing. If you have had any recent tests for Vit D, B12, folate and ferritin then can too post those and ranges as well please? These help your thyroid to work better and many of us have to take supplementsif these aren't optimal.
I don’t know the ranges to the results. The GP surgery did them and just gave me the three figures over the phone. They aren’t very forthcoming with information.
I have a print out of tests from last year from the GP and a b12 test showing 269.2pg/ml, folate 3.13ng/ml, ferritin 66.1ng/ml - again there are no ranges noted anywhere. But it says beside folate “below low reference”.
I'm assuming you are in the U.K.? If so they have to give you your results and not charge you but may be a small charge for paper and ink. Always best to get the actual printout as any thing verbally could be given to you wrongly. I would ring up reception and say that you want your results and will pick them up -given a day or two hence to give them time to do that. If they say they can't because doctor won't do that then say you have been told by HealthUnlocked who are recommended by NHS Choices that this is common practise. There is still a chance that the ranges may be absent though I think that is extremely unlikely but if you ring the hospitals Pathology department they will give you the ranges but they will NOT give you your results. As the test says your folate is under range then ask your doctor how to address that. He should give you a course or 3 or 4 months and then retest. I was in the same position and after the course I had reached the lower figure so I bought my own in Boots over the counter and I still supplement every other day now I'm higher in the range to keep it at a decent level! I have changed to Methyl Folate though as that is absorbed better. My latest bloods with that was slightly over range so yes it is absorbed better!
Curlysand- this may or may not help as I don’t think you take an afternoon T3 dose but I felt very similar recently when I was on 100mcg of T4 & 15 mcg of T3 (10mcg with T4 on waking, 5mcg in afternoon). The first few weeks were amazing then symptoms began creeping in again. I did bloods which confirmed my T3 levels had fallen. I tried upping the T3 to 20mcg but felt overmedicated. I then tried taking my afternoon T3 at least 3 hours after food and an hour and a half before food as I realised my 5mcg afternoon dose wasn’t being absorbed properly when taken 2 hours after lunch. It made an enormous difference within a day or two- I’m back to feeling great. I found it fascinating and every time I’m tempted to have even a cuppa in between say, 2pm and 6pm, I remind myself how rotten it feels if the T3 doesn’t absorb properly. Hope this helps.
That’s Kipsy, I do take a second tablet, but have been taking it before bedtime. Do you think that’s too late? I’ll try your suggestion of doing it earlier and leaving a big gap thanks. How often do you get new bloods? My GP says evey 3 months is enough and that’s why I’m still waiting for my next appointment with them. Maybe I’d be better getting my own.
It’s not a problem taking it at bedtime as long as you finished your evening meal and ALL snacking and drinking (apart from water) at least three hours before taking it. I find it easier to have a decent sized lunch and plenty of essential chocolate(!) and a big cup of tea then start counting three hours, take the T3 then wait another hour before the next essential...an evening glass of wine. 😀😀 it’s probably good for me to go without anything for four hours as otherwise I’d pick at stuff. I eat quite late at night and really couldn’t manage to wait three hours before going to bed,
I only started T3 in May. I’ve done two sets of bloods so far, one for a private endo, one for myself. I will get a full thyroid and vitamins one done in October as I want to check D3, ferritin etc every 6 months but otherwise I will only test when/ if I feel symptoms creeping back in or before I see an NHS endo later this year so that I feel informed and able to argue my case with confidence. I’ve also recently has the DO12 gene test done but don’t have the results yet. Again, it’s to potentially help fight my corner later this year with the NHS.
That's a ridiculous switch-over i.e. 200mcg of levothyroxine for 40mcg of T3 which is roughly equal 'in its effect' to 120mcg of levothyroxine.
I've always taken my T3 once daily as recomended by a deceased Adviser to TUK, who also took T3 himself. He was an expert in the use of T3 - especially for his thyroid hormone resistant patients - and stated that one daily dose of T3 enabled all of our T3 receptor cells to be saturated and then the work of that one dose began and lasted between one to three days.
Dr Lowe also only took one blood test and that was for the initital diagnosis, thereafter it was all about the symptoms being relieved. Dr Lowe (he was Thyroid Hormone Resistant himself) took 150mcg of T3 daily.
It would certainly be better if I could take the T3 all at once. Is it okay to take then at the same time as the T4 or should I be taking that an hour later do you think?
The reduction was of 150mg for 40mcg of T3 ( still taking 200mcg of T4).
I am sorry I misunderstood and understand you take 200mcg of T4 alone with 40mcg T3?
As you are already taking 200mcg of T4 I'd just add the 40mcg of T3 to your dose of T4. If your temp or pulse rises a bit too high reduce dose slightly next time. Wait two weeks and add in the reduced part again. It temp or pulse rises again, the reduced dose should be the one you should stay on for a longer period as that might be the dose which is best.
If we take NDTs - this has a combination of all of the hormones and we take one daily dose.
The endo was right to reduce your t4 as most ranges top end is circa 22.( years ago when you started they were circa 28) so you were taking too much by today’s levels.
You’ve swapped 150 t4 for 40 t3 however this is a reduction in an overall dose.( 37.5 t3 is equivalent to approx 110 mcg of thyroxine)
I think( me personally) that silverfox7 is right.
It’s most important to get the basics right. Do you have thyroid antibodies?
The foundations have to be sound.
Most important is
Diet ( high fat as in advocados , coconut oil. No gluten if you have hashimotos ( thyroid antibodies).
A low carb diet with huge amount of vegetables and some meat for example works well for me. I never weigh myself or feel hungry.
Vitamins
As mentioned by silverfox7 they must be optimal.
Absorbtion
This was the key for me. I had a comprehensive stool analysis which showed I was not absorbing anything well.
The test shows probiotics levels. Stomach acid levels, bacterial levels, parasites ( if you have any) levels and if you have candida.
Also mine confirmed I was immune to some antibiotics , which suited me best and some supplements I have as immune to .( fixing a leaky gut or a lack of stomach acid is relatively easy to do). Comprehensive stool analysis tests can be done via Regenerus or Genova. Your endo could sign off on the latter which needs a doctors consent or you need to go thro thyroid uk. Personally I prefer the latter company.
Then when these are sound then it’s time to concentrate on:-
Thyroid meds and adrenals issues if there are any.
Any changes to meds should be done with the help of a basal thermometer to monitor temps. You dose to 36.50 and do 4 p day. ( 8 if you are increasing doses) If you are below this level your meds are insufficient ( you can’t tell which one needs attention without a blood test) and if the average of the 4 shows a variation of 0.3 the adrenals are not fully working.
Without the basics being right you will struggle to have optimal thyroid meds.
Dr Lowe used a thermometer to check his temps, together with pulse and ( as I recall) blood pressure.
I’ll be honest my doses of t4 were high( not quite that high) and I have no blood pressure issues. Any gp I know would have rapidly reduced them with higher than the top levels allow now.
If you check the basics, and sort out any issues you should find you need less thyroid meds.
I swapped to ndt after sorting out my absorbtion and switching adrenal meds. My dose is far lower overall and I feel much better.
It just takes time to see the wood from the trees.
Www. DrMyhill.co.uk is a great web site full of information on adrenals/ diet changes. In the top right hand corner of the home page is the search bar. You can type in orchestra and up comes the best article I’ve read to help improve your health. It also shows you how to plot your temps.
Thanks for all theee great responses, they are really helping. One other question... is it okay to switch brands of T3 without going back through a wean in do you think? My Thybond is just about done and I was going to move on to the Tiromel. Sorry to keep asking so much, but it’s so good to speak to people who are experiencing this.
Can't help you with that I'm afraid but have a look at the Thyroid uk site and you will find lots more info that doctors never tell you like Vit D needs to be taken 4 hours away from meds. Anything you don't understand then shout out! There's a few thinks to get right and it takes time to get it all together but it's well worth it!
Your FT3 (is that what you listed above as "T3"?) would be more helpful. Can't interpret your existing reading without knowing the units and range. If that is FT3, my lab's range is 2.77-5.27 pg/ml. You need to be at least 50% up in range, and preferably higher. I would encourage you to get TSH/FT3/FT4 taken once you have been at your current T3+T4 dose for 5 weeks, then report back.
I do believe that a proper level of T3 is necessary for weight control. When I've lowered my T3 dose, I always notice I begin gaining weight.
Are you on supplements? There are many nutrients (B12, folate, D3, iron, selenium, folate, etc. etc.) that are involved in the function of the thyroid system, that I don't think you can feel well without insuring all of them are good.
One way of finding out if T3+T4 dosing is causing the problem, is to go on T3-only for a while. I did this for over a year and the results were very good, although is is expensive and requires frequent dosing to avoid spikes. I dosed myself using five 12.5mcg doses each day, spread over the day. My dosage level was approx. 0.82mcg/kg body weight. (Compare that to the T4-only full replacement dose, which is approx. 1.7mcg/kg body weight.)
One reason that T3-only dosing is difficult, is that you should be following the thyroid dosing maxim (1 hour before food, or 2 hours after food) to avoid absorption problems with oral thyroid hormone.
With regard to your weight issue has anyone suggested that some of the food you eat maybe the cause of some of your symptoms?. Your weight problem could be down to food intolerances i.e. gluten, dairy etc. It may be worth talking to a nutritional therapist (they are not the same as a dietician or nutritionist that the hospital recommend) as they are worth their weight in gold. They will look at all aspects of your life that could impact your weight from stress, medications, foods etc. After battling with my doctors regarding my weight and being told I was a liar, a cheat and delusional and despite me supplying them with nearly 4 years of food diaries that included everything I ate and drank, what exercise I did, my moods. The problem was right in front of them and they ignored it. I found this lovely lady who actually spent time listening to me. Since then I have lost nearly 3 stone since April and found a lot of my physical symptoms have improved or gone. It is a long road but so worth it when you see and feel the results. Changing your diet will not deprive you of anything as you will find equally good alternatives and it really wont cost more either. Once you find your feet and settle into your new routine you will see the benefits. I must say it may cost you some money for a consultation but your health and wellbeing will be worth it . Mine cost £330 and this included a 2 hr consultation, supplements and a full thyroid panel blood test. (other blood test completed by GP). Hope all the advice you have been given helps. Good luck
Do you take any of your thyroid medication at the same time as your blood pressure medication? If so it might not be helping you absorb your thyroid meds.
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