Hi everyone, I hope you've all been well, and have been enjoying the lovely weather we've been having lately.
Firstly, I just wanted to say the biggest thank you for all of the supportive words that were left on my last post. I know that I've already made quite a few like them in the past, but the kindness that you all show me on this forum is so deeply appreciated. I was in quite a dark place when I made that post, but I'm feeling a bit better emotionally now.
About 6 or so weeks ago, I (finally) underwent a levothyroxine absorption test to ascertain how good or bad my absorption and conversion of tablet levo is. I only just got the verdict back two days ago. The letter is very short and my consultant claims that my absorption is 'just fine', but curiously, she did not disclose any of the actual test results...Even more surprisingly, she has wordlessly reinstated my T3 prescription of 10mcg daily (the max available in Devon CCG) without admitting in the letter that my conversion is poor, or that she was wrong.
As far as endocrinology goes, I am completely fed up with the NHS. The whole testing procedure and the events leading up to it helped to cement my decision to go elsewhere, and I managed to obtain a private prescription for 4 grains of Armour, which I began taking shortly after the absorption test. My mysterious bloating is evidently starting to concern my gastroenterologist, so I had a colonoscopy and endoscopy done about 3 weeks ago (no results yet), and I am due to have another MRI tomorrow morning.
For the first time in over 3 years, some of my symptoms have started to subside being on NDT, but I suspect that it is either too early to see the full effects (4 weeks), or perhaps I may need a dose increase. I am due for a blood test in mid-July. My face is beginning to 'de-puff' (the before and after comparison is quite stark in my eyes, though it does seem to fluctuate a little), my body aches less, I am more alert and I have lost roughly 4kg since starting NDT (although I don't feel like I look any thinner, and certainly not like my old self).
We still have quite a way to go...I still don't feel like my body has quite 'revved up', so to speak. I'm no longer constipated, but my bowel seems to move very slowly, and I still feel kind of 'out of it' day to day. I have started supplementing with Betaine HCL in the interim as I didn't burp at all after doing the bicarbonate of soda test and I seem to have many symptoms of low stomach acid.
I'm curious to know if my persisting symptoms might mean that I need a dose increase/more T3? Or if I should be patient for a bit longer...
Thank you for reading this far
Written by
lau99
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Hi lau99, I’m delighted that you are feeling stronger than you did in your last post. I would definitely press for copies of the results of all the tests you’ve had (eg Levo absorption); you are legally entitled to these.
If your FT3 is within range when you next retest your thyroid levels. It may be worth adding a little more Liothyronine (eg 2.5mcg) to see if this helps. For me, the addition of Liothyronine to my Levothyroxine helped reduce some of the eye swelling associated with TED.
Thank you, Buddy, and thank you so much for your kind and selfless messages you sent me around the time of my last post, as well. I think I will ask for those results, because she evidently has a very different idea of what 'fine' looks like compared to pretty much everyone else on here...I don't have the energy to be super annoyed at the arrogance displayed in her bare-minimum letter, and while unsurprising, it is quite telling.
I'll keep that in mind, thank you I imagine it's the added T3 that I've been missing for the last 3 years that is possibly making the most difference and, it is I guess somewhat validating to have the script given back to me - I guess my symptoms aren't in my head after all.
Well I think we know you have absorption issues and I think we know you'll need more than 10 mcg T3 to restore your health and wellbeing and to receive a letter saying nothing is the last straw.
As your stomach issues ease and resolve your absorption of the Armour should improve and you may find you 'll need to adjust your dose down a little, or not, we wait to find out.
Did you build up to 4 grains or was it a straight swop, and are you splitting this dose or taking it all at once.
NDT is the most complete thyroid hormone replacement and contains all the same known hormones as that of the human gland so personally I just think it makes sense to replace like with like if at all possible.
I seem to be ok on a relatively low dose and found my symptoms continued improve over several months, and the last surprise was that I seemed to have lost around 2 dress sizes in the process.
I'm still wearing most of the same clothes as i keep thinking next week, it may not work, and I'll be back at square one - I know crazy thoughts, but wanted to try and make you smile.
NDT was the successful treatment for hypothyroidism for over 100 years and used long before the science of the blood tests and guidelines and ranges, and you simply dose to the relief of symptoms.
You'll likely have a low suppressed TSH :
You'll likely have a lower T4 than when on Levothyroxine :
But you should have a proportionately higher level of T3 and you track on the T3 if you track anything at all.
I take just one dose at around 3 in the morning to dovetail in with the circadian rhythm of the body and arrange a blood test for around 12 hours later - my T3 can be just over range but if I eat breakfast, just coffee and a piece of toast it puts me into the top of the range, and I have no hyper type symptoms and if anything run myself slightly hypo.
You can monitor your blood pressure, pulse and temperature twice daily to track symptoms yourself as you go through this process.
My pulse and blood pressure remained stable and my temperature crept up from 35.4 to 36.6 where it tends to hover most days now, some 4 years in to self medicating.
Glad you have decided to take yourself out of this NHS cul de sac and hope you can now see the road ahead and a way forward
I definitely agree - even if my poor absorption is intermittent or because of some excipient in the Levo, some of my past blood results to date (in fact, most of them!) just don't make any sense otherwise. My T3 has never been past lower mid-range at any time since TT. That's ridiculous, and I'm not putting up with any more doctors who don't care about that anymore. I think I'd have had much better chances if I was given NDT straight after the operation, but that's pretty unrealistic, I guess.
I initially tapered onto the full 4 grains from 1 grain in the morning and 1 grain in the evening for about a week, then 2 grains in the morning and 1 grain in the evening, and now 4 grains for the past 2 weeks, since I never felt any side-effects or signs of going hyper. I was more emotional in the first week of being on Armour, but those feelings quickly subsided.
You're right - that did make me smile I'm thankful that being hypo hasn't made me overweight, but I just feel unrecognisable. I imagine that because the weight gain isn't mostly fat, that's why I feel like it just...doesn't look right to me. I just want to get to a place where I don't look in the mirror and see 'thyroid disease' anymore. Hopefully I'm on the right track!
The fact that I'm seeing some positive changes is certainly empowering. I can only hope that they continue and I feel like 'me' again.
Hi lau99 So pleased you're doing better than you were, now you've had some NDT.
The feeling of taking back some control for yourself instead of being dictated too will no doubt have helped too.
I haven't used NDT , but i would say as a general principle for any thyroid hormone changes , 4 weeks is bit too soon to know how good that dose will be when it's really settled in .
If you have seen initial promising improvements on 4 grains in the first 4 weeks, then rather than change anything just yet , i would give it at least another month on current dose to see if these improvements will continue to build slowly.
when i change Levo dose, the first 4/5 weeks are full of all sorts of changes , some good some not so good , but if the dose was about 'right' some stability for the next couple of months allows the good effects to keep getting better and that brings other improvements in other areas with time, as everything starts to work together .
I see a lot of people come through here saying "it feels a bit better , but it's not good enough yet, so i will increase.... ".and very often the next time they post ,it has all gone wrong again. ... I swear if they'd just left well alone for another month or so it would have continued to get 'more better'.
Thank you, tattybogle I think you're probably right - after all, I've waited this long to start feeling well again, what's a little while longer? I'm pleasantly surprised to see that the NDT so far hasn't made anything worse. I'll do my best to keep being patient and will continue monitoring any physical changes/improvements that I notice.
I worked my way up to the total 4 grains roughly a week at a time, as I haven't had any unpleasant symptoms or side-effects whilst being on NDT (except that I was particularly sad/emotional during my first week on it). I currently take 2 grains first thing in the morning, and 2 grains last thing at night, a minimum of 3 hours after my last meal. My vitamins probably haven't been tested since around this time last year, but I am due to have a full thyroid and vitamin panel in mid-July.
I'm glad you are starting to feel somewhat better. I really want to go down the NDT route but really can't afford it. I to get bloating, mainly on the right side under my ribs, can be very painful. It got better when I stoped taking levo with lactose in it, changed to Aristo but I'm struggling with it again and I don't know why. It doesn't seem to matter what I eat.
I hope you find some answers.
I had a private appointment with a GP at work who thinks maybe when I had RAI it damaged my parathyroids, so I'm trying to get tested for that, but as we all know, trying to get in the drs now days is a nightmare.
Hi Hookie, thank you so much. I hope I continue to improve so that I can start recovering emotionally from this ordeal. The bloating is really something, isn't it No one has been able to figure it out for me, yet. I'm still bloated as we speak - haven't seen my stomach flat in over 3 years now...I hope you find some answers too.
Hmm, that might be something...as far as I'm aware, my parathyroids are still fine as the surgeon was careful to avoid them, but I don't truly know for sure as no one (medical) really bothers with you once you've become hypothyroid (unless you twist their arm over several months at least...)
I truly think the bloating is levo as I was fine until I went on them, it was like it was overnight it happened and lactose def makes it worse, especially chocolate. Can I ask how you got your prescription for NDT please and how much you pay and for how many if you don't mind me asking?
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I'm so very glad to hear some more positive news from you.
You haven't been given enough information from the endo in the letter, and probably in the past. You do have the right to ask for your hospital records. I asked for mine last year, from every department I'd attended at my local hospital since 1989!! It was quite enlightening - I read all sorts of things that were never included on letters to me, or told to me in appointments.
You have to email the data controller at the hospital/s you attend. They have no right to refuse! And they are free. I think this is the link you'd need:
Thank you, TaraJR I will definitely be asking to see my medical records - if not to see what my current Dr is hiding/omitting, then at the very least to see what they've written about me in there that seems to make all of my new doctors approach me with such hostility
You may find useful information that you haven't been told before. I did! And all your test results should be there too.
It only took about 3 weeks for mine to come through and I was asking for 4 departments from 1988 onwards! So yours will be less for them to gather I imagine
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No one has been able to figure it out for me, yet. I'm still bloated as we speak - haven't seen my stomach flat in over 3 years now...I hope you find some answers too.
Update following 1st endocrinology appt
Update
Update
Update on Update 🤨
T3 update for @relentless
