So lost

I'm now under the care of psychiatric help and they are all adement that low thyroid does not cause you too be bed bound and suffer with extream anxiety like I do...it's scared me ...I've been I'll sooooo long and tried so hard to get well ...they see my searching for help and home,abnormal and obsesseive...I'm so ashamed ,I can't get well and it's hurting my children to see me so distraught and lost...my husbands gone and I'm struggling to cope....I can't raise my thyroid levels,trying to come off seroxat after 20 years,can't go too the loo only 7-10 days,can't think ,look like an old lady,just weened myself off hc after 7 years on it,and done a saliva test,don't eat gluten as I had positive bloods but negative biopsy ,don't know how to start with gut health ,or if it's crucial,have no thyroid due too graves,have very high antibodies ,im now up too 31/2 grains of wp and still levels are very low,three years on 300 mg thyroxine and went mental and still low levels...is there any hope? I'm so sorry to be so negative and sad,I just cry in desperation every day,it's all too much...my eldest is so courageous and strong for me but she's a transsexual and suffers really badly herself ,yesterday she told me she drove too the moors and curled up in the boot and cried ,the stress of me and my desperate situation is destroying her...I didn't bring her into the world too cause such ongoing pain....my friends and family have drifted away,and I totally understand why....... Is there really any hope after 23 years of being on a little hampster wheel of desperation? I spend months in bed not able to cope physically , or emotionally,I was diagnosed with M.E 20 years ago after bad flu and working 60 hours a week nursing ... I'm sorry for everything and too everyone .......thank you very,very much for reading all this....I've reached out hundreds of times but I think I'm too complicated for help or hope.xxxxxxx. Tanya.

11 Replies

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  • Tanya, I am very sorry, as will all our members be, at your plight. It is terrible that you have to undergo all of these problems, more or less, on your own. I doubt the medical people know exactly what can manifest in a patient when she's not on medication that suits her.

    There has to be something wrong with a person who takes 3 1.5 grains of WP and is still suffering so badly.

    Have they tried you on high doses of T3 as I have read that can solve the problem if someone is thyroid resistant. I wonder if they have even heard of 'thyroid resistant people. where they need T3 at very high doses in order to get into the cells. To read the rest of this excerpt go to the link below.

    "Patients who have peripheral tissue resistance to thyroid hormone have normal thyroid test results before treatment with thyroid hormone. So, we don't know that they have peripheral resistance until we've treated them with plain T3. (Of course, we treat them with T3 as part of more comprehensive metabolic rehabilitation). A three-part therapeutic outcome tells us which patients have peripheral resistance.

    First, resistant patients recover from their hypothyroid-like symptoms and signs only with extraordinarily large dosages of T3 (called "supraphysiologic" dosages). Second, despite these large dosages—which might hospitalize a person who doesn't have tissue resistance—the patients have no indication of tissue overstimulation. (We use various objective tests to rule out overstimulation, such as serial EKGs and various biochemical tests. We also closely scrutinize patients and use various physical exam procedures such as the Achilles reflex test.) Third, although the patients have recovered from their symptoms and signs with high dosages that don't overstimulate them, lab tests show that they have extremely high blood levels of free T3.

    If these patients did not have tissue resistance to thyroid hormone, the high blood levels of T3 would cause severe overstimulation (termed thyrotoxicosis). Hence, we know the patients' peripheral tissues are resistance to normal levels of thyroid hormone. Unfortunately, we don't know the mechanism of the tissue resistance. But we're determined to identify the mechanism through further studies."

    web.archive.org/web/2010103...

  • Tanya, I agree with Shaws, T3 only might be the way to go. NDT doesn't suit everyone. It didn't suit me. I was worse on NDT than on T4 only. You're maybe not converting well, or maybe, like me, you can't tolerate any form of T4. On NDT I was practically bed-bound, not so much depressed as sad, and anxious, but wracked with muscle pain, put on about 20 kilos, etc. T3 only saved me, but I had to self-treat to get the dose I needed.

    Also, have you had your vitamins and minerals tested? If you are deficiant in some of them, that can cause depression, too. You need to test iron, ferritin, folate, vit D and vit 12 for starters. They all need to be at least mid-range - vit B12 even higher.

    I'm sure there is a way out of this, and together, all of us, we can help you find it. But you have to be prepared to try anything and everything. Take care.

    Hugs, Grey

    PS, I'm so sorry about your daughter's distress, it must be very hard for her. But it's not your fault, you must never think that. x

  • If your levels are still low you need to increase the NDT. Are you self-medicating? I had my thyroid zapped by radio-iodine and I've had to gradually increase Nature-Throid to 5 grains. My levels of FT4 & FT3 are now top of range but I still haven't much mental or physoical energy. I was taking 4 x Nutri-Adrenal extra daily; I'm having to increase that as well due to chronic emotional stress from a family problem. Dr. P. has said I can increase to 6 NAX daily if necessary.

  • The doctors are ALL wrong when they someone cannot be bed-bound through hypothyroidism. I believe they can and you're not the first person on this forum to say so. Trixie has made a suggestion you increase your WP and I think it's worth a try. I don't know if you've seen the following link which you might find helpful.

    stopthethyroidmadness.com/m...

    stopthethyroidmadness.com/n...

  • Tanya I am so sorry to read all this. Have you weaned off hc and Seroxat because you were told to or because you wanted to? I took low dose hc for a few years and had to have help to get off it. My salivary adrenal profile then took over a year to stabilise and show I was ok. Going off hc can be difficult for some people and going off Seroxat could be worse I think. I hope that the taper regime you're on is a suitable one because I understood that the withdrawal of things like that could cause adrenal problems, so I am a bit surprised that you were weaned off hc first. Are you taking any adrenal support at the moment to get you through this? I wonder how much of how awful you feel at the moment is due to weaning off these two things. Did you feel better when you were taking them both?

    By the way Dr Skinner's book mentions a bad bout of flu being a cause of hypothyroidism.

  • Framboise can you share with me what help you had reducing you're hc? Xxx

  • Tanya, I went to a Western Medical Herbalist who was recommended to me and who had experience in weaning people off major drugs as well. For about four months he made up herbal medicines to strengthen my adrenals and immune system, then I was able to taper the hc and stop it quickly as I was down to 7mgs by then. He continued to give me mixtures to support my adrenals for a further 9 - 12 months I think (weaker and weaker mixtures) but I haven't needed them or hc since then. That was four years ago and I'd taken hc for over 6 years. He didn't sell supplements, he actually has his own herbal pharmacy and mixed what he thought was needed every time I went. I would now choose his treatment for almost anything than go to a doctor, except of course major surgery etc. It wasn't a cheap route (£50 every three weeks I think) but it worked, but if you decided to go that route you must check the herbalist's qualifications, they're not all equal. If you want details of who I saw I can PM you - I don't work for him ;)

  • Tanya, I don't know enough to help you but I can feel your pain just from reading your post. I don't believe for a minute that you are the only person who is bed bound with hypothyroid problems though.

    I'm sending ((((big supportive hugs)))) to you and your lovely daughter and hopefully you can work with the good advice you're getting from others who know about being hypo (I've got Graves)

  • I would never wish an illness on anyone but at times it is so tempting! I hope you will soon see the light at the end of the tunnel.

  • So sorry to hear this Tanya- it can be so challenging to put the puzzle pieces together and feel better again, especially when often we have to do it all ourselves.

    Would your diagnosis of ME not explain to them being bedbound?? Or do they believe that it is all in your head as many in the Psychiatric profession do, unfairly. It doesn't sound like they are helping you.

    Maybe you could ask your daughter to read the replies here and the two of you could read up about ME, pacing and the need to rest, a lot!

  • Thank you all so much for you're support..... I'm scared to increase the wp until I get the adrenal results back so I don't over stress them,I can't afford to have them interpreted yet by dr myhill.

    It was a dr in Belgium put me on hc 7 years ago and I felt I needed to come off it too see exactly where my adrenals were without guessing ...does that sound sensible??

    The seroxat I've been on a high dose for 20 years and I've weened very slowly over a year only 10 mg,I hate the drug and don't think I should have been on it that long..

    My b12 is good,d good,ferritin good,I've paid for them all to be checked ....

    I don't know if it's worth having a stool test done to see how my tummy is,but who do you turn too for help? ......

    I can't think straight and I'm trying so hard to take in everything but there's so much and I can't retain things...it's very scary and lonely..xxx

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