Recent diagnosis of Underactive thyroid - Thyroid UK

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Recent diagnosis of Underactive thyroid

Cherubhmm profile image
26 Replies

I discovered here purely by chance yesterday and have been trying to empower myself by gleaning information. I am actually feeling more dismal! I can't get my actual results until Wednesday (I'm away until then) so I don't know where I stand. I've been given the startup meds!

From reading on here things are clicking into place. I was diagnosed with fibromyalgia a couple of years ago and was given painkillers for it to take as and when. I have the most DREADFUL palpitations and racing heart...the GP said it was due to anxiety and the stress I've been under. I've had heart traces done and 'all is normal', but they frighten me. Ive been given diazepam to take if the palpitations become a nuisance.

I cry. Oh boy, do I cry..at the drop of a hat! It is embarrassing! This past week because I have been more busy than usual I actually am suffering from terrible exhaustion..I found it hard to move my arms last night or put one foot in front of the other. I'm going on..but I'm just saying that this site has opened my eyes.

I'm trying to get my head around the situation. I want so much to feel better again and in control and have energy. My other half is trying to understand but he thinks that researching is going to make me feel worse. I want to know ..are there any NATURAL remedies to help? Unless I've missed it on here, what vitamins, minerals, healthy eating patterns could help me. What about the other pills I've been prescribed..the Diazepam and the Codiene Phosphate. Will these affect the Levo?? My GP, a new one to me, was most unwilling and unhelpful in advice.

Sorry to whinge on! I feel so very alone with the 'problem' right now.:-(

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Cherubhmm
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helvella profile image
helvellaAdministratorThyroid UK

We have a standard list of other things that we so very often see being low alongside hypothyroidism. Ideally you would be tested for:

vitamin B12

folates

iron/ferritin

vitamin D

Fibromyalgia, anxiety, palpitations despite 'normal' heart, exhaustion, - yes - you ARE a hypothyroidism expert already. :-)

Many, many people get considerably better, quite quickly.

Advise you get the actual numeric values and reference ranges from ALL tests you have.

Have you been tested for Thyroid Peroxidase antibodies? Most people with hypothyroidism have an autoimmune disorder in which the thyroid is attacked by lymphocytes. This results in antibodies in the bloodstream which are used to see if that is the case. In my view, everyone diagnosed hypothyroid should be tested, if it has not already been done. Treatment is the same but there can be reasons to want to know.

If you search around the web you will find thousands of pages offering all sorts of things for thyroid. Be very wary. Be aware that taking iodine (in any form, including seaweeds such as kelp) is very controversial. We have had many threads here - suggest, if you are considering anything like that, you have a look at the history here (search box near top right of page).

Codeine is well known for causing constipation. Many hypothyroid people are already constipated.

Be careful with diazepam. In small doses, and not taken continuously, it has its place. But in larger doses, or taken continuously, it can be seriously addictive.

Take your levothyroxine away from food, drinks (other than water), supplements and other medicines. So very many substances affect absorption of the levothyroxine - ideally a two hour gap either side of taking the levothyroxine.

Some people take their levothyroxine at bed-time rather than,as usually suggested, in the morning.

thyroiduk.healthunlocked.co...

Rod

storm profile image
storm

Hi, hopefully someone will come along soon, but just to say I fully understand your frustration. I had years of high stress and anxiety, became hypothyroid, with antibodies, so auto immune. As yet doctors have not found (or particulary looked) beyond the hypo.

The one major thing I did was stop pushing myself, so I ended up off work sick and whilst that is stressful, I now realise I had to do it, I decided I needed as much rest as possible, no alarms, do as much or little as felt able etc.

Now whilst I am far from cured and trying to get my head around this lifelong illness (as it normally is) I am researching, learning and yes, you do get confused, wound up, but I am determined that as stress caused this, I hope to improve it, even if it isn't cured.

I haven't had the money for private testing, nor vit testing etc but I would try to establish if the main ones are lacking. You will see things like selenium, B12 plus D3 combinations that should be considered, but you must establish if lacking.

Then there is adrenal fatigue to establish. Blood tests will reveal the state of hypo thyroid and levels of TSH, T4, T3 antibodies etc (but the GP needs to check and they do need a shove).

I am far from qualified to advise, so please just take this as a courtesy response, as understanding your frustration.

All these conditions are complex and GPs are only trained to treat symptoms with conventional medication, which may be the only way, but some of us are trying various adjustments to diet and vits etc, as you just don't know, it may help a little.

I would say expect no miracles, but I would defo type searches into the internet for natural cure and see what you discover, that you could safely bring into your daily routine, but always read up and seek advice on the risks, even some foods and vits have risks.

I need to get off here (no sleep at all, all night) but whatever you can do, to rest is my first advice. Some of us need to be stronger at saying no, lol :)

Cherubhmm profile image
Cherubhmm

'Have you been tested for Thyroid Peroxidase antibodies? Most people with hypothyroidism have an autoimmune disorder in which the thyroid is attacked by lymphocytes. This results in antibodies in the bloodstream which are used to see if that is the case. In my view, everyone diagnosed hypothyroid should be tested, if it has not already been done. Treatment is the same but there can be reasons to want to know'

Yes, I believe so..this is something the GP did explain to me. Yes, one of the first natural solutions recommended by a friend was Kelp ..so maybe I will stay from that.

Storm...yes..frustration! Frustration that 'people' haven't taken me seriously over the past couple of years. Tiredness, inability to sleep..oh yes. Vicious circle.

I often wonder if certain individuals are prone to this ....at the age of 18 I had six months of glandular fever, followed one month later by chicken pox! I feel now like I did when I had the glandular fever.:-(

shaws profile image
shawsAdministrator in reply to Cherubhmm

If you want to reply to a specific comment, you have to press the blue Reply to this otherwise the person isn't emailed and you may wonder why there hasn't been a response.

storm profile image
storm

I first crashed down ill in my twenties, also after stress, but there was this question mark M.E./CFS which was never proven, so not knowing what was wrong with me, I gained bad anxiety, panic attacks, agoraphobia etc. I have been tired ever since, but tests were always normal for thyroid up til this last 18 months. So I had already dealt with many years of abnormal, but I coped, now this auto immune hypo thyroid has really upset me too. I am in my forties and even the thought of life on meds from forties is a major upset for me. I know other people have worse.

I have cousins with fibro and rheumatoid arthritis, but my near family has zero auto immune/thyroid issues etc so more confusing why, how etc....but I am the one with the highest stress levels that pushed myself beyond fatigue for years.

Allegedly there are certain illnesses that might cause auto immune diseases, but as far as I have got, in all this research is that nobody solidly can tell you.

I am trying to be wise and not hang on to all suggestions, I do like one or two theories, but that might be someone's opinion..

A bit like selenium, the right amount, the right sort and careful as can be toxic....MIGHT reduce antibodies and it MIGHT assist other auto immune conditions, then again you may read something where someone says it didn't, so you get wound up again, but I confirm I am intermittently eating two or three brazil nuts a few times a week...in hope. ha ha....allegedly once told you have antibodies, then you will be lucky to get them tested a second time. I am going to ask anyway, although that only relates to the thyroid ones and if I remember rightly the lab only did one type. But I would like to know if they have gone down, as there may be hope.

Other simple things like vit C in the ascorbic acid form (so I read) helps, but may take a number of months to notice.

I can't believe, it is literally this week that some cheap bassetts vits (I know no good) seem to have taken a little bit of the pain out of my legs and I don't have fibro, that I am aware of, but do have some awkward stiff ache and tightness that throws my balance, oh and I feel like lead, lol. I only grabbed these cheap vits from supermarket as an interim, my agoraphobia means I can't go out and about easily, I saw they had a small amount of D3 and some other vits and thought better than nothing, then I hope to get it tested properly soon. But I think I have seen it works with some other vits/minerals and have seen it tried for fibro too.

I am a nightmare with tests, real issue, but if I am going thru that trauma, going to ask for B12 etc, at least I will know whether I can rule it out.

Mention of giving up bread and dairy etc.....oh what a tough one, I live on it....have tried to eat more meat and veg, but then certain veg/goitregens are a possible problem.

It is all so unclear and uncut isn't it....but at least the food thing can be tried.....I mean... if I had more money and willpower and didn't dabble in a confused, tired state, wondering what to eat for the best. One person says cut something out, the next person says you need it...

Ok, I have to go now, but stay strong and people on here are really great :)

shaws profile image
shawsAdministrator in reply to storm

See my comment re replying to a specific comment above to Cherubhmm.

Cherubhmm profile image
Cherubhmm

Thanks for all that. Sounds like you have had a tough time too. I was born with stress! My mother gave me her stress throughout my life. In my 30's after 14 years abusive marriage, I lost 3 1/2 stone within a few months. My potassium levels were nil apparently. I had low iron levels. It took a year to gain the weight back..I wasnt heavy in the first instance. The doctor told me I was likely to have problems in later life. I am quite pro natural remedies. I remember being told B12 supplements would help me. I also had an early menopause due to the stress....after having five sons!:-). I was left with stress, anxiety, panic attacks, palpitations ( which have been known to almost make me pass out) and clinical depression. Like you..it's a load to deal with. My concentration is absymal as is my memory..that's frustrating.

My mother had oesteoarthritis and oestoporisis. I kept breaking bones the year before last and it showed up I had the start of the latter! I sound a disaster! I'm not really! I'm just looking to feel well again and not burst into tears if I'm speaking to anyone on the phone..it has been known. I often wonder if trauma can affect your body..I'm sure there must be a link. In the last ten years I've had the aforementioned, a child born with spina bifada, both parents die, my best friend die and a divorce. I was a carer for 25 years to my mum, then my son.

Ah well. Vitamin C sounds good. I'm sure my intake is inadequate. I read that probiotic yogurts are good. Today I'm just tired..not exhausted. My hands aren't good. I find having aromatherapy helps my fibromyalgia and also Reiki helps my general well being. I'm fortunate that I have a good friend who practises both..they can be expensive treatments. Sunshine helps..we are seriously lacking that in the north west!!:-) and rest..I try a lot of distraction therapy for my depression and anxiety symptoms..I learned how to spin on a spinning wheel and it doesn't take much energy and its very relaxing for me. Also I found yoga helped.

I'm glad I've found here as it helps tremendously to share and not dwell on the problem thinking you are alone with it. And just one note..I'm not all gloomy and I do try to be positive !and help myself..hence the questions!!:-)

storm profile image
storm in reply to Cherubhmm

Indeed it is all incredibly much to deal with, however, I am only just learning and whilst there are clear suggestions of vits/minerals etc to try, I am only now just taking seriously, because of so many weird symptoms of a scary nature too. Must have thought I was invincible in the past or something, lol.

Whilst we just don't know precisely, your picture is telling, what some articles on the internet have said....so definitely get the major vits checked, also one may need another to work and at a recommended level, which is above what you buy in a supermarket...ermmm as I have been doing. Note to self, demand the doc does proper B12 and D check and try for folates this time, as they messed up on checking vit D last time. I had a battle with doc, the nurse added it to lab list, but in the end didn't do a seperate sample...oh my goodness! As soon as I realised vit D is needed so much (it's a kind of hormone) and has such a bearing on thyroid and bones and other processes, it starts to make sense...but test is pending yet. I never go in the sun though, as hate heat! Then it is balancing D3 with calcium, magnesium, maybe others and B12 needs balancing with other B vits and then some mustn't be taken at same time as others etc etc... lots to learn still, but I ask myself, if it is so easy to get checked and may require supplements, then I need to make myself do it....why have I only dabbled so far...because that overwhelming stress and tiredness makes it so hard doesn't it.

Your bone breakage is a worry, so I wouldn't like to say if it can be improved now, using strong vits ie but monitored by the docs of course! I have a friend, not on here, who has bone issues, but it all started with adrenals, then unable to make chemicals so likely addisons??? This with auto immune, osteo etc. He does get vit B12 injections which he says helps pain, so we are all only touching on our individual needs here. Now to go for it and give it time and see if any improvement. If my pending tests say I am ok for D and B12, I am going to make a conscious effort to keep on top I think and I am going to defo think adrenal and take more vits for that, it should help with stress levels. I have stopped buying ready meals, anything with additives...so my shopping comes from the fresh aisles, although there is more to learn on that too. This is it....must solidly do every little thing I can!! So I wish you well too and hope this site gives you the strength to try to do more for you ;)

Cherubhmm profile image
Cherubhmm in reply to storm

It's trial and error and I guess what works for one may not work for someone else! The human body is very complicated! I smiled when I went to the doctors here for the first time, having moved from the south west. There was a big sign saying take vitamin d supplements due to lack of sunshine!! Don't see that in the south west! I feel empowered and armed with questions for the next GP visit following the next blood test in two weeks time. I've decided to ask to see a different GP. I was wondering about Echinacia. I've taken in the past for sinus problems, flu etc with great success. I think it's supposed to boost the immune system. I wonder if it is compatible with the prescribed drugs thinking out loud!! I try and eat organically too. So many questions. I've rested a lot today and feel a bit better in myself for it.

storm profile image
storm in reply to Cherubhmm

Aww glad a little rest has slightly helped. I am getting the impression we are a little alike, ha ha.... I have also spotted contradicting stuff about echinacea etc, but my main theory at this precise time is get the main ingredients that the body needs and whilst bearing in mind, it is malfunctioning, so may or may not be able to utilise those ingredients, at least we will have it covered or ruled out. I have read the Vit D supplements look rather high dose........IF you are deficient, for years I would have said my diet would pass, even on fortified food...ermmm probably NOT the case then, as reading indicates, the body uses more and needs more once we have these conditions and if we can't absorb or have an imbalance, then it is harder work and maybe direct intervention...especially in B12, if injections needed for pernicious anemia etc, so I would be horrified and B12 injections and think ahhhh yeah I'll just take a little supplement, hmmm...my eyes are open now, lol. So tests soon, rule out deficiency or not..stick to plan if told deficient (I laugh hysterically, but must). Be aware of greens/goitregens in veg, can stop thyroid or levo working etc. So without being any expert whatsoever and without sounding too bossy, I need to take my own advice and am just starting and can only suggest to you, as others on here.... let's get the main ones cleared up B's Ds Iron (needs highish vit c etc) selenium via brazil nuts is my high hope of reducing anti bodies....I can hope! Omega 3 is another mention, particular type of fish oil, but don't ask me which, the idea is not to have too much omega 6...and so this goes on....ha ha :)

MaryMary profile image
MaryMary

Hi cherub hmm,

A few ramblings for you from my fuzzy brain. I've been on this site for a while now and many sufferers have had glandular fever in their past, including myself, so there does appear to be a link. It sounds like with your weight loss, anxiety etc. in the past may have been an over active thyroid which has now become underactive or possibly over stressed adrenals. Again you will find many people on this site have adrenal issues as well as underactive thyroid. Some people believe that fibromyalgia is just untreated hypothyroidism!!! An early menopause can also be triggered by untreated hypothyroidism! Do try and get all the tests done that others have recommended and keep reading, You will need time to give your body time to recover as it's been unwell for so long. If you haven't done so already, look at the signs and symptoms of hypothyroidism on the Thyroid Uk website and monitor how you progress with treatment. Most people recover with Levothyroxine (t4) but if you are one of the unlucky ones who doesn't then read on here for alternatives. Good luck and keep posting.

Mary

shaws profile image
shawsAdministrator in reply to MaryMary

Dr Skinner thinks there may be a connection also, between Glandular Fever and he also mentions Marathons too.

Cherubhmm profile image
Cherubhmm

Well oh my! That IS interesting! Thank you for your comments and advice.

shaws profile image
shawsAdministrator

Sorry you are not feeling so good. You will get support on this forum and we have all been in that situation at sometime or other.

Once you are diagnosed, unless you know someone in the same boat, it is a big learning curve to try to recover your health.

These are a couple of links re fibromyalgia. Unfortunately for us Dr Lowe died last year so is greatly missed. He ran Thyroidscience.com, Fibromyalgia Research Foundation and Dr Lowe.com. These are archived sites now and some of the links may not work. There are other topics at the top of the page.

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

web.archive.org/web/2010081...

If you are adequaely medicated you should begin to recover your health.

Cherubhmm profile image
Cherubhmm

Thank you very much. When I first started reading I was a bit overwhelmed by the information and the very fact that I had not quite understood the implications of the illness.

THANKYOU for the links re fibromyalgia. I will check them out. I look forward to feeling somewhat better in the future!:-)

storm profile image
storm in reply to Cherubhmm

Exactly what I am feeling and no doubt others! Overwhelmed, hunting for more and more info, one search leads to another, more confusion, some ideas are gained though and if it is a fairly simple sounding supplement, as long as you get good support from a professional to make sure you are safe to take say higher levels, then until we solidly try the simpler things, we don't know if it will help. GPs are conventional and mine only told me Levo for life and nothing else.....that is fine for them to say, so the rest I am learning from this site and general research. I am still wanting answers and can't back down, I want the cause found and sorted, I want the auto immune to stop. I have very emotional days....... and I can now say, let it happen, mustn't beat self up, I wonder if it is mainly A type personality that gets these illnesses, people that overwork themselves??? I've never been one to relax, somehow can't! My days are sleep as suits, then do little or as much as feel able, then sat down again and even stopping the work pressures, altho money is a worry...has helped a degree :)

Cherubhmm profile image
Cherubhmm in reply to storm

I think that was what got me really down..kind of shock..the thought of taking medication for the rest of my life! I felt 'all down here from now on' and ' oh no, not something else!' Emotional days? ME TOO! In fact I wonder how the other half copes some days.:-) when I had a lot of counselling I was told to take each day as it comes and act accordingly..so if I felt tired..sleep and rest. If I felt anxious or stressed do something to distract myself. Like you, I spend a lot of days doing what I have to, or able to, and then I rest and do things that don't take much energy. The inability to sleep at night is a pain and no relaxation techniques seem to help for me. The fibromyalgia in my legs plays me up a lot at night. I have made progress tho with that ..in relieving stress and anxiety somewhat, somedays. My mobility is a little improved. I can't imagine having to have to work when feeling so bad. Being a full time carer hasn't helped me much..I have to really push myself to get things done for my son..he is still young.

storm profile image
storm in reply to Cherubhmm

My sentiment, I was and still am horrified and haven't started levo yet, but don't take that advice from me! I will start if I can't fix self, but after finding if deficient in the coming weeks, as I can't stand feeling like this for much longer either! I gave myself a time limit of a year to try to fix self and haven't done that great really, just a little better than at the start on some things. You have it tough as carer and it would be wonderful if it was just a B or D deficiency, but adrenals is a major topic and they recommend on some sites on internet ensuring they are supported before starting levo, this is something else to find out, for yourself. My GP has no interest or knowledge in this and I have seen several other docs. But regardless on your decision to take the levo or not, once clarified on your own needs (as I am not able to advise you), just keep looking at the whole body, even if you have the reiki and even herbs or any other alternative therapy, the stressed body still needs all the right ingredients, in the right balance, to work together, ongoing and this is the one area I really must work on...I must, I must! Lol first things first :D

Cherubhmm profile image
Cherubhmm in reply to storm

I decided just to give the medication a chance. I will say..I feel a little calmer, altho still teary, and the dreadful palpitations ..well I haven't had ANY for a week..that is unusual. No racing heart either. However, it may be because I am 'thinking' the medication is helping. I'm just pleased to have the relief! We have to keep our chins up and carry on carry on carry on!:-)

storm profile image
storm in reply to Cherubhmm

Bravo on your decision and excellent the palpitations have calmed! :D The medication might be working, we have to think positive. Every single improvement gives the strength to carry on. Rest well and good luck on your journey :)

Marz profile image
Marz

.......maybe take a look and read through some of the tags on Hashimotos or Auto-Immune issues when you can concentrate. Click onto 'See More Tags ' top right of this page.

There is strong evidence indicating that the HEALTH of our gut is the most important thing and an unhealthy one can cause endless problems.

drmyhill.co.uk is a good place to start and the book 'Gut and Psychology Syndrome' - written by Dr Natasha Campbell McBride is excellent.

It is a long journey to find wellness and contains many blind alleys - so read as much as possible and learn from the many excellent people on this site.

I am not a medical person but was diagnosed with Crohns over 40 years ago and Hashimotos in 2005 - so have learnt a thing or two along the way ! Sometimes illness can be a gift as I was only 27 when I was diagnosed with Crohns after Ileao-Caecal TB and quickly learnt about Gut Health, B12 etc. Was a young Mum at the time so it was quite a struggle.

Am pleased to report that I have learnt so much from others on this site which has improved my health - but yes at 67 I am still on my journey !

Good Luck ......

Cherubhmm profile image
Cherubhmm in reply to Marz

Concentration..what's that!?!:-). Long to have that back! Yes, I will do. There is so much information to take in. I don't want to overload myself..keep it simple for now..but yes i had already 'picked up' on the 'gut aspect'..I had before my diagnosis started myself on probiotic foods. It's all very interesting. A lot of learning ahead!!

tdcco profile image
tdcco

I am sorry to hear you are joining the "club". Despite many years struggling with this condition myself do not despair, the fact is you now have a diagnosis and are being treated. Over the years I have discovered scores of people with this condition who have absolutely no problems and are mediated well. More in fact than do have problems. Make sure you get an endo who specializes in thyroid as my experience is that most specialised in diabetes. Well good luck and lets hope you will be one of the lucky ones. Anne x

Cherubhmm profile image
Cherubhmm in reply to tdcco

THANKYOU. I'm trying to be hopeful, yet aware of the potential problems. What is an endo? Thus far I've just seen a new GP, having moved to a new area. It is difficult changing GPs, especially when I've been used to one who was extremely supportive and caring. What a club to belong to huh?!:-)

tdcco profile image
tdcco in reply to Cherubhmm

This can be a horrible condition there is no doubt and this site is perhaps a bit scary for a "newbie" and now that you are diagnosed you will come across unbelievable amounts of people who you had no idea suffered with thyroid conditions. I found that members of my family and close family friends had been mediated for decades without anyone knowing and they all kept well. If you find that you not getting back to normal health with adjustments to your meds, and remember you will have to find a balance for you, ask your GP to send you to an endocrinologist. That's the endo I mentioned. He looks after all the endocrine systems of which there are a few, the more common one you'll know of is diabetes. There is the problem and why I said ask for a thyroid specialist. Most endos I have come across specialised in diabetes. If you are at all unsure try speaking to your doctor there are good ones out there but do not be afraid to stand up for yourself if you should have to. There is light at the end of the tunnel for so many people. Anne x

Cherubhmm profile image
Cherubhmm

Thanks. The more information the more empowered you can be huh. Today I've had reasonable energy but have been low in spirit and teary. I have two very busy days coming up and I think I am fretting about it as I know how tired I will be. When I say to my sons I am tired they say "so am I"! I guess it's best not to say anything and just get on with looking after myself. The most exhausting thing is being a carer for my youngest on top of this. It is physically and mentally exhausting. I don't know where I stand with help. I get DLA for him at the top rates and carers allowance. That doesn't help my ability to care properly for him tho. The future is a concern but I guess with the proper treatment I will feel better and more able to cope with day to day living. Thanks. I'm amazed at the lovely responses I've had and the support. It does help.

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