I am desperate for advice. My case has been ongoing for more than a year since I figured out that all the symptoms I kept having for years, were not actually because 'this is what my body is like'.
- sensitivity to cold (for at least 12 years now ive been having incredible to the point of shivering when people around me feel comfortable),
-tiredness muscular weakness and extreme fatigue (especially for a year now),
-leg and foot cramps (one after the other)
-dry skin (legs, hands, lips)
-TERRIBLE hairloss - 120-200 hairs a day (I was diagnosed with chronic telogen effluvium (which normally has a cause, which of course the doctors didn't even bother investigating further), 8 months ago as my hairloss became so severe that my hair has been getting shorter on its own.
-constipation
-not so clear or sharp thinking
incredibly decreased immunity (I catch colds and throat infections very easily and get fevers too)
-normally energetic in the evenings
-unexplained weight gain (I wake up and feel bigger, weigh myself in and I have suddenly gained 5 pounds!) - I don't even eat much and totally avoid sugar!
-feel a surge of energy and good mood immediately after eating and then feel lethargic
was told I was severely deficient in Vitamin D and Iron about 1 year ago (which I am sure is a common thing for people with hashimotos).
I went to my doctor and asked for a full thyroid spectrum test.
everything was within range apart from my anti-bodies which were at 191. She sent me to a consultant. whilst waiting the normal wait, I did some research and went gluten free. 3 days before my appointment with the consultant (3.5 of wait!), the consultant sent me a letter saying she thought I was fine based on my bloodwork results alone!!!!!
in tears and absolutely devastated, I went back to the GP and asked her to run the tests again. I was sure my gluten free diet had started to help as I was mildly less tired but my hairloss had decreased by 40% at least (after 2 months gluten free)!
she run the tests and my antibodies were down to 122. my GP believes me when I say I am not feeling well but dealing with a consultant I have never been seen by, is so frustrating I want to scream and cry at the same time.
going private, is very expensive for me. I am at loss as to what I can do.
I am so desperate and seriously angry that I am thinking about asking the doctor to sign me off so that I have enough time to figure out how to resolve this.
any advice is more than welcome.
thank you <3
Written by
thatslenas
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You could go into lots of expensive investigations but the likelyhood is that they will all come back normal or close to normal. I would ask your GP to give you a trial of levothyroxine, perhaps 50 mcg (which is a low dose) for three months based on the fact that you have obvious signs and symptoms of hypothyroidism. You could take along this paper ncbi.nlm.nih.gov/pmc/articl... for support.
You will almost certainly need a higher dose in the long term but unless you are elderly or have a heart condition 50 mcg is very safe. Keep a log of your symptoms and how it affects your life. Also take some photographs of yourself now to tuck away for later. If the doctors can see how you are before and after treatment it will make very convincing evidence.
Going gluten free may or may not have influenced your antibodies but either way your thyroid will deteriorate in the long term, so be persistent in asking for treatment.
Gosh, I can imagine how devastated you were after waiting all that time to be told by post that your results were 'fine'. Thank goodness your doctor is on your side.
I went totally GF in September last year an effort to reduce my antibodies, I've got several auroimmune conditions.
My first results in September last year were
peroxidase 31.3 (<34 ) and AntithyroglobulinAnti was 401.0 (<115)
In July they were
Peroxidase <5 (<34 ) and antithyroglobulin 140.5 (<115)
My Thyroglobulin is still higher than it should be but it has dropped a lot so I'm totally convinced GF works and apart from not eating things with gluten I eat a very healthy non faddy diet.
Have you had your B12, vitamin D, ferritin and folates checked? They all need to be at the top of their ranges to support your thyroid.
thatslena, it would help people advise you if you posted your results - with the ranges, so that we can see exactly what's going on. Doctors don't take any notice of antibodies, because there's nothing they can do about them.
But, more concerning, what are you doing about your low vit D and your low iron. Thyroid hormones cannot work if you have nutritional deficiencies. So, they need to be supplemented. What was your result for these tests, and what are you taking, if anything?
Have you had your B12 tested? If the others are low, that is probably low, and it is very, very important that your B12 is optimal. A lot of your symptoms sound like nutritional deficiencies.
Greygoose apologies for the late reply as i have been travelling for a week plus now. I have my results to hand.
Serum B12 273ph/ml (180-900)
Folate 7.5 (4.4-20)
Ferritin 58 (16-445)
Free T3 4.3 (3.10-6.8 pmol)
Free T4 16.3 (12-22 pmol)
TSH 1.6 (0.27-4.20 mU/L)
Peroxidase antibodies 191 IU/ml
My haematocrit is high (could be totally irrelevant) at 0.47 (0.37-0.45)
My vitamin D used to be very low but is now at normal levels apparently.
I really hope you see this and have some advice. In the meantime i am still relentlessly searching for ways to be heard. It feels like a full time job.p
OK, well, nobody is going to see this post now - or very few people, anyway. So, if you want a consensus of opinions, it would be better to put your results in a new post.
However, I can tell you that your B12 is dangerously low. Optimal is 1000, and anything under 500 can cause irreparable neurological damage. If I were you, I would supplement with 5000 mcg methylcobalamin daily. With that, take a b complex to balance the bs. Get one with methylfolate, rather than folic acid, to bring your folate up, because that's rather low, too.
Your ferritin is a bit on the low side, 100 would be better. If you supplement with Ferrous fumerate, take 1000 mg vit c with it, to aid absorption.
Your TSH is too low for a doctor to consider you to be hypo. I imagine your antibodies are high, but without the range... difficult to say. And, your Frees don't look drastically low. These labs don't scream hypo.
There's no such thing as 'normal'! You need to see a number for you vit D. If it always used to be low, I fail to see why it would suddenly become good. Ask for the numbers.
So, all I can really say is, get your ferritin and vit B up, and that should make you feel a lot better. But, don't give up on the idea of thyroid, because if those antibodies are high, you have Hashi's, and will one day become very hypo. Get tested about every six months to see where you're at.
Greygoose thank you so kuch for replying. I too had noticed that some of my results are on the very low side but never thought they could pose such danger. Ive taken everything you said on board and will be researching and supplementing myself as soon as i get bqck to the uk. It was a shock to me that low b12 can be so damaging. It angers me more than words can describe that doctors are you either ignorant or dont care. i managd to book two private endocrinologists to see in greece while i am here on holidays and will be updating you accordingly.
Doctors are totally ignorant about nutrition. For them, B12 is JUST a vitamin, and vitamins are of no consequence, just something that health nuts take! They have no idea how dangerous it can be to have low B12.
I've had low B12 most of my life, I believe, going by symptoms. My peripheral neuropathy started when I was 27 - I am now 71! A few years ago, I started having problems driving. I thought there was something wrong with the steering of my car. But family members that drove it, said there was nothing wrong. For me, it appeared to be pulling to the left, and then I would over-compensate by yanking the wheel to the right. It got so that I was reluctant to drive, and put the car in the garage for more than a year.
And then, I started having problems with my right arm. It was weak. I couldn't lift it up. I couldn't carry anything in my right hand. It ached...
After reading a lot about nutrition, I realised I should get my B12 tested. The result was about 350. My doctor said it was 'perfect'! So, ignoring him for the silly old fool he was, I started taking high doses of methylcobalamin. And, little by little, I got the use of my right arm back. Now, I can drive just as well as I used to. Without the B12, I would probably have lost the use of my right arm completely, and never have driven again. Thank you so much, all the doctors I've seen all my life!!!
First of all, apologies for taking so long to reply. My holidays were very full on and included appointments with two endocrinologists that left me even more confused. I think i will have a massive problem to sort my issues out even though i am trying to stay positive.
The shmptoms you mentioned and all the info about B12, is shocking. I have conducted some brief research but i need to read a lot more. I get the impression that just like many others, i will end up having to treat myself alternatively.
What you described about your arm, i have been feeling in my fingers for about two years now. It feels like i had a stroke and i dont have good control of them if that makes sense. It feels like i cannot do detailed work too cause my hands and fingers dont feel very steady.
What happened with the "specialists" i saw in greece:
1st endo- agreed i have hashimotos. Said all my symptoms are hashimoto related. Told me to keep being gluten free and also avoid:
Eggs, all dairy, mushrooms, most fruits, refined sugars, gum, processed foods, alcohol, chocolate and a few more things leaving me wondering what i am supposed to eat.
She prescribed: levothyroxine 12,5 mg a day. I took it twice and it brought me such bad anxiety..i stopped it immediately after the second day.
She also said i shoud take:
Q10, B12, vit C, magnesium, Calcium, vit D, ferritin and a few more supplements.
2nd endo-agreed i have hashimotos. Did an ultrasound and found symptoms of hashimotos, a 'stressed' thyroid and 3 nodules that are shrinking.
He said: no meds since levothyroxine does not agree with me
He said: take selenium but not religiously plus B12 but not relegiously and keep off gluten but not religiously.
I kept mentioning my hairloss, tiredness and all my most serious symptoms and he said a couple of times that we cannot be sure that these are the result of my hashimotos.
I am at a loss for words and im again close to tears as i dont know what to do now. Perhaps i will pull the rest of my hair apart..
Well, first of all, if I were you, I'd ignore both these so-celled 'experts'! What a load of rubbish!!!
12.5 mg of levo a day? It is mg and not mcg? In any case, both of them are calculated to make you feel worse. 12.5 mg because it is much too much, and 12.5 mcg because it is way too little. Give up eggs and take calcium? What a moron!
And, as for the other one, if you don't take B12 and give up gluten 'religiously', there's not point in doing it at all! Neither of them had any idea what they were talking about, I'm afraid.
So, what do you do now? You could try going back to your GP and asking for a trial of 50 mcg levo (mcg not mg!) and take it from there. Or, you could buy your own and self treat - you have got us to guide you.
Either way, you have got to improve your nutrients first, or the levo isn't going to work for you. You have got to supplement the vit D, vit B12, folate and ferritin and bring the levels up. Just doing that will make you feel better. Your hair-loss could all be down to your low ferritin.
Why not post a new question, with your results and ranges, and ask people's advice on what to take and where to get your own T4? I'm sure you'll get lots of answers. But, sources of T4 by PM only, please.
I totally agree with you greygoose. that was my first reaction because I too have done research and I disagree. of course an elimination diet could benefit me but I don't have anyone that convinces me enough to try it. they have no clue what they are saying - I know! it's soooooooo infuriating and demoralising!!
you are right. 12.5 mcg a day is what she prescribed. I am very prone to anxiety as I have been through a severe anxiety disorder and even caffeine makes me feel panicky. after the second day on it, I was constantly wired and felt panicky-it was a horrible horrible sensation. If such a low dose did this to me, I am pretty convinced that anything higher than that would do even more damage. it's quite complicated as I used to have polycystic ovaries too, and a day after I stopped taking levothyroxine, I had severe cramps and bleeding which lasted 5 days. I can only assume that levothyroxine had a hormonal effect and a possible cyst, burst open. - I am constantly aware of my body and try to explain symptoms in a logical way.
also, I read online that irritability and anxiety are side effects of levo and that a lot of people combine it with anti-anxiety meds which I am NOT willing to be on at all. - I also did some research about taking T3 only. it comes with some risks but apparently some research suggests that it is effective in hashimotos and hairloss -any insights?
sure. I am keeping off gluten and trying to have a good diet. what do you think about the elimination diet? I have bought loads of supplements including what you have suggested on this thread-thank you for that.
apologies for the late reply as i have been travelling for a week plus now. I have my results to hand.
Serum B12 273ph/ml (180-900)
Folate 7.5 (4.4-20)
Ferritin 58 (16-445)
Free T3 4.3 (3.10-6.8 pmol)
Free T4 16.3 (12-22 pmol)
TSH 1.6 (0.27-4.20 mU/L)
Peroxidase antibodies 191 IU/ml
My haematocrit is high (could be totally irrelevant) at 0.47 (0.37-0.45)
My vitamin D used to be very low but is now at normal levels apparently.
I really hope you see this and have some advice. In the meantime i am still relentlessly searching for ways to be heard. It feels like a full time job.p
Your B12, folate, ferritin, Free T3 and Free T4 are all too low. You should be dubious about your vitamin D unless you've seen the actual number and ranges.
Serum B12 needs to be around 1000 according to the Pernicious Anaemia Society. Supplement with Methylcobalamin 5000mcg per day for a couple of months then reduce to 1000mcg per day. Jarrow Formulas and Solgar both make a popular product. Take one tablet day, leave it in the mouth to dissolve very slowly - no sucking or chewing.
It is a good idea to supplement with a good B Complex along with the Methylcobalamin. It is a good idea to keep levels of all the B vitamins in sync. You need to take one which contains folate rather than folic acid. Personally I take one Thorne Research Basic B Complex capsule a day. There are other brands available.
Ferritin - you need to go to a pharmacy and buy ferrous fumarate 210mg (FF), in a box of 84. This is enough for 1 tablet, 3 times a day, for 28 days. If you tolerate the FF you can continue taking it, but if you don't there are plenty of other supplements you can try. It may take months to get your iron level up to optimal (mid-range), it depends on how well you absorb it. With each pill take 500mcg - 1000mcg vitamin C. Iron often causes constipation. High dose vitamin C causes diarrhoea. The idea is to take just the right amount of vitamin C to avoid both problems.
Iron is poisonous if taken to excess. You shouldn't allow it to go above mid-range to be on the safe side, so regular testing is essential.
I also think you need to know your vitamin D level.
Since you have positive antibodies you need to stick to a scrupulously gluten-free diet in the hope of lowering them. It works for a lot of people, but not everybody.
You can get private testing done without a doctor's approval or permission for £99 for a finger-prick test, if it interests you.
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Desperate for help and advice!
Thyroid and Hairloss
Feeling rubbish- DR has given anti-ds but is it my thyroid??
