"Suffering the Slings and Arrows of Outrageous Fortune"

We got the results of Em’s blood work…

Her vitamin D is 39.8. Obviously, that is much, MUCH better than the 6.1 that she was at in September and better than the 25.9 level in November. But, it is still not high enough and she seemed to make more progress in the first 2 months of vitamin D supplementation than she has in the last 5 months. Is it the whole cause of her fatigue? In light of the other blood work, I rather doubt it but it is likely an important piece of the puzzle.

We decided to bump her Vit. D up to 5,000 a day after her prescription ran out recently and she says she is feeling a difference. (Note that the relatively small gains made in the last 5 moths include the time that we bumped her up to 5,000 iu – now I wonder what it would have been just on the 2,000 iu a day.)  Brian very well may want to put her on the theraputic dose for a while, but if not, we will just do 5,000 on our own until we get her up above 50, preferably around 60 if we can do it.

The other blood work is for her thyroid and, although we are going to be dealing with the contrasting info that is part of treating thyroid issues, it is pretty clear that this is an issue for her. Her TSH is 4.06, her T4 is 7.6. Her T4 is smack in the middle of normal, by any standard, which vary hugely from lab to lab. Depending on which standard you go by, her TSH is barely within the upper limits of normal, elevated or significantly elevated.

The range our lab uses is .35 – 4.1, so she is just barely within the range on paper. However, many endocrinologists use a .3 – 3.0 range and, by that standard, she definitely has an elevated TSH. The most current info says that anything above 2 is elevated so, according to that standard, she is significantly elevated. So, I am going on the assumption that her results indicate that she likely has hypothroidism and her symptoms certainly back it up.

The question at the moment is, will the doctor see that her results are ‘normal’ and ignore the bigger picture or will he see that there is a real problem here and refer her. I just don’t know this doctor well enough to be able to predict, but,even  if he isn’t inclined to refer her, I know we have a couple other doctors who almost certainly will. I will be pushing hard for it because, not only could a simple prescription of synthroid vastly improve her symptoms and address the fatigue, thyroid dysfunction is also part of mito and a diagnosis would help us figure out if mito really is part of what is going on. I have felt pretty strongly that she needs to see an endocrinologist for more than a year, but none of the other doctors agree. Hopefully now I can get at least one of them to agree. We probably need a referral – our one local endo doesn’t see patients under 16 (already asked) and to get to either Riley or Cincinnati, we will need to be sent. Probably, but will look into it if no one listens.

So, it probably will not happen as quickly as I would like it to, since I prefer things to happen instantaneously, but I am not willing to wait until we get to follow up appointments in a few months to figure it out. The chance that we could actually address some of her symptoms and actually give her a chance to function is too important to be patient about.

Feeling a little overwhelmed with all of the stuff in the pipeline – MRI, gastric emptying study, cardiology appointment – but do finally feel like maybe we are making a little progress. I often feel like the little boy with his finger in the dike – holding back the flood out of sheer will, but when that is the only option it is what you do.



Comments on: "Blood Work Results" (5)

  1. Interesting about the vitamin D – I’ve been on 1000IU per day for 2 years and it’s only raised me from about 12 to 58! I’m quite surprised it’s not higher after all that …

    • I think I have read somewhere about a tendency to plateau at a less than ideal level even with significant supplementation. I don’t know if that is something that is backed up with medical data or if that is just sort of anecdotal info – probably the later. But, I think it is a real issue for a lot of people and specifically EDSers. Everything is so interconnected that it is hard to figure out what is the real problem – I guess you just have to grab a thread and start pulling until you get somewhere!

      • Jeshyr said:

        Yeah. I must tell the pharmacy to bump up the supplements a bit!

        Also can you remember where I can find the info about sodium bicarbonate levels for Diamox? I know I read it somewhere but now I have my bloods back I don’t know what the ’23’ means!!

        • 23 should be good – that is where Em usually hovers when on baking soda tablets. Different labs have different ranges but generally the bottom of the range is 21 or 22 as far as the lab is concerned. I think it is somewhat individual though – I think Em feels better when she is at least 23 and preferably higher. I think 24 is the highest we have got her level. I think when she was having problems with the Diamox not working, her bloodwork showed her at 21. As soon as we put her on the baking soda, it went up to 23 or so and the headaches went away again. If you need, just google CO2 levels and you should be able to find the lab ranges for your own reference.

          How is the Diamox going for you?

          • I don’t know if it’s working or not … I thought it was going quite well with lowering the migraines, but now I’ve had an awful crashing migraine yesterday and today which is making me doubt! On the third hand, it’s been a VERY rough week with both physical and emotional stresses going on so it was pretty miraculous that I didn’t have a huge migraine before … time will tell I guess. I track the symptoms on PatientsLikeMe and track med changes too so I can see if it helps overall.

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