Hashimotos sufferer

Hi there, i am a 40 year old female working part time ...I have hashimotos and suffering with joint pains, non pitting odema, low energy and mood alongside poor hair growth on my legs, reflux to name a few symptoms the latest symptom is rosacea around the sides of my nose . My tsh is 5.8 and normal according to my endocrine doctor wh has now discharged me asking as my blood glucose and vitamin levels are ok . Any suggestions ? I feel like my sugar intake maybe too high so just embarking on a anti inflammatory are diet . Any advise would be appreciated.

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  • The doctor is an idiot. and members will be along to respond as well.

    We have to read and learn and ask questions in order that we know more than doctors/endocrinologists.

    If you have hashimotos, you have antibodies which are attacking your thyroid gland until you are hypothyroid. One ex President of the British Thyroid Association states in a Pulse Online article that if patients have antibodies they should be given levothyroxine to 'nip things in the bud'.

    Email louise.roberts@thyroiduk.org.uk and ask for a copy and highlight the appropriate part and tell your GP you are now a member of the NHS Choices for information Thyroiduk.org.uk and have been given information.

    When you have blood tests for thyroid hormones it has to be the earliest possible, fasting but you can drink water. If you are on thyroid hormones, you allow 24 hour gap between last dose and the test and take afterwards. Always get a print-out of your results with the ranges for your own records and you can post if you have a query.

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

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

    thyroiduk.org.uk/tuk/testin...

    Hashimoto's is the commonest form of hypothyroidism.

    Ask GP for B12, Vit D, iron, ferritin and folate to be tested as well as we are usually deficient.

  • Hi Shaws and than you, I am currently on 100mcg of levithyroxine( sorry I forgot to mention it) I have some blood results on their way so I will post the results. It will be very interesting to hear what the members respond with. I'm just concerned that they won't raise my medication if it needs to be at 1 or lower but they think 5.8 is sufficient? I have up smoking last year and 6 months later I felt very I'll. Turns out my tsh ended up at 87 and I have not completely recovered.

  • It takes a long time to recover and it takes a long time to become hypothyroid so it stands to reason that it cannot be a quick-fix as we're dealing with hormones. No wonder you felt very ill with a TSH of 86. By your doctor's response, it does show how inept their training was if they ever got any with regard to thyroid hormones. Considering they drive our whole metabolism from top to toe.

  • Thank you I did feel very unwell my test results for the following in December

    T4 9.00-19.00pmol/L

    T3 2.6-5.70pmol/L

    My tsh is now0.58 so yes I suppose it's a waiting game I just thought my pains would subside so I'm guessing a deficiency maybe.

    Thanks for your help.

  • Sorry in December free t4 reading14.5 and free t3 3.5

    Reply

  • The only thing out of range was my eosinophil count at 0.36 and the range is 0.03-0.28 the endo said it's only just out of range and said it still doesn't tell us why it's raised?

  • I am just guessing, as you haven't given the ranges but your FT3 looks on the low side of the range when it should be toward the upper part.

  • You've given the ranges for T4 and T3 but not the results.

    Free T4 and Free T3 are different than T4 and T3, just to make it complicated for us. This is a link and you will note FT3 and FT4 in particular.

  • The TSH level that will render you hypothyroidic (for a given medication) is a number that is worth finding out because, from my very limited experience, it is very individual. I have just finished an experiment where I found out that a TSH of 1.15 mIU/L (.4 - 4.5) renders me so hypo that I could hardly walk - leg muscle pain is one of my first hypo symptoms. My very first symptom is lack of ability to fight off colds and the 'flu.

    And yes, I concur, after becoming so hypothyroidic it is not a quick fix to get back to normality, it has taken me two weeks to feel reasonable again, back on my regular dose.

    Read up all you can on this subject, you have to stay a couple of steps ahead of your doc - otherwise you will probably stay feeling ill. You have to get to the point where all you need from them is a prescription, you are on your own for the rest - sad as I am to say that.

  • Barfida Is TSH the only thing tested? What about FT4 and FT3.

    It would help to give reference ranges when giving test results (they vary from lab to lab) but even without the range we know that your TSH is high. Is it over range? It's certainly not normal. In a healthy person it would be around 2 or lower, in a treated hypo patient the aim is for TSH to be 1 or below, and for Hashi's patients a suppressed TSH helps reduce antibodies.

    Are you on thyroid meds?

    What are your vitamin and mineral levels? We need them to be optimal for thyroid hormone to work properly (our own or replacement) and 'in range' doesn't mean optimal. If you post your results with the reference ranges, members can comment and suggest if supplementing is needed.

  • Seaside Susie, thank you for your reply . I am just waiting on a blood test which will include tsh, blood glucose, thyroid antibodies, vitamin b12 and vitamin d. My t4 and t3 levels were normal before Christmas but my tsh was at 9 and antibodies 448 . All other mineral levels were ok just an inflammation reading slightly raised but they cannot suggest why. Getting them to check t3 and t4 is really difficult and getting them to raise the dose is a nightmare if they think it's in range. When I get the results I will put the ranges up. Thank u .

  • When you get your blood test results ensure you get the ranges. Otherwise if the GP refuses to give them to you - and this unfortunately isn't rare on this forum - then the only thing that you can do is get them retested privately.

    The reason for this is we need to know where in the range you are for things. GPs and other doctors tend to say your level is good even when it isn't.

    Also if you have a recent e.g. in the last 6 months, full blood count also called a complete blood count get it off your GP. Otherwise you may find posters asking you about measures that are part of this.

    The reason I'm saying this is for example to donate blood* you need to have a haemoglobin level of 12.5g/dL to not end up with iron deficiency anaemia. However the lower boundary of the NHS level in some regions is 11.5g/dL. Some doctors will say you are "fine" or "have a good level" if your level is 11.9g/dL but the fact you cannot donate blood clearly means this is not true.

    *As someone who has badly treated Hashimotos don't even think about donating blood as it will make you very ill.

  • You need Free T4 and Free T3 and I'll give you a link as to the reason. The lab may not do them if your TSH is 'in range'.

    However, if we are hypo, we have to have a TSH 1 or lower. Another doctor and endo who are useless in relieving clinical symptoms of their patient.

    thyroiduk.org.uk/tuk/testin...

    You will probably be surprised by the link below:

    thyroiduk.org.uk/tuk/testin...

    We have private labs who will do the tests required, if GP wont. It might be worthwhile having private ones as members will interpret them for you.

    Levothyroxine is T4 and is inactive. It has to convert to T3 (liothyronine) and it is T3 which is needed in all of our receptor cells, otherwise we don't feel well. I think this must be a hidden secret as the professionals seem to be unaware of this phenomenom.phenomenom. :)

  • Sorry I forgot to say I'm on 100mcg levothyroxine.

  • Barfida As you are on Levo, your TSH should be 1 or below and free Ts in the upper part of their respective reference ranges if that is where you feel well.

    From ThyroidUK's main website > About the thyroid > Hypothyroidism > Treatment Options thyroiduk.org.uk/tuk/about_...

    ' According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

    Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)." '

    Dr Toft is past president of The British Thyroid Association and leading endocrinologist.

    You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org.uk , print it off, highlight question 6 and you can discuss it with your GP.

    You can tell your doctor that because you feel so unwell you have taken advice from Thyroid UK, which is NHS Choices recommended source of information for thyroid disorders (I am assuming that you are in the UK).

    Private testing can be obtained from Blue Horizon or Medichecks for any tests you can't get done with your GP thyroiduk.org.uk/tuk/testin... Both do reasonably priced fingerprick tests to do at home.

  • Barfida I forgot to say that as you have Hashi's, you can help reduce antibodies by adopting a strict gluten free diet which has helped many members enormously. Gluten contains gliadin which is a protein thought to trigger antibody attacks.

    Gluten/Thyroid connection - chriskresser.com/the-gluten...

    Supplementing with selenium L-selenomethionine 200mcg daily also helps reduce antibodies, as does keeping TSH suppressed.

    Hashi's Information:

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

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

  • Thank you, dietry changes is definitely something I'm looking into .

    Thank you for the links.

  • I was diagnosed hypo 10 years ago, put on levo and then went downhill 3 years ago and asked GP for anti body test which was positive for Hashis. No treatment offered, just same dose of levo but thanks to this site I learned about Gluten Free diet.

    The inflammation you mention is due to the fact that you have Hashis! Do try a gluten free diet it helped reduce my antibodies and many on here have had similar success. Your Vit D and B12 need to be at the top end of the ranges, within range isn't good enough and your TSH needs to be below 1. If you can I would recommend private blood tests, finger prick. I have just ordered from medichecks for £79 and they will test TSH, T4, T3, antibodies, Vit B12, Vit D, Ferritin and folate. NHS will usually only do TSH (A pituitary hormone-not a thyroid hormone) and occasionally T4 if TSH is low. They never ask for T3 which is the active hormone that every cell of your body needs. If that is low in the range you can expect to never feel full of energy!

    PS your endo should be sacked. TSH of 5.8- my first GP put me on levo at that level and kept increasing my dose until it was down to 1.

  • Hi crumple,

    Thank u for the information. I have been tested for gluten and lactose intolerance but they can back negative too!

    I am being tested for hpylori as well, its something I've had I the past and they testing me again. I definitely feel that what I eat effects my system wether that be hpylori or an in tolerance. I keep pushing the gp; so dental allergy and skin tests are going to be done and an adrenal fatigue test as well.

    It sounds like maybe I dont need so many other tests if my ranges are just not optimal .

    Thank u so much for the private testing info because I have asked my gp surgery and they could not recommend any where for private testing.

  • The gluten test is not infallible and also there are plenty of folks who test negative yet improve a great deal on a gluten free diet. There is no harm in trying gf free, give it at least six weeks.

  • Also it is well documented that giving up smoking can trigger thyroid issues - especially Hashimotos

    verywell.com/cigarette-smok...

  • Hi slow Dragon, absolutely and you are at risk if developing it once you stop as well. I became quite Ill whilst stopping smoking and went from 25mcg of Levi to 150mcg in 5 months . I restarted because I felt very stressed at the time (No excuse) but now it's made it harder (physcologicaly) to stop.

    Thank u for the link I will definitely have a read.

  • So sorry you dont feel well................sounds like you aren't on enough thyroid hormone - as the low growth of hair on legs is a symptom and reflux and low energy etc - WHOW just re-read your post your TSH is far too high - you need more thyroid hormone - go back to medic who said you are OK and tell him this is not right. At this level TSH you will be suffering with hypoglycaemic events - whoever has said you are OK IS WRONG

  • Hi there, thank u I will see what reading I get this week from the bloods.i will post the result and ranges .... I didn't take my dose either before these bloods so it will be interesting what they say. I definitely notice more hair growth when my dose is Increased but they do not listen.

    I have been noticing sugar is having an effect because I crave it alongside salt!

  • I have also posted my most recent results on here however I cannot see the most at the moment . Tsh is 0.58 not 5 as I was told over the phone.

    Really appreciate all of thecomments And advice.

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