Could I have hypothyroidism? Please help

[Lisa3ok]

I have been unwell for over 2 years now with varying symptoms. Just over a year ago I was diagnosed with B12 deficiency and vitiligo. I also had my gallbladder removed and have high blood pressure now which I have never had a problem with before.

I have many symptoms the main ones of which are extreme lethargy, no energy, tired all the time, don't sleep properly, light headedness, dizziness, poor balance feels like I'm walking to one side, fuzzy head. I have lost my libido and no matter how hard I try to lose weight it won't shift.

Over the past couple of months I feel like there is a lump in the right side of my throat and can feel it more when I swallow. It doesn't hurt but is very annoying.

I have my thyroid tested in July 2013 and have enclosed the results. My mum suffers with hypothyroidism and has done for years.

Is it worth me getting my TSH tested again and do you think all could be linked to hypothyroidism? Thank you for your help.

[PinkNinja]

I personally think you are developing hypothyroidism. In some countries your TSH would be considered too high. Your free t4 and t3 are low in range too so it is entirely possible that this is at least contributing to your symptoms.

I do think vitiligo can be a symptom of hypothyroidism although it could be a symptom of something else. Doctors aren't really sure what causes it but I have seen it in thyroid patients too often to ignore the possible connection.

You may be able to persuade a doctor to try thyroxine but it is definitely a good idea to keep an eye on your thyroid function.

It is also a good idea to check serum iron, ferritin, folate, vitamin b12, vitamin D and cortisol as some of these may be contributing to your symptoms. If you get these tested, post the results on the forum as the reference ranges for some of the tests are far too low.

I hope you get to the bottom of this soon so you can start to recover.

Carolyn x

[Lisa3ok in reply to PinkNinja]

Thank you very much Carolyn. I had my ferritin, folate, B12 and vit D tested a couple of months ago.

Ferritin 47, Folate 10.4, B12 above 1500and Vit D was 60.x

[PinkNinja in reply to Lisa3ok]

That looks pretty good except the ferritin could be higher. 70-90 is good to aim for.

[Lisa3ok in reply to PinkNinja]

I guessed it would need to be around 80. Thank you

[humanbean]

How was your B12 deficiency treated? Injections? Pills? What type of B12 was used to treat?

The reason I ask is that I had symptoms that suggested to me that I was suffering from B12 deficiency, but my serum B12 blood tests indicated my B12 levels were extremely good, so I was baffled. I only reduced my symptoms after I switched to taking methylcobalamin instead of the cheaper cyanocobalamin. I have also started taking other methylated B vitamins and these have helped too.

[Lisa3ok in reply to humanbean]

I treat myself with hydroxo. I started on methyl but didn't feel any different

[humanbean in reply to Lisa3ok]

I've wondered about trying hydroxo. I read about someone recently who used a combination of different B12 types (excluding cyanocobalamin which doesn't occur in nature). I might try adenosylcobalamin one day, if I can get hold of it, just to see if it helps :

en.wikipedia.org/wiki/Cobam...

I'm assuming that B12 deficiency symptoms can occur in anyone who can't convert it to the active forms.

[Lisa3ok in reply to humanbean]

Anything is worth a try, I was desperate I really thought I was dying I felt so ill.

Was that's correct anyone that cannot convert.

[humanbean in reply to Lisa3ok]

I'm not an expert on B12, just another person desperate to try anything that might help. Since I got so much improvement (much less staggering and lurching to one side, and my brain works a bit better, Yay!) going from cyanocobalamin to methylcobalamin, I thought it was worth a try when I've run out of my current supplies to buy a different form and see what happens.

[humanbean in reply to humanbean]

Going back to the subject of hypothyroidism, I think your TSH is too high, and your FT4 and FT3 are rather on the low side in the results you've given. If you have now developed a lump in your throat and difficulty swallowing then it would be a good idea to get your thyroid re-tested.

However, you will have to be prepared for another knock-back from your doctor if your TSH is still anywhere within spitting distance of the TSH range. You might have to consider self-treating.

Your ferritin is rather low. Aim to get it mid-range (ranges vary from lab to lab, so it depends on the range being used what mid-range actually is).

Vitamin D - if it is measured in nmol/L - most people feel at their best when they get it to about 100 or perhaps a bit over.

[Lisa3ok in reply to humanbean]

Thank you for your advice. I am not prepared to give up yet I will keep fighting as I'm not well and there must be an answer.

[helvella in reply to humanbean]

I believe you can get it from iHerb.com - but be careful. It is not as safe as the other B12 substances and there have been some negative consequences. I don't know enough to explain!

[Hidden in reply to helvella]

Here's a useful link that'll help explain methylation simply and what's known as 'start up' symptoms for those who are deficient in B12 and start taking methylcobalamin and adenosylcobalamin.

howirecovered.com/active-b1...

[humanbean in reply to Hidden]

Thank you! I need all the help I can get on this subject.

[Lisa3ok in reply to helvella]

Thank you x

[humanbean in reply to helvella]

Thank you for the heads up, helvella. I'll do some research before buying any other kinds of B12.

[Hidden in reply to humanbean]

Serum B12 measures total B12, not just the active form (methylcobalamin), so perhaps you're like my 2.5 year old son who I suspect has the MTHFR gene defect. He had classic B12 deficiency symptoms, and yet blood tests showed him to be past the upper limit for his age for both his B12 and folate, and yet with low ferritin.

Luckily my new GP is pretty amazing, so she supported me in giving him Methyl B12 (125mcg) 2-3 times a week, and I've since also sourced a kid's chewable multivitamin that has Methyl folate in it, not the synthetic form folic acid. It's turned things around for him, and I've got my little boy back.

I'm also on Methyl B12, taking 5mg sublingually (hence the reason I was able to reasonably guess what was going on with my son) as well as 4 mg Adenosyl B12 sublingually (also known as dibencozide). I buy both through iherb.com in the States and get it shipped here to NZ.

Just thought I'd share, re: your comment about deficiency but good test results. I suspect if I had had my son further tested before we supplemented (no chance cos one blood sample procedure was enough to break my heart), I think we would have found him to have high homocysteine levels. The first couple of times I gave him B12, his skin flushed and went all blotchy around his face/head and neck, as if he was releasing toxins, but he would show immediate improvements for that day. All pretty scary, with someone so young. But I only risked it as B12 has no established upper limit on the recommended daily intake.

[Lisa3ok in reply to Hidden]

Thank you for sharing your sons story bless him. It's a good job he has a clever mum who knew what to look for.x

[Hidden in reply to Lisa3ok]

Thank you. I guess its understanding that if you're having certain non-self-inflicted health problems, its stands to reason that your children are going to inherit them too. With all the research I did to sort my own health out, and then recognising what could be the underlying cause of all the health problems on his father's side of the family too, it just made complete sense.

As with your mum, if she's hypothyroid, and has been for years, and you've had slow, insidious, increasing health problems your whole life, there's two scenarios as I see it (as its what I've narrowed the origins of my own thyroid problems down to), either my mother was in a hypothyroid state when she was pregnant with me, hence me starting life with a deficiency. Or, given that I've got central hypothyroidism which stems from problems in the pituitary or hypothalamus, it is possible to be genetically predisposed to thyroid problems.

My blood test levels are very similar to yours, but with lower TSH. Once you read more on hypothyroidism, do NOT let anyone not diagnose you according to your TSH levels. That's a hugely controversial medical scandal in itself. You do have an underactive thyroid, as your FT4 and FT3 indicate (they are not optimal), and its just finding out why, if you can - whether it be auto-immunity, estrogen dominance, problems with your pituitary, etc... and getting proper treatment.

[Lisa3ok in reply to Hidden]

Thank you so much for all of your advice I really appreciate it. I don't intend to give up. I'm not well and there has to be a reason. My trouble will be convincing my GP.

I am going to order some more private blood tests and go from there. Thank you again x

[humanbean in reply to Hidden]

Thanks for your posts, Kimarina, they've been very helpful.

[Hidden in reply to Hidden]

Hi kimarima, can I ask how you ended up being diagnosed with central hypothyroidism? Did you have something specifically tested for?

Thanks

[Hidden in reply to Hidden]

Its been diagnosed by process of elimination of it NOT being primary hypothyroidism (I never test with a high TSH - its usually between 1.1 and 1.6), and it NOT being autoimmune (I don't have thyroid antibodies). But testing shows that my FT4 and FT3 are both low, particularly my FT3 - 3.6 (range 3.6-6.5). My FT4 was still within range too, but low. And I have many classic symptoms, including a low basal temperature, central obesity, chronic fatigue, constipation, dry, thick skin, etc, etc.

While I was trying to find a doctor who would diagnose me, I did do a lot of reading of medical journals, and central hypothyroidism is more difficult to diagnose due to the low/normal TSH levels, often low/normal FT4 and test levels (FT3) on the whole are apparently less 'extreme' than primary. Ideally, I'm guessing they should test my pituitary to look for adenomas, and its secretion of other hormones, but this is NZ and funding is low, and access to specialists, even lower. So my GP is happy to put me on natural thyroid medication anyway.

Hope this helps.

[Lisa3ok in reply to Hidden]

Thank you so much. It really does sound like a battle all of the time x

[Jacquid]

Lisa, although your test is negative for autoimmune antibodies, Vitiligo is an autoimmune condition, as is Pernicious Anaemia (B12 deficiency). It is very rare to have only one autoimmune condition.

I have Vitiligo and Graves Disease (autoimmune thyroid) , my levels and symptoms were very similar to yours and I was getting no support from the NHS, so I resorted to self treating with NDT about 3 months ago, feeling much better now, not brilliant yet but getting there.

Might be worth a try? I know exactly how bad you're feeling xx

[Lisa3ok in reply to Jacquid]

Thank you for your advice, I just really don't know where to go from here. My GP is not and has not late wd to me at all and I feel like I am banging my head against a brick wall. However I am not prepared to give up, there is something wrong with me and there will be an answer. I will get my bloods tested privately again.

[Lisa3ok]

What is ndt?

[Hidden in reply to Lisa3ok]

Natural dessicated thyroid. It was the gold standard for treatment for the last 100 years, until synthetics and patenting came along.

[helvella in reply to Hidden]

Has levothyroxine ever been patented in the UK?

I don't think it ever was patented in the USA, though it might have been in some of the other 200+ countries of the world.

In 1958, the first synthetic T4 entered the market: Synthroid, originally manufactured by Flint Laboratories. Never receiving patent protection, Synthroid was distributed without major competition for approximately 40 years.

formularyjournal.modernmedi...

[helvella in reply to Lisa3ok]

NDT is an abbreviation for Natural Desiccated Thyroid.

There are several products that consist of dried pig or cow thyroid. (Most often pig.) This was one of the earliest treatments for hypothyroidism and became available in the 1890s.

Several of these products are manufactured to a high standard and are regulated by various agencies (e.g. the FDA in the USA and the Canadian equivalent in Canada).

These products are still measured in the old-fashioned unit of grains. In metric terms, one grain is either 60 or 65 milligrams - that is how much desiccated thyroid powder they contain. Each grain typically contains about 38 micrograms of T4 and 9 micrograms of T3.

There are also several products which are not regulated and might or might not contain actual thyroid hormone, and might or might not be consistent. Some people seem to find them helpful but it is a difficult area.

(I prefer to avoid using the word "natural" because I think some doctors think you are talking about these unregulated products, even if you are not.)

The main Thyroid UK site has details of most of the available desiccated thyroid products.

thyroiduk.org.uk/tuk/treatm...

[Lisa3ok in reply to helvella]

Thank you so much, there is a lot to take in. I have a lot of reading ahead x