Hypothyroidism finally!!: Hi everybody... - Pernicious Anaemi...

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Hypothyroidism finally!!

Dlonelyguy profile image
9 Replies

Hi everybody,

The cat is finally out of the bag! I have been diagnosed as being hypothyroid today with my TSH currently at 13. No wonder even after excessive b12 supplementation, my symptoms were refusing to improve. I know it's still a long journey for getting my memory/cognitive issues fixed but at least I m hopeful now. The doc has put me on synthroid 88mcg. Thanks everyone for listening patiently and providing expert advice when I needed it the most. For all those who r not noticing any improvement with b12 supplementation, please get your tsh along with your free t3 And t4 levels checked. It's really difficult to pinpoint either one as most of the symptoms overlap. I was confused, spaced out and having memory recall issues. Is there anybody here who has both - b12 def, hypothyroidism? How can you manage both of them simultaneously?

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9 Replies
Pixielula profile image
Pixielula

Haha there are thousands I imagine..... it takes some time to separate the symptoms, luckily for me my hypothyroidism was diagnosed 20 years ago so I am pretty used to those symptoms and I'm on a good meds regime. The b12 thing has only been 18months so that I'm still getting used to. And I'm still learning ..... for the last week I've had very painful calve muscles and legs in general, waking me up at night with the pain. Even to touch they were really painful, had my jab on Monday and this morning I woke and the pain is gone..... legs are fine, I had never noticed that before. most people suggest keeping a journal of your symptoms and see what improves after your injection. That can then be attributed to the b12 it takes time and you learn slowly thyroid bloods are important the aim is to get THS under or around 1 with t3 and t4 in the upper ranges. Also keep asking questions on here as there are some supper knowledgeable people.

Foggyme profile image
FoggymeAdministrator

HI Dionelyguy.. That's great news. So pleased for you.

B12 deficiency and hypothyroidism go hand-in-hand and we very often see people here who have been diagnosed with both.

My understanding is that they should be managed and treated as seperate conditions, though the cross-over of symptoms is high, so is may sometimes be a bit of a tease. It important that your GP does not simply write off symptoms or problems with one condition as being related to the other - quite common I think, and one of the potential pitfalls.

Some people suggest keeping a symptom log so that you can monitor any changes and start spotting patterns that occur - especially if, for instance, your thyroid meds are being adjusted - which I think is quite common, especially in the early stages.

Have you also made contact with the thyroid forum here on HU. Some very knowledgeable folk there who will be able to help and advise you. They're very good an interpretation of blood results - somewhere GP's often fall short. And also very knowledgable about the treatment you should receive. In fact, very good on all things thyroid (much so than we people here 'cause it's their specialism).

The prospect of becoming well must have you leaping for joy 😀. Hope this happens very soon.

Take care and let us know how it goes 😀

Hillwoman profile image
Hillwoman

Lots of us have both disorders. And with a TSH of 13, it's no wonder you've been feeling very ill. It will have taken many years for your TSH to creep up to such a high point.

Ruthi profile image
Ruthi

You just want to kick someone don't you? How many doctors have missed the obvious, one wonders?!

88mcg is quite a lot for a starting dose, but if you are reasonably big it should be fine.

We have a group here on HU called ThyroidUK. Very active, and the font of all useful knowledge. Come along if you have questions.

Dlonelyguy profile image
Dlonelyguy

Thanks guys for those kind words.

Ruthi - I was also left wondering if 88mcg is too much..I even asked my GP. She told me that she starts at 75 mcg when the tsh is arnd 10 and as mine was at 13, started with a little stronger dose. I am 5'11 and 75 kgs. Do u think I should start at a lower dose? I am a little concerned as I have heard that you can't go back to a lower dose and some side effects like insomnia, palpitatations may accompany levo.

Can people share their experiences on synthroid starting dose.

Ruthi profile image
Ruthi

You can go back on to a lower dose, but time will be lost because you might need a complete break. There is a calculation done of 1.6mcg per kilo of lean body weight (ie without whatever you are carrying that you shouldn't) but that isn't a starting dose, its an estimate of what you might need. In reality it can vary wildly. The normal (but we don't like that word!) starting dose is 50mcg, for the first six weeks, then raising by 25mcg every six weeks until symptoms resolve or you top the range. I very much doubt that you could make good use of more than that - the cells have to relearn what to do with thyroid hormone (scientific eh?). The level of your TSH has nothing to do with how you can use the stuff, only how much you will ultimately probably need.

So if it were me now, with my knowledge, I'd probably stick to 50 to start with, knowing that it will probably have to go up. Take it first thing on an empty stomach with only water, and wait for an hour before eating or having a cuppa. And wait four hours before taking mineral supplements like iron or magnesium. It takes a surprisingly long time to feel better, although most people feel something by six weeks it can take a year or more to get the best you can.

Here's an interesting and helpful page!

globalrph.com/thyroid_calc.htm

and

globalrph.com/thyroid_calc.cgi

To process T4 properly you need fairly optimal B12 (you will have that!) ferritin, folate and Vitamin D. Have they been tested?

jpar profile image
jpar in reply to Ruthi

I would agree. Thyroid needs to be started at a low dose. 88 is very high and could get you into hyper sypmtoms in several weeks and it will be hard to distinguish between b12 and hyperthyroid symptoms. Please see if you could start at 50mg or even 25mg. I would hate to see you go into the hyper stage. I was successfully taking thyroid meds for 30 years until the last few years where I went hyperthyroid and had a thyroid storm. That is horrible and much worse than hypothyroid. Please try not to get into that situation. You can always slowly move up.

dbt9800 profile image
dbt9800

Hi! I have both. Was diagnosed with hypothyroidism in 2008. I never even realized I had it until I was tested for other things. Had zero symptoms. However, over the years if I forget my prescription for my thyroid for whatever reason, I feel many symptoms. I also change dosages each visit (increase). I'm currently at 100 mcG. Just diagnosed with PA two weeks ago. I went because I was so tired and had tingling in my extremities and felt my thyroid medication was off. Now I take B12 injections and synthroid. Hope you feel better soon!

humanbean profile image
humanbean

A symptom list for hypothyroidism (nobody I know of has them all you'll be pleased to hear) :

hypothyroidmom.com/300-hypo...

A rather more concise list of symptoms can be found here :

thyroiduk.org.uk/tuk/about_...

If you want help and advice about hypothyroidism you could join this group which is also on Health Unlocked. You'll see a few names you are familiar with because so many of us have B12 and thyroid problems :

healthunlocked.com/thyroiduk

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