Weighing in at 42 kg, clearly still malabsorbing, worse since dropping Betaine and Enzymes due to ulcer symptoms. Weird gait/balance, worse ever CFS on last increase of 1/8 grain, so I have dropped it back down again. These are the results, and any thoughts would be greatly appreciated.Difficult to stand up long let alone walk more than 5 - 10 minutes, dizzy, disorientated, troubled by light some days, air hunger, buckling legs, anxious.
Exhausted, and wondering if I have too much or too little NDT. I get cofused because I lose weight on a dose increase, but I am still very symptomatic. I know some will say my T4 /T3 are ok in range but my TSH has crashed out.
Levothyroxine leaves me with hives hence I have not successfully been able to try a combo of T4 and T3. Am also DIO2 + and MTHFR +
So sick of feeling dreadful and feel like im fading.
Every best wish to all, G.
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Gillybean1
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Time for a reassessment of the treatment of hypothyroidism
It's not clear what your current dose and results are!
Please confirm dates of tests and corresponding doses
You say you have the Dio2 polymorphism which can affect T4 to T3 conversion especially if inherited from both parents
I would expect your FT3 to be lower .
Are you also taking T3?
Do you have Hashimoto's? Have you had your thyroid antibodies levels tested
I suspect that may at least part of the problem
Chronic hives are especially common in people with Hashimoto's thyroiditis , an autoimmune disease that causes hypothyroidism (an underactive thyroid gland). The rash looks like patches of raised red or skin-colored welts
Lovely to hear from you again, and thank you for taking the time to reply.
Those were my recent tests and results... the 1 3/8grain of NDT and then 6 weeks later so last week the results on 1 1/2 grain NDT.
Yes, I have Hashimotos, and DIO2+( one parent) diagnosed 2011 but only medicated from 2015, starting with Levo and switching to NDT following problems with Levo. I have tried T3 only, NDT and T3 combo, currently on NDT only.
I suffer with multiple 'reactions' to foods, chemicals etc some cause breathing and swelling, some cause rashes. The last reaction to a Levo brand was to Eltroxin which has Acacia in it which 'may' have caused the irritation. Via here Ive been looking into Vencamil Levo to see if that would work for me ,perhaps with some T3.
My question really was are my results posted above, under or over medicated? I am assuming I am overmedicated ? as I am losing weight with the increased dosing and have insomnia BUT I am still very symptomatic, freezing cold, v low BP, low temp, exhausted etc etc.
My TPO thyroid antibodies came down with NDT but in recent years TG antibodies are showing some now.
For me the gut seems to be my root cause, and as I have failed to get the right optimal medication dose for me I think this is why I had so many histamine reactions and or food intolerances.
Every best wish and thank you ,I will read all the links you have sent, G
So basically we are looking at the following group of results and need to follow a process of elimination
I'm assuming you followed protocol advised here for testing and dosing
6 weeks on 1 1/2 grain Armour NDT
Dose = ...FT4 = 57mcg
FT3 = 13.5mcg.
Result after 6 weeks =
FT4 18.8 (12-22)
FT3 5.4 (3.1-6.8)
FT4 is 68% through the reference range
FT3 is 62.16% ditto
Both acceptable %ages....but not necessarily right for you!
We aim to have the Frees roughly approaching 75% through the ref range
To answer your question...
You are not overmedicated...
An over range FT3 indicates over medication
Your Frees, and TSH, are fairly stable since the previous test.
So Hashi's confirmed. Are you gluten free? It helps many with Hashi's
I thought we might see evidence of a Hashi swing but not here!
Once you get your dose right your different symptoms should improve, so, as you think, something about the dose is wrong.....size or content!
Hypothyroidism will affect some, if not all, of the body so imperitive to find your therapeutic dose
Antibodies don't go away but they do fluctuate....it is likely a coincidence that they dropped on NDT.
helvella has done a great deal of work into excipients and here I bow to his much greater knowledge. I'm sure he will point you in the right direction
First we have to source the root cause...
I'm thinking excipients!
After all that waffle I suspect you would be better with a T4/T3 combo providing you can identify pesky excipients (including any you've been taking in the NDT)....I'm sure helvella will advise.
Just my thoughts....others may see things differently
Yes GF 13 years, DF 10 years, SF , Egg Free, no cheating or lapsing. Intolerant to Rice, Chicken, Potatoes recently, Spinach and a few others. I follow FODMAPs regime.
So you dont think losing weight on the last 3 increase = overmedicated ?
I was minded to drop back down to 1 1/4 grain NDT and add T3 1.25 mcg up to 2.5mcg and see if that helps.... that would drop my T4 down to about 12ish and TSH might come up a tad, but I wondered if I might gain some weight and better digest with the extra T3.
The only excipients possibly not great in Armour is corn starch, well thats what its supposed to be........
Thank you for your time DD very much appreciated. Night night, G
It was about 4 years ago after Id cleared out the T4 it was approx 12.5 mcg that i very gradually built up to ....I just couldnt tolerate it or function at all, and ended up adding a 1/4 grain of NDT back, I tried this for nearly a year, it was just awful. I went back to NDT.
The best I ever felt was on 1 gr NDT and 7.5mcg back in 2019 ...... I was doing okish for 3 months + then boom, palpitations , agitated, hot etc I panicked as I added too much and my T3 was reading 13.8....... so I dropped it all and started again, by which time Id lost the Consultant providing T3.........and you know what thats like.
I think I will try less NDT and some T3 again.
Do you find any difference between sodium Liothyronine and hydrochloride liothyronine?
And if a NHS Consultant in the past has written a private prescription for T3 and its on my NHS notes ,can an NHS GP write a private script for the same do you know?
I take my NDT in split doses between 6am-7am and the 2nd dose 8 hrs later. If blood testing I drop the second dose completely. I do the blood test at approx 7am . I cease Biotin for a few days.
My only diagnosis is DIO2+ (one parent) MTHFR+ (one parent) Hashimotos/ CFS/ Osteopena (5 years before thyroid meds so malabsorbing for sometime)
B complex methylated 25 years,/ Mg,/ Zc,/ Selenium , /C, /Dmk ,/ E, /Coq10,/ Omega 3/, B12, /probiotics.
I often wonder if Ive masked a B12 issue (Maternal grandmother and Mother both PA) by taking B12 complex for 25 years BUT the MTHFR+ one varient indicate Folate issue only.
Diet by my standards is appalling. What I can eat is fresh, pretty clean but very few varieties now due to so many gut problems or reactions. Not ideal for microbiome.
I just wondered if you thought those test results were over or under medicated, as I lose more weight ( i can not afford to do this at 42kg) when i increase my dose, have insomnia, BUT remain very symptomatic with typical hypo signs.
I read the article, very interesting.... thank you for taking the time to reply, G
I'm trying to work out from what you said the timing of your last dose of NDT before this test?
FT3 is at 63% but it really depends if you left 24hrs from last dose or 8-12hrs.
You sounds like a MCAS person, also possibly EDS with some form of dysautonomia. Suggest you look into those for further testing and possible treatment.
Thats quite a long time between last dose and test but its NDT so maybe different slightly. If you feel over replaced then go back slightly by 1/4 or 1/8 grain.
I was thinking the same as DD regarding your issues with t4 and that ndt being both t4 and t3.You say you tried t3 only. What was the outcome of this?
This is just my personal experience. I learned the hard way that I couldn't tolerate t3 if I still had t4 in my system. Eventually learning I had to be off t4 for 12 weeks for it to clear before starting t3. It then had immediate positive effects.
Yes, I was really poorly waiting 3 months, but having tried on previous occasions to start t3 too quickly after stopping t4, I persevered.
I've had to do this on a few occasions over the years when trialling liquid t4, then back to t3. So I know this is true for me.
The outcome on T3 only was dire, I ended up putting a 1/4 grain of NDT back in just to exist, so I appear to need some.
The best I ever felt but not fixed was 2020 when I was on 1 1/4grain of Nature Throid NDT (no longer available sadly) and 7.5mcg of Henning T3........ BUT 12 weeks in I suddenly got palpitations, overheating, anxiety, did a blood test and TSH and T4 were low out of range T4 was 10 (12-22) and T3 was 13.9 (3.1-6.8) It wasnt gradual , I felt ok for 11 weeks then boom, scared myself stiff and have been struggling ever since.
+ Endo back then wanted TSH detectable bla bla bla, T4 in range etc etc.
Oh sparkly I just havnt cracked it and I feel im running out of time.....that said youve given me hope, because you did work it out, so its doable.......just got to get the ratio 'for me' right.
Thank you for taking the time to reply, every best wish, G
If you started t3 only regimen straight after ndt or t4 you could have this issue.I know years ago I spoke about this at the time and knowledgeable members knew that this can happen. It is a thing, just not very common.
I gave up at first on t3 only because of this. This was when I was first prescribed it. If I had known then what I know now I wouldn't have suffered like I did.
If you try everything else and nothing works then do give this a try. I know some say 8 weeks to clear but that didn't work at first try for me, hence 12 weeks.
But how did you cope with no meds for 12 weeks ? Im trying to remember how long I waited to clear T4 I will dig out my diaries .....I know I felt dreadful and I remember the Endo was very surprised at how quickly in 7 days my T4 dropped from 18 down to 11 when I stopped all meds. It took over a month for TSH to be detectable again.
I felt edgy, twitchy, irritable, restless, on T3 and I could only tolerate 12. max in the process.
Oh dear I think im just too weak at the moment to think what to do, but I hear you and maybe I need to try again. Lost the Endo who wrote T3 prescription, so this wont be an easy to do.
Thank you very much for taking the time to reply, I very much appreciate it,, every best wish to you, G
So you have tried in the past to get t4 out of your system before starting T3? If so then T3 only might not be the answer. For some reason 8 weeks rings a bell with me but I know I had to leave it longer, hence 12 weeks.I was ill anyway so didn't make much difference. I know when I ever stopped thyroxine I felt fantastic for a week then the chronic fatigue, aches, freezing cold, just everything would kick in.
T3 acts immediately for me, within an hour of taking just 6.25mcg I would go from chronic fatigue and aching all over to jumping out of bed as though nothing had been wrong.
I must utilise it very quickly as I know not everyone has the same effect instantly.
I'm not your typical thyroid patient, I'm a bit complex
Awwh you made me smile Sparkly, Im not the typical thyroid patient either !!
Yes I did try very hard to clear out T4 to give myself the best chance, and I too respond quickly to the T3, first reaction was excipients within 10 -20 mins (happens with ant fillers for me, I can feel them, gut always) then T3 kicks in within an hour, peaks by the 4th hour and wanes. The NDT is much smoother for that, but same kick from the T3 side.
Im going to give the NDT a drop, wait a couple of days and add a pinch of T3 and see how it goes.
Did you find any difference between Sodium Liothyronine and Hydrochloride Liothyronine ? Just wondered.....
Only one product that I know of, Thybon Henning, has Liothyronine hydrochloride. All other Liothyronine products have Liothyronine sodium.
It is unclear if there is any rational basis for this or, maybe, it is historical?
Whether there is any real difference is also unclear. Quite possibly not. After all, when Liothyronine sodium reaches your stomach it might well react with the stomach acid (which is hydrochloric acid) to produce Liothyronine hydrochloride. Pure guesswork, I'm afraid.
I agree that this sounds like MCAS. I’m coming to that conclusion about myself. I’ve suspected I have histamine problems for years but an NHS allergy clinic discharged me, and after waiting months for an NHS Immunology appointment they discharged me in a letter after a negative tryptase test. ( I’ve since found out this is a bad indicator for MCAS as it’s often not raised). The NHS don’t seem to have a clue about it, particularly as the recognition of MCAS is in its infancy. In fact some NHS doctors don’t believe in it, so don’t be surprised if you have to pay privately for help with MCAS.
Thank you Bluejourney for taking the time to reply.
Its a lonely frustrating old place out there trying to navigate this stuff . Im sorry you too have been led a merry dance. I hope you are getting somewhere albeit privately
Ive taken on board about Tryptase , really useful to know and repeat , and about MCAS.
Yes it’s really frustrating when you find you’re up against it getting the right help, but this forum is so helpful you feel you’re not alone. It would be worth trying a trial of emptying your histamine bucket with diet to see if it helps. I’ve found the Swiss Special Interest Group list of histamine in foods the most comprehensive. Then of course it depends on how fresh the food is, whether the food is processed, eg mince, sausages, and how it’s cooked. I can eat ok ingredients, but if I cook it long and slow in a casserole I’m in trouble. And some foods are not high in histamine but are histamine liberators. But some foods I’ve found are helpful in reducing histamine, eg pomegranates (fresh), blueberries and Rooibos tea. Good luck. Hope you’re feeling better soon.
I had similar thyroid results on 1 1/4 grain Armour in July but I still felt symptomatic, it was confusing. My prescriber did not change my dose.
My next results in September showed my ferritin had got lower and T4 and T3 had tanked to 40% of range. My prescriber increased dose to 1.5 grain and I had an iron infusion in October. I’m still adjusting to the new dose.
In your situation I wouldn’t go up or down with NDT because it could negatively affect your T3 and your weight. Look at iron and MCAS.
Thank you for taking the time to reply. Yes I agree my Iron is low........down to gut problems and worse since I stopped Betaine and Digestive Enzymes....due to probable stress ulcer.
If I lower my NDT the weight should go back up a bit though...but I hear you, the chopping and changing despite leaving 6 weeks between a change isnt ideal, Im desperate now.
The more I write this the clearer i see a vicious circle.....as with alot of us on here. The disease causes untold stress, some of us lose our jobs and homes over it....more stress....more impact on thyroid/gut etc etc and round we all go.
I liken it to us all being Jugglers, on a daily basis we must achieve optimal Iron,Folate,B12,Cortisol, Vit D,Mg, good sleep, exercise..........yet the stress and loneliness of the actual diseases hugely impacts these.
I am very heartened by the success stories here though and one day I hope to be one.
Every best wish to you and I hope you continue to do well. Im guessing you got an iron infusion because you were very low. I wouldnt be offered one.
Yes, very much a juggling the balls. Covid seemed to knock my iron off balance early this year. I’m under nhs haematology for iron deficiency anaemia, infusions are triggered when ferritin gets to 30 but this time it was 46 and the consultant agreed. Very thankful to be under her.
I did do my first iron infusion privately three years ago while I was on wait list for nhs haemotology, if that’s an option for you.
GP referred to haematology because I cannot tolerate iron tablets (gut issues) sounds like you are similar.
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