Hello
I was at the Endos today and he insisted that an alternating dose would not produce a reliable TSH reading.
This dose consisted of the following:
- 3 alternate days of 112
- 4 alternate days of 125
I mentioned that a doctor had advised that but he told me that he didn't care what other doctors said. I also found it puzzling as I have posted on here about dosages and received many and detailed variations of weekly T4 Levo dosages.
I would, yet again, appreciate your insights.
Many thanks 
Does your doctor realize that T4 is a storage hormone with a half life of two weeks? That 12 1/2 mcg. difference would probably not be noticed by your pituitary (which produces TSH) for weeks.
Thanks, I thought it was nonsense for precisely that reason. I'm so glad this site exists...
Hi NadeNud
I used to be on thyroxin. I was always having to adjust my dosage because my body reacted with each different brand that the pharmacist gave me. Just re read. They gave a different brand each time it depended on what they had been given. Anyway even when I was given eltroxin I took different doses on different days because my endo and GP said it builds up in your body. I don't know all of the organs it's stored in. I know it works well like this. With each brand I took I altered the dose but also altered daily. I know it works because each time I changed I used to get three to four weeks of the most aweful restless leg syndrome it used to go on all day and evening. Then would settle down. When I moved to T3 it was about here months before the thyroxin left my body. I knew it had left as I was incredibly fatigued, dry hair and constipation it was pretty much over night. What I am trying to say is it sits in the body for ages. On three occasions I forgot my thyroxin and it was about six days later and the effects from the week before would hit me. X
NadeNud, I was advised by the Endocrinologist that I see to alternate my dose every other day. He never mentioned anything about unreliable TSH readings.
I agree with your current endo that you should not be changing your dose, but should pick one. Why? Because the deiodinase enzymes that do the conversion adjust up or down based on the availability of T4 and T3. It's like they take a reading, and then determine whether they have to convert a little or a lot. This might explain it better: tiredthyroid.com/blog/2014/...
HIFL, TSH and FT3 fluctuate according to circadian rhythms so wouldn't that mean deiodinase enzymes fluctuate similarly, converting according to circadian levels and dose?
I would think the conversion enzymes follow the circadian rhythm in a normal person, one who produces their own hormone in a steady state throughout the day. Someone taking the same dose manually every day replicates this. But someone who takes a different dose daily would "confuse" the system, I would think. Conversion is supposed to increase (D2) when hypo, and decrease when hyper.
Personally, I know people who said their hair loss was constant when they kept changing doses. Once they stuck to a dose, it started to come back. Hair is extremely sensitive to dose changes.
Hi HiFl, I think the enzymes work at the cellular level and not so much at the serum level if I am reading this correctly (which is what would be affected).
Because it is the activity of these deiodinases and transport of T4 and T3 into the cell that determines tissue and cellular thyroid levels and not serum thyroid levels, serum thyroid hormone levels may not necessarily predict tissue thyroid levels under a variety of physiologic conditions.
Yes, the enzymes work at the cellular level, but they pull the hormone out of the serum. T4 is one of the strongest inhibitors of the D2 conversion enzyme, which is why giving someone more and more T4 usually doesn't help much. It lowers percentage conversion to T3. At some point, it's best to supplement a little T3, rather than keep raising T4.
First time I've heard that, Nade. Doesn't mean he isn't correct but alternate dosing is commonly recommended by GPs and endos. What did he suggest you do instead?
He said I must stick to a constant dose...
Nade, that means you will be slightly undermedicated on the lower dose or slightly over dosed on the higher dose. Not very helpful. How do you feel on the alternating dose?
I had crashed on 100 and then self-medicated and was too high on my last blood test which was 5 weeks ago.
After that test I took 125 for 9 days but became too hot so I reduced it to the alternating dose. As he'd recommended 125 he felt I hadn't stuck to it so the TSH result would be invalid....
Without looking at the results from the new dose he recommended 75 (based on the result from 5 weeks ago) but I refused as I crashed 3 times on 100. He then tried to tell me that I expected to feel ill but that wasnt true as I'd actually thought I was at the right dose...
At the moment I feel ok but I think I might be a bit high as I have aches in my shoulders and lefs (which I've experienced befor on high doses) which is why I want my blood results. He also refused them until he'd written a report so I couldn't examine the T3 and T4. I could tell his whole practice thought I was a crazy woman!
Nade, 9 days on the higher dose isn't likely to give a valid TSH result but it sounds a little spiteful to suggest reducing your dose to 75mcg when you've told him you weren't well on 100mcg. Post your results before making any changes.
Yes, it was unbelievable as he was also basing it on a result from over 5 weeks ago....and I had to show him a high TSH result (24), caused by another doctor who thought 50 would be good for someone with no thyroidectomy.
I had all my blood results in a folder which showed my history but he wasn't at all curious. But at least I had something which was evidence based...I also think he should have contacted me 5 weeks ago if he wanted that kind of reduction...
Is there any such things as a reliable TSH reading? TSH varies according to the time of day and the time of year - up to 75% over the course of a day. It's not static and lots of people take alternating doses - T4 takes ages to influence anything - a change in dose takes about 2 weeks to have any effect. Does the doc know how the thyroid works? It's your Free T3 and T4 that are important, not TSH.
During the 20 years or so that I took T4 I always felt best when on an alternating dose. The TSH gives an average indicator for the last couple of months. I think you need a better Endo!
I find alternating 100 and 125 is about right for me (I have no thyroid).
Thanks for the teply. I'm waiting for the next results but I want to try 112.
However, I might have to achieve that amount by taking 100 and 125 alternately as it looks as if this Endo only wants to prescribe 75!
I also have no thyroid and I'm never going to let anyone put me under 100 again as I never felt so awful in my body. It also took a long time to recover properly.
Hi NadeNud, I too have no thyroid function due to destruction with RAI. I don't think much of your Endo 75 sounds way too low. How's your GP mine knew how badly I reacted to each different thyroxin brand and was always adjusting the dose. He pretty much let me tell him what I needed. We know what we need and how our body and mind feel. Dig your heels in. Your Endo must be one of them that try's to keep the bloods just in range. Xx
A doctor last year cut my dose to 50, insisting it was the only way to treat me! I subsequently had a TSH of 24 and no longer blindly trust 'professionals'....This Endo wouldn't show me my blood report, saying he needs to write a cover letter first....it seemed to me he wanted to keep authority. I suppose a lot of patients don't question their opinions and rely on others to know their condition....I can't believe I was so naive after my thyroidectomy...
Hi NadeNud
When I joined this site I was in such a brain fuddle I couldn't make sence of what I was reading. Gradually I gained an understanding of my condition. I also realised that I needed to help myself as although my GP was good if a person has never experienced thyroid disease how on earth can they truly know how your feeling. I also make sure that I get a copy of my bloods. I now have a folder full. It's your right. Each time your surgery do your bloods ask for a copy. The receptionist won't usually give them up. You need to ask the GP to pop a note on to say you can gave a copy. Just direct the receptionist to the note. There are heaps if really knowledgely people on this site. If you pop your results with ranges on you will get lots of super advice. It's just so important to make sure you get enough of the right medication. If you have to return to the endo reqest an alternative you can also ask for a second opinion. That's also your right. Keep strong. Xx
Yes, I asked for 2 sets of results but he said he needs to write a cover letter. I will ask again more insistently, it's the first time a doctor has not allowed me to look at them since I educated myself more on this condition...
I now also keep a folder, which helped me argue against a ludicrously low dose he suggested...
He also aruged that I was expecting to crash but I had truly thought I stabilised....it's really unbelievable and they also make you feel like you're crazy for disagreeing with their 'authority'. I could see all the staff regarding me with dismay but I'd like to ask them if they'd ever experienced hypothyroidism and relied on a medicine to stay alive....
I am not meaning to pull you up on arithmetic or be pedantic - but...
If you take two different doses - one for four days, the other for three days, then sometimes you will take the higher dose two days running!
E.g.
Dose A - Mon, Wed, Fri, Sun
Dose B - Tues, Thur, Sat
So you have dose A on Sunday and Monday. If it works - that is fine! But to avoid that, you could simply alternate doses every day, not "resetting" on Monday. So, in a fortnight, you would take dose A for seven days, and dose B for the other seven days!
(It would only really matter if you found that it made a difference to you. Some people seem to notice the tiniest changes when others do not.)
Rod
Alternate doses or brand change?
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