Little update

Thank you all for your support last week. 8 had my diabetes test and it was clear. Sadly I had a nasty anxiety attack in the nurses room after the blood test and made a right fool of myself. She had kept me waiting 45 minutes so plenty of time for my anxiety to hit. Oh well I got through it.

After I spoke to my gp last week and he told me with my tsh at 5.33 and my t4 at 11 im fine and not even borderline hypothyroid I talked to my friend and ahe is borderline and has been told by her gp that once over the lab range she will be treated. My gp told me he wouldn't treat me until my tsh reached 10. Now why is this if the tsh lab range is 0. 35-5.5?

I also spoke to my gran and she told me her sister has an underactive thyroid and has since she was a child aswell as low iron. So it seems it's om both sides of my family.

I'm struggling with anxiety. It's a physical anxiety like a general anxious feeling. I do suffer anxiety but never this physical. It has been going in a few weeks and feels very hormonal, like how I do the week of my period but all the time. I just generally feel emltomal, racing adrenaline rushing around my body and a general anxious feeling. It was awful today. Hormonal anxiety is tough.

Just a quick update 😊

28 Replies

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  • Jingyd, Most GPs will treat when TSH is over range. There's no need to wait until it hits 10, see every GP at your practice, and change practice if necessary.

    If you are offered anti anxiety meds or antidepressants it may be worth trying to see whether they help with the anxiety while you wait for TSH to rise over 5.5.

  • Thank you.

    I can't believe my own gp said u wasn't borderline. Surely if my tsh is 5.33 and thr lab cut off is 5.5 then I am borderline?

    I'm on an anti danxiety which was helping until recently.

    Thank you.

    Ju

  • Jingy, most GPs would see 5.33 as borderline, yours doesn't because he thinks treatment shouldn't start until 10.

  • Clutter,

    I've been reading lately from some practitioners (for example, the Thyroid Pharmacist Isabella Wentz) and some others that most hypothyroids feel best with a LOW TSH, under 2.5. Is this a difference in U.K. and U.S. physician thinking?

  • Klagh, unfortunately some doctors either side of the pond think TSH mid range is fine and dandy, and consequently keep their patients undermedicated. Most patients will feel well with TSH just above or below 1.0, but some need it lower, or suppressed, to feel well.

    Read Treatment Options in thyroiduk.org.uk/tuk/about_...

  • Change doctors. Find yourself one who goes by signs and symptoms. Its not easy, but neither is being hypothyroid. May be worth you getting your antibodies tested privately. If you have antibodies the doc should treat at 5.

    Testing details on the home page at thyroiduk.org.uk

    Xx g

  • Thank you G.

    I'm seriously considering a private test.

    Ju

  • Ju, if your doctor is so ignorant that he won't accept the results of his own tests, I very much doubt he's going to change his mind when he sees private tests. It's not the tests at fault, it's your doctor.

    Save your money and find a more educated doctor. Even if this one does start to treat you, he's still going to keep you ill because he doesn't know any better.

  • I agree Greygoose. I was thinking even if I presented him with private results i am sure all the GP's at that practice would say that they still aren't allowed to treat until my TSH is near 10.

  • Yes, well, they're exaggerating a bit there. It's more like they're scared of treating because they Don't have the necessary knowledge. There's no law stopping them.

  • My two cents worth on this topic. I did my own private tests which revealed a wealth of information, I paid for a complete thyroid panel it wasn't cheap but it was the right thing to do. The first new doctor I encountered was doing fine until I supported my symptoms with the private test results. She asked to see them - and I was thrilled, someone was going to take an in depth interest. She began to copy some of my results into her (my) file. She didn't take long copying and just before I left the room I asked her what she had copied out of my results. She answered, "You're TSH and T4, that's all we need!" My heart sank, I guess I'm on the road again for an enlightened doc.

  • Hello Jingyd,

    Your TSH indicates board line hypothyroidism and there is a known link between anxiety and low thyroid hormones, which also could account for blood sugar issues and a dry mouth.

    Ask at your surgery for a second opinion as you need thyroid hormone replacement, explaining you feel clearly symptomatic and have hypothyroidism on both sides of the family.

    The adrenaline you feel is excess, compensating for low thyroid hormones. It is not good long term and if you wait until your THS is over 10, you could feel a lot more unwell with a great many more symptoms.

    Your previous posts indicate low levels of ferritin and B12... These could be contributing to the anxiety & dry mouth as well and although you are supplementing, both could take a while to raise to optimal levels. Vit C taken with iron will aid absorption.

    When you have thyroid hormones tested again ask for thyroid antibodies TPOAb and TGAb to be done. Hashimotos Auto Immune Disease can have big neurological effects and also be accountable for all your symptoms.

    Doctors usually treat hypothyroidism when TSH reaches 5 in Hashimoto sufferers.

    Also booking your blood test for first thing in the morning and fasting will ensure TSH is at its highest.

    The good thing is Jingyd, you are aware of what is happening and have already started your journey by supplementing deficiencies. Once eventually medicated on hormone replacement, you will feel better.

    Good luck,

    Flower

    This link explains the importance of supplementing for people with thyroid issues

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

    This link explains the link between anxiety and hypothyroidism

    hypothyroidmom.com/are-you-...

    This link explains Hashimotos

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

  • Thank you so much for your advice.

    I've spoken to 2 Gps now and both say I'd not be treated until my tsh is 10 and both ssid my t4 at 11 is normal. They even said my b12 was fine (212). I feel I'm fighting a losing battle.

    My gp agreed to re test im November. I will be asking for the antibodies teSt for sure.

    I'm finding thid anxiety tough. I've not had high anxiety for ages and im not sure how to cope with it. I don't want medication from the gp ao trying to fund my own way as ive got through it in the past im taking an anti depressant for anxiety and if was helping.

    This forum has given me so much advice it's been so helpful.

    Thank you

    Julie

  • Antidepressants can exacerbate low thyroid symptoms confusing the matter even further. Doctors will not agree with this, just as they are refusing to give you much needed missing thyroid hormones.

    Many here have been offered antidepressants, beta blockers, and PPI's when all that is usually required was balanced thyroid hormones.

    I would insist on thyroid antibodies bring tested asap as opposed to waiting until November. If high, your doctor may be a little more tempted to prescribe. Especially if you present extremely symptomatic.! ! !

    I know you feel as if you are banging your head against a brick wall Julie. A lot of us have been there and that is why we are on this forum.

    After four years, I recently had much needed additional thyroid meds prescribed only for my local CCG to withdraw them two months later. It is an ongoing battle but we all support each other here and can offer great advice.

    Flower

  • Thank you Flower. I started struggling with anxiety 3 years ago which was caused by my extended family causing me alot of stress. I now keep them at arms length and that has helped alot. It triggered alot of anxiety and agoraphobia but things had settled. Then the fatigue hit in March and my anxiety has risen ever since.

    I watched a video on YouTube, it was Dr Chris on This Morning with a lady who had hypothyroid symptoms for 20 years or so and wasn't treated. I could relate to so much of what she said. I think she uses a forum board, it could be this one as she did mention thyroid uk. It was an interesting watch and Dr Chris even said GP's go by numbers and refuse to treat which is just awful.

    i am sorry to hear you've had trouble with your GP too.

  • ONE MORE THING - one of my "so called" doctors - *!##!!$** - the past year WOULD NOT raise my T3 medication but strongly advocated that I take Adderall (an ADHD drug) for the Hashimoto's brain fog and malaise, lack of motivation. I tried it for a month. Adderall definitely motivated me but I almost had a nervous break down. Stay away from that stuff!!

  • I think you will learn so much about your thyroid if you have time to watch. So many people here have allowed there health to deteriorate because of the rigid regulations of the NHS. Seriously, you needn't wait to become more ill. Many of us simply purchase our hormones as they are easily obtained now.

  • Flower,

    Exactly so!!

    FYI, I have added Thytrophin and ubiquinol (OTC), only been using them about a week. (IN addition to all my vitamins, minerals, thyroid med.) Felt amazingly good last night. Is that a sign the Thytrophin and ubiquinol might be helpful? I'll keep you all apprised.

  • Hello Klagh,

    Let's hope so ...

    I have not heard of others on this forum who have used Thyrophin but have been reading about both the ubiquinol and ubiquinone forms and the different roles they play.

    I presently supplement Nutri Advarnced CoQ10.

    Flower

  • Think about treating yourself. You are obviously hypo with your t4 at 11 and a tsh as high as yours. Also so your b12 is dangerously low you must supplement with a sub-lingual lozenge or drops. I am sorry you are being so poorly treated but I dont think you are going to get very far with your GP.Perhaps you also might want to change practice to get more support. Sorry if I sound bossy I am just very cross with your hopeless GP

  • Thank you.

    The first GP I saw was great and he said it definitely sounded like an underactive thyroid and he told me to get my bloods done. Then 2 GP's since have said that I don't need treatment and that I am not hypothyroid. It's madness.

    I was also told my B12 was normal at 212 and no action was needed. I have bought a b12 spray and i take it 4x a day, the dose is 1200ug. I am taking spatone for my low ferritin (15) as I can't stomach iron tablets.

    He even said I needed testing for diabetes last week which threw me into a huge panic attack at the nurses office. It was all the stress of all these tests and getting no help with what is actually wrong. I feel as though I am going mad and they are the ones making me feel like that. Telling me that my thyroid is normal and that there is nothing wrong with me.

    My mum has an underactive thyroid, my mums sister had to have hers removed, my nans was over active and now I found out my gran on the other side, it's through her family too. I wish my GP would listen.

    Thanks for your reply.

    Julie

  • Dear,

    I'm in a different country than you and I have EXPERIENCED THE EXACT SAME THING - I have Hashi's, hypothyroid runs in my family, but in the past, and even in the past year, doctors telling me my numbers are "within lab test range," so no more T3 for you! So, physician ignorance and ineptitude knows no borders!! I pray that you can manage to get what you need so that you will get better. I feel deeply for you because we are fellow sufferers!! I pray for progress in your condition!!

  • Jingyd I had anxiety appear out of no where years ago took them 3 years to find out I was hypothyroid I was 5.5 went on thyroid medication and within 2 weeks my anxiety was gone!!! if I get adrenal fatigue my anxiety comes back the 2 seems to run hand in hand.

    If I know what I know now me personally I would not have gone on levothyroxine, low thyroid for me was not getting the right amount of vitamins and minerals, low iron and B12 and D3.

    You could try supplementing with L-tyrosine, selenium, lugol's iodine, vitamin C, a strong B compound, zinc, copper, taurine, ashwagandha, flax seed oil, adrenal support, sublingual B12, magnesium, D3, iron and vitamin E and see if you can jog it back to normal. You would need to google and find the right does for low thyroid.

    Katherine xX

  • Thank you Katherine

    I had a stressful time 3 years ago with my extended family which led to me struggling with anxiety and depression. I had to go on meds, I wish I hadn't now as I want to wean off but find the prospect terrifying after doing some reading online about withdrawal. If I had my time again I'd have dealt with it differently.

    I am supplmenting my iron and b12 myself now. I take a Biocare multivitamin and minerals supplement which has a good dosage of vitamins. I also take magnesium but I think I need to get a better one as it's only Tesco's own. I am trying to bring certain foods into my diet too. I eat flaxseeds daily in my porridge, I add a couple of tablespoons. All great advice and I shall done some more research on what I can do myself to help my thyroid.

    Thank you

    Julie

  • Awww! stress has so much to answer for darling you might want to add organic brown basmati rice to your menu darling making sure you eat a huge bowlful a day it does wonders for the immune system and plenty of organic green veg and 2 eggs a day free range no corn fed chicken eggs the yokes should be a deep orange red.

    I did not start to feel really well until I started taking selenium daily we are so short of it in our diets now. xX

  • If you are not being treated for an underactive thyroid then you will get anxious. It's one of the many symptoms.

    Karen

  • I thought it must be. It's pretty tough after doing so well anxiety wise for a while.

  • You need thyroxine (and possibly a new doctor!).

    Karen

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