Recently The Husband (as he’s affectionately known) returned a high TSH with the GP. Being a hashis sufferer myself, the obvious thing was to go down the private testing route, look at vitamins, antibodies... and you diagnosed him hashis with a TSH over 10 when you saw those - so clearly in the game for medication.
The GP is doing an NHS test tomorrow to confirm private results. Meantime, the poor husband is v symptomatic and I’m thinking of starting him on levo right after the test tomorrow because I am an impatient cow and it’s tough looking at his hashis hangdog face when I can do something about it! The poor chap needs help!
So, given he has no known heart conditions and given that, as a hashis woman myself, I have some spare levo, if he was yours would you whack 50 mcg down his throat after the test tomorrow until the NHS caught up... or more... or none? Dosing by weight suggests he’ll eventually need 150 mcg... And you’re not wrong, me thinks, so may as well get started...
On this subject I also note there is a variance in opinion, so it is likely that as he is under 65 with no known heart condition, they may want to start him at 150 mcg. Dosage arrived at because it is 1.6 mcg per
KG of body weight... or is he better starting slowly?
Meantime The Husband says “whatever you think, The Wife”. WWYD?!
Thank you!
Lotika.
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Lotika
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Loved reading this. I’ve never met you but I’ve conjured a fantastic image of how you would say all of this in my head ha ha
So with my local GP surgery and blood testing the bloods come back the next day. So Id have bunged an appt in with GP for Wednesday am and on that call, armed with my NICE guidelines, I’d be pushing for the latter (ie dosing to body weight) and go from there. Doesn’t seem long to wait another 2 days.
So, he exists on a diet of meat and beer and his B12 is low (and fT4 was about 12.1 on a range where the lowest was 12) which kinda confirms hashis for me... His B12 should be through the roof!
I know it’s only a couple of days, but I hate that he has this too!! We agree that we don’t need to worry about him having my experience (2.5 yrs to diagnosis, still not sure after 3 more years if I’m adequately medicated) because my experience means we are ahead of the game... but he’s complaining of joint pain and brain fog and I just feel so sorry for him!! And I’m the most impatient person I ever met...
It should be about 48 hrs for GP to return tests - but then who knows how long for the prescription etc? I’m thinking... I can spare him a day or two of rubbish!
Ferritin only just within range. Again, looks hashis as he eats a lot of red meat and steals my vitamins.. which is why his D is ok!!
I know - I think it’s because I’m following you I got notified. And I’m sat here reading paul robinsons t3 book with nothing much else to do. My life is super exciting. Ha ha.
And we both know we’re both impatient - otherwise I wouldn’t be having t3 issues quite so badly. I’m sure some other responsible people will be along soon.
That’s unusual for a man to have low ferritin isn’t it. Has he done an iron panel?
Sounds like he needs to nick a few more of your supplements...
He hasn’t done a full iron panel, but is rather enjoying “liver, bacon and onion Tuesdays” as it had become!
Is Paul Robinson’s T3 book any good? Husband is dispatched to blood test tomorrow with pill box of 150 mcg levo in his pocket and it’s up to him in the meantime whether he takes all, some, none... ! As long as he does it after... I honestly can’t see why it would be wrong in the face of the numbers but medicating Significant Others is a new ball game! Bad enough trying to medicate myself!
I’ve literally only just started reading it - it was delivered today. But I’ve been reading the supplement section and can’t argue with anything I’ve read so far
I would say ask me again in a week or something but I read very slowly so you may have to wait a while for a considered review
I would say one thing, compared with some other books I’ve read on the subject, he does write in a way that is easy to read and understand which I am grateful for
Pffft-ing aside and not put off by wine, I’d kinda go with your thinking... honestly I don’t see much downside to medicating. The only big one is if they want to redraw bloods for some reason...
Dosing by weight suggests he’ll eventually need 150 mcg...
Dosing by weight, as far as I am concerned, is inappropriate for starting treatment of someone with significant working thyroid capacity.
I dose significantly below what the 1.6 micrograms per kilogram would imply.
Similarly, starting very low, and seeing someone start to function - but run out halfway through the day is wrong.
Somewhere between the two - and without any target end dose - seems more sensible. Start low. Adjust slowly, thoughtfully, and as needed. With adequate testing.
Personally I’d be advising him to get his vitamin levels up first to optimal, adding in selenium to a good vitamin b and continuing with good work on the iron. I would also go strictly gluten free. Do this before levo. That’s what I would do if he was my husband/kid/loved one.
I hear you both, but B12 and ferritin both within NHS range just low on ours, both types of hashis antibodies, TSH 10.1., fT4 at the bottom of range, Vit D fine as he helps himself to handfuls of my vitamins unless banned before a thyroid blood test, so the results are him with vitamins already. I haven’t heard of anyone fixing hashis with vitamins once TSH is over 10, but it seems likely that I confused things by not being clear enough on the B12 previously.
Agree GF could help a little with vitamin uptake but I’m unable to persuade him to try it for even a week. Boo. But his choice.
But... even then... it feels more likely that hashis is causing the vitamin problem (low stomach acid) rather than the other way around? Unless we think he could be coeliac and this is causing low vitamins, which is in turn causing a TSH of 10 and he could have both (hence high antibodies) but wouldn’t necessarily have a high TSH and low fT4 if we fixed the coeliac / gluten issue? I don’t know anything about the interplay between hashis and coeliac other than they’re both autoimmune so finding both in the same place is not unlikely? I feel like I have now totally confused the issue! But I do see the point in testing for coeliac disease!
Does he have issues with digestion? Absolutely crucial to get that sorted. As @slowdragon suggests getting coeliac test done is important. If your hubbie tries GF for a week he might feel a lot better and be encouraged to continue with it. Thyroxin is only part of the solution unfortunately. Wish it was. Taken me years to realise I can’t just take a pill to solve my various health issues. Sorting my gut out has been key.
Just wanted to add resist starting at 150, it'll be a tremendous shock to his system. I started at 50 and gradually increased to 100. Eventually, having an extra 25 on mon, wed, Fri, which seems like the right dose.
testosterone protects men from autoimmune disorders such as hashimotos when their testosterone is low they can get hashimotos, have they tested his testosterone?
I don't think it's a good idea to give him your levothyroxine
Lotika, you’re hilarious but no, no you can’t just be all gun ho! Lol There’s a system in place for very good reasons and those of us that have gone ‘off piste’ have only done that after we exhausted every Avenue.
Don’t forgot that for the majority (a huge percentage) of those with thyroid condition do very well with minimal treatment, it’s only when a smaller minority of patients don’t do well that the NHS and professionals at large get their knickers in a twist and start blaming us.
So wait for the NHS test and for hubby’s GP to get him started, patience is needed no matter who’s in charge of treatment.
I hope he’s not started on 25mcg, I would get him to push for a starter dose of 50mcg as he’s fit and healthy.
But in my defence, I was one of those badly let down by this system - undiagnosed for 2.5 years whilst symptomatic and under the care of endos for another condition, denied T3 for a further 3 years by the same endos, who have now prescribed it... and it is so obvious to me that I needed it all along that I am hopping mad rather than grateful! Effectively I’ve been kept in suboptimal health by the system for 5.5 years and I am now both untrusting of it and highly impatient with it regarding anything to do with thyroid! Part of the reason the system let me down is that I trusted it. It’s a tough lesson and I can see that if we had designed a situation to push my buttons we couldn’t have done much better than this... unless we involved Donald Trump or something!
He won’t get started on 25 mcg by the doctor - I am on it and he has had full training on what to say when the GP calls with the results!! 🤣🤣
No defence needed you don’t have to justify yourself here 🤗
My story is quite similar, 10yrs on Levo, never optimal, life like a rollercoaster. Finally added T3, 2yrs ago, never been happier.
I get mine privately and have yet to start the fight to get it on NHS after that Endo said she would never prescribe it and that taking T3 is dangerous, like steroids 😩 And yet here I am 2yrs later, optimal and healthier than ever.
I do not trust medical professionals, none, absolutely none of them. They were awful when I was a child, they were awful when I had my children and I dislike them passionately.
However, if hubby can get Levo on the NHS then that would be easiest. If you need to top him up after he gets going (cause they only test by TSH) then so be it.
I am very naughty too! Lol I did not introduce T3 slowly, i did not first lower my Levo, I did not sort out my Vits + minerals first. I did it all at once! 🤪😂
The rollercoaster sounds like a good description of life before T3 for poor converters!
I am sorry about your local endo though. And hopeful that I have the poster child of good conversion on my hands in the husband. GP is quite good at testing TSH and fT4, so that is something... once we have got him looking decent in the fT4 stakes, we will test fT3 privately just to make sure... Wish I’d done that years ago. At least we know what we’re dealing with!
No, I didn’t get vitamins optimally sorted before starting T3 either... I was taking lots of supplements and stuff (half of them the wrong ones!) and didn’t expect to land the trial. And I was a bit stuck with who and what to believe... and believed the doctors over people on an internet chat board... which sounds reasonable enough, except it was wrong!
Just another thought - your husband might be having problems with other hormones eg testosterone or cortisol and problem is if you give him thyroxin it could tip them out even more. Hence why it’s important to start with diet and supplements first.
Thank you. I can see the mileage in having testosterone and coeliac tested.
If I (and indeed when I) posted his numbers and vits and asked for help, people would (and did) say he has hashis and it needs medicating, though. We definitely found it hard to believe because both of us having it seems a bit weird but not impossible. And that’s why I asked the board to look at his results in an earlier post and didn’t attempt to lead the conversation when I did so, or offer my own interpretation, just to be sure others saw what I saw. And he has hashis symptoms.
This has turned into the most strange thread. I don’t think I’ve seen the board tell anybody with hashis that maybe it doesn’t need medicating once TSH is over 10 and the person is symptomatic and that maybe vitamins and diet will fix it! Perhaps I haven’t been hanging around for long enough or perhaps I have misunderstood.
The likely reason people are saying this is because I was thinking about jump-starting the GP, which has caused some uneasiness, quite understandably, and therefore elicited some potential reasons as to why the thyroid numbers and antibodies could be somehow unreflective of the situation.
All this having been said, I will certainly Google the testosterone thing and mention to Husband to mention to GP if it looks like there is mileage and investigate whether there is some interplay between coeliac and high TSH / thyroid antibodies. It’s all a good learning curve and who is to say that it might not be the case after all!
my (sober) two penneth... i don't think anyone is saying "it doesn't look like he needs thyroid hormone " But several, including me (now i'm sober), would say...... Wait for GP bloods to come back and Levo to be prescribed officially , just in case of 'sods law' intervening.
And also , (notwithsanding the obvious need to 'get on with it' and not mess about on too low a dose for too long.)... even I think that going straight in at estimated full dose is a bad idea,
If it was me ....i'd want to get to the region of 100mcg without wasting too much time, and from then on i'd be extremely slow and cautious , using 25mcg . then 12.5mcg increments to fine tune, and leaving at least a full 5 weeks to assess results, and preferably more like 8.
But then i would say that , cos i'm usually methodical and cautious ... apart from when i'm not...
but from own "put my dose up to what i want" experience after diagnosis... i do wonder in hindsight if i overshot by going from 100 to 150, and might have always done fine on somewhere in between and could have kept my TSH a little higher than where it ended up , but i never really gave it long enough to be sure , back then i though that i could tell what a dose felt like within about 3 weeks , but nowadays i think 'how i feel' on a dose still changes slowly for several weeks.
( My TSH stayed at 2.5 ish on 50/ 100/150, but when i went over 150 , my TSH dropped to 0.001 and never came back up much ... spent 15 yrs at 0.05 ish on 150mcg.
I wonder if i 'down-regulated' it ?
And TSH does have a role in conversion of T4 to T3, and production of thyroidal T3, so some TSH is a good idea , so i might have got more T3 out of my levo if my TSH had been a bit higher)
All of which is what i would have written last night.... but if i HAD written it last night it would not have made any sense at all
If he does go gluten-free after coeliac test tell him there are alternatives to a lot of stuff that is as good if not better than the ‘rubbish’ they sell us from supermarkets. Ive already found onion bhajis easy to make in big batches and freeze down and better than the pappy wheat laden versions from deli counters. Also onion rings ! With lots of flavour. I’ve been testing them on our great nieces for mainstream consumption- you don’t even have to cook ‘separately’ these recipes are great for everyone 😊👍
I did wonder if I was misunderstanding something re the vitamins!
We intend that GP should prescribe full replacement dose to start with and then we can work around the 100 mark and are not in hock to the GP on raises. (But mostly because spare levo is handy and GP dispenses it like it’s blooming fentanyl, hence my accidental change of brand this week!) GP likes a good blood test (same GP I use) so will be helpful with TSH and fT4 testing certainly.
I see that former you shared my feeling about 3 weeks being long enough to know how you feel - that is funny! I think I might have felt better last week than the previous 3 on this dose, for once! Not certain that it wasn’t the nice weather, mind - I forget what a difference it makes until we see some. Doing a private test at 6 weeks (next week) and an NHS one at 8, so I am curious to see my numbers. I’m no longer so sure that I’ll see the need for a rise in levo, which is something I’d been quite convinced about until 3 or 4 days ago!
Very interesting to read your experience with dose changes - thank you!
I ain’t gonna lie (and no prizes for guessing!) we started him on the levo today because our perception is that the potential risk is small (GP loses test result or finds another reason to do nothing except retest again!) and the potential reward of getting started outweighs it, as we see it. Went in at 100 mcg thinking it represented the reasonable lowest place to start. Husband reports “feeling quite well - for a Monday” and “certainly not feeling worse”.
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you don’t have to justify yourself here 🤗 
Update 
So fed up and so confused 😢 Have I been misdiagnosed? 
New GP agreed to trial extra 25 mcg of T4 - advice urgently needed please (heart palpitations, sweating but good digestion?)
What do I do know??
