Having been left more or less high and dry by doctors with absolutely no idea what to do, Edysia has been on 1/2 of grain for 3 weeks, 1 grain for 1 week, then 1 and 1/4 grain for 1 week; she felt worse on 1 and 1/4 grain so she reduced it 1 grain for further 2 weeks.
1 grain appeared not to be her dose ( blood tests: TSH 1.7, FT4 11, FT3 -4.4) and she did not feel well, so she tried to increase to 1 and 1/4 of a grain again.
She more or less immediately started to feel extreme fatigue, she was listless and couldn't even stand up, this fatigue lasted the whole day. We thought it might pass but the same thing happened yesterday too. Can an increase of 1/4 grain cause this? Is it an adrenal thing?
We have so many questions and nobody (trusted/available doctor) to ask. We are really frustrated and as I write this Edysia is sobbing in the other room. I'm just rambling really, I know that there is an element of experimentation and that a lot of patience is required but how long do you think it takes to realize that a particular form of medication isn't right for you?
Thank you
Tony
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Tony63
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It may be that the T4/T3 ratio is wrong for Edyta. Instead of increasing the desiccated thyroid dose, consider adding a small amount of T4 (i.e. levothyroxine). e.g. 25mcg T4 in addition to one grain of desiccated. Some patients find this works better for them.
Thanks Red, Edyta did suspect that might be the case. She gave Levo a go when she was first diagnosed but it disagreed with her as it contains lactose, which she is intolerant to along with various other ingredients. We have an appointment with an Endocrinologist in a months time and when we saw him last time he said he could prescribe purified levothyroxine so I think we will give it a try.
At the same time Edyta is worried that she might be converting T4 into reverse T3??
So many opinions out there it's hard to know which is right. Some people even deny that reverse T3 exists!
If the lactose is definitely a problem, then lactose free levothyroxine tablets can easily be obtained. It is imported from Germany and is much cheaper than the special purified levo that has to be made up on an individual basis. The cost of the purified capsules can be a real issue when trying to get it prescribed on the NHS.
Details of the ingredients are on the main website. Click on the purple bar that says European Lactose free levothyroxine tablets:
Any pharmacy can supply this. They just need to have an account with an appropriate importer. Mine uses IDIS and can obtain it within a couple of days.
Thanks for that I wasn't aware of those! I didn't know that the purified version was made on an individual basis either, does this mean you get the exact amount of T4,T3 etc. that you need?
No, it's not individual in that way. It simply means that if you're prescribed a dose of say 100mcg levothyroxine, they will put that into a capsule together with a specified excipient (filler). The capsules are made to order, and will still be T4 only in the recognised doses. e.g. 25mcg, 50mcg 100mcg.
Thanks Rod, I know that reverse T3 exists I just meant that whatever answer you are looking for on t'internet you'll find the polar opposite opinion too! I feel sorry for people who haven't found ThyroidUK yet! They must be struggling terribly.
Hi Tony, I'm newly on Armour and I've noticed on increases I feel much worse for quite a few days. More pain in feet, legs and joints, so much so I'm sometimes in tears with the pain. Then it passes, and by day 5 of the rise it improves a lot. The wall to wall headaches have subsided too. I think I was expecting a miracle with the first tab and it just hasn't happened. On 2 grains now and a bit of extra colour in my face and scaly dry skin improving a tiny bit. I think it's just a very long slog. I have noticed if I drink a lot of plain water I do feel a lot better. Sending my love to Edysia. XXX
if the plan of action is more T3 or T3 only then PM me as I'll explain more about T3. The T3 given here in the UK is extremely expensive on private prescription and contains lactose in the inactive ingredients. But there is alternatives which will be cheaper and lactose free. Don't want to get out of context in the thread that's why
Has Edysia had a cortisol test? I think I vaguely remember she did and that it was low, especially in the morning, but I could be confusing her with someone else (I apologise if I have).
If her cortisol is low in the morning, she may benefit from taking her first dose 1.5 hours before she would normally get up. This helps a lot of people. Some people find taking a dose at night helps for similar reasons - it helps with the production of morning cortisol.
To me, it sounds like her adrenals are being taxed. They suddenly have some T3 available to make cortisol, but they are tired. It may be as RedApple says and she may need more T4 or it could be that her adrenals are making her tired as they are now having something to work on and they are not used to it.
It is really frustrating, but rest and relaxation (nearly impossible, I know!) are really important. If she needs to lie down or even sleep then that is what she should do. Consider it like someone recovering from a nasty dose of the 'flu. They need to rest as much as possible.
Reverse T3 does exist as there is a test for it and it is entirely measurable. Also, as Rod has pointed out, there is research to prove it. If reverse T3 is the problem, which it could be, adding T4 would make this worse. She may need T3 only for now, while she is recovering. If she does decide to try adding purified thyroxine, it should not be at the same time of day as the Erfa as that would encourage it to be converted to reverse T3 ( due to the amount of T3 already present in the Erfa).
I was there was a magic answer, but everyone is so different. I hope she starts to feel better soon.
Thank you Carolyn, Edyta hasn't had a cortisol test yet but I've read what you guys re saying about a small dose of Erfa taken earlier and I think that is what we should try next. Edyta has tried it in the past but she tends to get a 'buzz' quite quickly from the Erfa and struggles to get back to sleep. I imagine swallowing the first dose with water causes it to act a little slower giving you time to get back to sleep before it starts to work?
I think that must be it. I have no trouble getting back to sleep after taking mine so perhaps the slower absorption is the key.
Just to clarify, she doesn't need to sleep after her first morning dose, only to lie in a darkened room not reading or listening to music or anything, just resting. Taking it before her usual waking time might help to regulate her sleep cycle so that she is actually sleeping when she needs to be, i.e. at night time. It might be tough and will probably take a while. I'm still getting there, but I am so much improved but being patient was very hard.
Hopefully if her cortisol starts to rise around the time she would normally get up using the circadian method, she will feel like she could go to bed slightly earlier, even if it is only 15-30 minutes earlier. It may be that eventually she will be able to gradually move her bed time earlier so that she is sleeping at more normal times. This will hopefully help her to feel better too.
A bath with Epsom salts before she normally goes to bed might help too. It contains magnesium which is easily absorbed through the skin. It is much less likely to cause side-effects when absorbed through the skin. Magnesium has the effect of reducing cortisol levels before bed and also is important for using thyroid hormones. An Epsom salt bath may help with moving her bedtime earlier too, but only move it earlier by 15 mins or so every few days. It is much more likely to be successful if done slowly. It does work. I have had to do this myself a few years ago.
So sad to read Edyta struggle. I find the same thing with dosing early morning 1 and half hours before I wake. No matter what I do I can't go back to sleep and now notice really dizzy during the day.What about B12? I know Dr's wont go there but if you have no B12 in your cells then tiredness will simply plague all day as I have lots in the blood but when HC puts Erfa into the cells then there is no B12 to support. I have read much about this. However, I realize there are other issues to consider.
I struggled getting my dose up around the same point, I was up and down with the dose like a yoyo, If i upped it I felt worse, if I put it back down within a week I felt I wasnt on enough. I definitely think its adrenal fatigue, but eventually I got the dosage up beyond this point.
I knew it was my last hope of ever feeling normal, so just upped it one day, lowered for 2 days upped again lowered for one day, over the course of around 10 days, until I got passed the point of it making me worse, and started improving again. Its really trial and error, with a bit of determination thrown in, when you dont have any medical back up to ask.
I totally agree with this as the same thing happened to me at 1.25 grains. I had to go back down for a week or two, and then try again. The next time it was usually easier. It was also about this time that I adopted the CT3M for low cortisol, and this made a HUGE difference to how I coped with increases. I wrote about this in my blogs, if you are interested. Xx
What a lovely lots of caring people you all are. So wonderful to see. Not seen a forum like it.I read your post. How I wish that were my story. I'm just about ready to give up. I've been trying to do the Thyroid thing for the past 3 years but it just gets so hard with no help from Drs here in Perth West Aust who don't seem to know how to help. I've always had armour. Had to Learn to treat adrenals first after taking Armour and feeling wiped out. I think this made my adrenals worse. Then refused HC but reconsidered as nothing else helped. I started the T3Cm Jan 13 (but had irritated stomach by thyroid meds which was H/pylori) so I stopped the T3CM to heal tum. Went back to T3CM and I started to dose 4.30 am which gave best results and now can't do it as I get so dizzy.during the day and cant go back to sleep. I swallow tabs but too stimulating. I have some Armour but same thing. I take Erfa 2 grains with HC 25mg during the day but just am so zonked I just want to give up. I worked on Saturday and it was exceptionally busy and I think the adrenline hormone is on lock mode as battling to sleep. Never struggled with sleep but for the last year have been waking due to sugar problems. Takes a couple of hours to go back. Now I hardly get any sleep. I know it is adrenals. Probably 3 rd stage I think. I read so much of people feeling overwhelmed and to be patient. Just wonder is it all worth it. There are no alternatives are there?Why is the problem there in the first place. Whoops rambling. Many kind thanks for listening.
Sorry to hear this Elaine. Yes it is so hard to sort this ourselves with little to no help from doctors.
Have you had a saliva cortisol test done? Mine showed low cortisol in the morning/day and high at night, so CT3M seemed like the right way to go for me. I have had to adjust both dose and time as the months have gone by, but it has really helped me with my vertigo/dizziness.xx
Yes i have had saliva test and cortisol low morning and night. I really did try that T3CM and the 4.30 am was great time to dose for me but the not going back to sleep is very taxing. It seemed ok at first but as the armour thyroid meds irritated my stomach I stopped and got some Erfa and silly billy me took it sublingually at 4.30 am. Wow, really came awake.I could never day dose without HC. Night time makes me too awake.I did take swallow Erfa but again seemed too stimulating and really felt dizzy during the day with adrenals. I may consider again as it is a great way to go. My temperature went up to 36.6 very quickly.Many many thanks for your kindness. It's means so much xxx
Thank you Susie, the adrenals thing is another consideration, we were wondering if Edyta was suffering from weak adrenals and increasing the dose was more than they could handle. I thought that maybe she should stay on 1 grain (which was ok we think) until they have a chance to catch up.
My adrenals settled in time, like you say, they caught up eventually, allowing me to then increase to a better dose.
But there was many nights (and days) where I sat crying thinking I was never going to get any better, and that it just wasnt working. Dont let her give up.
Perhaps she could try taking some vit c to help her adrenals. I can't see that it would do any harm and might just help. Maybe 2000mg in the morning and 2000mg at night? The morning dose is the most important though I think and make sure you get slow release vit c so it will last in the body and not all be lost in the urine. Or she could take 4000mg all at once in the morning if her stomach is not irritated by it. Hope this helps xx
I would agree with Carolyn that maybe an early dose would help. I found my cortisol levels to be very low first thing on waking. I started with quarter grain at 6.30a.m. (setting the alarm is a pain, but worth it) one and half hours before my usual waking time of 8a.m.
After a while I needed to increase to half grain to ensure that I was able to get back to sleep after the alarm and eventually found that taking it earlier improved things even more so set alarm for 5a.m.
Recently I felt I needed to increase, but when I did I felt terrible so I altered the time again and now take an early dose at 4.15a.m. This has really helped. Apparently the early dose has to be taken at some point during the 4hrs prior to waking up as this is when most cortisol is produced and obviously I need some T3 to get my cortisol up where it should be.
Perhaps Edysia could try taking a quarter grain early and then one grain later, perhaps splitting this into two doses.
I take my doses at 4.15a.m. 8.30a.m. 1p.m. and 6p.m.
Personally I tried Levo and Erfa combination initially and was very ill on this, hence persevering with Erfa which I started in July 2012 after following some very good advice on TPA UK website regarding how to take the medication (hadn't found Thyroid UK then). I even tried introducing some Levo again in January thinking I needed more T4, but was really ill again.
Sorry I don't know enough about Reverse T3 or even T3 only, but I do know that the early dose of NDT has helped as poor cortisol levels can really hold back improvement.
Hope this may be of some help.
Oh and also I was advised to swallow the early dose with water rather than taking it sublingually.
That's really interesting about swallowing the early dose with water rather than sublingually. I personally cannot stand the taste and texture of my NDT so I can't face crushing or chewing it. I was wondering why you were advised not to take sublingually.
I can't recall who advised me, but from what I remember it is something to do with the speed that the medication begins to work. I will see if I can find out a bit more and get back to you. Seems to work though.
Hi Carolyn Just to clarify its only the early dose that one should swallow not the subsequent doses which I believe should be taken sublingually. Erfa is ok. What do you take?
Hi CarolyB. If I get what you are asking about sublingual or the taking of thyroid hormone early a.m. I found that doing sublingual with Erfa was far too stimulating (after I read Paul Robinsons book later not to do sublingual early morning). I was bouncing off the wall.
Sorry to hear Edysia is so poorly - I can't offer any advice just support I hope she feels better soon. We all are sending her lots of {{{{{{hugs and support}}}}}}}. Wendy x
If you haven't already done so it might be of some help for you to read through Paul Robinson's blogs on here. Just put his name in search. I found them really useful particularly the discussion headed:-
'Adjusting the size and timing of a circadian dose of T3 containing medication'
Haven't read his book fully, but I did meet him at the Bristol meeting and gained a better understanding of the CT3M method of needing T3 early.
Thank you again Zizi! Edyta's sleep pattern is something we have to work on. We are going to order Paul Robinsons book I think and add it to the growing thyroid library! Thanks again for all your help it's really appreciated.
What a complete nightmare. Why has this poor lady been driven to such incredible lengths! Rhetorical.
Why, oh why aren't the powers that be starting from the very bottom, getting adrenals healthy enough to cope with the input of hormones sorting out good quality sleep by whatever method and then getting her nutrients right, followed by carefully planned and monitored reactions to, what are considered, volitile meds.
I do wish someone could take the whole person/system/ being into account and yet still work with medicine to provide a comfortable outcome.
Before you all shout - I know some kindly folk do do this but we all know what happens to them!
I thought my hypothyroidism was being poorly managed, but it turned out to be Addison's disease. With untreated Addison's your thyroid meds just don't get converted into any useable form, so a double whammy, My endo said he needed to treat the Addison's first because of this. Now it is being stabilised my thyroid is a bit happier, even without any thyroid meds being tweaked yet. Any of us with Hashimoto's are at risk of the other glands being affected, so if anyone is as exhausted as Edysia is, it might be Addison's, and that does need to be tackled so that the thyroid meds have a chance to work. Addison's is supposed to be rare, so they seldom check for it. I think it is a lot commoner than they think, but you need to go ito an Addison's crisis (life threatening) like I did before they look. I was lucky, my trainee doctor had just finished a stint with a really good endo, so recognised the symptoms.....my blood pressure was low, and dropping lower on standing (55/44). You won't necessarily have the tan, especially if the problem comes from the pituitary (common with us).
I have just been saying about my struggle on the latest poll.
When I was trying to find the answers I kept hearing about adrenals and then Reverse T3. I have no idea whether I had either, all I know is that I finally found that purified levothyroxine and 1 grain naturethroid does the trick for me.
I tried T3 only, Armour only, T3 and Armour, NAX etc etc which basically cost a fortune and 3 years of my life mainly housebound. Dr P and Dr S didn't find the magic solution for me but it takes so long to try each method.
It took me around 15 months to get up to my optimum dose of purified levothyroxine and 1 grain naturethroid and then I didn't feel any improvement for 6 months after that! so 5 or 6 years!
Tony you are a true friend, please just listen and be there for her. She will find the answer. We are all so different, but the answer is out there somewhere.
Hi Tony, I've been trying to find a statement about T4 and Reverse T3. It said if T4 is a certain level you can conclude whether you have reverse T3. In the meantime, I didn't know that the temperature graph could be used to test adrenals. This could possibly be the problem rather than either of the other suggestions (more T4 or T3).
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Update
Finally got some progress (I think!?) 
I guess this is progress...
Update on blood test results
Update !!!
