Im new, hashimotos, thyroid went under, dont want to take meds

Hi there, I was diagnosed with Hashimotos 2 years ago. My thyroid had been underactive, but normalised again, about 6 months later it did the same, I was tested 6 months ago thyroid normal, then when tested 2 months ago it was under again. My GP wanted to put on medications, but Im reluctant as I dont have many symptoms, and I wanted to be absolutely sure. Ive just returned to working after nearly 2 years on the sick, I have fibromyalgia and a boat of medical problems, including migraines, and am still seeing various doctors. However funnily I dont have exhaustion or most of the thyroid symptoms other than at the moment Im having sleeping problems but that could also be down to stress due to so much going on. Including a social security tribunal for when they stopped my benefits when I was really poorly.

Im scared about taking thyroxine. I havent heard much good about it. I dont tolerate medications well at all, I dont take anything for my fibro pain, I only take ibuprofen and maxalt for migraines as and when I need them. I really dont need to be off with side effects or suffering mentally any more with dealing with side effects of meds. I have been through so much in the last 2 years where I thought I was dying, they found a benign brain tumour, I have had episodes of severely reduced consciousness and dizziness, its been so bad that I have developed a kind of PTSD that comes on when I get really sick.

Anyway I have an appointment on Tuesday for an NHS health check and they are also going to check my thyroid. Im dreading it. I would rather suffer a slow suicide than get in the mess of thyroid medication. I am terrified of losing my job from getting sick from taking meds for a condition that doesnt seem to actually cause any symptoms. I couldnt cope with any more stress at the minute. Am I being stupid?

Many thanks

Shanmoo

16 Replies

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  • All of your symptoms, including fibromyalgia, insomnia and migraines can be symptoms of hypothyroidism (subclinical or overt). It may be that the levothyroxine will help.

    Around 87% of patients do well on thyroxine and feel much better for taking it. You don't hear much from them on sites like this because they are well and don't need further help. You could always try thyroxine and see how you get on. If it doesn't suit you, or provides no improvement, simply stop. Bear in mind that as you become more hypothyroid, you are likely to really need some thyroid hormone replacement.

    Obviously it's up to you what you do, but don't dismiss thyroxine as "bad" because for many people it is what makes them well. I should add that I am not one of those 87%, unfortunately, but I did give thyroxine a good go. I don't convert it very well.

    I don't think you are being stupid, you are being cautious and weighing up the options which is very wise.

    Carolyn x

  • I totally agree with Carolyn and know many people doing very well with levo, most notably those who have had their thyroids removed after cancer. The issue with it is not that it can have nasty side effects like say some antidepressants and statins might, but that for some people it simply doesn't work or doesn't work well enough. Unless you take so much that it gives you palpitations (easily avoided by building up dose gradually) the main thing to fear is that it will do nothing to help your symptoms but your doctor will declare you successfully treated. That is what people tend to complain about and they are the people who hang out on websites like this, myself included. Those for whom it works just don't come here and it is because it works so well for them that doctors won't believe it doesn't work equally well for others.

    I would suggest reading Gordon Skinner's book as it gives the best description of the range of hypothyroid symptoms I have seen. If you recognise yourself in them please give some kind of thyroid replacement therapy a try. It is much more likely to help than harm you. Dr Peatfield's book is very good at explaining the physiology and the treatment, and also teaching you how to treat yourself if you want to go the Natural Dessicated Thyroid route.

  • Hi Carolyn I have recently been told I may have fibromyalgia. I am a long term hypothyroid sufferer. I do think my symptoms are related to my thyroid condition. Interesting that you think the fibro.. Symptoms improve if the thyroid is well treated. She says I am in range but I get a lot of symptoms, some only minor. Do you think I should ask to see an endocrinologist ? Thanks harper1

  • Hi

    I'm so sorry I missed your reply on here. Sometimes I don't get chance to check everything now that I am working again. I do apologise. If this ever happens again and I don't get back to you within a couple of days, please do send me a message. It may just be that I missed your response in all the other email notifications.

    In regard to your question, it may be worth seeing an endocrinologist, but it would also be worth getting bloods for serum iron, ferritin, vitamin B12, folate and vitamin D. Deficiencies in these can cause your symptoms but they can also make it more difficult for your cells to use thyroid hormones. Getting these to optimal levels (not just "low normal") may help things considerably. Another one to check out is magnesium. This can help a lot with pain and headaches among other things.

    I hope that helps. Please do feel free to ask more questions and we will do our best to help.

    Carolyn x

  • Thank you Carolyn, you could be right that people who are doing well on thyroxine arent talking about it so much because they dont need to.

    I asked my doc about the migraine-thyroid relationship and she said no it wouldnt be affecting my migraines. Hmm.

    Well lets see what the tests say at the end of the week. Im still scared ....

  • I think that you'll find fibromyalgia, migraines and sleeping problems have all been helped by achieving decent thyroid hormone levels. I can speak from personal experience that taking a sensible level of levothyroxine, at bed-time, helped my sleep significantly. (Not that I was ever very bad.)

    People with Hashimoto's very often go through a period of varying thyroid levels. I suspect because at this stage the thyroid hormone levels are possibly not too bad, the conventional list of thyroid symptoms often does not seem to fit very well. But as levels do eventually drop so the standard symptoms often appear.

    With a brain tumour issue, I hope your doctors are not relying on TSH alone? Indeed, it would really help if you posted blood tests results and reference ranges.

    Are you being stupid? No, I suggest simply scared. I suspect most people at the point of starting on thyroid hormones either do not really appreciate the issues - or are scared.Both are quite understandable.

    Some people do fine on levothyroxine. Others find they need to consider desiccated thyroid or Liothyronine (T3).

  • Could levothyroxine affect my ability to drive? I have read some awful scare stories which suggests that it could, in particular head rushes and dizziness which I have had my fair share of due to an overactive vagus nerve which we have just got under control. I couldnt cope with that again. I need my car to get to my job due to my disabled body I cant use public transport. In a car it takes 20 minutes, with public transport it would be 2 hours including a half hour walk. I cant afford to lose my job either financially or mentally. Im earning only a quarter of what I should be doing, due to my disability, and luckily have hours that I can work my problems around - for now.

    Thankfully the brain tumour is something that sits on my brain stem and isnt affecting anything. I was seemingly born with it and its very small. However awaiting to see a brain surgeon about that together with all the other problems I have set off this PTSD I seem to have.

    I am very very scared about this thyroid problem. I had kind of hoped that Id never go underactive or that it would go away. Ive been through so much in the last two years I just couldnt cope with any more rubbish. Im still going through investigations for other issues.

    I should have the results by Friday afternoon. I will get the old ones out as well so we can see how much its fluctuated and changed.

  • Lack of thyroid hormone will eventually affect your ability to drive. I speak from personal experience, having had to completely stop driving as I knew that I was becoming more and more dangerous on the road. Lack of thyroid hormone affects the brain, causing many horrible symptoms (see the list of mental and emotional symptoms on the main website here thyroiduk.org.uk/tuk/about_...

    Please seriously consider giving the levothyroxine a go if that is what your doctor is advising. The longer you continue with too little thyroid hormone in your body, the more ill you are likely to become and the longer it can take to recover.

  • Hi Shanmoo,

    Sorry to read about your concerns! I just thought I'd pop my head out as I'm a lurker on here as I am part of the 87% who gets on well with levo. I'm hashi too, took me a while to start treatment due to 'normal' levels, but after tests showed reducing T4 levels and a positive anti thyroid antibody test, my doctor relented and gave me a trial. Almost 12 months on, I feel a lot better then I did without the medication, despite not having an above range reading before starting treatment.

    Can't comment on all of your other issues but I don't have any issues with levo and driving, and I have a 90 mile round trip daily for work!

    I take my levo before bed like Rod (helvella) above.

    Best of luck :o)

  • No need to be scared of Levo.

    Like others have said, your medical issues could be down to being hypothyroid. they are pretty typical of it to be honest.

    I don't understand your fear of Levo, I think you should give it a go. The vast majority of patients do extremely well on it. If you don't then you can come back and try plan B such as T3 or whatever, but try Levo first it's the simplest way.

    koala

  • I agree with all of the others and think your symptoms could all be thyroid related. When I was first diagnosed I didn't have any of the really typical symptoms like weight gain, hair loss and dry skin. My symptoms were headaches, anxiety, panic attacks, feeling faint/spaced out, tingling in my hands, feet and head and carpal tunnel syndrome. Unfortunately I wasn't one of the lucky 87% either but am now pretty much back to normal on Natural Dessicated Thyroid (which contains both T3 and T4). I really think you should give the thyroxine a go and see how you get on - hopefully it will help some/most of your symptoms :) xx

  • Hi shanmoo, I just don't believe any synthetic is equal to a natural supplement even if your body makes a monumental effort to make it usable. From your symptoms, it is highly probable you're body is not producing enough of what you need. If this were very recent I would try all other methods to optimize your hormones, checking your adrenal output, changing your diet to whole foods and avoiding processed foods, even checking for iodine deficiency. But at this point, after testing for thyroid levels, you might ask your doctor that you would consider a natural thyroid replacement since you have a brain tumor and also react to laboratory substances which might make your condition even worse.

    I would rather make my attempt for NDT now rather than take a chance on a T4 and try to get your doctor to change it later.

  • I do know that if you have an under active thyroid, overweight, sluggish. -slow metabolism - taking seaweed capsules makes the metabolism work quicker -seaweed, shell fish also has iodine which the body needs to function. If anyone has an over active thyroid they have to be very careful as the body has too much iodine and more iodine from seaweed, spuralina (spelling)?? shell fish...overload the body and dangerous, so take care. - I have had a roller coaster journey...from hyper to hypo and take 100ml Levo a day...I am still up and down - sometimes act as though I am hyper - then hypo - sluggish, find it difficult sleeping then waking up late and tired, not being able to concentrate etc....they overdosed me with radioactive iodine many years ago and I almost died!!!!! and that wasn't the NHS it was in another country...do take care....

  • Hi Shanmoo - Just to say that after taking 50mcg Levo. for a couple of years all my hypo. symptoms have disappeared and I feel fine. I know I am very fortunate but it does suit a lot of people and you won't know if you don't give it a chance. If it doesn't work there are natural thyro. formulas but you must have some kind of medication or you will be causing damage to your body and the longer you leave it the worse it will be. I hate the thought of taking long-term meds. but I see it as replacing a missing hormone rather than a drug.

  • Hey everyone,

    Thank you so much for writing and for all the info.

    Well we got the test results back today so theres the last and these one

    November: TSH 6.6 T4 11.6

    January TSH 5.44, T4 12.3

    In April my results were normal. I had abnormal results in October 2011. Normal results in March and April 2010, only TSh was measured then at 2.9 and 3.2.

    My GP has prescribed 25 mg of levothyroxine.

    Im not sure what out of all my symptoms is down to the thyroid and which is from other medical conditions I have. Anyway I had gone to the doc because Ive suffered for years with this wierd sore throat, and soreness and itchiness in my ears and eustachian tubes. For the last 18 months we assumed it was acid reflux and Ive been taking lanzoprazole. Anyhow its got a lot worse Ive got awful pain in my throat and ears when I talk, and Im losing my voice. My doc doesnt now think its from acid reflux, but she doesnt think its from thyroid disease either. Dont know if anyone has had anything similar. Ive been refererred to the ENT department anyway.

    Tiredness and fatigue I dont get so much of these days, unless I havent slept that well and then I feel terrible. I know that underactive thyroid can give you sleeping problems.

    The migraines and headaches Ive had since I was 16. They are related to menstruation and stress. They got much worse about 2 years ago but that could be down to having fibromyalgia. I cant take prophylactic meds for them and am awaiting to see a consultant about botox treatment.

    I do have quite itchy eyes and itchy skin where I had my flu jab?

    Anyway even though its strictly subclinical hypothyroidism, I gather the consensus is that you should take the meds ?

    Thanks :)

    Shan

  • Sorry that should have said the results for March and April 2011! Its been a stressful day

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