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Pernicious Anaemia Society
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Advice desperately needed.

Hi.

Some of you will already know me from the PA community. 10 months ago I posted that my B12 treatment seemed to have stopped working? I have struggled badly ever since!

I suspected a thyroid problem, due to the symptoms I have (which are tiredness, fatigue, poor memory, lack of concentration, feeling nervous all the time, tinnitus, leg muscles twitching, problems controlling my weight (weight gain if I eat a normal meal!). I went to see the local doc, and was tested for TSH, T4 & T3, and the doc told me "nothing wrong with your thyroid", but I did not see the actual results, and neither did he! The results came back in a colour format, where green was OK and red was not OK! The thyroid test showed green! The only test that showed red was for cholesterol, which was high. Doc just told me to do some exercise, and not eat cheese!

I have been able to buy some levothyroxine 25mcg, and want to "self medicate", but I have done some reading, and it does not sound like a good idea, as the dosage has to be based on blood test results?

Unfortunately, my doctor is not of any help whatsoever, and it is very doubtful if he would even do another thyroid test!

I do not have access to any private health care!

My question would be, is it safe to self medicate, and adjust my dosage based purely on symptoms?

I would intend to start with 25mcg daily, over a 4 week period, and then increase to 50mcg daily.

I hate feeling ill all the time, and it is so difficult to work!

Any advice or help would be greatly appreciated.

15 Replies
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Hi patez are you still injecting with cyanocobamalin?

Do you know what your B12 and Folate levels are now?

Would not your questions about supplementing with levothyroxine be better address to the Thyroid U.K Community?

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Hi clivealive.

I have now bought some Hydroxocobalamin from versandapo. Doesn't seem to be doing anything! I have been SI with that every other day for a month! The only symptom that has gone away is the numb and tingling fingers! I still feel physically dreadful though!

I do not know what my B12 or folate levels are, and can't get that tested. I am taking 400mcg folic acid daily, and have just started taking Feroglobin. Trying anything to try and make myself better again!

I thought I had actually posted this on the Thyroid UK community! My mind is not what it used to be!

I will try and figure out how to do that!

Thanks

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patez - are you aware that you have actually posted this on the PAS forum rather than a thyroid forum?

healthunlocked.com/thyroiduk

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form very recent personal experience - i really wouldn't recommend the course of action you are suggesting unless you are sure that you really do have, or are in the process of developing a thyroid condition.

I have been started on levo at 25mcg because I have hashimotos - an auto-immune response that produces antibodies that are attacking my thyroid.

Right now I feel really awful - and one theory is that the dose is large enough to be turning off the TSH but not enough and hasn't had enough time to mean that my cells have enough T3, and all I can do is wait and see.

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Thanks.

Hope that you get yourself sorted soon.

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Yes, clivealive has already pointed that out!

Have posted on Thyroid UK now.

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Hi, I know this is meant for the thyroid forum but just to say I had very high cholesterol unrelated to diet and lifestyle, saw specialists, no explanation. I got it down myself using alternative remedies recommended by a pharmacist, a short walk each day, some changes to diet, and I stopped eating gluten which made a big difference to all symptoms although it wasn't the complete answer. I do think high cholesterol can be related to inflammation/auto immunity. Unless you have a bad reaction to dairy I doubt giving up cheese is the answer, but generally a balanced home cooked diet of fish, vegetables, salad, olive oil, garlic, fruit etc will help. You could ask for a celiac test if you haven't already, if you want to try stopping gluten. I also have symptoms which are classic thyroid, thyroid disease in the immediate family but normal test results.

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Hi.

Thanks for the info.

Not really feasible for me to try gluten free, as gluten free products are not available here in Oman!

Patez

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Well, when people have celiac disease or an intolerance to gluten, the only treatment/cure is eating completely gluten free. Vegetables, salad, rice, lentils, eggs/meat/fish (if you're not vegetarian) and more are all gluten free.

Best not to try it until you have medical confirmation and advice though.

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Hi there Patez,

I could be wrong of course but I'm 99% certain that you have a right by law to have a copy of your actual results, even retrospectively. If your tests were done at the hospital they will be able to give you a copy of the actual results (figures). Your best bet in this instance is to go through PALS at the hospital who are normally very good and prompt at getting things sorted for you as the NHS doesn't like complaints and they have rather a lot! If the bloods were taken at the GP's then I'm not sure, but I think they are all probably sent to the hospital so maybe the same applies??

Good luck and I really hope you feel better soon, hang on in there.

Remember also that If you self medicate then test results will be skewed, until you have a full diagnosis.

Take good care

Drumstix 😃

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Hi.

I work in Oman and the blood tests were done by the armed forces hospital here in Oman.

The company that I work for do not have private health cover, so we can only be seen/treated by an armed forces doctor. Those doctors are totally incompetent! I was diagnosed last year with severe B12 deficiency, but only given some B complex tablets to take, which of course did absolutely nothing! I asked for B12 jabs, but they did not have any B12 injections available! I ended up buying some myself from the local pharmacy here and started SI. I felt absolutely great for nearly 1 year, but my health has gone downhill rapidly during the last 8 months, with nearly all the neurological symptoms coming back!

The reason why I think it may be thyroid is because of the similarity to the symptoms of B12 deficiency? I am surely not B12 deficient now, because I SI every other day?

I realise that I had posted this in the wrong forum, and have now posted on the Thyroid UK forum.

I am going to hold off on self medicating with Levo until I have done some more research.

As you have said though, and from responses on the Thyroid UK forum, taking any now would mess up test results, if I can get another test done?

Thanks for your concern.

Patez

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Hi Patez,

Just one last thought from me...

I understand from the PAS that B12 deficiency almost always goes hand in hand with other autoimmune conditions (you're clearly not vegan), like for instance Thyroid disease as you mention, MS, Lupus, Addisons, and many others. Would you be able to get them to do an ANA (antinuclear autobodies) screen if it hasn't been done yet, or even recently? It's not specific to precise conditions but can give huge pointers to the right direction and if it's positive then you have a clear answer that something needs investigating. Results from last year are not bound to be the same now either (I know that from my own experience!).

Best wishes,

Kay

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I have been on thyroid medication for 34 years and have had to go up and down with meds. Thyroid meds are very powerful.They control every aspect of your endocrine system and more. Too little or too much can cause horrible symptoms and complicate your body more. Please don't take this on your own. You need to see an endocrinologist and have them monitor you. And yes, get a copy of your records or go to another doctor for diagnosis. If you can start removing soy, dairy and as much gluten as you can to help the thyroid function better.

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I don't want to say NOT to self medicate because I have to also. I have Lupus plus PA plus Sjogrens plus a whole bunch of other problems. I finally got myself health insurance (January 1, 2018). I take sublingual b12 and probiotics etc. Just do some research and make sure what your doing is safe. Hashimotos is an auto immune disease too. I'll be praying for you, not only to feel better but to some how get health coverage.

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Hi.

Thank you for your kind thoughts.

I decided not to self medicate, because of the fine balance that needs to be achieved, even if I was hyperthyroid, which I have since found out that I am not!

It seems that I have been on the wrong medication for depression? I had been prescribed Clonazepam, but have just found out that it is not an antidepressant! I managed to find a local psychiatric clinic, who do not charge for a consultation, and I have been given a regime to follow, to slowly replace the Clonazepam with Mirtazapine, and then eventually look into trying to get off the medication, with careful tapering?

Fingers crossed!

Patez

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