Help and Support Needed

Hi All, this is my first post and I am hoping someone out there may be able to offer some support and reassurance. I apologise for the lengthy post - here's my story:

I am a 28 year old female and three years ago my health started to deteriorate starting with a weight loss of 2 stone in 2 months, I went from 9 stone to 7 stone, then I began to get extreme tiredness not being able to get up in the morning and falling asleep in the day. I went to the doctors where they did the first of many blood tests. my results showed an under active thyroid although the weight loss didn't fit with the symptoms. I was started on 50mg of thyroxine, I lost even more weight and got to the point where I couldn't get out of bed at all, I lost my amazing job that I had worked so hard for. my dose was increased to 75mg and at this point i couldn't walk straight i felt that dizzy so after three months I stopped the medication on the advise of my doctor and tried to get on with things.

Fast forward a year and I was no better, I was going through each day with my symptoms getting worse however, each blood test I had ( every 3 months ) was showing normal thyroid function! I was made to feel like I was going mad and imagining all these symptoms!

In December last year after two years of suffering things got really bad. whilst on holiday sat in a busy restaurant my throat felt like it had completely closed up, I couldn't swallow or speak, this resulted in me having a major panic attack, unfortunately the first of many. Once home I was admitted into hospital where I was told I had anxiety, brilliant I thought, not the best diagnosis but that would explain everything that had ben happening over the last two years! I started on Citalopram 10mg, after three months nothing had changed and even more symptoms started so the doctor took me off them.

Two weeks ago I went to see an endocrinologist at the hospital, they told me my thyroid tests are showing as underactive and that i have a large amount of antibodies, he suggested that i start on thyroxin again however, my weight is currently 7 stone and i can not afford to lose ant more weight as i did last time. i am also waiting to hear front he hospital as they wanted to take another set of tests while i was there as they too were concerned about the weight loss.

I am at a point now where i feel very confused as i don't know enough about the Thyroid to fully understand if my symptoms are correct for an underactive thyroid. the consultant was not very informative and did not explain the details about the antibodies very well.

I am really in need of support at the minute from someone who understands, i am fed up and desperate so is there anyone out there who can help me?? i have listed below my current symptoms:

A felling that my throat is closed up

Swollen neck on the right side

Hair loss

Tight chest and palpitations

Extreme tiredness ( need to sleep halfway through the day everyday )

Getting angry and frustrated which usually results in crying


Blurred vision - i have recently had to start wearing prescription glasses

Numb feet and tips of fingers

Dry skin

Muscle ache and cramps

Waking up in the night drenched in sweat

Always cold

Forgetting things - i have started to forget words whilst mid sentence!

22 Replies

  • Definitely Hypo, but if Hashis is swinging you about you may get hyper symptoms too.The docs probably don't know where you are either, so you do need better management. Many here get referred to specialist Docs like Dr S and D-P who have experience beyond the average GP. Levo is not tolerated by many, inc. me!

    There are alternative treatments -and cutting out wheat and gluten is a good early move you can make to assist.

    I hope you'll get further comment- but you must post your blood result numbers [and ranges too] to help get useful responses.

  • Sounds hypEr to me. Exactly the same symptoms as me and I have Graves' disease. Have they tested you for Hashi or Graves? The thing with thyroid is, and you'll learn quickly, endos are supposed to be the experts but half the time they are as baffled as us!!! Time to get demanding! Demand to be taken seriously. Demand every test and make sure you are listened to and not fobbed off. Any illness to do with thyroid is bad because it controls a lot of stuff in your body so you can seem like a hypercondriac but it's all down to the thyroid.

  • Same here - I have Graves and had most of your symptoms. I wasn't particularly cold when I was hyper but I certainly couldn't regulate my temperature so I was either too hot or too cold, when I became hypo after taking Carbimazole as part of my treatment I was really cold all the time it went right to my very core and generally when I need an increase in levo I feel cold like that again.

  • Poor you! I dont know if I can add anything to what tegz has said but I think looking into a specialist in the field is a very good idea... ask your dr for a referal to dr skinner... not free but the best investment you will make

  • Hi who's this Dr Skinner? Does he have a clinic and whereabouts? Do you have the address? Kind regards

  • He is situated in kings heath, Birmingham... u need a referal from your dr to see him but that doesn't tend to be a problem... just say a friend recommended him... they should be able to find him on that info

  • Thank you x

  • No problem

  • Hi Gem85, so sorry you're having such an awful time, but you've come to the right place! There are some very knowledgeable people on here, and you'll also get lots of support. There's also lots of excellent information on the Thyroid UK website and Thyroid patient advocacy (tpa-uk) website.

    It's such a complex condition and everyone is so different, but you definitely sound hypo.

    You're not going mad and there is hope. Its a case of getting/finding the right treatment for you, and this is probably the best place to start :-) x

  • Am so sorry that you have had to wait so long for your diagnosis. What a great shame your GP did not test for anti-bodies at the first test three years ago. With Auto-immune Thyroiditis - Hashimotos - you can often swing from Hyper to Hypo. Think I was more Hyper when young and then as the thyroid becomes exhausted it becomes Hypo.

    As Tegz says we need to see your blood results and the ranges. It could be that your FT3 is low. With Hashimotos you will also be LOW in the following - VITD B12 Ferritin Folates Iron. The GP's are happy if they are just in range - but when you have an illness they need to be near the TOP of the range.

    Also you could have Adrenal issues as they may well have become stressed with being poorly. So really it's one step at a time.... take a look at! where you can learn about Izabella Wentz and her battle with Hashimots. It's best to think of yourself as having an Auto-immune issue rather than a thyroid problem. Healing the gut is the most important thing. She has also written a good book - Hashimotos - the Root Cause.

    Wishing you well - and will look out for your next post. Please ask if there are any questions you would like to ask. I was diagnosed with Hashimotos in 2005 - now 67 and doing so much better with all the fine tuning I have learnt about on this forum. I also have Crohns and FM - survived endless ops and like you my working life was compromised by illness. Things will get better but there is no quick fix.....

  • Sorry, I also meant to say that if you are deficient in certain vitamins/minerals that can have a big impact too. Its a good idea to get vit. B12, vit. D, iron, folate, ferritin, calcium checked (there may be others I have forgotten but am sure someone will correct me :-) ) Maybe also see if Dr will check your adrenal glands as that is another factor that can affect people with thyroid issues and symptoms are very similar. Sorry to bombard you with information!

  • Another sorry story. It is awful when we are left 'to get on with it' when we previously relied on the doctors to tell us what is wrong. Obviously with your weight loss there should have been cause for concern and more investigations earlier. Unfortunately there seems to be a lack of knowledge by most GP's on thyroid gland problems and they pronounce 'normal' when the TSH is within range despite the patient being anything but and also they don't know that clinical symptoms (they don't know them) should be a priority rather than the blood test.

    Your symptoms above do sound hypothyroid and some people do lose weight with this condition. Although weight gain is more common before diagnosis and for some people when not on optimal medication.

    As stated in the comments above, you may have swung from hyper (lost weight) and hypo so maybe it was not levothyroxine which caused the initial weight loss.

    Now you are being seen by an Endocrinologist let's hope he/she is excellent. Always get a copy of your thyroid gland blood tests from your GP complete with the ranges, so that you can post them when next you have a question and you will get responses.

    Best wishes

  • I do sympathise- I have had/having all of your symptoms bar the weight loss ( I put weight on , even in Levo). I agree with what everyone else has said - make a fuss,change GP if necessary, get tested for both types of antibodies ( GPS usually only test for one) find a good Endo, if you can afford it get a saliva test from Genova for adrenal fatigue. The NHS don't do that sadly. Thyroid UK website has a list of experienced practitioners they can send you - that's how I found mine. The GPs - even if they have an interest in the subject, just don't seem to know enough, let alone have the time to sort us out.....My present GP is great but knows nothing about natural thyroxine but is very happy for me to use it and see a private doctor with experience of it. We are working together, although I do have to pay which is hard. I am very angry about the thousands it has cost me over the last 20 years because of poor or non-existant treatment by the NHS. Good luck - chin up. You can sort this - but it will take time.

  • hi exactly the symtpoms I have but so far my DR refuse sto recognize anything other than fibro despite having symptoms of lupus and thyroid.

  • Hi there Gem85

    I just wanted to re emphasise something that is always being advised here....that is to ask at your surgery for printouts of all the tests that you very vital in order to be able to post your results along with the ranges to this site.

    So sorry you have been having such a bad time ,but there are many people here who with the relevant information will do their best to try to help and support you.

    Good Luck X

  • I had all of this. But mine is graves & hyper. Sorry I can't help BUT many times I have had extreme hypo symptoms and 'normal' levels. It's a mystery to me. I lost four stone and ended up in hospital before they would listen to me. It shouldn't be this way but look through this site and you soon learn that nothing is straight forward with thyroid disease. The guys on here know more than my endo so you are in the right place ;)

    It takes time and there have been plenty of times I have felt my life was worthless because of this but you WILL feel better I promise. X

  • I'm hypo,

    My Dr says in NORMAL RANGE, pah, never felt this bad when I was NORMAL. !

    I'm so tired, I had to fight to get a full panel of bloods, as the other guys on here say, dig those heels in, I sat in front on my GP and said " I'm not shifting till you do full bloods" got it. Now I need to up it a bit, but I'm going to have to fight that one as well. I'm ready for it, bt she's not tho ! Hehe he. Be polite, but stubborn, do a bit of Reasearch and don't budge. I said to my GP it's ok for you, you o home and forget about me and your day, I don't ive got to live with this. Not budging love. Xxxx good luck, you have suffered far too much already x hope you feel better soon Gem. Xx

  • Hi Gem,

    There's some brilliant answers here. Not sure where you live but it sounds as if you could do with someone to go to GP/endocrinologist who is on your side. I would say that while you are so unwell and distressed you will not be able to put your case over. Please try and write it down in as chronological order as possible and keep this up with ever medical visit. Have questions ready when you go and get someone with you who has pen and paper - it is remarkable how doctors sit up and take notice when someone is taking notes. It also helps because you cannot take what they are saying in at the time. I had hyper, yours sounds very much more complicated and someone needs to take what is happening to you seriously x

  • Have the docs ever tested for vitamin deficiancy, maybe b12

  • Gem85 I wish there was someone out there that could help with thyroid. I am so fed up. I am sick and tired of having blood test after blood teset and to be given the same anwers for the last 6 years - especially when you know you are not well. Waiting for the result of my last blood test which were done last Thursday. What I cannot put in the doctors head is that since I have been diognise with underactive thyroid I have not been well. Lump on the right side of my throat, fingers and feet joints aches, my muscles aches, heavy sweat at night, put on weight which depresses me. No advise from my gp at all......

  • Wow thank you everyone for the replies, I did not expect this many responses!

    I will definitely be asking for a copy of my blood results from my GP when they are back, its been two weeks now since my last lot so should be any day now.

    In regards to vitamin deficiencies I have been told to start taking Iron, Vit D and B12 supplements but need to wait for my latest results to come back.

    I am based in the Midlands so I am defiantly going to do some research about Dr Skinner, I do feel at this point that I will pay any amount of money of it means getting this sorted out and getting my life back!

    I have not been tested for Graves or Hashi so I will have to put this on my list for my next doctors visit - I have also just received another hospital appoint through for November with the same Endocrinologist , this appointment has come through before my blood test results, this has annoyed me as they are once again just fobbing me off with an appointment/check up every three months!! I'm not even on any medication at the moment so what exactly are they checking up on!!

    I have started to look at alternative treatments such as cutting certain foods out, the funny thing is my Doctor told me to eat lots of greens everyday which I have been doing including cabbage, kale and Brussel sprouts - I have since found out that these greens affect the Thyroid producing something ( not sure what ) so that advice was pretty useless!

    A few people have mentioned Adrenal Fatigue and having a test done for this so I will also put that on my list for researching!

    I have received so much more information from you guys than I have front he "professionals" in the last 2 years so thank you all so much!!

  • Oh my goodness!!

    You have just described all my symptoms, it could have been me writing this.

    You have all helped and made me realise what is wrong with me.

    I was diagnosed with hypo nearly 2 years ago but have never felt 'right' and lost lots of weight (an added bonus for me) but was always puzzled as you're not supposed to with hypo.

    So what now? Back to the docs I suppose to be referred to a decent endo consultant. Anyone know of any down in the southwest (Cornwall) please?

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