Hold onto your hats, folks. Sorry this is going to be a long post, though trying to be as brief as possible.
•In September 2018 my TSH was “Normal” at just under 3 but I still had hypo symptoms. Thanks to advice on here and after a bit of nagging, I was granted an increase to 100mcg.
•At the next test, in January 2019 the TSH was down to 0.01. I still had hypo symptoms but in spite of trying to convince them I was not overmedicated and needed an increase, had to take a decrease instead. I hoped this would prove once and for all that an increase, not a decrease, was needed.
•In a way it worked. After 3-4 months - I ended up with swollen ankles and breathlessness and a wonderful GP increased levo back to 100, then125mcg, and sent an endo referral request.
Breathlessness decreased, and breathing OK again after 125mcg. However, ankle swelling, though not severe, was unchanged and I didn’t feel much better than on 125mcg so was increased to150.
•At the next test, T3 was just below top of range, T4 well above range and TSH <0.005. So another decrease to 125/150 alternate days was decided, with a review on 20th of this month..
•A week or so ago the very occasional palpitations became more frequent and I began to feel breathless again and much more tired. A referral by the GP to casualty showed no heart problem, thankfully, and blood test was normal except – predictably – a TSH of 0.004 (the doctor said he couldn’t give me a copy of the results) and an “OK” T4 of 22. No T3 of course!
•I had the results of a Medichecks test today. T3 and T4 were quite a bit lower and TSH still <0.005.
I have an endo appointment (on the phone because of C-19) next Tuesday (12th).
Any suggestions on how to approach this? It should be obvious that TSH values are completely messed up and disengaged from hypo symptoms, but hoping and (especially) praying that the TSH blinkers might slip a bit in the face of the evidence.
Just had a new Medichecks result, after 3 months of a decrease from 150 to 125/150 alternate days
"Do you wear a Fitbit or something similar to record resting heart rate and activity levels"
No, but I do know how to take my pulse. Have thought about getting a Blood pressure/heartrate monitor but probably can't afford it at the moment.
I only started checking my wrist pulse fairly recently, no idea what it was when I first became unwell - not enough energy to bother. Now my resting heart rate is actually rather faster than average (in the mid 80s). Occasionally it has been in the 70s when I've been feeling especially lethargic. I would like my adrenals tested, but haven't been able yet
There is such a mix of symptoms that it's confusing. For example, I often feel hot rather than cold, on top of the usual hot flushes (had those for years), but other symptoms, for example brittle nails, weight gain and psychomotor slowing (though not nearly as bad as it has been) are hypo. And, even though I have difficulty typing as accurately as I used to there is no sign of the classic hyper symptom of hand tremor. My brain is slow and my heart is fast!
"When were vitamin levels last tested and what vitamin supplements are you currently taking?"
I'm taking a B complex, with occasional extra B12, a fairly high dose of Vit D (4,000iu) with K2 and magnesium. Magnesium was tested yesterday when the GP sent me to have possible A Fib checked for. I also take a high dose of vitamin C on the advice of friends - about 3g or so a day (they give me wind, lol)
By the way, do you happen to know the address of that tool to show the % through range of thyroid hormones? The one that's in Polish! I made a note of it on a Word file but can't find it.
Edit: Oops, just decided to check once more with different search words and found it!!!!
Those results look like you may have resverse T3. You need a reverse T3Test to check whether you are converting T4 to T3. Your endo can do this for you
As far as I understand, a rise in reverse T3 is simply a response to having too much T4, but it doesn't affect conversion. It used to be thought that it blocked the T3 receptors (or something like that, don't remember the details), but someone said on here that it uses a different pathway and has different receptors.
Can you please explain how to use the Polish tool? I tried google translate but am not sure what to put in the three boxes for both FT4 and FT3. Thank you
Reverse t3 is not important. There are a number of non thyroid conditions that cause high reverse t3. Reverse t3 has its own receptors and function. It does not block Ft3 receptors as was once thought.
Try reducing t4 and if ft3 goes low and hypo symptoms are intolerable try small dose of t3 with t4 (5mcg split into 2 8-12 hrs apart). Before trying t3 try splitting levothyroxine into 2 or even three doses as this may well increase ft3 through better conversion. Take selenium and vitamin d at usual maintenance doses.
If t4 is excessive it will reduce your effective ft3 levels through negative feedback loops. TSH suppression such as yours could further reduce t4-t3 conversion.
Aim for normal (modal) healthy peer group TFTs e.g. 16-18 ft4 4-5 ft3 and 1.0 TSH.
If I reduce medication, the lethargy and concentration problems will get worse, and palpitations may become permanent with threat of heart damage, stroke etc.
If I don't reduce, or take T3 as well/instead of some of the levo, TSH will continue to be suppressed and I risk downregulation and worse illness in the long run. But so far reduction has made no difference whatsoever, except to increase hypo symptoms.
jimh111 , SeasideSusie ? Sorry to bother you, but I think you have some experience with suppressed TSH. Any suggestions?
Raised heart rate and palpitations could be caused by excess ft4, it has that effect on me for sure.
Changes to doses should be gradual and if significant will take 3-6 weeks to stabilise (for better or worse!).
Reduction of t4 that causes hypo symptoms but keeps ft4 in mid to high range suggests you may need t3 replacement as well and with that a reduction in t4 dose.
Thank you so much. In spite of the inconvenience I think I will have to take your advice on splitting T4. Not sure if I can afford T3 privately so hoping the endo will take pity on me on Tuesday!
I've just given another reply to your last comment - takes so long because of concentration problems - they really are worse since reducing from 150mcg, even though T4 was too high and T3 near top of range then.
Any suggestions on which dose of T4 would be best to take at what time? At the moment I take it at night, either 125 or 150mcg (alternate days)
I'm on T3 and T4 and I split my dose and lots of people including Endos think this isn't necessary but it has been the smartest thing I've done with my thyroid meds.....but I'm currently suffering with many of the symptoms you mention particulary the breathlessness its maddening now that it happens while I talk not just with activity and I have no symptoms of being hyper quite the opposite my pulse rate is 60-70 no matter what I'm doing......thyroid disease stinks.
"I'm currently suffering with many of the symptoms you mention particulary the breathlessness its maddening now that it happens while I talk"
If I get hypo breathlessness (completely different from asthma which I used to have) I have to remember not to talk too fast, or need to stop and get breath back!
But that's a huge improvement on when first diagnosed when it was almost impossible to concentrate enough to find words, let alone string a sentence together that made any sense!
I do hope you will get it sorted soon. You must surely be undermedicated but will they believe you?
I'm sitting in the same cleft stick you are, and have recently re-started splitting Levo , as an experiment , encouraged by Hashihouseman's logic.
I used to do this years ago , i took 100[7am] and another 50[2pm] ,and at the time i felt it helped me manage to drive safely to do the 4pm school run and cook dinner. I did this for years and the doc agreed to give me all 50's on my prescription (i'm sure he was just humouring me though !~he said 'it doesn't work like that'.)
Sometime round 2016 i stopped, I didn't need to drive so often and i was feeling so rubbish anyway , and my dose had changed so i t wasn't so easy........... i guess i convinced myself the gp was correct and it had been a placebo effect.
Anyway i was interested in Hashihousemans posts ,on tsh driving conversion, so i have been trying it again but only for a few weeks yet.
But it has made me think i wasn't being so daft in the first place, when i thought it helped.
The way i see it , we are 'following the latest nhs guidelines on thyroid disease'........!!!! (which do at least state that they recommend that further research be done on the people who don't do well on levothyroxine , or words to that effect.)
But since that is unlikely to happen ....... we will have to research on ourselves , which is easy since we happen to have the condition. Just a shame most of the Gp's and Endo's will still have their fingers in their ears singing La..La..La!!!
I've now read your post more carefully and have some more questions/comments!
"Try reducing t4"
Yes done that. Even a small decrease 3 months ago, from 150 to 125/150mcg alternate days have made my hypo symptoms worse (composing a post takes ages because my brain won't work properly). The reduction in levo decreased T4 and T3 quite a lot while making no difference whatever to the suppressed TSH.
"If hypo symptoms are intolerable try small dose of t3 with t4 (5mcg split into 2 8-12 hrs apart)."
T3 seems very difficult to get so I decided to try Metavive for now. though this will no doubt keep the TSH suppressed. No guarantee of how much if any thyroid hormones are present, but seems better than nothing as a stopgap.
Before trying t3 try splitting levothyroxine into 2 or even three doses as this may well increase ft3 through better conversion. "
That sounds a good idea. Only problem is that I would have to keep 4 hours away from vitamin D, tea or coffee and foods containing more than a tiny amount of calcium (I love cheese and drink a lot of milk!)
Absorption isn’t as much of an issue as excess t4 feedback. You can simply allow for a slight decrease. I take 125 with at least 50 Of that taken with or near a meal! It’s the net effect that matters. Instead of reducing amount of total levothyroxine split it into three. Try bedtime waking and mid afternoon.
Even in the previous test (on 150mcg) only the T4 was raised (28.7, top of range 22) , and T3 just under top of range. Though I still had concentration problems, which are rather worse since the reduction in levo.
Of course, others are suffering far more than me, but it's important that we fight to be as well as we can.
This has helped to see more clearly where the battle lies
T4 was well within range on the last test after reducing slightly from 150mcg. But, as you say, that's not the point. I just hope the endo sees the point and doesn't insist I'm still overmedicated.
Its not a good idea to take a regular high dose vit C with b12. The max should be 500mg. Any higher inhibits uptake of B12. We need B12 to help conversion of thyroid hormones, amongst many other uses. I very much doubt the Endo will know this.....
I know supplements need to be kept in balance, and some can interfere with the others, but never heard of this problem. Do you have any links about it?
I need to tell my friends who advised me to do that. The husband is a retired dentist and has been studying intensively about the most effective way to protect against C-19. His conclusions so far include taking supplements of vitamin D, very high vit C and a couple of other things (magnesium was one).
I have to disagree 3 g of vit c is fine. Also you are correct re the virus. Personally I take slightly more. Yes I have b12 too but my Endo has encouraged me to increase the vit c and I no longer get nasty sinus infections etc. After writing 26 books I know she fully understands contraindications.
But you seem to be ok if you leave a two hour gap.
On the other hand clearly science has moved on & this IS now being disputed.......been a few years since I looked at this so also found this which makes an interesting read and puts both arguements forward:-
The only way to know for certain would be to do a study in the exact same conditions (temperature, PH, digestive enzymes and bacteria in the absence of oxygen) as the human gut. And even then individuals would differ. Maybe hypo or hyperthyroidism would have an effect too. So you would have to compare with the healthy population.
That's the way of science, nothing is 100% certain, though repeated very carefully planned experiments might eventually prove something
Just a theory but.....with water retention symptoms like puffy ankles alongside heart palps, I'd be increasing two things together, as they work together to help with fluid retention - Magnesium + p5p (b6).
Maybe go easy on the cheese for now, as you may have a bit of an electrolyte imbalance going on especially as you are on a pretty high vitamin D dosage which will pull in a lot of extra Calcium from your diet. Calcium needs to be matched by other electrolytes - especially Magnesium and Potassium to keep water retention at bay.
B6 in its active form (p5p) escorts Magnesium to cells, so that is a good reason to have good levels of B6. (It also helps the adrenals.) If you take p5p it is far easier to excrete, so you won't get the neuropathy issues that you can with unconverted pyridoxine.
Hopefully, by tweaking your electrolytes your t3 levels could also improve in line with your t4 as electrolyte imbalance causes adrenal issues which could have hindered thyroid conversion.
Thanks for advice. I have been neglecting magnesium lately, only take occasionally, so intend to try to take every day. A recent blood test for magnesium was "Normal" but I read recently on here that the body tries to make sure magnesium blood levels are maintained even if tissues are deficient.
Other electrolytes were tested fairly recently and all were normal. Sodium and calcium usually seemed quite high in range, and potassium (if I remember) more mid range.
I take a vitamin B complex already. Would that have enough B6? Or might taking it separately upset the balance?
I'm hoping to discuss possible adrenal issues with the endocrinologist next week, as I have had some symptoms that suggest a possible problem.
Ive given up re hypo. My gp or Nurse dont even care. Im staying on 25 for the time being. See for myself as 50 made me ill. alternative nights.Tummy bother, skin blotching and weepy. I had to have my goitre taken out as it was large and affecting my wind pipe. I had it 40 plus years but nobody bothered except my family then it was a rush job. I too get swollen feet quite painful all the time. Im getting old 75 ha ha. Chrisx
Maybe ,in this brave new 'working from home world' of group meeting's in cyberspace , you can ask for a 'zoom' ? meeting with your endo' and have a consultation that includes support from the expert's on here!
Now that would be fun though probably not for him !....Seriously though, wishing you all the best for you Tuesday , and carry on thinking up awkward questions to ask ,cos you do start some excellent posts.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
though probably not for him !....Seriously though, wishing you all the best for you Tuesday , and carry on thinking up awkward questions to ask ,cos you do start some excellent posts. 
Weaning off Levo help please + test results
need help got a consultant appointment next week
Help with Results going into to endo meeting next week
Reduce Levo to increase TSH?
Suppressed TSH is okay says endo!
