125/100mcg alternate days- can this cause notable fluctuations of symptoms?

Hello all

I know that Levo is a storage hormone and that many do different doses across the week. I currently take 125/100 alternate days.

If it’s a storage then why is it necessary to hold off Levo before blood tests? I’m assuming because it makes an impact on results?

Is it then possible for me to notice a change from day to day on symptoms? I appear to be having a (slightly) better day then followed by a shocker. Overall, I’m quite poorly with this current flare.

I have Hashis and confirmed chronic thyroiditis on scan in December. I’m awaiting Endo referral but likely that won’t be until Feb even though it’s been expedited.

I’m getting medichecks bloods in Jan as this will be the 6 week mark on this dosing regime since reducing from 125 daily. (T4 had gone over range and was having ‘hyper’ symptoms). Previous to that I was on 150.

I know I’m a poor converter.

Any ideas on the alternate dosing be helpful or similar experiences?

Thank you 🦋

[SeasideSusie Remembering]

If it’s a storage then why is it necessary to hold off Levo before blood tests? I’m assuming because it makes an impact on results?

Levo peaks in the blood about 2-4 hours after ingestion then gradually lowers again, so f you take it before the test it will give a false high FT4 result so we suggest last dose is taken 24 hours before the test. Leaving longer than 24 hours gives a false low FT4 result.

I alternate 100/125mcg and it doesn't cause any fluctuations in symptoms for me but we are all different and some people might find it doesn't suit them.

[Hidden in reply to SeasideSusie]

Thank Seaside Susie you this makes sense. I think maybe I’m hyper sensitive at the moment likely observing every symptom out of frustration to get better 🙏

[SlowDragon Administrator]

If you notice different dose levothyroxine on different days

a) are both 100mcg and 25mcg tablets same brand

B) you can cut 25mcg tablets in half and take 112mcg every day

ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

[Hidden in reply to SlowDragon]

Hi SlowDragon I am on Almus so split 50s in half to make the 25 of the 125. I’ve been on the same tablet for 2 years after a terrible start on Teva.

I take the Better You Vit D spray with K2, magnesium, turmeric, Iggneus B Complex (but leave off before bloods for a week), Zinc and Selenium. I’ll try and dig out my latest bloods and attach.

I know Vit D was well up on previous but I better check 👍

[Hidden in reply to SlowDragon]

I have 3 pics of latest results but can’t find a way to upload. Think they are also not so easy to read 😡I had to screen shot as were emailed and cropped off personal stuff but not working well 🙈

[SlowDragon Administrator in reply to Hidden]

Just type results and ranges?

Or add image to reply

Click on “mountain rectangle” below right to add image

[Hidden in reply to SlowDragon]

Here they are SD! Thank you

Results from 23rd Nov. (I was on 125mcg Levo per day at this point. Reduced to 125/100 alternates after these results. Had false ‘hyper’ symptoms. Due to retest in new year at 6 week mark.)

Iron 17.5. (6.6-26.0)

TIBC 56 (41-77)

Transferratin Saturation 31 (20-55)

Ferritin 64 (13-150)

C Reactive Protein 1.1. (<5.0)

Hemoglobin A1c 5.4 (4-6)

HbA1c 35.6 (20-42)

Rheumatoid factor <10 (<14.8)

TSH 1.27 (0.27-4.2)

T4 24.5 (12-22)

FT3 4.2 (3.1-6.8)

Vit D 171 (50-200)

Anti CCP 2.0 (0-7)

Is there anything I need to get checked re vitamins next time please?

Thanks so much for help!

Ps

Results from earlier on 9th Nov

T3 3.7

T4 23

TSH 0.99 Same ranges as above

My T3 has always remained fairly constant at 4.1/ 4.2 over 2 years despite moving from 50mcg to 150mcg in that period and using the calculator it’s only about 30% through range. I have no doubt I have conversion issue as no matter how much Levo, that doesn’t move or drops, so next step to get dio gene tested as I think you’d recommended to me on a different post

🙏

[Hidden in reply to Hidden]

Here they are SD! Thank you

Results from 23rd Nov. (I was on 125mcg Levo per day at this point. Reduced to 125/100 alternates after these results. Had false ‘hyper’ symptoms. Due to retest in new year at 6 week mark.)

Iron 17.5. (6.6-26.0)

TIBC 56 (41-77)

Transferratin Saturation 31 (20-55)

Ferritin 64 (13-150)

C Reactive Protein 1.1. (<5.0)

Hemoglobin A1c 5.4 (4-6)

HbA1c 35.6 (20-42)

Rheumatoid factor <10 (<14.8)

TSH 1.27 (0.27-4.2)

T4 24.5 (12-22)

FT3 4.2 (3.1-6.8)

Vit D 171 (50-200)

Anti CCP 2.0 (0-7)

Is there anything I need to get checked re vitamins next time please?

Thanks so much for help!

Ps

Results from earlier on 9th Nov

T3 3.7

T4 23

TSH 0.99 Same ranges as above

My T3 has always remained fairly constant at 4.1/ 4.2 over 2 years despite moving from 50mcg to 150mcg in that period and using the calculator it’s only about 30% through range. I have no doubt I have conversion issue as no matter how much Levo, that doesn’t move or drops, so next step to get dio gene tested as I think you’d recommended to me on a different post

🙏

[tattybogle]

in theory we "shouldn't" be able to feel the difference, due to the long half life of Levo ... .. but most of us here have already learned that Levothyroxine theory doesn't always hold up to scrutiny as well as personal experience does . So if you think you might be feeling the difference, you can easily experiment for yourself by splitting a 25mcg tablet in half and taking 112.5mcg each day.

It doesn't matter if you don't get an exact half .. as long as you take the remaining half from the same tablet the next day .. so don't cut 10 of them at a time .. just do one at once, and put the remaining half somewhere safe till the next day.

I always take my 112.5mcg daily dose this way.. not so much because i can feel the difference between a 100mcg day and a 125mcg day ( although i can, a little bit ) .. but because i just find there's less chance of me getting muddled up about what day it is if i take the same dose every day .

Trust yourself, not the Levo 'textbook' .. that particular text book was written by people who haven't take Levo everyday for half their lives ..unlike us lot .

[helvella in reply to tattybogle]

I agree - while it is hard to put my finger on precisely why, I definitely prefer 112.5 every day.

If I alternate 100 and 125, I notice something different. While I don't think it is entirely psychological, it's quite possible that having to think about dose every night has an impact.

[Hidden in reply to helvella]

Thank you helvella I think as I’m on a thyroiditis rollercoaster it could be likely I’m looking for it, but I keep a symptom diary at the moment and I started to notice a pattern.

Initially, I wondered if I’d ‘over done it’ Eg walking too far on one of my ‘better’ days (inverted commas as truthfully no day is better 😂 but feel less debilitated) then was paying for it the next. I’m sure there’s some adrenal or CFS in background. But then a lightbulb came on and I though maybe the different dosing. I’m feeling fragile so likely hyper sensitive atm.

🙏 for the feedback

[Hidden in reply to tattybogle]

Thank you Tattybogle Interestingly this is what I was doing initially but I didn’t do the split carefully and was a bit worried I’d lost a bit as was crumbling, but I think I’d be best going back to that now you’ve said.

[Gingernut44]

When I was alternating 75/100, I could definitely tell the difference. I was definitely more sluggish on my 75 days although, in theory, it shouldn’t be noticeable. I would quarter your 50’s and make sure you “hoover up” the crumbs with your mouth. I use a very small daily tablet holder (5.5” x 1.25”) and fill it up once a week. That way I don’t have the faff when it’s time to take them.

[Hidden in reply to Gingernut44]

Thanks Gingernut44 I’m going to revert back to this now as I’m pretty sure I can feel it too. X

[Hashihouseman]

It’s a common misconception that t4 is merely a storage hormone without direct effect on functional thyroid hormone levels. It is so much more, a transport intermediary with direct effect on all thyroid hormone levels via feedback signalling and with time and volume related compartmental complexities . For example if there is excessive t4 in plasma/serum the rate of intra-cellular t4 -t3 conversion is directly limited by negative feedback. Significantly, the so called half life (or rate of appearance and disappearance of each molecule) of t4 varies between the different bodily compartments where it is stored, used and transported. The overall half life of t4 we are told is 6-7 days from which most observers of this conclude that the effects of changes in t4 levels take weeks or more to have significant effect. However, the levels of circulating t4 in plasma have a half life (rate of use) of around a day not a week and 40% of all t4 is in the blood plasma compartment so 40% of total t4 has an immediacy more similar to t3 compared to that of the t4 in slow exchange tissue compartments. Anyway, the significance of that in terms of levothyroxine dosing is that thyroid metabolism is more sensitive than many believe, to circulating levels of t4 in the blood which is directly and rapidly affected by absorption of t4 from the gut. So as thyroid hormone replacement gets somewhere near optimal, excessive changes in t4 in the short term - days not weeks - can have a much more rapid clinical effect than we are led to believe from the notion that it is a slow responding storage hormone that is almost biochemically inert ! The body’s homeostatic mechanisms will be working to stabilise plasma t4 and when we are dosed with replacement t4 at levels vastly in excess of normal healthy euthyroid rates we are constantly disrupting that homeostatic response and potentially reducing free t3 for many hours in each 24 hr period. The healthy thyroid does not produce or deliver the entire 24hr requirement for t4 in 1 shot, it drip feeds it in a pulsatile flow hour by hour with minimally fluctuating rates. The paradigm for replacement t4 in physiologically abnormal amounts is a result of clinical and pharmacological conveniences and blinkered tradition. I suspect that this is holding back everybody who depends upon replacement t4 from achieving true euthyroid state but for those of us whom are suspected poor converters by way of genetic polymorphism any slow down of the rate of t4-t3 conversion such as from temporary excess of plasma t4 is even more critical. When I shifted from single dose levothyroxine to 5 times a day mini doses I was able to stop taking liothyronine for t3 replacement within weeks and my thyroid function tests (which measure plasma levels only!) were soon normal, completely euthyroid - something I never achieved with any combination of t4 and t3 at single t4 doses every 24hrs. Taking 4 or 5 doses of levothyroxine every day may seem inconvenient but it’s not as inconvenient as being on the rollercoaster of hypo/hyper thyroid effects from treatment and I have found I need pay almost no attention to effects of food etc on t4 absorption. Because the plasma compartment t4 is rapidly responsive I can feel my way around when to take a 25 mcg levothyroxine pill and whether to advance or delay or skip a dose, it’s just like eating or drinking any other vital nutrient that we need to pay some attention to, whether that’s blood sugar, protein or vitamin C. Among the other advantages of this are that it enables us to respond to naturally fluctuating demands for thyroid hormone such as temperature and activity related changes that a healthy thyroid would automatically manage but which a single unchanging daily dose of t4 will never sublimely replace.

[Hidden in reply to Hashihouseman]

Gosh thank you for this detailed response! It is interesting that a lot space T3 across the day so this is interesting. Am I right in reading that as my T4 went unusually high (just over range) from it’s usually stable mid range, I thought it was interesting that my T3 dropped when at its highest. Does this fit with what you were saying? I wondered if it was the body’s way of downgrading the T3 as too much T4 circulating. I’ve certainly found that no increase in Levo has had any impact on increasing the T3. I’m totally in agreement about the ‘hyper’ hypo shift. It’s exhausting and I can feel it shift within a day/ hours. Awful. It’s something for me to think about as in all honesty, I’m that exhausted with the lack of stable (just even the same hypo or over state) the moving rapidly between the two is what’s wiping me out the most as you just don’t know how you’re going to feel at any given point. The unpredictability!

Splitting is something a number of people do I’ve noticed even with Levo. But I’ve not heard of the micro dosing like this before. Was it something you just decided to try? Do you feel well on this and has it had a positive impact on T3 conversion? Sorry, lots of questions

🦋

[Hashihouseman in reply to Hidden]

Hi and yes what you describe does seem like the excess t4 response I have felt too. From what I’ve read it’s not that the body downgrades t3 in the face of excess t4, although I guess it’s possible, it seems that excess t4 itself slows the rate of t4-t3 conversion so the otherwise counterintuitive lack of increase in t3 we could expect from simple increases in t4 is explained…. And this is why I think mini dosing levothyroxine works because overall t4 level can be increased without short term excess which disrupts optimal conversion through t4 ubiquination feedback! That’s how I’ve seen it described in the scientific/medical papers and articles. For me even 50 mcg levothyroxine in one dose feels wrong and yet I can increase total dose by 25 mcg per day until total t4 is textbook without any adversity and it works within days not weeks. That is achieved by simply adding any extra dose needed over 24 hrs, keeping the doses 3-5 hrs apart, which doesn’t disrupt t3 and allows for adjustment of total t4, up or down…. I’m sure that it’s possible maybe even common to suffer what a skeptic may call a levothyroxine sensitivity which is actually a physiologically appropriate response to short term excess of t4. T4 dosing would therefore seem to me to have short term and long term criteria to meet i.e. optimal amount week on week and hour by hour - logically then only mini dosing and 3 monthly blood tests can achieve these optima. It’s even more logical, physiological, when you consider that the healthy thyroidal supply of t4 to the blood and then the various tissue compartments is mini or even micro dosing from within. The healthy thyroid never dumps 24 hrs supply of t4 in one 2-3 hr period which is what happens during absorption of levothyroxine from the small intestine in standard levothyroxine replacement therapy. And yes I do feel well on it and t3 conversion is significantly better, I’d go so far as to say that after trying every replacement strategy under the sun, including combination t3/t4, that mini dosing with levothyroxine only, every 4-5 hrs, has restored me almost totally normal with no side effects and no hypo/hyper rollercoaster effects from treatment. And at long last it’s as if I don’t have a thyroid problem (apart from taking the pills

[Hidden in reply to Hashihouseman]

This sounds really intriguing. I’m prepared to try it as I’m just not coping with anything right now. I’m so glad it’s worked for you and it makes sense that a spaced out dosing would more reflect what a healthy thyroid would do. As you say, not dumping a full dose at once in your system. I noticed you said re foods you’ve noticed little impact as I do tend to eat smaller snacks/ meals. Do you just take the Levo when needed without being concerned if you’ve just eaten etc?

Thank you so much for the detailed explanation. I truly appreciate your time in this.

[CaptainBeOS in reply to Hidden]

I too experienced this hourly fluctuation on T4 mono therapy and suspected that excess fT4 was the cause. When my fT4 was up in the 20's my bloods were identical to yours, but with the added bonus of no TSH suppression, horrible leg cramps and heart palpitations.

There is an interesting set of articles on this website, which cover Deiodinase Type 3

thyroidpatients.ca/2019/11/...

This mechanism essentially backs up your observations and Hashihouseman's solution. In short D3 has the effect of maintaining a "set point" in your cells. If your fT4 or fT3 goes above their set points then D3, which resides inside your cells, activates causingT4 and T3 to be cleared rapidly sending the inside of your cells into a hypo state. Tissues that don't produce their own T3, such as brain and kidney get affected most, which is why you suddenly feel so lousy.

I'm still experimenting with T4/T3 combinations, but I am very interested in this micro dosing. While I am infinitely better now that I was on T4 once a day, it still get an unpleasant afternoon crash.

[Hidden in reply to CaptainBeOS]

Thank you CaptainBeOS This is very interesting- I’m going to read the link you’ve shared. There has definitely been quite a dramatic response in my body. I’ll look into this dosing strategy- after all, I just couldn’t feel worse have nothing to lose and a long way off the ‘urgent’ Endo app. I’m hoping they are open to a trial of T3- if not, I have a private Endo lined up and if no joy there, it’ll be a TUK ‘remote’ Endo willing to prescribe. I don’t know T3 will be an answer but I need to find another medication route. In all honesty, I’ve never felt ‘well’ or myself since my first crash and starting Levo 2 years ago. I realise I’ve been hypo for many, many years. And I’ve just tolerated the ‘existing’ and ‘putting up’ as it was better than the initial 2 month illness and being completely incapacitated. I’m back there again so something HAS to change.

I really appreciate your thoughtful response. I’m just grateful I have to support on here 🙏

I’m heartened to hear you are improving overall, and the afternoon crash can be dealt with. We deserve a life.

[Hashihouseman in reply to Hidden]

Re food and levothyroxine….. even when taking 5 x 25 mcg doses every day I can avoid food and the so called no no’s like iron supplements from being too close to levothyroxine. That said if my timings for eating and levothyroxine do clash I just accept that there will be a percentage reduction in absorption for that dose - other doses will do better and overall you can feel your way. If you took every dose with a coffee you would undoubtedly see a significantly reduced efficiency of replacement but could simply take more to compensate. For ease of assessment and in respect for absorption efficiency long term I tend to get a complimentary regime of eating drinking and dosing going and stick with it. However, the benefits of mini dosing seem to outweigh any limitations from inexact absorption so I don’t worry about it, even if I take a dose with a coffee - it feels as if the thyroid feedback loops and controls are better able to function with the resulting fluctuations throughout a pulsatile replacement strategy, possibly in the same way they do when it’s coming from the thyroid itself. Routine quarterly blood tests ( ideally at least 5 hours from the last dose and at the same time every time for comparison) are essential for monitoring whether I am on track for total and free t4 and free t3 and TSH because I’m operating more instinctively not according to a strict prescription. Incidentally my TSH became normal under this regime, neither suppressed nor peaky. I base my core replacement needs on a target 2 6 10 2 clock hour time pattern, skipping the 10pm dose to give 5 x 25 which works out to be what I need month on month but I can add or skip or advance or retard the pattern as I feel I need without affecting the longer term balance and as you can see most doses are well away from food etc. I’m not a slave to it though and allow late and early dosing against that 2 6 10 2 base pattern as long as the doses are never closer than 3 hours and never within 5 hours of a blood test. The quarterly blood tests are now more affirmation than inquisition. I keep a record of every dose so I can review it if there’s a significant blood test anomaly. Sounds a bit of a faf but it’s really a very low overhead habit to record a dose taken (straight into a spread sheet on my phone in my solution to that). Incidentally, the DI03 considerations that Cap’BeOS mentions were along with excess t4 ubiquination feedback loops the first clues for me that multiple split dosing may be the answer to many common levothyroxine replacement issues.

[Hidden in reply to Hashihouseman]

Again thank you Hashihouseman. And that you also reference the same link. I’m thinking I’d start at 6am, 10, 2, 6 (I eat about 7pm) and 10pm but then there’s a gap for sleep. I’m guessing you alarm set for the 2am?? I have set alarm for my full dose previously at 4.30 so I can get up and eat at 6am, but I found I wasn’t deep sleeping and effectively losing and hour and a half each night. The gap would be (too) long from 10pm to 6am??

[Hashihouseman in reply to Hidden]

For the night time doses I tend to leave it to my natural sleep patterns which usually have me awake briefly at around 2 & 6 am. This allows the biggest gap of the cycle between 6pm and 2 am which encourages natural circadian rhythm tsh levels and alloys for blood testing before bed away from last dose 😀

[Hashihouseman in reply to Hidden]

But it probably doesn’t matter what timings you choose, whatever works the easiest while you’re experimenting. If it works for you you could go on to try different timings to see if there any advantages.,,,,

[Hidden in reply to Hashihouseman]

Yes good point thank you! Even in a 2 split as my reply to tattybogle I was going to try to get last dose late evening but not close to bed. I’m not wanting to risk any sleep disruption but realise many dose at bedtime so maybe this 10pm dose of 25mcg would be just fine! I’mReady to experiment and have read the link shared by Captain 👍 I can see how this would lead to the mini dosing.

[tattybogle in reply to Hidden]

I now split my Levo to, my usual dose is 112.5mcg , so i take 62.5mcg first thing in am, 50mcg last thing at night , since November i've added an extra 12.5 three nights a week ,making dose 118 mcg ish ... cos i had put a bit of weight on, and it seems to be working cos my trousers are looser again.

my TSH used to be 0.05 ish for many, many years , and now it seems to be more like 1 or 2 . i certainly don't feel any worse for splitting it , so i'm not intending to go back to once a day. (and in theory if TSH is a little closer to 1 than 0, then i might be getting a bit more T3 out of it, but i don't have any blood tests to prove that at the moment)

In future i might well have a play with spitting it further .... it just seems logical to me , to try and deliver it closer to the way the body does naturally .

My GP thinks i'm nut's .. but he humours me and prescribes it in 2x 50 's rather than 1 x 100 , even though it does cost them a bit more to do it that way.

[Hidden in reply to tattybogle]

So interesting tattybogle. I’m on the same dose as you and also get 50s so I’m going to give this a go tomorrow. Do the 2 split first before dividing down further. Interesting as I was functioning so much better on a TSH between 1 and 2. Perhaps closer to 1 also, but since it’s plummeted below since becoming poorly in November, and T4 over range with the thyroiditis attack, I’m not functioning. And as Hashihouseman points out, the excess T4 must impact on conversion as my T3 is usually around 4.1 (low in range) but dropped to 3 something on that blood draw. Previously I’d believed more T4 would/ might push my T3 up but no matter what I put in, it was always the same until this flair. I think I must be one of those people that doesn’t cope with high T4, close to top of range or just over. This is my hope for a trial of T3 and happy to reduce T4 accordingly.

The splitting and micro dosing of Hashihouseman makes sense as you have said re trying to mimic the body’s delivery. I know a healthy thyroid makes subtle adjustments and we can probably never replicate, the idea of one hit per day does seem strange. I’ve noticed others doing this when working in T3 alongside Levo.

Thanks for sharing this.

Whilst you don’t feel worse, do you feel any better?

[tattybogle in reply to Hidden]

Whilst you don’t feel worse, do you feel any better? i can't answer that.. life has moved on ,i do less things than i did before. i've let a lot of things go , so it's like comparing apples to oranges.... i don't 'crash' any more , but then i don't do the stuff stuff that made me crash anymore either..... . if i ever decide to try coming out of retirement, i'd find out if i really function any better or not, (don't hold your breath) .... but for now i'm enjoying being a much more relaxed version of me.

[Hidden in reply to tattybogle]

That sounds like the best plan. I’ve definitely been burning myself out not really paying enough heed to this condition. And am 18 months off being able to take early retirement at 55- just wishing it was now as I hear you!! Scaling back seems to be the only way to manage things. This attack has taught me that. I’m going through a process of acceptance and I’mNot there yet.

I’m glad you have found some way of coping. And relaxing into life with this. We have to have some kind of quality of life and adjustments clearly need to be made in order to do that I can see 🙏

[tattybogle in reply to Hidden]

I've come to realise that one of the few benefits of becoming hypo earlier than some do ,at 32, is that i've already had 20 yrs to slowly adjust my mentality around 'acceptance' and 'better quality living' and 'finding happiness in small things' ....... so now that i'm 55, i'm happily looking forward to the next 30 yrs at this pace ... if it had happened to me age 50 i'd still be really pissed off about it at 55, and would probably spend most of the next 20 yrs struggling to adjust my expectations of myself, instead of enjoying the fact that i'm not as old as 70 yet.

[Hidden in reply to tattybogle]

That is a great attitude- inspiring! Acceptance is key isn’t it? I’m in the other camp. Sick for years but diagnosed at 51- now nearly 54 and struggling with this what could be a dramatic life change. I know I’ll find a way through. Was in denial at 51- thought I’ll recover, meds will work and off I go. Normal life. 2 years on and can see this is the reality- what will be my new normal and I’m going to have to downscale my life to manage this condition.

Thank you for sharing your experience as it helps. I’m so glad to hear your positive approach it lifts me.

You never think you’ll be one of those people that needs to leave work for poor health/ medical conditions but I see that it does happen, and people survive- and thrive 🙏

[CaptainBeOS in reply to Hidden]

Do post back on here with how it goes for you

[Hidden in reply to CaptainBeOS]

Hi CaptainBeOS Thank you for checking 🙏

Well I took the plunge and I’ve started with a split am and pm like Tattybogle. Early morning and an hour before evening meal currently on day 4.

I could be imagining this or this is coincidental, but I actually feel a lot better than I did. 1st day felt my usual rubbish self but day 2, 3 and today way better. So, could be a random coincidence or my body is coping better with the split dose of Levo.

Early days so I’m going to continue for full 6 weeks.

I’ve had medichecks bloods done today and I’ll repeat in 6-8 weeks and see what they tell me. If it’s having a positive effect on T3, I’ll take the further splits Hashihouseman does and trial that.

I’ll definitely update! I thought the article was really interesting and yours and Hashihouseman’s thoughts- it just makes sense and explains what the heck that over range T4 was doing with a drop in T3.

I’m still going to pursue the T3 if I can (and if the Endo is not prepared to trial, pursue elsewhere) but my other thought was they might suggest liquid. I’d be splitting that as well if it’s offered as an option.

I’ll definitely be updating- and thank you 🙏 for support and help- I’ve been going out of my mind tbh with my thyroid status and you’re a huge help!

[CaptainBeOS in reply to Hidden]

I get my T3 on the NHS. Just be really pushy about it. I told my Endo that he would have the humiliation of permanently losing me to Natural dessicated Thryroid (which I got from Country Health and was very nice indeed) if he didn't prescribe it.

[Hidden in reply to CaptainBeOS]

Hi there Right, I’m going to be very pushy then 🤞

I did think whether I should do that genes test to see if that’s in the background re conversion. Did your Endo insist on doing this first? I heard some won’t prescribe unless it comes back positive in some trusts.

I’ve seen Country Health on TUK list- it’s my plan C

Plan A NHS Endo first (would prefer to be on the books as running up private bills is wiping me financially 2 years on)

Plan B if the NHS is a disappointment, I have private appointment booked with a highly thyroid specialist Endo, but appt not till March (I don’t know if she will be willing to prescribe T3 as well. She has amazing reviews, but no specifics re medications etc)

Plan C Country Health

Why did you come off the NDT if you don’t mind me asking? I have thought of this, but my worry is possible supply issues if you go that route but 🤷🏼‍♀️

[CaptainBeOS in reply to Hidden]

Nope, no gene test. I had side effects onT4 monotherapy from about day four after my thyroidectomy. The initial dose they started me on (150mcg) gave me horrendous side effects and heart palpitations (120bmp at rest, I kid you not - really scary stuff when you have just had major surgery). About two weeks in I thought I was going to die of a heart attack so I cut the dose down to 100mcg/day. Problem solved. Over the space of a year I found that anything over that level caused problems, but also being at that level was no good (hypo and elevated TSH, which is no good for Thyroid cancer survivors). I knew very quickly that I needed T3, but my Endo refused to give me the T3 because of the heart palpitations, even though 24 hour ECG showed no heart problems. He said the T3 would be too strong . I went to a private Endo to get T3 and he just turned out to be another NHS affiliated T4 peddler and refused to give me the T3 for the same reason. "T3 being too strong" incidentally is a ruse to avoid expensive T3 prescriptions and is complete rubbish. So I went out on a limb to Country Health and got the NDT from them. Things immediately improved. My Endo went ape-shit and tried to get me back on the T4, to which I said, "over my dead body. You say you want to help me, so give me the T3 or lose me to NDT for good". He reluctantly agreed and has been really unprofessional about it: After the initial 2 months on T4/T3 I had to go back on the NDT for three months because he botched my repeat prescription of T3. Apparently he assumed my GP could prescribe the follow ups, which is wrong and something he should have been aware of. It's a yellow list drug, which means that it has to be prescribed by a specialist OR a shared care agreement needs to be in place + 6 months stable dosing history in order for a GP to take over, neither of which had been done. It took three months of badgering him to get my follow up prescription, which gave me more time to experiment with NDT dosing, which has been very interesting. I actually ended up taking a combination of 50mcg T4 + 1.5 grains of NDT, as recommended by Country Health. (That's the equivalent of 107mcg T4 + 13.5mcg T3) and got I TSH, fT3 and fT4 in perfect range, in fact TSH was suppressed. Something that would have never happened on T4 alone, even at 150mcg of T4. I'm now trying to repeat the same success on T3, with 112.5mcg T4 + 10mcg T3. 10mcg T3 being the most I could get out of my Endo. The only reason to stop the NDT is that the T3 is free. No other reason. In fact I still have a few more experiments planned for NDT, so if my endo fails to write my next prescription, then I'm planning to give some alternate NDT doses a try.

[Hidden in reply to CaptainBeOS]

Good god I can’t believe you’ve had that battle post thyroid cancer and thyroidectomy. What the hell is wrong with these people? It sounds like you had a terrible time on the start of Levo. I had slightly over range T4 and felt like I was losing it- palps, tremors, spike in blood pressure and shaking plus a horrible electricity feeling in limbs. And my pulse rate was no where near worrying. I had no reason to complain by comparison. I was frightened and took myself to A&E as didn’t know what was going on. Your experience must have been terrifying!

I also can’t believe they created a gap in prescribing the T3- that’s negligent. I can see why you pursued other avenues with NDT. A lot of people seem to prefer it. I have a feeling I might end up on it, but I’m the same in would like my treatment to be via the NHS (while it’s still standing!), and believe it’s an entitlement really with what can be a life altering condition and on the list as a disability. I’m staggered you’ve had that battle. And appalled tbh. I’m sorry you have had this.

I totted up what I’ve spent in the last 2 months on seeking bloods (T3, antibodies etc), thyroid scan, private consultations- let’s just say it’s made my toes curl. I can’t go on like that. So many of us on here feel we have no alternative.

But I also think of many, many very sick people with poor functioning thyroid who simply have not got one single available penny to access any private investigation and it is WRONG. Health inequality, again.

But the inadequate understanding of ‘specialists’ worries me deeply.

You can be into hundreds of pounds in a private consultation to find the Endo has not got a clue and tells you you’re in range, you should be well, off you pop. Been there before.

Such a lottery.

I’m so glad you fought your corner but can see why you have other plans up your sleeve. I ,too, think T4 alone isn’t working for me and like you, if I go over 100mcg all hell breaks loose and doesn’t help the T3 anyway.

Thanks for responding it really helps get a picture of your thoughts and why you are where you are 🦋