B1/ question: Question about b12. I was dx’d hypo... - Thyroid UK

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B1/ question

phirestar
phirestar

Question about b12. I was dx’d hypo in 2015 w tsh of 12.4 at 65. I finally got antibodies tested 8 months later and this resulted in Hashimoto dx. The results of my b12 are:

11/15 799 (200-900)

10/17 677 (200-1100)

11/18 468 (200-1100)

My understanding is that w a tsh that high, I would have been hypo for some number of years prior to this tsh value. Research suggests that b12 is stored apx for 3-5 years before one begins to go through the ‘stores’. My question is is a decline of b12 related to being hypo or having Hashimoto?

12 Replies
oldestnewest

Could be diet related in that you are not absorbing B12 from foods ... Are you supplementing ?

phirestar
phirestar
in reply to Marz

My diet has been consistent. The 899 was no supplements. I just started supplements in the last month. I don’t seem to have gut issues and am asymptomatic.

It could possibly be related in two ways:

1) Hashi's is an autoimmune disease. If you have one autoimmune disease, the odds are you will develop others. Have you been tested for Pernicious Anemia?

2) Hypos often have low stomach acid, meaning that the have difficulty digesting food and absorbing the nutrients.

You probably did have Hashi's for a long time before it became noticeable. It's a slow developing disease. But, a TSH of 12.4 is not that high. And, the level of TSH is not indicative of the length of time you've been hypo. By all accounts, I've been hypo since I was about 8, but when I was diagnosed at 55, my TSH was only about 11/13, can't remember exactly. However, in 2013, for reasons I won't go into here, I stopped my thyroid hormone replacement for 6 months. At the end of that six months, my TSH was about 45. The TSH will fluctuate, anyway, with Hashi's. :)

phirestar
phirestar
in reply to greygoose

I checked the symptoms for pernicious anemia and don’t seem to have those. Dx hypo off lab and 8+ months later hashi. I had horrible reactions to mylan and synthroid levo for just over a year. All were firsts at 65/66. I’ve been on hypoallergenic meds for the last 2+ years and no recurrence of reactions. My blood panel is fine. I’m collecting AID that are a bit uncommon for my age and no prior history. I’m pending a dx for APS and when I jumped down the rabbit hole for this, I sprouted a lovely rash on the sides of my face, biopsied September and DLE (localized). My ANA was negative in March, the ANA done w the second round of labs for DLE and APS was positive, speckled 1:160 and a completely negative cascade. Referrals for APS started in May and 3 specialists refused to see me bc I feel fine. I’m still stuck in referral quagmire but I guess this is unusual enough that I’ve been referred to UCSF and that’s where I’m stuck now. My docs consider my labs wonky and have told me I’m a complete puzzle, I guess bc I don’t profile according to protocol. I’ve watched the b12 since the first test which was in the middle of my med reactions and I was curious about the decline (possibly going through stores) which in theory started after the med reactions and and hashi dx. I had a couple of docs tell me that I’d probably been hypo for around 10 years w a tsh of 12.4. This is pretty confusing for me bc I have an unremarkable medical history prior to starting the thyroid meds and it took about 3 years for me to wrap my head around my wonky numbers and asymptotic status.

greygoose
greygoose
in reply to phirestar

Well, perhaps if you posted those wonky numbers - results and ranges - people might be able to help you understand them. Most things thyroid are a puzzle for doctors, because they don't learn much about it in med school. :)

phirestar
phirestar
in reply to greygoose

I’ll see if I can paste them in here. May take me a bit to get them done.

phirestar
phirestar
in reply to greygoose

I’m on an iPhone and can’t copy/paste.

greygoose
greygoose
in reply to phirestar

Can you not type them in?

phirestar
phirestar
in reply to greygoose

I could but it’s the multiple labs in combination that are thought to be wonky w my only symptom being the visual DLE which I think I self induced due to extreme stress and anxiety bc I’d never had any doc refuse to see me bc I feel fine but manifest odd/positive labs. I did my genetics bc i didn’t have symptoms to chase labs. During this time (March to September) my tsh went from 2.27 to 59 , my frees tanked, my ft3 went from 3.7 to 2.8, t4 from 1.37 to .7 , rt3 from 18 to 8 in September. The good labs were in March along w a negative ANA, positive DRVVT and negative PPTla. DS dna has been constantly negative. In September the DRVVT is positive, PPTla negative, igm positive for antibodies associated w APS, the rest were negative I had high cholesterol in March and with the ‘bad’ thyroid panel’ a good cholesterol panel w increased HDL - the biggest change. A compliment c3 and 4 was done in September and my c3 is mid range, my c4 sits on the low range line. The thyroid results were a complete surprise, in part bc I still felt fine. I was on 88mcg but now attempting to go to 125 and having some difficulty bc if I take 125 for a couple of days I just feel really off.

greygoose
greygoose
in reply to phirestar

Sorry, I do not know what all those abréviations mean. But, it's really the thyroid results that concern people on here. If they need to see anything else, they will ask. But, do you have Hashi's or don't you? If you do, then that would explain any variation in thyroid results.

If you can only take 125 for three days straight, then take it for three days straight, then drop to 100 for a couple of days. A lot of people alternate like that. Do you think you could tolerate that?

phirestar
phirestar
in reply to greygoose

I was dx’d hashi in the middle of my reactions to the first thyroid med. I’d never been so sick in my life while on this med. From 2015 until September thyroid labs have been void of huge changes, minor changes to just over range resulted in minor increases in thyroxine. My reactions to both mylan and synthroid went on for just over a year and were kinda like a full body cascade. Since I responded to the thyroxine my best guess is I have a possible excipient problem- either singular or in combination. While on synthroid, I sprouted a 3cm lymph node in carotid artery triangle, had cat scan w omnipaque 300 and reacted to it. After starting a hypoallergenic thyroid med, the node reduced by half within a month and was gone within 2 along w all the other swollen lymph nodes. My reactions to the cat scan dye were rare and severe. Both those thyroid meds share about 3-4 excipients. Thyroid meds were the only thing I was taking. I’ve been playing w dosing for thyroxine. I’m now taking a compounded t4 in an olive oil suspension w a cellulose carrier (told pine based), a VD at 5000 and a b12 hydroxy/P5P.

normally B12 levels are maintained at the level that is right for you by using the stores in the liver you mention. The consistent fall in levels is suggestive that you have a B12 absorption problem and your stores are slowly being depleted - something that can takes years or even decades so symptoms arise very quickly.

There are a number of mechanisms by which being hypothyroid can affect absorption of vitamins and minerals - particularly iron, B12 and folate, iron being the first to manifest. If your iron levels are okay then that would suggest it is something to do specifically with B12- which would suggest that as well as hashimotos you may also have PA.

Note: this forum on PA

healthunlocked.com/pasoc

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