Frustrated and exhausted not depressed

Can someone suggest please whether I need to get my brain in gear and talk myself out of feeling tired.

Was severely anaemic a year ago. (Now sorted). Was found to be a coeliac. (Sorted!). But still exhausted. All the typical hypo symptoms. Pointed out my permanently swollen neck to gp. Got sent to endo. Who discovered high thyroid antibodies. Won't do anything though because my thyroid is apparently still functioning. The permanent fatigue I feel and foggy brain is due to depression aparantly and maybe I should take antidepressants. Suggests I should have another thyroid test in a years time. Gp won't over rule her decision.

Tsh nov 2.17

2nd July 3.12

17th July 2.68

Free t4 July. 11 (range 8-21)

Ft3 July 3.8 (range 3.8-6)

Anti thyroid peroxidase antibody 432.1 (range 0-34)

I've read so many similar stories on this forum. But where do I go now? I feel my only choice is to fork out privately to get someone to listen to how exhausted I am and how this is impacting on my life.

Any help or comments would be appreciated.

12 Replies

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  • No... Its not your brain... You need to find an endo who knows what he is talking about. many people have to find several doctors and endos before they get a proper diagnosis. Others just self treat and cut out the medics altogether.

    Your thyroid can still function for years and years, so your doctors assertion that there are no meds till your thyroid stops us clealy not going to return your health. (I still had high antibodies so presumably some thyroid, 20 years after first diagnosis)

    Where to go next? Hmmm... Can you afford a private endo? Or myybe see a doctor like dr Peatfield? Or change your Nhs doctor?

    Have a read of dr tofts book, understanding thyroid, it may give you an idea of how to argue the point with a doc... He says best to give thyroid hormones early so as to nip in the bud potential problems.

    Don't just sit back and do nothing though... It doesn't go away.

    Xx. G

  • I'm getting to the point of not caring about the cost, although that in itself makes me feel so angry that it's the only real option.

    How do you go about self treating. I know you can get natural equivalents of thyroxine online but how on earth would you know how much to take? Sounds a bit dangerous?

    I'm so frustrated because I trying to avoid stress and getting wound up as I can feel the adrenal drain (which I'm sure I'm suffering from too). But in order to get any help I just get so annoyed. Why doesn't anyone in the nhs acknowledge this condition with any level if concern?

    Thanks for replying.

  • Ps. Got the diagnosis. Just want some treatment rather than a 'wait til it breaks' philosophy.

  • Esther, scroll down to Guidelines and Treatment Options to read Dr. A. Toft's comments to Pulse Magazine "In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up."

    Email louise.warvill@thyroiduk.org.uk if you think it would be helpful to show the article to your GP or endo. Louise also has a list of member recommended endo's should you decide to see someone privately.

  • My niece is in the same situation. Seems that until the numbers are 'right' there is no way they will prescribe medication. She has seen many, privately and NHS. She is scared to self medicate so continues with her life as best she can. It's very hard.

  • email louise.warvill@thyroiduk.org who has a list of sympathetic Endocrinologists. (some private).

  • It's not particularly dangerous but you need to know what you are doing. Self treating really is a last resort, its much better to have a doctor on board.

    The doctors wont always acknowlege results, but You can get private testing of most things, ( including cortisol levels) by dealing direct with the labs. Details under tests on the left hand side of the thyroid uk website. thyroiduk.org.uk.

    Contact Louise, on here for lists of endocrinologists and doctors who have helped people in the past. ( Both private and Nhs).

    its a real pain that we have to fight for treatment, Specially when feeling at you worst. But hopefully you can see that there are several options available... Which s a start!

    Xx

  • With Hashimotos it is difficult for the Medics to understand and treat as it is an Auto-immune condition that affects the thyroid. They are not trained in that area - unless Immunologists are available with an interest in thyroid et al. Intervention is certainly suggested in most things I have read - to quell the attack on the thyroid from the anti-bodies.

    I have Hashimotos and have been on the journey like many others here. Self taught springs to mind :-)

    You may also be deficient in Ferritin - Folate - B12 - VitD - so it would be good to have those tested and the results need to be optimal and not just in range. Particularly the B12. Low B12 can mimic lots of Hypo symptoms and Hashimotos sufferers are usually deficient in lots of vitamins and minerals due to malabsorption in the gut.

    Your T4 and T3 are low in range - which would suggest the thyroid is not working as well as it should...do hope you soon feel better....

    b12deficiency.info/signs-an...

    Some people find that going gluten free can help with healing the gut and reducing anti-bodies....

  • Hi Esther, I would recommend Dr Peatfield's book - "Your Thyroid and how to keep it healthy" which us very informative about the thyroid vitamins and supplements and supporting your adrenal glands. Once you have read it you will be more informed about the treatment choices available. You can purchase this via Thyroid UK website. X

  • I am in a similar position at the moment, am paying out for private counselling which is proving very helpful, you need to find the right Counsellor though, he thinks I have Post Traumatic Stress Disorder which makes sense to me considering my background, I am also reading and following the advice in James Wilson's book on Adrenal Fatigue, again very helpful. It is imperative you keep away from any stressors, whether it is dysfunctional situations/people or lifestyle choices. Of course thyroid levels are extremely important and need close monitoring but we must tackle our health from different angles, stress upsets the thyroid and adrenals so it is no good just relying on the right medication we have to take our life in our hands and take back control. I hope this encourages by knowing others out there are tackling their issues from many different directions.

  • Wow, you have hit the nail right on the head. I'm off work today exhausted and am on the brink of applying for another job. You have reiterated exactly what someone else tried to make me see earlier on this morning. Your counsellor sounds great. You are lucky to find someone so supportive and helpful. I feel lost as to where to start to find someone to listen. There doesn't seem to be many out there. Thank you for your reply.

  • Glad it hit the spot. Google Counsellors in your local area and try to find one that fits all your requirements. I have many addictive personalities around me and I wanted a Counsellor who understood addictions, not all of them do, look at their credentials, the more the merrier, I have had counselling in the past and too often they sit there whilst you do all the talking with a nod or so which personally I did not find that helpful, I made it clear I needed good feedback this time and am getting just that. The other thing to do to help exhaustion is to go on You Tube for Mindfulness Meditation, it is extremely beneficial for stress relief. Find some short meditations to begin with and give your mind and body the rest it needs, Jon Kabat-Zinn is an excellent teacher. These suggestions will help you on your way to recovery, do not be too impatient, it takes time, stay in the moment and don't fret about tomorrow too much. All this helps to create a chink in the armour of exhaustion to enable you to make another step forward. If you would like any further info please do not hesitate to private mail me. Best wishes.

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