My Hashi story (sorry it is a bit long)

Hi people. I hope you will be able to help me with my blood results as I won't see my endocrinologist for another 4 weeks.

I am a 35 year old female. Approximately a month ago I was diagnosed with Hashimoto. I have always been exercising and always felt great, however for the last 2-3 months I've been loosing my hair really badly. I went to speak to my GP, but the first available appointment was in one month only. I though I would loose all my hair by that time, so I packed my bags and went abroad to do all tests there. After spending 200euros I found out that I have Hashi. My results were TSH 6.46 (0.27-4.2), FT4 12.37 (12 -22), Antibodies 379 (0-34), B12 189.6 (145-569), Ferritin 56,2 (15-150), Folic 11.63 (10.4 - 42.4), Zn 9.26 (9-18), Glucose 5,68 (4.11-5.89). They did not do FT3. My endo decided to put me on 25g of L-Thyroxine.

After doing some research I decided to wait a month and not start taking hormones, just to see how GF diet affects me. I did not feel any different. However I did not have any symptoms apart from hair loss anyway.

A few days ago I went private and did a blood test again. They checked only 4 things. TSH 7.07 (raised compared to the previous month), Antibodies 379 (stayed exactly the same), FT3 4.48 (3.66 - 6.72 ) (they did not check it last time , so I don't know whether those numbers have changed) , FT4 13.4 (raised compared to previous month).

So my questions are (baring in mind that I only went GF and did not take any hormones):

1. Why did my FT4 raised if I did not take any hormones?

2. Why there is no change in my antibodies if it is suggested that going GF and taking selenium and other supplements should affect antibodies count?

3. If I don't feel any different and there is no change in my antibodies, is it worth continuing with GF diet? It does not bother me much as I was not a great bread/past/pizza eater anyway, but would still love to be able to try some dishes rather than being restricted.

4. Is there any other way to see if GF is working?

5. Knowing that there is a greater chance of getting other autoimmune diseases, is it worth getting a private medical insurance to be able to access specialists more quickly and possibly getting better assistance? All in all it cost me £300-400 to go abroad and get all tests done and seeing an endo in one day. I don't know how much it would cost me to get private health insurance and whether it would be better than just hopping onto a plane.

6. I am also thinking about getting a life insurance. Having 3 kids I am a bit worried about getting MS or something similar... But again maybe it is just better to put that money into a savings bank account.

Sorry for such a long post, but always taking care of myself and being 100% healthy all my life (barely had a flu in the past 20 years) and discovering an incurable disease made me panic.

34 Replies

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  • I cant answer all of this because I have only just found out I have hashimotos myself. I have never been referred to an endocrinologist and it wasnt my GP who diagnosed hasimotos. It was the private blood test company that I used. So, I wanted to say that you didn't need to go abroad for blood tests etc presumably. I use Blue Horizon, they test the blood, they get a doctor to look at the results and offer a diagnosis sometimes and then you can go to your GP with it.

    Good luck.

  • Hi Numberone1. Thanks for your reply. I have already heard about Blue Horizon here. How much did you pay for your tests? Who took your bloods?

    I went abroad only cause I did not know what was wrong with my hair (it could have been anything - vitamin deficiency, cancer, poisoning with certain metals etc) and it was simply easier to go to a private clinic there, do all necessary checks and see a specialist doctor there on the same day. I did not know anything about Hashi at the time.

    When I did my test second time, I went to a private clinic in London, they took my bloods and did the test for £100. It is obviously cheaper than a trip to another country , but you don't get to see an endo for that price.

  • BH do a home finger prick test. It is very good and the results fit h with any NHS tests I have had done in the past. I use Cuty Assays for my vitamin D. It is a finger prick test too.

    I use the BH Thyroid 10 test - you get a tiny test tube to fill and return, with the City Assays vitamin D - you put drops of blood onto a card and post it back.

    You will find a link to both labs - and several other labs but they are the ones I use - on the Thyroid UK website - you will find a load of very good information on there too.

  • How long does it take to get a result?

    I am going abroad in a few weeks, so I will get tested there. It is still much cheaper. But it is very useful to have this information in case/when I need it I the future.

    How often do gp allow you to have your bloods here in the Uk? How long does it take to get the results?

  • 1) about two days after you send your sample off the results pop into your inbox.

    2) GP tests - for me it depends on whether they want the tests done in which case it is when they want them, if it is just you who wants them done then the answer is probably a no. For example I was tested at one point in connection with something else then when I needed a thyroid blood test and they only did the very basic TSH because they said I'd had one done recently - four months before! Hmmm.

    3) It generally takes at least a week for results from my GP although when I was diagnosed with Graves it took a day, My blood was taken on a Wednesday afternoon and by the. Friday night I was taking carbimazole, had an appointment to go and see an endo and instructs to come back for another blood test in. Four weeks time - pretty impressive.

  • I pay about £75 for the tests because the NHS dont test T3 and as I take T3 then I need to know Im getting the dosage right. It was Blue Horizon's doctor that pointed out my antibodies and that I have Hashimotos. I intend to take the info to my GP. However I don't really understand Hashimotos to be honest. Does it just indicate that what I have is an auto immune disorder? I think I guessed that anyway because of our family history ie Type 1 Diabetes with my daughter and my aunt has coeliac disease.

  • My understanding of Hashi is that technically everything is ok which your thyroid. It is autoimmune system which is killing it slowly. So you are not actually trying to cure the thyroid itself , but trying to get rid of the consequences.

    There is no cure for autoimmune deseases. Although there a few statements online saying that they got their Hashi in remission, but to be honest with you I am a bit sceptical here. There are so many people having that disease and only a few said that they managed to crack it. So either they are mistaken or they are somehow different from the rest of us or they are lying to sell their books or achieve something else.

    However I believe that there are people who really benefit from GF or other diets.

  • Private health insurance wont cover you beyond initial diagnosis

    All chronic conditions are excluded so you have to rely on the nhs

    Your thyroid is failing furthur as your tsh proves

    Thankfully your ferritin is not too bad same goes for folate so the sooner you start taking thyroid hormone the better and the quicker you will get better

    Not every hashimotos patient is affected by gluten but its wise to avoid both gluten and dairy for now

    You need to stop panicking about other auto immune diseases not everyone gets more

    My husband had Graves and Hashimotos running together from very young but was 28 before the graves got diagnosed then had thyroidectomy and the Hashimotos took over

    He is now 73 and i think the Hashimotos has burnt itself out and he shows no sign of any other auto immune disease and gluten does not seem to ever have affected him

  • Thanks Reallyfedup123. Has he even been GF? I don't feel bad that's why I am questioning GF as it does not affect me in any way.

    Do you know how long it takes for the thyroid to be completely destroyed?

    I started taking 25g of L-Thyroxine a couple of days ago, but I don't feel any changes. I don't expect to feel any to be honest as apart from the hair loss I never felt anything anyway.

  • My husband did go gluten free for a while but it made no difference

    I understsnd it takes around 40 yrs for Hashis to burn out

    He takes NDT because he cant tolrrste levothyrocine or T3

    25mcg of levo is a minute dose and you should have your dose raised by 25mch every 3 or 4 weeks until you loose your symptoms and your TSH should then be 1.0 or below

    Your free t4 and free t3 should be well into the upper quadrant of their ranges

  • Your results can vary as different machines are used in different labs - and to be honest the difference in the two FT4 readings are miniscule. Both are LOW so your thyroid is not producing that much T4.

    Your B12 is very LOW - and needs to be around the top of the range for optimal health. Anything under 500 can present with neurological symptoms. Only 20% of the B12 result is available to be utilised at a cellular level where it is needed. I would be focusing on that in the short term and forever !

    b12deficiency.info/signs-an...

    Many of the symptoms of being Hypo can overlap with being B12 deficient.

    You also ask why your anti-bodies have not changed when you have been supplementing - well things move slowly. I was diagnosed with Hashimotos in 2005 and I still have raised anti-bodies. I found acupuncture worked well for me - but not sure where they are now :-) Also going gluten free is not just about reducing anti-bodies - it is about reducing any inflammation that can cause a host of conditions later. Gluten molecules can penetrate the blood brain barrier I have read. ( Dr Datis Kharrazian )

    It may be a good idea to find someone you can follow with a Newsletter - Izabella Wentz - Datis Kharrazian - Chris Kresser. All have websites in their name and have written books. It is a good way of keeping informed. Suzy Cohen is also very good along with Dr Sarah Myhill.

    Do not be concerned about things that may or may not happen - concentrate on the now. If you fear other conditions - then improve your B12 levels and have your VitD tested. Also start your Levo 25mcg and raise after 6 weeks when you should be re-tested. My TFT's were all in range in 2005 but I started treatment as my GP here in Crete thought that the thyroid should be supported whilst under attack from the anti-bodies - simplistically put of course :-)

    I am not a Doc - just a fellow sufferer - click onto my name to read my edited profile :-)

    Happy to answer any questions.........

  • I read the article. Thanks :) I have already been to Tesco to get some vitB. (I am already taking vitD anyway).

    However none of the symptoms that are listed bother me. I will try to raise it anyway. It won't harm :)

    How long does it normally take to raise it to an acceptable level?

  • Raising levels is different for everyone. Depends on your absorption levels. You mention you bought VitB from Tesco - was that a B Complex or pure B12 ? If it is a B complex the amount of B12 will be too small to make a difference. Personally I think you need the B12 by Jarrow Methylcobalamin 5000mcg and keep under the tongue until dissolved. This avoids any absorption issues. When your levels are OPTIMAL - around a 1000 - then you can reduce to the 1000mcg for maintenance.

    You say you are taking VitD - as it is fat soluble it is best taken with the main meal or good fats. Are you dosing according to your results ?

    grassrootshealth.net

    Don't be too sceptical about diets - after all food is our medicine. You are still young and very fortunate to have a diagnosis so you can take the appropriate steps. Some of us are not diagnosed until much later in life when lots of damage has been done.

  • Thank you Marz. Yes, I bought VitB complex. I will check in the evening how much B12 is in there.

    Do you get your VitB from online?

    I cannot take VitD according to the results as nobody checked my VitD levels. I have a bottle of 5000 units (which says 2500% or RDA). I will be able check the levels in a few weeks.

    Can't read the article now , but I will definitely have a look at it later on.

  • healthunlocked.com/thyroidu...

    Another point of view about VitD :-)

    Yes I buy the Jarrow B12 on-line from Amazon. I also have weekly B12 injections - living in Crete makes that simple as I can buy OTC :-)

    You can check D levels privately from City Assays in Birmingham - through the post.

  • Thanks (y)

  • I also forgot to add another question: I read that I could be loosing hair due to low FT3. However despite it be on the lower end (still far from the borderline) , it is in range. So what could be the cause of the hair loss?

    Thanks. :)

  • Low Ferritin - Zinc - VitD and so on :-) Photos of me some 12 years ago indicate my hair was cut to compensate what it was - I now realise - thinning hair. I started B12 and VitD and all the other supplements when I joined this forum some 4 years ago and now I have a good head of hair once more !

    It is never just ONE thing - but a combination of issues. The body works as one with everything being connected. I posted to you around 4 hours ago - in fact the post above your last one - just wondered if you had managed to have a read :-)

  • Good to hear that your hair is back! From what I read that hair never grows, so that a relief! Thanks.

    I have been taking b12 and b6 in summer for other reasons, but the. I stopped as saw no point in that. Need to start taking it again then.

    I saw your post, but I am at work so trying to go online as often as I can now, but it is not very easy here. And that article is pretty long, so I will leave it until I get back home.

    Another question then...

    I know that I need to leave at least 4 hours before I take supplements , but can I take all of them in one go or are there any of them which don't go well together?

    Thanks.

  • Sorry - cannot advise as I do not know the supplements you are taking !

    Oh btw - my hair in the picture is not a good illustration as I was growing out the colour at the time and had it all pinned back and up to hide the badger effect :-)

  • Just being 'in-range' is not good enough. It's where in the range it falls that counts. Ranges are just guides, not set in stone. And what suits one person may not suit another, because we're all different. But it's rare to find someone that feels well with their FT3 at the bottom of the range. They usually have some sort of problem. You are losing your hair, so time to start your thyroid hormone replacement, perhaps.

    A TSH of 6.46/7.07 is openly hypo. So, your gland has obviously suffered damage due to the antibodies attacking it. It can no-longer make enough hormone, so the pituitary is producing more and more TSH to try and force it to make more. Best to start thyroid hormone replacement before any damage is done to other organs.

    I have hashi's, but Don't have any other autoimmune disease, and I'm 70, had Hashi's for most of my life. So, Don't worry too much about that.

    The rate at which the gland is destroyed is very individual. The swings can be of varying length, as can the spaces between them.

    Without knowing what exactly you take, it's difficult to say what you should take when, but as a general rule, it goes like this :

    Thyroid hormone should be taken on an empty stomach, with just a glass of water, one hour before food or other drinks, or two hours after. You can take it early in the morning, or at bedtime, whichever suits you best.

    You should leave four hours inbetween thyroid hormone and iron, calcium, vit D or estrogen.

    Two hours between thyroid hormone and any other supplement.

    Iron and calcium should not be taken together or they cancel each other out.

    Magnesium and vit c are best taken at night.

    Vit D, vit E, vit A are fat soluable vitamins and should be taken with the fattiest meal of the day.

    Most vitamins should be taken with food.

    When taking B12, you should also take a B complex to balance the Bs.

    When taking vit D, you should also take vit K2 because vit D raises calcium levels and K2 makes sure it goes into the bones, and not the tissues. (Same goes for taking calcium suppléments, but they are really not a good thing to take.)

    When taking vit D, vit K2 and Magnesium, you should also take a little zinc. They all work together.

    And that's all I can think of.

    Hair-loss can be due to all sorts of nutritional deficiencies, as well as low T3. As Marz says, it's rarely just one thing.

    Hypos often have nutritional deficiencies because they often have low stomach acid. Best to test vit D, vit B12, folate, iron and ferritin, because all these need to be optimal for your body to be able to use the thyroid homone you are taking.

    Low iron can also cause low stomach acid, as well as hair-loss.

    It's all a bit of a vicious circle, really! :)

  • Graygoose, just out of curiosity could you say what you take in the way of B complex, K2 and zinc? I am looking for amount and Brand if you have a preferred one. Thanks.

  • I take Thorne B complex; Now vitamin K2, 100 mcg; and Solgar zinc picolate, 22 mg. They seem OK to me - especially the zinc.

  • Thanks, do you also take B12 aside from what is in the B complex?

  • Yes, I take quite a hefty dose of B12 - 10 000. If I Don't take that much, I feel it.

  • Thanks.

  • Thanks. Need to get my head round it !

    I am currently taking Folic acid, VitD, selenium, fish oil (have been taking them for a bout a month now) and I have just bought VitB complex.

    I understand about TSH, but it is not due to vit deficiency. I have started taking L-tyroxine a few days ago. So hopefully it will drop soon.

    I understand that we need to go by how we feel , not by what the results show. However that's the trick, I feel perfectly healthy. I go to the gym 2-3 times a week and run for an hour(10 km in total). I feel absolutely brilliant after that. So I assume that I have enough energy.

    Therefore I am thinking that may be (just maybe ) those results are normal for me. I will obviously continue with the supplements just to see whether it will affect my body in any way. However I am a bit worried to over medicating myself with the vitamins/supplements if those results are just normal for me. Can it have an adverse effect?

  • Some can, some can't. You Don't want too much vit D or selenium, that can be harmful.

    Why are you taking folic acid? That's not the best form to take, and as I said before, the Bs should all be taken together because they all work together.

    In general, Bs being water soluble, you can't over-dose on them. The exception is B6. You Don't want too much of that.

    Actually, in a round-about way, a high TSH could be due to nutritional deficiencies. Nothing stands alone, it's all connected.

    I cannot comment on what is normal for you. But from our collective experience, we know that you have to try things first before deciding that you Don't need them.

  • Thank you Greygoose.

    I am taking folic acid as we want to have another baby. I know that my TSH should be around 1 to have a healthy pregnancy, so it may take some time to lower it.

    What is the best way of taking folic acid ?

    That's why I bought VitB complex , thinking that it should all be together. But now from Marz post I understand that there is not enough VitB12 in that complex and I need to take it separately.

    Now I am completely confused...

  • Well, a good starting point is getting them tested : folate and B12. If you've done that, then perhaps you could post the results to give us a better understanding of your levels.

    However, if you haven't had them tested previously, there's no point in getting them done straight away, because you've been supplementing, and that will skew the results. You need to be off suppléments for about 6/8 weeks before testing.

    Marz is right. There's not enough B12 in a complex because B12 needs to be high. A level of around 1000 is optimal. You won't get it up there with a B complex.

    What one usually does is supplement the B12, and take a B complex with it. One that contains methylfolate will bring up the folate levels because you Don't need high levels of folate.

    Folic acid is synthetic, and not always well tolerated or well absorbed. But it's what doctors usually give because it's the cheapest.

    If you're hoping to get pregnant, I think you should do some research into Folate, so that you know exactly what you're doing. :)

  • B12 189.6 (145-569), Folate 11.63 (10.4 - 42.4)

    I have been taking folic acid with my previous pregnancies. Did not think anything bad about it. In which direction should I research it?

    I don't understand. The range for B12 is 145-569, so are you saying that this range is completely incorrect and the level should be twice as high ?

  • Is that the active B12 test? Or the normal one? Looks like the active, but even there, it's a bit low.

    With the other B12 test, the one that's usually done, the range is often a nonsense.

    Why not try by googling 'Folic acid vs methylfolate'. :)

  • Your different blood test results can be because you had the test done at a different time of day. The TSH result in particular varies throughout the day. You should get into the habit of always having your blood test done first thing in the morning, having not taken medication during the previous 24 hours.

    I am really interested by your comment "but always taking care of myself and being 100% healthy all my life (barely had a flu in the past 20 years) ". I remember during the 5 years before being diagnosed with Hashi that I barely even caught a cold - I was just permanently healthy. It makes me wonder whether my immune system got bored with nothing to do and so started on my Thyroid gland. Can anyone else relate to this?

  • That's a very interesting point of view!

    Actually immune system works anyway. We all contact different viruses and bacteria on a daily basis. The fact that you/me did not/ do not contract any illnesses means that our immune system works well in fighting our enemies, to the point that we even don't feel/notice when it attacks and kills the first signs of viruses/bacteria entering our body. However maybe as it was so good in doing its job it started over-reacting. Just an idea :)

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